Diagnosis: Hyperaldosteronism (Conn's Disease)

A change in N.A.D.F. Conn's description

2012-01-19T09:34:00.000-08:00

When I was at my sickest, I was desperate for whatever information I could find. I went on every site that had the word Hyperaldosteronism in it. What I found was a lot of confusing sites that had brief symptoms listed, namely that this disease only causes high blood pressure and lowered potassium levels, for example on the National Adrenal Disease Foundation's site (N.A.D.F.). This frustrated me a lot as I had so many other symptoms like migraines, severe fatigue, brain fog, numbness in limbs and concentration difficulties. So why are these so-called professional, medical sites not better researched and written? And what's with the N.A.F.D.? Shouldn't they have the full picture on adrenal diseases?

Yes, I believe they should. And so I did something about it.

Last month, I contacted Dr. Paul Margulies, chief endocrinologist at the N.A.D.F. and asked him to please change the symptom description for Conn's to reflect the reality of the disease. The following is a response I received, January 5th:

Dear Ms. Langrall,

Thank you so much for contacting the National Adrenal Diseases Foundation (NADF); a non-profit organization dedicated to providing information, education and support to persons with adrenal disease.

Your e-mail was presented to Dr. Margulies, and at your urging, he reviewed NADF's 'Hyperaldosteronism: The Facts You Need To Know', and made some changes. The text file of the revised NADF hand-out is attached in PDF format.

If you would like NADF to have detailed informational items for hyperaldosteronism, feel free to author something, and after it's presentation and okay by Dr. Margulies, we feasibly might add it to the information we display on our website and distribute to patients. Thank you!

And thank you so much for your activism on hyperaldosteronism patients' behalfs!

Also attached to this e-mail, please find copy of our latest newsletter (membership application on the back page). If you choose to join NADF, you will automatically receive a copy of NADF News® quarterly.

Thank you again for contacting NADF with your concerns! Best of health and luck to you.

Melanie Wong
Executive Director
National Adrenal Diseases Foundation

Sadly, they did add the other symptoms, but also stated "MOST" patients did not suffer from these. I intend to respond and ask for the word "most" to be replaced with "many". The number of people that contact me on this site have suffered too much not to be listened to.

While the new description is not perfect, it is an improvement. That they actually read my letter and responded to my complaint is encouraging.

One thing to take into consideration when visiting the N.A.D.F. site, is that it was started to help Addison's suffers. There is more information for them than the Cushings and Hyperaldosteronism (Conn's) folks. This is very common. I believe we will see more Conn's cases in the coming years and by then, hopefully, there will be better guidelines and information.

Special note:
I started this blog because of the lack of consistent information so I could help others who are also on this incredibly difficult journey. I plan to continue posting and providing support to fellow Conn's patients. And I will contact as many sites as I can to make sure others don't have to feel like something is wrong with them due to inaccurate descriptions.

Hypoglycemia

2011-11-26T10:03:00.000-08:00

Aside from Conn's, hypoglycemia is a condition I was diagnosed with back in Baltimore several years ago when I was dealing with Conn's. The doctor who told me I had it didn't fill me in on all of the symptoms, he just kind of lumped them all in with Conn's and told me to always eat regularly if I felt weak or like I was going to pass out. He never went over all the other triggers, which could have saved me from some dangerous situations.

Once again, this is where you have to do your own research. I wish I had, but was so consumed with the problems I was suffering with Conn's, that I couldn't tell what symptom was causing what. Most doctors I saw thought Conn's was the culprit that was robbing me of stamina and doing strange things to my head. Things got so tricky with feeling horrible that I never looked into the fact that hypoglycemia could have compounded the symptoms of Conn's. Conned again, it seems.

The definition of Hypoglycemia is insulin shock or Low blood sugar. Insulin is a hormone that reduces blood sugar. It is produced by the pancreas in response to increased glucose levels in the blood.

Blood sugar below 70 mg/dL is considered low. Blood sugar at or below this level can harm you. And I am lucky to be alive after having some really scary episodes of this.

The most common causes of low blood sugar in people without diabetes are:

Insulinoma - a tumor in the pancreas, produces too much insulin
Skipping meals
Waiting to eat your meals, or eating at off times
Exercising more or at a different time than usual
Drinking alcohol

Symptoms you may have when your blood sugar gets too low include:

Double vision or blurry vision
Fast or pounding heartbeat
Feeling cranky or acting aggressive
Feeling nervous
Headache
Hunger
Shaking or trembling
Sleeping trouble
Sweating
Tingling or numbness of the skin
Tiredness or weakness
Unclear thinking
http://www.blogger.com/img/blank.gif
Sometimes your blood sugar may be too low, even if you do not have symptoms. If your blood sugar gets too low, you may:

Faint
Have a seizure
Go into a coma

After finding a great doctor (Dr. Erica Elliott-she is fantastic) in Santa Fe, who has educated me, I am learning so much. But I had to go through some hellish situations before I found her. For years, I have had weird problems like: feeling like I'm going to pass out while driving, almost falling asleep sometimes when I've had plenty of sleep the night before, crashing big time after eating sugary foods, and feeling out of it sometimes after only a few sips of wine (this doesn't happen every time, but am noticing stress and lack of food can make it worse).

My mother's genetic counselor believes my maternal side has a genetic mutation of the endocrine system as we all have auto-immune diseases http://www.blogger.com/img/blank.gifincluding: diabetes, thyroid cancer, hyperaldosteronism (Conn's), Alopecia, Graves disease and Shingles. It's definitely curious.

Regarding my own endocrine disorders... hypoglycemia mixed with Conn's had me teetering in dangerous territory. After being educated by Dr. Elliott...everything has changed, including: my diet...I'm starting to learn so much more about my body, and fight or flight responses mechanism.

If you suffer from hypoglycemia as well as Conn's, I would be interested to hear from you. I know since my surgery, this condition has appeared more frequently, am unsure of the correlation with having only one adrenal gland. If only there was more research and data to help guide us through these often stormy hormonal seas. Living with one adrenal sometimes is effortless, but other times the stress can level you.

Almost 3 years after surgery....

2011-11-16T17:46:00.000-08:00

...and yes, the hypertension is gone, the potassium is pretty good most times and I am physically stronger. However, this past year has been quite challenging health-wise.

After moving to the southwest from the east coast to "heal" more from surgery, instead of continuing the healing process, I've ended up becoming sick at least five times. Perhaps the altitude, perhaps the dryness, but I've had four sinus infections, bronchitis and a case of pneumonia in early October. And now I find my sodium levels are off, electrolytes mixed with estrogen imbalance + Hypoglycemia = daunting and scary at times.

When I moved from my first house rental in August 2011, it was discovered that there was black mold in the bathroom, which can be deadly for a person with an auto-immune condition. It was there the entire six months I lived there, which is probably why I had chronic sinus infections. I had no idea black mold could survive in a desert. But it is pretty prevalent here.

The good news is I FINALLY found the right doctor, an environmental family practitioner who specializes in auto-immune, adrenal and rare diseases, like Conn's Syndrome. Her name is Dr. Erica Elliott, and she practices in Santa Fe, NM. I went to see her for the first time in September, and she understood exactly what I've been through with Conn's and hypoglycemia and hormone imbalance. She also has a lot of experience with the effects of toxins in the home and is helping me get through my symptoms. Thankfully, she is aware that living with one adrenal gland is a difficult journey at times.

As far as the electrolyte/hormone/hypoglycemia issues, Dr. Elliott is treating me with supplements and has put me on a strict diet...no yeast, gluten or sugar. She's informed me alcohol can be deadly to me. I only drink wine, and after a glass, maybe two at the most, I've noticed sometimes I crash and am majorly out of sorts, especially if I'm dehydrated or don't eat. I had no idea how bad hypoglycemia can affect me and had a horrible experience at the end of October with just two glasses of wine. I now realize no more.

So, my life is changing still, even after all this time. I am learning what works, what doesn't. Those who have had the surgery to remove the tumor and are thriving make me happy for them. But so many have contacted me and told me they too are struggling with other problems. Your surgeon will say you are cured, but they don't know what's in store after the adrenal is gone. Little information available here. It's seems we are learning as we go along. I thank God I found a smart doctor who researches.

Dealing with one adrenal is unknown territory, but achieving balance in my body, mind and soul is my mission. I think Dr. Elliott will get me there, but know I still have a lot of healing to do.

Conn's story in Harmony Magazine, January 2011 issue

2011-02-20T20:20:00.000-08:00

A new lifestyle magazine called, Harmony, is on the news stands in high end health food stores such as Whole Foods and Sunflower Market, as well as Wal Mart. Harmony, geared towards working women, gives tips on finding the balance in our lives to focus on body, beauty, fitness, family, and food. There is also a section on health, and I was interviewed to discuss my journey with Conn's disease.

Unfortunately, the magazine is not on-line, so you have to purchase it to read the article. On page 94, under the title "Medical Mystery Illness," I discuss my adventures with this rare and frustrating disease. It was great to be able to speak honestly about a hormonal illness so few doctors understand. Hopefully it will help anyone out there questioning their symptoms.

Buy it and spread the word!

http://www.foliomag.com/2011/source-interlink-expands-womens-market-new-magazine

Two years after Surgery

2011-02-09T17:27:00.000-08:00

It's almost two years since the adrenalectomy. I've received numerous inquiries about how I feel and handle stress, so I am dedicating this post to those questions.

I'll start by saying I have nothing but gratitude for having the opportunity for surgery. I am off ALL meds (I took 7), and my life has improved substantially. If anyone reading this is on the fence about surgery, I say do it. I may have one adrenal gland, but I am more active now than I was while I had Conn's. I feel like I have a second chance. And I intend to live my life cleaner, healthier and smarter, and so far, so I have been. Yet... there are limitations, and I believe I will have these for life. So I take the good with the bad as long as the bad doesn't involve a hormone called aldosterone.

Now about the stress... as many of you know there is little information about Conn's out there, but there is even less information on life after Conn's and surgery. I have asked doctors and visited all sorts of sites to see what a mono-adrenal life will be like, and guess what? No one knows for sure. Doctor's say there is no problem, but without medical documentation, they really don't know. We are indeed a special bunch.

Here's what I can tell you from my personal experience, emotional stress is harder for me to tolerate than physical. It may be the reverse for others, but I have found when dealing with irate people or those looking to pick a fight, I tend to walk away (flight is better than fight). The past few years were filled with stress, especially with my family. Last fall was a very difficult time for me, I was trying to fix up and sell a house in order to relocate to another state, all the while taking care of an aging parent who was ill. I had a sibling who insisted on making everyone's life miserable through abusive bossiness. After endless interactions left me completely fatigued, I realized I had to subtract myself from the equation in order to take care of my emotional and physical health. So I stopped dealing with her and focused on the care of my parent and my life. It saved me from further anxiety and losing more days catching up to a normal level of energy. Avoiding certain conflicts to survive is the best way after going through six years of stress in getting a diagnosis.

So, do we have to perpetually fly away from all of life's turbulent winds just to survive? I don't know. But I can say getting out of emotionally stressful situations is what I need to do NOW. As much as I want to handle stress and tell bullies off, I know my body can't take it. I also know this is a very isolating disease, most people simply can't understand the effects it has had on us. I am lucky to have a very special man in my life that has been there through thick and thin, when my family wasn't. Confiding in a someone you know you can trust is crucial to healing. I highly suggest this for anyone with Conn's. You NEED to have a supportive soul present.

Now the physical... I work out almost daily and feel stronger each week. The down side of this is: I relocated three months ago to a location 7000 feet above sea-level, so altitude adjustment has played quite a role. I started to feel like the old Conn's days and got very depressed. Sometimes, even just walking has been exhausting. But the longer I'm here, the better that gets. If I feel shaky on the treadmill, I simply get off and go home. But for the past month, I have had incredible energy and am feeling more and more like my old self. I still need to lose weight, but I attribute this more to the incredible food in New Mexico than Conn's!

Hopefully some of this helped those of you about to go through surgery or are on the mend. I hope and pray through time, I will be more equipped at dealing with emotional stress. It can be hard on the ego leaving in the middle of something that goes against your moral grain. But maybe that too is a part of the journey. Having this disease changed my life in ways I have a hard time expressing. I can only hope my words here help and something is learned by us all.

WBAL TV-11 Baltimore television interview: Conn's Disease

2010-10-24T21:20:00.000-07:00

Last week, WBAL TV-11 in Baltimore, MD, did a segment for their Woman's Doctor Program featuring my experience with Conn's Disease. I hope more Conn's survivors will come forward to tell their stories in the future--I believe there are a lot more of us out there than is believed.

http://www.wbaltv.com/womansdoctor/25429737/detail.html

https://mail.google.com/mail/?ui=2&ik=55d4692dc0&view=att&th=12be9011f1d029c0&attid=0.1&disp=attd&zw

Mystery Illness from the New York Times Magazine, 9.12.10

2010-09-14T18:34:00.000-07:00

There was an article in the NYT Magazine last Sunday that caught my attention. Entitled "The Heat of the Night", it dealt with the journey of a man who suffered from a strange nocturnal fever and unexplained weight loss. Doctors visit provided little help as the patient became more confused and concerned. Sound familiar?

Finally, a tumor showed up on a CT scan. Unfortunately, his symptoms were incongruent with type of tumor that was diagnosed. To learn more about his "mystery illness" and ultimate prognosis, go to:

http://www.nytimes.com/2010/09/12/magazine/12FOB-diagnosis-t.html?ref=magazine

While his condition is unrelated to Conn's, I found similarities in his frustration with getting a proper diagnosis. It only goes to show we are not alone. And that reaching out on the internet through blogs can save lives.

A year and a half later...

2010-06-21T13:42:00.000-07:00

It's been well over a year since the angry adenoma that wreaked havoc over my system was destroyed by my evil-slaying surgical hero, Dr. Armando Sardi. So much of my life has improved since then as I continue to reclaim my energy and enthusiasm daily, in larger and larger spurts. But there is still something that I deal with that lingers inside, and as much as I feel better physically, I haven't seemed to kick this particular side-effect. Residual depression.

I can thank more than a few of my fellow Conn's survivors for coming out to me here on this blog and on the support sites for making me face this condition. Because of their openess and honesty, I felt compelled to address the problem of survivor's depression or lingering sadness that results after a major surgery. Conn's, in particular, is a disease that effects so much... from brain-fog to memory loss to chronic fatigue...it can leave the patient feeling very low and confused. I can't count how many times my confidence was tested at work and at home. My family thought I was crazy, as did my employees, when on a daily basis, I became confused, forgetting dates and information that was essential to running a business. My belief in myself plummeted a bit, so did my motivation. Now that I can focus and retain detailed information once again, I feel much better, but this change did not take place over night.

If I do the math correctly, I had Conn's for over eight years. That's eight years of walking around in a fog, suffering severe fatigue, feeling hyper-sensitive and ultimately feeling embarrassed of the forgetfulness that became so ritual.

Electrolyte imbalance, that's what living with Conn's does to you. It sounds easy enough to fix--drink some Gatorade, eat loads of bananas and take potassium supplements, but as we know that doesn't cut it. Having such an imbalance creates the same in all areas of your well-being, from the physical to the mental. In an early posting on "Tips for living with Conn's", I mentioned getting on anti-depressants. While I went off them after surgery, I'm still not 100% "there." They helped during a difficult time, and now I feel more myself--but not completely yet.

At this point, I still remain very positive. I don't look back and never, ever do I beat myself up over the mistakes and short-comings from Conn's "hormone wars." Bouncing back from any surgical procedure can take time, but for my fellow P.A. peeps, ours will be a recovery filled with much self forgiveness and patience. I believe the depression will disappear completely with time. For now, I move forward with the big plan, focus on all the good things I have in my life, and thank God that I am able to coherently write, educate and help others who have this confusing, destructive disease called Conn's. And yes, I refused to be conned by Conn's.

Some post-surgical questions and observations~

2010-04-26T15:37:00.000-07:00

Although I am clinically "cured" of Conn's syndrome, I still have so many questions. I'm sure a lot of you that have taken this unfortunate journey do too. It would be easy for me to just walk away from the support sites, including this blog, but I don't think that's the right thing to do. So I will continue to write updates and post anything relevant to this disease I come across.

A question I have is fatigue... I still have it here and there, and am wondering if it's authentic or depression related. I've had a lot on my plate with caring for an aged parent and the typical work/life issues, and so I wonder if it's a heavy plate or mono-adrenal related. The problem becomes convoluted in that for so long, fatigue was a part of my life, and I wonder if it is here to stay or just a lingering side-effect.

I seem to get more fatigued when it rains or the barometric temperature drops. If I do strenuous activity, I require much down time to recoup. I had anesthesia twice within four months which is also a concern. If anyone else has experienced this complaint after surgery, I'd love to discuss.

A few other post-surgical observations are food/alcohol related. Sugar is a major problem--I can't process it well, same goes with alcohol. If I have a drink or two socially, it feels like three. This makes me wonder what role my mono-adrenal gland plays in this, if at all. Same with coffee, it can effect me badly with nausea and crazy jitters. As a coffee first thing in the morning girl, this kills me the most! I have limited it weekly to four cups down from seven.

As far as eating in general, this is weird, but I find I have to eat every 3 hours or I feel jittery or pass-outy. I really want to know more about all this; I intend to ask my g.p. next week when we have our appt.

To some, these concerns may seem mundane in comparison to the big pay-off that erased the larger, meaner symptoms. And they are, but mustering up energy to go about business as usual can at times be difficult and the food thing is just odd. Before, I could handle all of the above mentioned things better (prior to Conn's), now I am expected to be super-woman, thanks to my surgeon who assured me I would. However, since these are my personal physical symptoms, I know not everyone who has been through surgery will relate. BUT, if you are reading this and can relate, please, please, please... let's talk.

As far as living with one adrenal gland, all I hear from doctors is it's ok, don't worry, your other one will take over. But no where can I find long-term outlooks with living with one adrenal. What will happen when we get old? I just want to be prepared and educated, that's all.

Lastly, I wonder what it's going to take to get this rare little disease more attention. In my heart and my head...there are thousands more Conn's sufferers who are being mis-diagnosed daily (as most of us were initially). A friend who works at a hospital gave me a recent report on Conn's as an epidemic. And as usual, the final word is many doctors are unsure if it is or not. While there is a severe increase of sudden on-set hypertension in younger adults (ding, ding ding!), doctors who are supposed to suspect and check for hyperaldosteronism are not. And since it's such a tricky disease that takes prolonged testing, many (read: most) doctors disregard this and just don't--like mine. So where does that leave all of the Conn's suffers in the world? To the internet to self-diagnose, and if they are lucky like me, they may find a doctor who will listen to them. It's unfathomable to me that it has to be this way.

In the meantime, Dr. Oz may be receiving a letter from this ex-Conn's sufferer. I find it unlikely he will do a segment on Conn's because it's so rare, and he seems to focus on popular illnesses and conditions (like obesity). Again it's the catch 22--we need exposure to get more people checked, but who will take the first step? Well, you have to have hope, and maybe just maybe, if more people start coming forward to openly talk about Conn's, perhaps the major players will finally listen. And do more research.

As always, I appreciate your comments and well-wishes. For all of you out there living with Conn's, please know the positive has vastly outweighed the negative regarding surgery. I feel tons better and no more high blood pressure-which is huge. These little annoyances are small things compared to the endless gratification I feel daily. Please know there is life after this insidious illness.

Peace, Carole

One year after the surgery

2010-03-19T20:12:00.000-07:00

March 16 marked my one year anniversary for surgery for Conn's (adrenalectomy). I tried to update my progress every few months, although I fell short of doing it quarterly as I had hoped to do. But life happened, which is a good thing, because for too long, it didn't.

The strangest part of my year anniversary was the euphoria I felt. Sure, I am thrilled to be a year out and cured of hyperaldosteronism, but honestly I didn't feel so completely healed up to this exact date. The weather where I live broke, always a help, and the sun replaced the dismal gray I had been battling during the winter. I had been dealing with fatigue here and there, but on March 16, I realized it was pretty much gone. Maybe those doctors knew what they were talking about after all when they told me recovery could take up to a year, (or so).

In all, the major symptoms never came back--the high blood pressure is gone, as is the lowered potassium. The flank pain or kidney pain is also gone as is the dehydration, migraines, confusion (brain fog) and paresthesia. I have more energy than I can remember in a long time and forget this sometimes when I go all day without taking a break. Just typing those words makes me smile :-)

The only thing I still struggle with is my late night schedule (as I write this at midnite). Due to the arrhythmia and cortisol rush I used to get around this time, my sleep schedule was disrupted and I became even more nocturnal than I already am. I am working to try and get my circadian rhythm back to normal, but this is hard. I am artistic by nature and have always loved the night. Now I am trying to love the early morning, without coffee, which is not the easiest.

In terms of living with one adrenal gland, my endo and surgeon both say there are no big problems to worry about. That may be so, however, I have noticed that my energy level can get maxed out quicker. Before and even early on with Conn's, I really pushed myself in my work, which is often very physical. I own a floral design studio that specializes in large events, and after several big functions last September, I passed out on site in a hotel. In my opinion, it seems plausible that it was related to having only one adrenal that was over-taxed. I also had a very hard time shoveling snow this winter. I am in good physical shape and should have been able to keep up with my 50-60 something neighbors!

In terms of the hormones, my God, they are thankfully regulated after 8 years of hell. I no longer feel like I am being attacked or defensive. This was compounded early on when I was involved in a relationship with a bi-polar man (a huge error on my part), which made my already compromised immunity system shatter. I am much calmer these days and feel like my old (new) self. Also, I didn't sweat for at least two years, which was the strangest thing. Now I really perspire and I love it.

A few more observations deal with caffeine and sugar. I can no longer regularly drink coffee. I have become extremely nauseous on several occasions and thrown up--which is a very rare thing for me to do. I have cut back to only 3 cups a week. Sugar is another thing that can affect me very quickly. I've always had sugar cravings, but I can't eat things like I used to. This is probably for the better in the long run. That goes with alcohol too, one drink feels like 3 sometimes, so I cut back to very little on the weekends.

In all, one year can seems like an eternity, but this one flew by. I remain steadfast in my opinion that having the adrenalectomy was the best thing I have ever done for my body. Not taking the 6-7 meds daily is a god-send, but mainly, knowing high blood pressure is a thing of the past is truly a great feeling.

If anyone out there reading my rantings ever has any questions about surgery or just wants to vent, I can be reached here. I started this site for that reason... I only wish I had a site like this to discuss the emotional side-effects I went through. There's so much more to Conn's than meets the eye.

Now, if we can only get Dr. Oz or some medical show to do a story on it. If I was mis-diagnosed for 7 years, I can only imagine how many other people are in the same boat. Our stories need to be heard!

Thanks for the read. I wish anyone with Conn's the very best and hope your journey ends quickly.

Peace~ Carole

Ten months after surgery

2010-02-01T18:08:00.000-08:00

It's been ten months since my adrenalectomy. As I mentioned in my last post, things have radically improved, although that arch-enemy of mine, "fatigue", still rears its ugly head from time to time. That said, there is an overall feeling of balance for the most part... even when faced with a stressful "fight or flight" situation, I feel far more prepared to deal with it then I have been in at least six years. There is much less reaction and far more action during times of stress.

Noticeable improvements in ten months post-surgery include:

- Continued low blood pressure each time I go to doctor
- Better sleep habits, no more cortisol rushes or heart palpitations to keep me up
- Ability to do complete work-outs (45 minutes - 1 hr) vs. the 20-25 minute ones I struggled through for the last two years
- More energy for the entire day
- Less memory issues, although I swear by Omega-3 for help with this
- Naps are no longer necessary to get me through the day
- Normal urine color and flow
- No more kidney pain or "flank" pain
- No more bloatedness, which is noticeable in a thinner face and body
- No more tingling or paresthesia in the hands and feet
- A general feeling of balance and calmness

One thing that remains a concern for me is the long-term outlook for those with one adrenal gland. I've had no, and I mean NO, doctors that have been able to tell me what to expect with my mono-gland as I age. I still can't believe there is so little information for us regarding surviving Conn's disease. My dream remains to have more education and exposure for both patients and doctors. Maybe I'll write to Dr. Oz someday. We are a small group, but after going on NORD and Yahoo groups-Hyperaldosteronism, I believe there are more of us out there than we realize, and we need to reach out to each other, even if we've recovered. It can be a brutal disease for so many.

As always, I hope this helps those considering the adrenalectomy or those who are in recovery from surgery. There really is life after Conn's, and from where I'm standing, it's looking really good for the first time in years.

Eight months after surgery

2009-11-28T12:54:00.000-08:00

It's been eight months since my adrenalectomy. Many people in my NORD Rare Diseases support group have contacted me for status updates. I figured I'd post more here so others not in the group could benefit.

As I mentioned in my last blog, I noticed some effects immediately after surgery. As exhausted as I was in ICU- I still noticed the "brain fog" was gone, and this made me ecstatic. While I was on some heavy duty drugs, I felt I was clear in my thinking and actions, and pretty alert considering I just had major surgery. My blood pressure was all over the place until 2 days later when it dropped lower that it had been in seven years. I was released from the hospital at that point.

Other changes were gradual, for example the polyuria was gone practically immediately. I started having quick bursts of energy within two weeks and got out of the house for a day trip. I fatigued easily though, so I would suggest limiting your physical activities for at least three weeks. As far as steps, do so but slowly. Don't think you will jump back into normal for at least a month.

I felt stronger within a month when I gradually resumed my work out routine at the gym. I no longer felt "confused" or whacked out, a side effect I suffered with a lot for the past two years. I also noticed the migraines had disappeared, as did the dehydration and muscle spasms at night.

Eight months later, there are some concerns that I plan to discuss with my doctor. Mainly- there is still some fatigue. As well, I have a difficult time with coffee (this stinks because I love it so...); I don't process sugar well, I crash immediately on it just as I do with wine or alcohol. My other adrenal seems to still be in recalibration mode, but certain stimulants do not take well. The fatigue is a major concern however. If I am physical and use a lot of stamina for work or other, I'll be ok, but usually have to rest a lot the next day.

Unfortunately, there is little to no information on living with one adrenal gland which frustrates me. There are many of us that have only one, and although we can live normal lives, there are things we should know, for example how long does it take for the remaining gland to recalibrate and assume the functions of the missing gland.

I plan on asking more of these types of questions at my doctors appointment next week and will report back what she says. As far as my surgeon, he told me in September that I was "clinically" cured.

Regardless of my lingering side-effects, when people ask if the adrenalectomy was worth it, I still say- absolutely. Everything about my demeanor has changed for the better, and I almost feel like my old self again, something I haven't felt in over 7 years. Having your electrolytes in balance can seem like the difference between day and night.

Three months after surgery

2009-06-03T19:10:00.000-07:00

The following are my observations of physical changes after three months from surgery~

No more hypertension, normal blood pressure each time it is checked
No medication what-so-ever for adrenal gland
No medication necessary for migraines (they are gone)
No more potassium horse pills
More energy daily, but not complete yet
No noticeable brain fog
My memory is improving
I am making better decisions
No more dehydration
No more polyuria
No heart palpitations/arrhythmia
No tingling limbs
Ability to eat salty foods again- however they are monitored
My defenses are in check, no more extremes due to the electrolyte imbalance
The bloatedness is GONE. In my face, hands and feet as well as the middle section. All less puffy and more normal looking, although weight loss still needed for last 10 lbs.

My adrenalectomy surgery

2009-03-09T10:26:00.000-07:00

My Decision:
On March 16, 2009, I had an adrenalectomy to remove both the tumor and the adrenal gland due to Conn's. The main reason for this decision came down to blood pressure. My father died young-ish with complications due to high-blood pressure, I couldn't imagine a life like that. The percentage of curing hypertension through this operation ranges from 60-70%, depending on which medical journal you read or what doctor you talk to. It can seem risky, but most people I met who have had the procedure all had successful outcomes.

The surgical process was more than I expected. One good thing is that it's done laproscopically, sparing the waist of a large scar that would encircle it. I have 4 small incisions on my side and they will probably blend into my skin in a year or so. The process prior to surgery echoes the testing you take to diagnose Conn's in the first place; it's detailed and exhausting. Two weeks before surgery, you will feel like you have been tested for anything and everything under the sun. If after all the testing, all they find is the adrenal tumor, you can feel pretty confident your health will be in check for at least 5 years. Don't misread this; we all are getting older and other things can happen. But you are poked and prodded for at least a year solid to find out what type of tumor you have, and if there's something else wrong with you, there's a good chance they will find it.

Before:
You are admitted.
Blood work/Vitals are taken
Pregnancy Test for women
Surgeon comes in to explain procedure
You will walk into the operating room
I.V. for anesthesia
The wait time is 45 minutes- hour before you get into operating room depending on the surgery schedule.

After:
You will be in intensive care immediately following the surgery. I was hooked up to every machine I had ever seen on t.v., it was very intimidating. The pain was profuse, but Dilaudid is a just nurse call away. Sleep is almost impossible, the machines you are attached to are mainly what keep you up. You will be hooked up to a blood pressure monitor, 2 I.V.'s- one for fluids and one for pain medication, a cardiac monitor, and a catheter. You will also have leg circulation pumps to make sure you don't get blood clots. It's important to move your legs around to prevent clots.

The second day, your surgeon comes in and reads your vitals. My BP was dropping steadily, so they moved me to another floor. They also take me off most of the machines, and removed the catheter. Once I was in my room, I slept for what seemed to be an eternity. An immediate improvement I noticed that day was the absence of the awful 'brain fog'. For at least 2 years, I have felt like I wasn't here, like I was floating and stuck just under the radar cloud of human life--basically, caught in a fog. Feeling like this brought me down so low I became reclusive. Many Conn's sufferers state this as a major problem. I still get infuriated reading symptoms of Conn's from sites claiming the only real symptom is high blood pressure (i.e.- The Dartmouth/Hitchcock Medical Center). I'm here to say that is utter nonsense. Conn's patients suffer from so much more. To no longer feel brain-fog was a welcome change.

They released me on the third day even though I still felt like crap--welcome to U.S. Healthcare. I honestly don't feel I was ready but that's our system. Once I got home, it was rest, rest, rest and drugs, drugs, drugs. I had a very hard time climbing steps and was told not to (an impossibility in my house). You really need someone there to help you, so if you are alone, this is a time to call in the favors.

The pain started to ease up within a week. You will not be running to the bathroom as much and the dehydration is gone. If you are like me and get antsy quick, you'll want to move around. No steps for a week means what it says. I challenged this (of course) and paid for it with lots of pain. Take the time to rest, at least 2 weeks.

Immediate Noticeable changes:
Changes in the remaining adrenal are noticeable within a few weeks. I started to get energy bursts within one and a half week. I can't begin to explain my euphoria over this. Another good, though odd, change was sweating-- I didn't sweat the last 2 years, and now I perspire quite easily. There is a now a normal frequency of nightly bathroom visits-- instead of 4-5 times, I'm back to my one nocturnal trip. The migraines are gone, helleujah. Major Bonus: I no longer take 5 medications, which were stopped immediately post-surgery. There are now new things like hormones kicking in which can be exciting. Overall, there is a renewed sense of well-being--and hope.

Overall Opinion:
I am thrilled I had the opportunity to remove my adrenal tumor. After meeting others who are considering it, I can wholeheartedly say I recommend this surgery. I personally thank two women (Rose and Tracy) who helped point me in this right direction. The endless conversations I had with Rose were highly appreciated. She had Conn's, and had the worst symptoms I had ever heard of, including 5 visits to emergency rooms for arrythmia and low potassium. After her operation, she told me she felt 15 years younger, I now understand what she meant.

It's been a long road getting here, but there is an end-- and it is filled with the physical well-being Conn's robbed me of six years ago when it first attacked my right gland. Major surgery is never an easy decision nor is it easy to undergo. But if it's an option, I say look into it, ask others who have had it and weigh your thoughts. Hopefully this surgical recap will help any of you that have an aldosterone-producing adenoma and are on the fence.

What the adrenalectomy surgery entails

2009-01-23T16:21:00.000-08:00

Having surgery is my final suggested step. As my adrenal adenoma is unilateral (on one adrenal), I am a good candidate. Both Dr. Quinlan and Dr. Sardi agreed it was the best route for me to take to end this horrible hormonal ride. Why? Dr. Sardi explained why in very simple terms: it will more than likely cure my hypertension. It's not 100%, but he said the success rate is high and well worth the operation. After reading about the battles my fellow Conn's sufferers have had on the Yahoo Hyperaldosteronism Support group, struggling with up to 4 high BP meds daily, my decision was made. When I researched the long term effects of high blood pressure, I knew I didn't want live in fear that something awful could happen.

Another bonus is I will never have to take potassium (horse pills) supplements or continue on the spironolactone. I had originally dreaded taking spiro since the beginning, but it drastically helps, however I never want to have to rely on a drug to make me feel like a member of the human race ever again. I will also be able to hopefully cut out 2 other medications I've been on when the symptoms began. Being practically medication free is euphoric news to me.

As far as surgeons, I managed to get extremely lucky. Dr. Sardi performed one of the first Conn's related adrenalectomies and studied with the doctor the disease was named after-Dr. Jerome Conn. And the fact that Spanish is his first language is music to my ears. I expect to wake up after surgery completely bi-lingual :-)

Please note, while I have decided to go the route of surgery, it's not for everybody. Some of my fellow Conn's sufferers may have bilateral tumors or simply choose to not have surgery and continue on with the spironolactone, potassium supplements and blood pressure meds. I support each and every one them, no matter what decision they make. Living with Conn's is a difficult journey. No one is here to judge or give advice. My hope with sharing my decision for surgery is to continue to give viable options in winning the battle with Conn's.

The Laparoscopic Adrenalectomy~

Description:
The laparoscopic approach for adrenal resection allows small to moderately sized tumors to be removed using scopes and very small incisions. This technique is tolerated very well and has been shown to have the least amount of postoperative pain and require the shortest hospital stay. This is now the preferred method for removal of small to moderate size adrenal tumors whether they produce hormones or not.

How It's Done:
The surgeon makes a series of small ( 1/4 to 3/4 inch) incisions instead of making one large incision. This allows the surgeon access to the abdominal contents where he operates using specialized instruments. One of these instruments instills air into the abdominal cavity to blow it up (like a balloon but only under modest pressure). This instillation of air makes it easier to work since the intestines and other organs will fall away from the tissues which are being examined. A camera is then placed into the abdominal cavity which allows the surgeon to see what he is doing. The remainder of the small holes (ports) have long instruments placed through them into the abdomen for the actual dissecting of tissues. During the dissection, the pancreas and spleen must be lifted up to allow the surgeon access to the adrenal.

The adrenal vein which is smaller than the renal vein, has clips placed on it so it can be cut without bleeding. Once the adrenal artery and vein are identified, clipped, and then cut, the adrenal gland itself is dissected off of the kidney and then removed. Surgeons will put a small cloth bag through a port and into the abdominal cavity. The adrenal tumor is placed into this bag which makes it easier to remove through the relatively small skin incisions and ports.

For more in depth (and sometimes gruesome) details on this procedure, go to: http://www.endocrineweb.com/laparo.html

If you live in the Baltimore/D.C. area and need to have this done, contact:

Dr. Armando Sardi
227 St Paul Place
4th Floor
Baltimore, MD 21202
410.332.9294

The Vein Sampling Results

2008-12-26T19:24:00.000-08:00

December 2008

I just got my results from Dr. Liddell. He had called last week to give me the cortisol reading. Both adrenals had high cortisol levels which he said basically meant they found the adrenals, that's how they respond when poked with a catheter.

Today he gave me the aldosterone scores. Before the ACTH was added, my right adrenals aldo level was 21. After adding the ACTH, it was 208. This seemed in line with him, he did not believe there was bi-lateral overproduction going on. The left adrenal on the other hand (which is where the tumor is) was way out of line. Before the ACTH, left adrenal read 800, and after receiving it, it shot up to 4000, which is extremely high. The diagnosis was that I have a unilateral tumor on my adrenal gland that is out of control-exactly what we all thought. He highly suggested surgery (which didn't surprise me) saying I was too young and in shape to have to take blood pressure meds for the rest of my life, not to mention the danger factor of having such a condition in the first place. As well, I'd never have to take those darn horse pill potassium supplements again. Next step-- an endocrinologist visit followed by the surgeon.

While I'm not thrilled with the prospect of surgery, I now finally have concrete answers with some bright light up ahead at the end of this very long tunnel. I feel relieved in so many ways.

The Adrenal Vein Sampling Test

2008-12-21T18:26:00.000-08:00

December 2008

It was suggested by my endocrinologist that I have an Adrenal Vein Sampling Test (AVS) to determine the aldosterone production values.
I have read all sorts of information about this procedure on the web-- how it's often difficult to get the catheter in the right adrenal vein, and that sometimes the adrenals can get damaged. I also read that up to 50% of patients can have an unsuccessful reading. All very scary, risky stuff to me.

Feeling like a lab rat, I was eager to get to the next level of a prognosis, so I agreed to take it. I made a second appointment with my endo to get as many facts as I could on the procedure, and I recommend anyone with Conn's to do the same as this is a serious procedure.

Doctors who perform the AVS are interventional radiologists. The doctor recommended to me was also at Mercy, Dr. Robert Liddell. Since I'm only mentioning in this blog the doctors who I highly recommend, I can say without hesitation both Dr. Sardi (surgeon) and Dr. Liddell are two doctors I feel fortunate to have. Both are well-known experts in their fields, and have staffs that are equally as helpful.

THE AVS PROCEDURE AND WHAT TO EXPECT

Day Before:
There really isn't much to do prior to the surgery. If you are on spiro, you must go off it. After midnight, you cannot eat or drink anything. This includes water. You also can't take your BP meds the day of the AVS, so I suggest taking them right before midnight with a big glass of water. If you are like me, you are probably dehydrated often, so this part was tough, especially in the morning when all you want to do is drink a tall glass of H2O.

Day of Preparations:
The earlier you take the test the better as you will be parched and low on potassium. My procedure was at 11:00 but there were two hours of prep time.

Things should move fairly quickly once you are admitted. I was in a bed by 10:30 getting a lot of details of the surgery from a nurse. I'll stop here and say I recommend you take someone with you that you can lean on. This is a serious test and it will become a pretty intense day for you quickly, so you really should not go it alone.

The first thing the nurse will do is take your blood pressure. Then you will have your temperature taken. They stuck a weird instrument in my ear to get mine, which I wasn't familiar with.

Next, you'll get a catheter inserted (no, not fun at all). It is rather unpleasant if you've never had one-- the first half hour is uncomfortable with pressure. Since this is a procedure where another catheter goes into both sides of your groin, you will be shaved down there a bit.

About 20 minutes later, you will receive an I.V. for the anesthesia.

A nurse will take your blood pressure about 3-4 times before they wheel you in, as they want to make sure it's not high.

Soon after, the doctor arrives and he explains how the procedure works, how long it usually takes and what the risks are. Like I had read, the major risks are blood clotting, not being able to find the adrenals, which result in an insufficient reading-something you don't want to occur. I was thrilled when he didn't mention words like death or imploding adrenals.

Surgical Procedure:
About an hour or so after being admitted, you will be wheeled in to the operating room where about 4 nurses are prepping for your surgery. They will clean and sterilize your groin area for a bit and then place a piece of heavy tape or plastic between your legs up to your chest. You will then be administered a sedative and anesthesia- mine was Fentanyl and something else. It takes very little time to get loopy and go under. There will be nurse at your side the entire time to answer any questions, or just hold your hand. The other nurses will be helping the doctor and cleaning/preping instruments. I was surprised to see so many nurses, but like I said, this was a complicated procedure.

You may be in and out of consciousness during the procedure. I could see my doctor looking at a computer screen while operating the catheters. If you are like me, you may have an odd side effect of the fentanyl by your nose itching like crazy. Towards the end, the doctor woke me and said he was having a hard time finding my right adrenal but didn't want to stop and would it be ok to continue longer- I said yes which put me in there for four hours, a bit on the long side for this procedure.

The Recovery:
You'll return to your bed and will be out of it for about one hour. The nurses will check on you constantly checking for hematomas (which I had) and clotting. You will be asked to keep you legs as straight and still as possible which can be difficult. You will be severely dehydrated but have to wait to drink. Eventually- about 20 minutes or so- they should give you ice chips and then a cup of water. After that you can have juice, soda and some food. I had no appetite at all but ate some crackers. I recommend trying to get something because you'll have a lot of drugs in your system. They also want you to stay flat on your back for an hour and then will raise your head 30 degrees two times after.

The doctor will then come in and tell you how the procedure went. He will not have the results of the hormone levels for at least one week. The discharge instructions are to avoid getting the opening infected and to watch for bleeding.

After you have recovered for 2 hours, they ask you stand to see that you can walk, then you get to go home. Again, make sure someone is driving you- you won't be in the best condition to do this yourself.

Going Home:
When you get home, you will be completely out of it and want to just sleep. You may get ill from the fentanyl, which is still in your system. When you are home, you are advised to drink 16 oz of liquid to flush out the anesthesia. Saltines help too.

Soreness is also expected, and mine began 3 hours later. I felt pain in places I didn't expect- like my arms and lower legs. The pain was overwhelming in my groin area. Severe bruising started the next day and is expected, but it's important to make sure it's soft, not hard. As well, check your bandage for excessive bleeding. I have no idea why they don't send you home with a day or two worth of painkillers, they really should. I took 600 mg of advil, and slept a lot.

The Dr. says you'll be fine in a day--but I was pretty sore for three days. One tip- DO NOT lift anything for the first two days. Seriously, I did this and paid for it...lots of pain. The results come in about 5-6 days.

While it a tough procedure, it will really help you see if surgery is your next step.

I hope this information helps you and wish you luck.

To read more about the AVS procedure with complete medical terminology and explanations, go to:
http://radiographics.rsnajnls.org/cgi/content/full/25/suppl_1/S143

If you live in the Baltimore/DC area and need to have this test, contact:

Dr. Robert Liddell
Interventional Radiology
301 St. Paul Place, 1st Floor Tower
Dept. of Radiology
Baltimore, Maryland 21202
Phone: 410-332-9268 Fax: 410-545-4255

The 24 Hour Urine Collection Test

2008-12-15T18:26:00.000-08:00

This test is done to see how much aldosterone is released into your urine. It may be one of the last tests your endocrinologist gives you before making a decision on surgery, but it depends on his testing protocol. Mine was supposed to be done right before the AVS, but it got delayed due to my endo's office staff's incompetence.

The test is not, however, as icky as it sounds. But it is a bit inconvenient, especially if you are a busy person who is prone to activities outside of the home. You should try to not leave the house when you do it, or you'll have to carry your little cup with you. And then fly home to refrigerate it, or even worse-refrigerate it at work (gasp!). And you know what they say--sometimes the cuppeth runneth over. And if you have P.A., chances are it will. Often.

So yes, it's best to do this one at home. ALONE. Not much else to say on this other than I'm glad it's over.

How the test is performed

* On day 1, urinate into the toilet when you get up in the morning.
* Afterwards, collect all urine in a special container for the next 24 hours.
* On day 2, urinate into the container when you get up in the morning.
* Cap the container. Keep it in the refrigerator or a cool place during the collection period.
* Label the container with your name, the date, the time of completion, and return it as instructed.

The Saline Suppression Test

2008-12-05T23:04:00.000-08:00

Taken in October 2008

This was test I had to take before the adrenal vein sampling. It seemed easy enough and I was thrilled I didn't have to do the real salt load test which is done at home. That one sounded hard core with all the drinking and salt tablets, as well as the blood pressure monitoring with no medical staff to check on you. If you can, get your endocrinologist to give you a slip for the saline suppression test. It's done in a hospital where nurses will monitor you often and see that you are ok.

This is a test where spironolactone has to be discontinued for at least 6 weeks. I also had to stop nipedifine, my high blood pressure med, but only that day. Also, if you are a big black licorice eater, you have to stop eating it because it oddly throws off the test.

I went to St. Agnes Hospital of Baltimore to have mine done. If you go to a hospital, the procedures are usually performed in the the infusion centers of the cancer department. There will be people getting blood transfusions and chemo. It can be a bit daunting if you have never seen or experienced that. It was a good experience for me, everybody (including the nurses) was polite and quite positive.

The Test and What to Expect:

1) You will go in early (7:30-9:00 a.m. at the latest) and stay for about 4 hours. You go in early because that's when your aldosterone is at it highest.

2) After you are admitted, you will sit for approx. 20-30 minutes and then a nurse will take samples of your blood. They'll be checking for renin, potassium and aldosterone levels.

3) The nurse will then take your blood pressure.

4) You will get an I.V. put into the opposite wrist or arm from where they took your blood. You will receive a catheter for the saline infusion. You will be expected to sit, not lay down, for the entire time. You can however, sit back if you are in a recliner chair.

5) A nurse will administer 1 of 2 bags of saline (.9% Liter). It will feel really cold going into your veins. The nurse said after a while I wouldn't feel it, but honestly I did the whole time. I was freezing and got some blankets- you may need to do the same. I recommend layering with a sweater and even a scarf, too.

6) You will be allowed to drink juice, water or soda during the procedure, but be careful, they are adding a lot fluid to your system and you'll start to feel like you have to go to the bathroom within a half hour. You are also allowed to eat food, they serve lunch around 11:30-12:00 p.m.

7) You will be there for 4 hours to receive all of the saline from both bags.

8) You will go to the bathroom often after the 1st bag is in your system. I went about 15 times during my visit- no lie. Make sure you have a sense of humor and try to get a seat close to the bathroom... mine was across the room and it was a real pain carrying that I.V. apparatus.

9) After you are finished, the nurse will take you blood again to compare against the earlier sample. She'll check your blood pressure too.

10) You get to go home. When you leave you'll be extremely dehydrated, so make sure to drink plenty of fluids (for as much as they put in you, you emptied out, trust me). Also, you'll have zero electrolytes, so I recommend Gatorade, and take it with your potassium pills. I felt very weak after wards, and my joints hurt. I also had a horrible headache, so I just went home and crashed for a couple of hours. Hopefully, you don't have to go back to work, you'll be very unproductive.

11) Your endo will call you within a week with the results.

The Tests You Will Take

2008-12-04T18:36:00.000-08:00

You may already be diagnosed with P.H. If so you will have to go through a very long series of tests before they can give you the proper treatment, which may include surgery. It can take less time if you have a super-endocrinologist who really understands Conn's and wants to help you get better fast. These types of doctors are rare and hard to find. And if you are like me, you will find yourself at the mercy of the doctors offices, not just your doctor, and let me tell you, those medical staff people can make or break you. They have far too much power for so little training. My endocrinologist's office has made numerous errors, including making appointments before having me get blood work or urine collection. And then they make you feel like getting an appointment (after they screwed up, mind you) is a privilege. It's not, and it is your right as a patient. Wasted time can cost you a lot when you are in pain and feel hopelessly off-kilter. You need to become your own advocate (see my below blog on helpful tips with that).

My second endocrinologist (I'm on my 3rd), told me if I didn't follow the order of the tests, it would seriously delay diagnosis and treatment. He was right on that accord. But what he forgot to tell me was what to do in the middle of all the tests. How do I get through my days when I can barely concentrate or remember simple things. Unfortunately, I had to take care of all that on my own, and it's been a very long, sometimes depressing road. If I may be so bold--I recommend going on anti-depressants while you are undergoing all these tests. It can take up to a year to make the right diagnosis and you need to take care of your emotional well-being in the meantime. I've never been a huge fan of them, but recently I feel they may have saved my life. Each patient is different so it's best to talk to your G.P., maybe not your endo because he's only there to deal with your endocrine system, not your head. However, if your endo is an empathetic person, it's certainly worth asking.

In the meantime, here is a list of tests that most endocrinlogists have you take before making a decision about surgery vs. a life-long commitment to medication. The tests can start out in different order with different doctors.

Hyperaldosteronism Tests:

1) Lots of blood work which may be requested weekly or bi-weekly at times.

2) Blood renin tests that are sometimes done in conjunction with the regular blood work.

3)CT scan. This is how they found my tumor, although if your doctor suspects P.A., he will have you take this to be sure.

4) MRI- A surgeon will often request this to see the tumor better (CT's can be rough).

5)Saline-Suppression Test, or Oral Salt Loading Test (it's usually either/or)

6)24-hour urine collection: The test is done to see how much aldosterone is released into your urine.

7)Fludrocortisone suppression test (FST). After you've followed a high-sodium diet and taken fludrocortisone — which mimics the action of aldosterone — for three days, aldosterone levels in your blood are measured.

8)Adrenal Vein Sampling: This is the most reliable test for determining the cause of primary aldosteronism. A radiologist draws blood from both your right and left adrenal veins and compares the two samples. Aldosterone levels that are significantly higher on one side indicate the presence of an aldosteronoma on that side. Aldosterone levels that are similar on both sides point to overactivity in both glands-(this is not great news).

9) Pheochromocytoma Urine Collection: A pheochromocytoma is a rare catecholamine-secreting tumor. Tumors that form outside the adrenal gland are termed extra-adrenal pheochromocytomas or paragangliomas. Because of excessive catecholamine secretion, pheochromocytomas may precipitate life-threatening hypertension or cardiac arrhythmias. If the diagnosis of a pheochromocytoma is overlooked, the consequences could be disastrous, even fatal; however, if a pheochromocytoma is found, it is potentially curable. You will take a urine test (pee in a jug for a day) to determine this.

There may even be more, but thus far these are the ones I have taken. I'm off to my endo tomorrow for results on the AVS and urine collection. Am nervous but hopeful that this will all be over sooner than later.

The Effects of Corticosteroids on the Adrenal Glands

2008-12-02T12:29:00.000-08:00

When I was 24, I was diagnosed with asthma. I was given a lot of different medications throughout the years, which included a multitude of various short-acting inhalers such as Albuterol, Proventil, Ventolin. Oral bronchodilators: Theo-Dur (theophylline). Long-acting bronchodilators: Serevent. And more recently, another oral inhaler: Advair. Having asthma made me more prone to lung infections and I've had many of those. Bouts of bronchitis and even bronchial pneumonia, were not that uncommon during the dry, cold winter or in times of severe stress. Each time I got really sick, my doctor put me on Prednisone- a drug I hated more than any other I have ever taken in my life. It did crazy things to me then, and now it seems likely that it continues in attacking my endocrine system. Luckily, I am almost asthma free, I rarely get an attack or experience symptoms...I now have another issue to deal with: Conn's Syndrome.

Prednisone is a corticosteroid, as are most of the above mentioned drugs. Corticosteroids are a class of steroid hormones that are produced in the adrenal cortex. They are involved in a wide range of physiologic systems such as stress response, carbohydrate metabolism, immune response, regulation of inflammation, protein catabolism, blood electrolyte levels, and behavior. While prednisone can be a great healing drug for many conditions, the side effects can be pretty heinous. The short term effects include: euphoria, insomnia, mood changes, personality changes, psychotic behavior, or severe depression, fluid retention and high blood pressure. The long term effects are: osteoporosis, diabetes, lowered sex drive, glaucoma and cataract formations, and adrenal glands problems such as Cushings Syndrome. Doctors do not recommend stopping the use of prednisone before seven days because it can have bad consequences such as bringing on symptoms of Addison's disease (another adrenal gland condition). Doses are reduced gradually over a few days with short term use and over a few weeks/months with long term use.

While Conn's has not been mentioned as a long term side effect, I still wonder if there is a correlation. There has been stress on my adrenal glands that's for sure. But I'm not a doctor and I don't know of all tricky terminology that would help explain my theory. I plan on asking my endo at our next appt. At this point, all I know is prednisone/corticosteroids help asthmatics like me everyday, and I am thankful for that. But sadly, after years of them being prescribed to me at the drop of a hat, I have to wonder if they are playing any role in my adrenal crisis.

Short Term Effects of Corticosteroids:
* Elevated pressure in the eyes (glaucoma)
* Fluid retention, causing swelling in your lower legs
* Increased blood pressure
* Mood swings
* Weight gain, with fat deposits in your abdomen, face and the back of your neck

Long Term Effects of Corticosteroids:
* Cataracts
* High blood sugar, which can trigger or worsen diabetes
* Increased risk of infections
* Loss of calcium from bones, which can lead to osteoporosis and fractures
* Menstrual irregularities
* Suppressed adrenal gland hormone production-such as Cushings Syndrome
* Thin skin, easy bruising and slower wound healing

http://www.mayoclinic.com/health/steroids/HQ01431

1.20.09 Update:
My G.P. feels there is no relation to corticosteroids and Conn's. I'm not entirely convinced and plan on asking my endo for more info later.

The Mind-Body Connection

2008-11-28T12:06:00.000-08:00

In my earlier posting on Adrenal Fatigue Syndrome I mentioned that I often wonder about a mind-body connection with regard to Conn's. I'm learning more each day as I investigate on the web. I happened to stumble across several interesting articles on the subject:

http://familydoctor.org/online/famdocen/home/healthy/mental/782.html

http://www.sciencedaily.com/releases/2008/07/080715152325.htm

http://www.bravewell.org/patient_empowerment/you_and_your_health/mind_and_body_connection/

I'd love to learn more, especially ways to improve an ill body with the help of the mind. As well, I am always on the look out for articles on diagnosing illnesses with both body and mind in mind. If only I could find them in the field of endocrinology. Thus far, none of the endo's I've been to have ever once asked about my emotional stress levels prior to prognosis. Nor have they seemed that concerned after, even when I complained of depression which I believe is common with Conn's. This isn't just a physical disease, things get convoluted and foggy. And even more stressful. I'm just trying to discover more clues as to why I got this thing called Conn's. Or have I just been conned by Conn's?

Becoming your Own Patient Advocate

2008-11-26T19:20:00.000-08:00

Once I was diagnosed with primary hyperaldosteronism, I thought I was home free. I had a diagnosis after all, what more was there going to be besides a prescription or two and some follow up visits? Boy was I was wrong. There was so much more, including endless blood work, AVS tests, saline suppression testing and urine screening tests. And then there were the doctors, health insurance companies, prescription medications, family discussions and my job. I needed help trying to balance everything.

What you Need to Know

After having not one but two horrible experiences with endocrinologists being rude, insensitive, uninformative and generally unhelpful, I knew I was going to have another battle on my hands. Luckily I found the right one, but I had to do a lot of shopping. My advice is to start your research on-line. Yahoo groups has an hyperaldosteronism group where a lot of patients exchange doctor recommendations or those to avoid. The second way, which can often the the best, is to ask anybody and everybody you know that has or had an endocrine problem if they like their doctor. If that doctor only specializes in certain diseases, i.e. diabetes and not P.A., ask that doctor if he knows another endocrinologist who would. Personal referrals are the best--it's how I get most of my business and it's also how I found 2 very good doctors of my own. My third endo came to me by way of a well-known surgeon I had done translation work for. Distraught and desperate, I called him one day for some advice and not only did he give me the name of a good endocrinologist, he also said he knew my condition well and could operate on me if that was my option. It worked out perfectly.

Research~
After you get your endo, the next step is to go back on-line and research as much as you can on what this disease is about, including treatment options. This can get a little tricky since P.H. is rare. Some sites may have descriptions that don't include all the tests you'll need to take, while others don't list the many side-effects you may be experiencing. You just have to be vigilant and keep looking. Joining two support groups educated me about medication options and helped me realize I wasn't alone with all that I was feeling. (Support Groups listed on the front page of this blog). Having someone to complain to who understands can be so helpful. Sometimes it's easier to talk to strangers who are experiencing the same things as you. The more we communicate with each other, the more we can learn.

Health Insurance Coverage~
The next thing you need to do is find our what your health insurance provides for. If you've lost your plan (we all have done this, don't worry), contact their human resources department and they will send you out a copy. If reading all the medical terminology is too hard, contact this group, http://www.patientadvocate.org/
It's their job to help you understand your options and your health plan.

Get Copies of your Test Results~
Always ask for copies of all your test results, they are yours and by law you have a right to them. This can help also with the mountains of paperwork you'll receive from the insurance company. The more information you have the better equipped you'll be if there's a billing discrepancy. If you don't like the treatment you received from your doctor (he has to be very bad mind you), don't pay the bill, contact first a patient advocacy group (if he is in a hospital, they will have one). If he's not in a hospital, contact the patient advocacy group listed above, hopefully they can help. You may also call your insurance company and explain your story. You may not have to pay or at the very least may get a discount. Remember, you would complain if your service was bad at a restaurant, why stop at food when it's your body at stake?

Talk to Your Family and Close friends~
This can be hard for many of us to do. Originally I wasn't going to tell my family for a variety of reasons, one of which being I have an ailing, elder parent that requires constant attention. But when I kept missing family events because I was so exhausted or had muscle spasms, they had to know and I'm glad I was honest. You owe to yourself and your loved ones to let them know that your electrolytes and hormones will be off-balance and things can get scary. You will miss events, you will be very tired. If you don't tell them, your disease will come out sooner or later by you either passing out, or acting aloof or in a fog. So talk to them and hopefully they will support your journey to wellness. If they don't, join those support groups I mentioned or confide in one good friend. We all need a shoulder to cry on, no one is exempt.

Treat Yourself Well~
You will have off days, this is a fact. But don't be hard on yourself, it will only make you more discouraged. Try to do nice things for yourself such as massage, manicures, spa days or a girls nite in with a movie or a martini. The better you treat yourself the more positive your attitude and the better you can fight those aldosterone blues.

Act as Normal as you Can~
Get back to your old routine as quickly as possible. This may sound weird but it helps. There was a time that I let this illness take over my life, it was hard stopping it. But I got so tired of being tired, I decided to do something about it. I started to work out again, it had been at least a month and I felt it. At first I really had to push myself, but now it's very normal. Even if I'm exhausted, I'll get on the treadmill for at least 25 minutes 3 times a week to give me some much needed endorphins. This helps with the high blood pressure part of the disease too. As well, I try and get together with friends/family when I have my good days. It may just be one day a week, but I still make the effort. Try to be positive, you will get better... the tests and results seems to take forever, but you will get there. I'm almost at surgery and I feel very hopeful finally.

Adrenal Fatigue is REAL

2008-11-24T19:54:00.000-08:00

June 20, 2008 (original excerpt from journal)

Otherwise known as my adrenal rantings...

After all the blood work I've done, I'm starting to feel like a vampire victim. I have NO energy, I barely can make it up steps and I have the hardest time getting up in the morning....and I know it has to do with this thing growing inside me. I've been reading as much as I can about adrenal tumors. They are supposedly common, but not the kind I have. Endo # 2, after all was said and done, was pretty sure I have hyperaldosteronism (PH), one of the longest medical terms I've ever seen. He did say fatigue was not uncommon. I wish he told me more. He also called it Conn's syndrome. He did not however call it adrenal fatigue.

Now that I have become my own patient advocate, I am reading as much as I can on my condition. And I keep finding varying bits of information. But here is something interesting I ran across. I feel this best represents what I have been feeling for close to a year.

ADRENAL FATIGUE SYNDROME:
* excessive fatigue and exhaustion
* non-refreshing sleep (you get sufficient hours of sleep, but
wake fatigued)
* overwhelmed by or unable to cope with stressors
* feeling rundown or overwhelmed
* craving salty and sweet foods
* you feel most energetic in the evening
* a feeling of not being restored after a full night's sleep or
having sleep disturbances
* low stamina, slow to recover from exercise
* slow to recover from injury, illness or stress
* difficulty concentrating, brain fog
* poor digestion
* low immune function
* food or environmental allergies
* premenstrual syndrome or difficulties that develop during
menopause
* consistent low blood pressure
* extreme sensitivity to cold

When I read this, I had one of those serious "a ha" moments. Most of these were me, except the low blood pressure... hyperaldosterone raises the pressure instead. But at least I was getting closer to the culprit of my exhaustion and physical misery. Why endo #2 didn't assist me more when I called him pleading for help after individually mentioning these symptoms as well as others, I'll never know.

But after some more digging around on the web, I see that perhaps there was a reason why he didn't acknowledge my complaints. According to most board certified endocrinologists (including an explanation provided by the Mayo clinic), "adrenal fatigue" is a term that the alternative medical community has created. It's found in health books and web sites, but still isn't an accepted medical diagnosis. But how can this be I ask? I know what I am feeling. Are they disputing that? Well, maybe they are or maybe there still just isn't a lot known about hyperaldosteronism/Conn's. I haven't found any sites that list adrenal fatigue as a symptom of Conn's, only the word "fatigue" shows up.

All I know is what I am feeling and the above list hits it pretty much on the mark, even if it is coming from the 'alternative' community. In my opinion, it sounds a bit like medical east meets west. I have always identified with the eastern doctrine, which has a mind-body connection. But here in the west, we don't do that...we need endless research and testing, concrete evidence, factual data, and sometimes drug company involvement for a condition to become a legitimized condition. As a patient, I still want and need that, but I also need a wellness approach with holistic ways of healing. I heal better when my condition is listened to and so am I. I wonder if we can ever have it both ways in medicine.

Perhaps I am getting way ahead of myself here... like I said these are my rantings and I'm writing this at 2:00 a.m....(just around the time I get the big cortisol energy burst, thanks to this stinking disease). For me personally, I'd love to know more about the mind-body connection with Conn's syndrome. I'd be interested in hearing from others to see if there was a stressful event that occurred before the tumor. I know I had one, a very long drawn out event. Five years ago, I experienced serious stress when I was became involved with a mentally ill person who lived in a revolving state of paranoia and anger, which ultimately came out on me. I was walking on eggshells and dodging landmines, all the while I was trying to run a business. It put me in chronic fight/flight mode, which is a horrible way to live. I also survived a near fatal car accident last year which I am still recovering from. I cannot think my stress glands weren't on major overload from these events. After my mind had had enough, my body gave out, I got sick and the adrenal fatigue symptoms followed. Hyperaldosteronism or not, I have adrenal fatigue.

All I really want is to feel better, like I did before 5 years ago, before all this weirdness started. And to have a good nights sleep, and not be so exhausted all the time. To not have to take horse pills 3x a day and to never have a migraine again or have hypertension at my age. That's what I really want. Well, that and a doctor who will listen seriously to all of my symptoms and maybe just for once, look me in the eye.

Tips for living with Conn's

2008-11-23T20:12:00.000-08:00

The following tips may not be for everyone, but they have greatly enhanced my daily routine while living with primary hyperaldosteronism.

** Get a really good endocrinologist. This is crucial. Not all endocrinologists understand or have experience with Conn's. Some even dismiss it as a disease that simply requires meds and little else. You owe it to yourself to find an expert. It took me 3 times to find the right one.

*Get a second opinion if you feel your doctor isn't listening to the severity of your symptoms or helping you. Ask friends/family whomever you know that have been to endocrinologists who they recommend. Personal referrals are the best.

* Research as much as possible about Conn's on your own. I've learned a lot on the internet and through support groups.

* Join a support group, they really help. These are two good ones:
http://health.groups.yahoo.com/group/hyperaldosteronism/
http://www.inspire.com/groups/rare-disease/discussion/conns-syndrome-hyperaldosteronism/

* Get your blood pressure checked regularly. Your endo and other doctors should do this each time you go in.

* Insist on getting all your results from your endo. The more you inform yourself about this disease, the more you will be able to manage it or get proper treatment.

* Avoid as much as possible salt and sugary products. It's hard if you go out to dine as most restaurants use a high content of salt in the preparation of food. Start reading labels for sodium percentages, this goes for sugar, too. Foods to avoid (I know, this part hurts...) Pizza, some soups--they can have a lot of salt, Chinese/Thai food, sugar covered sweets- donuts, candy, cookies, bacon/ham or other cured meats, fried foods, salty peanuts or other nuts (try to get them unsalted if you can), some popcorn that has salt, all sodas.

* Eat more fruits and vegetables and stay as far a way from the above list as possible. You have a disease where you retain water, eating those foods will make you feel worse and swell more.

* Drink lots of water. Also, drinks with electrolytes are great. Drink at least twice a day-- Gatorade or Smartwater, both are good choices. There are others too, read labels!

* Avoid caffeine, or cut back on it as much as possible.

* Develop or maintain a daily routine and do your best to stick to it--even if you have to push yourself to get out of bed. Try and get up at the same time, try and go to bed at a reasonable time--although this can be very hard if you suffer from insomnia, which is a side-effect of Conn's. But having a routine really helps you to feel more in control of yourself when there's an insidious disease trying to control you.

* Avoid alcohol, or cut back if you drink. One drink can feel like three, seriously.

* Start a work out routine if you never have. You will be exhausted most of the time and really have to focus on doing this, but the more you work out, the better it is for your heart and high blood pressure. It also helps with the water retention. Do this at least 3 times a week. (I swear by it)

* Tell all of your other doctors that you have Conn's Syndrome. The more they know the better. Most other doctors may not even know what it is, so you'll be educating them. This also helps with the management of prescriptions-- your other doctors need to know that you are on spironolatone/aldactone/other potassium sparing diuretic, or taking potassium supplements and high blood pressure meds.

* Take your BP meds daily, don't ever skip.

* Make sure if your doctor is suggesting surgery, that he/she has you take an Adrenal Vein Sampling test, (A.V.S.). This is crucial to determine if the tumor is unilateral or on both adrenals. You wouldn't want to go through surgery only to find out later that your other adrenal is also producing too much aldosterone. If you have the A.V.S., make sure the interventional radiologist performing it has a background of doing these tests. This is important--you don't, I repeat, DON'T want to have to go through another A.V.S. test. They are painful and take a lot of time (as well, they are expensive).

* Never take other diuretics, for example diet pills. You'll lose potassium.

*While this may be hard for some (or maybe unnecessary), I do suggest going on anti-depressants. Conn's is a disease that messes with your hormones, even if it's the hormone aldosterone. When there's an imbalance with your electrolytes, it can affect you over time. The exhaustion and brain fog is enough to affect anybody, as is insomnia.

* Confide in a really good friend or lover about your condition. Everybody varies in the severity of symptoms, but there will be times you will feel down, out of it, forgetful and just plain exhausted. Having a confidant really helps. It may even be someone you don't know very well, like an on-line friend. But reach out-- you really need to be supported right now.

* If you choose to manage your Conn's with a life-long commitment to medication, find out as much as possible about the long-term effects. Ask doctors or even better, other Conn's sufferes who have chosen this route. This goes for surgery as well. The more you ask, the more you'll know how to live with Conn's.

The Third and Final Endocrinologist

2008-11-22T10:38:00.000-08:00

Out of frustration, with no where else to turn, I called Dr. Armando Sardi at Mercy Medical Center to ask for advice. I told him I had been diagnosed with an adrenal tumor and Conn's was highly suspected. He talked to me for at least 25 minutes, telling me he was very familiar with the condition, as well he had surgically removed quite a few adrenal glands/tumors in his career. Finally, I thought, someone who really knows this disease. I asked for endo recommendations and he pointed me in the direction of Dr. Pamela Quinlan at St Agnes Hospital. I called her office, made and appointment and she became my final endocrinologist. The lady knows her adrenal diseases and then some.

She spoke to me like an adult and didn't hold back on the technical jargon, which suited me fine. When I first was diagnosed, I promised myself I would learn as much about this disease as possible. Through Dr. Quinlan, I have learned more than I ever realized was possible-- some things I have a hard time articulating in this blog-- but at least I understand the bottom line. I often left her office with my head spinning but still felt she was on my team. And if I had to choose too much vs. too little when it comes to my health, I'll lean towards the hefty portion of things.

She explained the hormonal breakdown in the adrenal, and told me it was important to rule out other adrenal diseases such as Cushings. Thankfully, after all the tests I took, that disease was eliminated from suspicion. I'm just a Conn's girl.

Throughout it all I have asked her a lot of detailed questions, and she has always taken the time to sit down and answer all of them. If you have found an endo like this, take advantage of her time and research background. It will give you options you may not have thought about. Even if what she tells you scares you, you at least will know where you stand, and can be a gift when you are battling such an unfair disease that takes so much away, both body and mind.

If you live in the Baltimore/DC area:

Dr. Pamela Quinlan, D.O.
3421 Benson Ave.
Suite 210
Baltimore, MD 21227
410.368.1370
drquinlan@verizon.net

The Second Endocrinologist

2008-11-20T19:47:00.001-08:00

Late May 2008.

New hospital, new endocrinologist, maybe a fresh start? Next visit with Endo #2 went somewhat better in the beginning. He was very quiet and soft-spoken but again, he made no eye contact like endo #1 (I swear I'm trying not to take this personally). Since I hadn't been formally diagnosed yet, I was still confused as hell- all I knew is I had an adrenal tumor and lots of weird symptoms. What made me uneasy was that he kept looking up information on the internet as opposed to being well-versed on adrenal tumors with my symptoms. This made me worry a bit. What if I had something really rare?

Turned out, I did. During the visit, he mentioned terms like Conn's syndrome, Cushings disease and hyperaldosteronism, but that was all. He didn't give me much of an explanation of them. I wasn't sure what they were, actually I had never heard of them. I barely knew my endocrine system, which embarrassed me a bit. But unless you study medicine, why would you? I suppose it's a bit like war. Go to war, learn your geography...get an adrenal tumor, learn your endocrine system.

This is what we knew so far:
1) I have low potassium levels in my blood
2) I have an adrenal tumor on my right gland
3) I have high blood pressure
4) That's about it... although I had a slew of other symptoms at that time he didn't seemed too concerned about.

My other symptoms included:
1) Dehydration, especially at night
2) Polyuria- I pee like, well a racing horse, at least 10 times a day, 4-5 a night-no lie.
3) The fiercest migraines, they started about 2 years ago
4) Heart arrythmia at night thus making sleep almost impossible
5) Chronic fatigue
6) Tingling in hands and feet
7) Depression, which may be due to the above

By the end of the appointment, he told me I had to have a lot more blood work, but no more spironolactone for at least 6 weeks, at which point I was to take a saline suppression test. So what about my high blood pressure, what about a diuretic? None, he said, but I had to take potassium supplements 3 times a day. I already was having a horrible time retaining fluid. This was starting to really suck. One thing he said in grained in me was that each test HAD to be done in order, it was a process and it can take a long time. What he forgot to tell me was how bad I'd still feel throughout the testing period. Depression was right around the corner, I could feel it.

The following weeks, I did the blood work as he ordered, but within 3 weeks, I had sunk so low and my energy was completely zapped. My migraines were back and I didn't know what to do other than call him and tell him what was going on and how bad I felt. When I called him it got very strange-- he yelled at me and said I had to follow the order of these tests, there was NOTHING more he could do. But that wasn't the worst part, he then told me, "Well... at least you don't have cancer, this we know." And then there was the longest silence I have ever experienced with a health care professional; it seemed like 2 minutes passed without him saying a word. I knew something was very off about the experience and I got off the phone quickly. I thought his phone behavior was really rude and especially odd, he was such a soft spoken man in his office. He really freaked me out with his loss of composure. Later that day, I found out through a friend who works at the same hospital that Endo #2's wife was just diagnosed with breast cancer. Evidently he had taken his pain out through losing his temper on others as well, including staff and patients, I assume, which is never a good sign. So, I'll pray for his wife while I go look for Endo #3.

The First Endocrinologist

2008-11-16T11:31:00.000-08:00

May 2008.

The reason for sharing this visit is to alert other Conn's sufferers that your symptoms may not be taken seriously at first. Unless you are rushed to a hospital for high blood pressure/heart palpitations or your blood work shows really low potassium levels, many doctors will dismiss your symptoms as common effects of age and stress. Even endocrinologists.

I was recommended to one of the best endocrinologists in town by my cardiologist. I got an appointment within a few days of her referral, which was pretty impressive. When I arrived I was seated in a small but nicely decorated waiting room. The doctor was middle eastern and had the prettiest hand-carved chairs I've ever seen. He (whose name shall not be revealed as I am fighting with the insurance company to not have to pay for his severely awful services), called me into his office and asked me why I came. I told him about the CT scan, the adrenal tumor they found and all about how lousy I was feeling. I also told him I was scared about my potassium levels being off and how alarmed my cardiologist was about that. He barely looked up at me. He asked me a few questions and then very rudely went on to answer no less than 7 phone calls on his blackberry and another cell. At one point I think he had the 2 phones going during my visit. He said he gives out his cell number to all his patients, that I could have it too. But I didn't want his cell number, I just wanted his diagnosis and help. He was making lunch plans with another Dr.and kept saying he'd see him in 10 minutes. Not a great first impression for a new patient.

After a rather speedy exam, I got dressed and met him back in his office where he continued to answer his ringing phones. I found it very hard to believe this was the same doctor my cardiologist praised. He was an unprofessional jerk. I felt judged when he asked if I was married, he kind of glared at me. I am divorced and fine with it but you know, some men just aren't. Towards the end of our appointment, I asked him how he felt about hormone replacement therapy. He said, and this is a quote, "That's the most intelligent question you have asked me today." My God. I got a slip for 3 weeks worth of intensive blood work and was told to stop taking spironolactone, a potassium sparing diuretic for hypertension.

That was my first visit with an endocrinologist and probably my worst visit with a doctor ever. I was left to wonder, is it always going to be like this?

After taking each test precisely the way he told me to, I waited for the results. And I waited, and waited...for two and half weeks. I finally called his office and his assistant said he was out of the country, plus she couldn't find the results but was sure he would call me Monday first thing. He never did. His assistant called me back sometime that week, seems she found my results and she said that my potassium levels were normal. The receptionist is now a doctor. My potassium levels were 3.4, normal is 3.5-5.5. That didn't seem normal to me. Confused once again, I told her I wanted to talk to the doctor to see if I was just borderline affected or did I really have a problem due to the tumor. I waited an entire week to hear from him. I called again, knowing he was back in the country. His assistant told me again he'd call me to discuss my results before the weekend. And again he did not call. At this point I called my cardiologist and explained to her assistant what I had been through. Her assistant is one of those people you want on your side, she is take-charge and is fiercely loyal to the Doctor's patients. She marched down the hall to get some answers and came back on the phone saying he would call me immediately. He finally called and said the levels were low-ish and more testing would be required. He never once apologized for keeping me waiting for two weeks. All that and he charged me $437.00 for one visit. I never went back to him, I called my cardiologist and told her she should NOT recommend him. She actually agreed with me. A small victory for the battered and abused patients of America.

Oh and by the way, he never gave me his cell number. That might have helped.

Aldosterone: the hormone we never knew we had

2008-11-12T18:43:00.000-08:00

Aldosterone is being over produced in my left adrenal. I had no idea what it was until I was diagnosed with this disease back in July. Wanting to learn as much as I could about this weirdly named hormone, I did some research to find out what its role was in my adrenals and what happens when too much of it is being produced.

The definition:
Aldosterone is a hormone released by the adrenal glands. It regulates the levels of sodium and potassium in the body, which in turn helps control blood pressure, the distribution of fluids, and the balance of electrolytes in the blood. Aldosterone is the main sodium retaining hormone from the adrenal gland. It increases the re-absorption of sodium and water along with the excretion of potassium in the distal tubules of the kidneys. Pathologically elevated aldosterone secretion with excessive retention of salt and water often results in the raising of blood pressure. High levels of aldosterone can cause a condition called aldosteronism or hyperaldosteronism, also known as Conn's Syndrome.

If a tumor is present, a test will show that aldosterone levels are high, while a renin level will be low. Usually a renin activity test is done when the aldosterone level is measured.
Aldosterone levels may vary between males and females, and can be dependent on the amount of salt in a person's diet. In pregnant women, normal aldosterone values may be 2 to 3 times higher than in women who are not pregnant. Normal aldosterone levels in infants and children may be significantly higher than those of adults.

Typical Symptoms of hyperaldosteronism or Conn's

2008-11-10T17:11:00.000-08:00

These are my personal symptoms. While they can vary, many of my fellow Conn's sufferers have complained of these.

1) Fog: I'm in a constant state of fog. That's the best way I can describe my current state of being. It's been like this for a long time now...can't really remember when it started. I feel like I'm just going through the motions but am not really there. Like I'm stoned or something. I also forget stuff a lot which can range from the really stupid to the important.

2) Exhaustion: I never seem to have enough energy I am chronically exhausted. If I don't take a nap I am utterly useless. When I wake up I don't want to get out of bed, even in the morning. All I want to do is sleep. But I could sleep forever it seems and still be tired.

3) Fatigue: It's endless and debilitating. It relates to the above.

4) Rapid Heart Beat: Heart palpitations at night especially, will make you think you are having a heart attack sometimes. I feel this mostly at when I am lying down trying to fall asleep.

5) High Blood Pressure: Was oddly diagnosed with this 6 years ago and have been suspicious as to why at my age (I was considered young for it).

6) Weight gain/Bloatedness: While I'm in my forties, weight gain is to be expected. I didn't gain a lot, but the problem I'm finding is the bloatedness that I can never seem to get rid of. I find it in my hands, ankles and face.

7) The Salt/Sugar: This connection is undeniable. Both are craved, but the sodium does damage, you will puff when you eat anything salty. As well, the next day you will feel awful after eating these foods.

8) Migraines: I been having migraines now for 3 years. Never had them like this before. The first really bad bout that I can remember was in the Canary Islands in June of '06. I thought maybe the island's altitude fluctuations may be the culprit, I had clusters of them for a week. But when I came home, I still got them off and on for long periods of time. It's been years now.

9) Dehydration: I am always dehydrated. I drink water constantly and I'm still thirsty after wards.

10) Frequent Urination: Maybe due to the above, I get up to pee at night at least 4 times. I've told doctors this and I know they think I am exaggerating, but I am not. It has been this way for at least 4 years. I was told to stop drinking water a few hours before I go to bed, but this hasn't helped. I continue to do so.

10) Nerves Shot/Defensive: I have felt like this for a long while. It's like I fear an attack is coming and I can't win-- it's the worst. I used to think it was from lack of sleep, maybe due to getting up so often at night, but now I think it makes sense; the adrenals are your fight/flight responders, and mine are shot.

These symptoms were given to both my endocrinologist and surgeon in June-July. I was told by each that they are most likely directly related to the hormones in my adrenal. When your electrolytes are off, you are off.

What is Primary Hyperaldosteronsim?

2008-10-30T20:39:00.000-07:00

There are many definitions of this disease which can be confusing. This is one I found at emedicine.com http://emedicine.medscape.com/article/127080-overview
It describes primary hyperaldosteronism in medical detail that's easy to understand. I think it's better than the first description I posted.

Background

Although initially considered a rarity, primary hyperaldosteronism (PH) now is considered one of the more common causes of secondary hypertension (HTN). Litynski reported the first cases, but Conn was the first to well characterize the disorder in 1956. Conn syndrome, as originally described, refers specifically to PH secondary to an adrenal aldosteronoma.

While older data suggested that PH is rare, with an estimated prevalence of less than 1% of all patients with HTN, subsequent data indicated that it may actually occur in as many as 5-15% of patients with HTN. It may occur in an even greater percentage of patients with treatment-resistant HTN. Although still a considerable diagnostic challenge, recognizing this condition is critical because PH-associated HTN can often be cured with the proper surgical intervention. The diagnosis is generally 3-tiered, involving an initial screening, a confirmation of the diagnosis, and a determination of the specific subtype of PH.

Although prior studies suggested that aldosteronomas are the most common causes of PH (70-80% of cases), later epidemiologic work indicated that the prevalence of PH due to bilateral idiopathic adrenal hyperplasia (IAH) is higher than was previously believed. These reports suggested that IAH may be responsible for as many as 75% of PH cases. Moreover, reports have described a rare syndrome of PH characterized by histologic features intermediate between adrenal adenoma and adrenal hyperplasia. Clinically, the distinction between the 2 major causes of PH is vital because the treatment of choice for each is different. While the treatment of choice for aldosteronomas is surgical extirpation, the treatment of choice for IAH is medical therapy with aldosterone antagonists.

The complete list of entities known to cause PH includes aldosterone-producing adenomas (APAs), aldosterone-producing renin-responsive adenomas (AP-RAs), bilateral adrenal (glomerulosa) hyperplasia or IAH, primary adrenal hyperplasia (PAH), and familial forms of PH. (The ovaries and kidneys are the 2 organs described in the literature that, in the setting of neoplastic disease, can be ectopic sources of aldosterone, but this is a rare occurrence.)

Two distinct genetic-familial varieties of PH exist. Sutherland and colleagues first described the type 1 variety of familial PH, glucocorticoid-remediable aldosteronism (GRA), in 1966. In GRA, HTN responds clinically to small doses of glucocorticoids in addition to other antihypertensive agents (see Image 2).1 The type 1 form of familial PH is due to a chimeric gene product that combines the promoter of the 11beta-hydroxylase gene with the coding region of the aldosterone synthetase gene. The type 2 variant of familial PH (which is not glucocorticoid sensitive) was first described in 1991. Although the exact genetic abnormality for type 2 PH has not been identified, data suggest that this type may be associated or closely linked with the MEN1 gene locus on band 11q13.2

Related eMedicine topics:
Adrenal Adenoma
Hyperaldosteronism [Pediatrics: General Medicine]
Hyperaldosteronism [Radiology]
Hypertension [Nephrology]
Hypertension [Pediatrics: Cardiac Disease and Critical Care Medicine]
Hypertensive Heart Disease

Physical

The cardinal pathophysiologic anomaly causing primary hyperaldosteronism (PH) syndrome is autonomous aldosterone production. In addition to nonsuppressible aldosterone production, suppressed and poorly stimulative levels of plasma renin are in the presence of only mildly expanded intravascular and extravascular fluid volume. Normal regulation of aldosterone secretion is mediated to varying degrees by renin, serum potassium and sodium levels, intravascular volume status, and adrenocorticotropic hormone (ACTH). Regulation of aldosterone production by these factors may be altered in a variable fashion, depending on the subtype of PH. Generally, APAs and PAH (see Image 1) remain ACTH responsive, while IAH and AP-RAs maintain responsiveness to the renin-angiotensin system (RAS).

In GRA, the RAS is suppressed, and aldosterone is regulated by ACTH because of the chimeric genetic combination of an ACTH-sensitive promoter with the coding regions of the aldosterone synthetase gene (which normally does not have such a promoter). Thus, ambient ACTH levels pathologically overstimulate aldosterone synthesis inappropriately.3 In patients with GRA, the administration of dexamethasone (or any other glucocorticoid) at doses sufficient to suppress ACTH production results in a reduction in aldosterone synthesis and natriuresis and in the correction of the biochemical anomalies of PH.4 Histologic studies in this disease have shown specific hyperplasia of the zona fasciculata, with concomitant atrophy of the zona glomerulosa.

Frequency
United States

The exact prevalence of primary hyperaldosteronism (PH) is unclear. PH appears to contribute more significantly than was previously thought to the prevalence of essential hypertension (HTN). Estimates suggest that 5-15% of essential HTN cases may be due to PH. The prevalence of PH is probably higher in patients who have a low serum potassium level, in patients who are elderly, and in patients who have HTN that is resistant to single medication use.

International

No evidence demonstrates that primary hyperaldosteronism, in its more common forms, occurs in relative excess in any part of the world.

Race

Primary hyperaldosteronism occurs worldwide. Several reports suggest a higher prevalence in African Americans, persons of African origin, and, potentially, other blacks. This appears particularly true of the IAH variant of the disease.

Sex

APAs are more common in women than in men, with a female-to-male ratio of 2:1. IAH is more common in men than in women, with a male-to-female ratio of 4:1.

Age

The typical patient with APA is a woman aged 30-50 years. Accumulating data for IAH suggest different demographics. IAH is more prevalent in men than in women and peaks in the sixth decade of life.

Clinical
History

The clinical presentation of primary hyperaldosteronism (PH) is not distinctive, and the correct diagnosis requires a high index of suspicion on the part of the physician.

* The common clinical scenarios in which the possibility of PH should be considered include the following:
o Patients with spontaneous or unprovoked hypokalemia, especially if the patient is also hypertensive5
o Patients who develop severe and/or persistent hypokalemia in the setting of low to moderate doses of potassium-wasting diuretics
o Patients with refractory hypertension (HTN)
* The 2 major familial varieties of PH are GRA (type 1 familial PH) and a non – glucocorticoid-remediable type (type 2 familial hyperaldosteronism).
o The recognition of GRA is particularly important because of its implications for patients who are hypertensive and whose family members are apparently unaffected.
o HTN, strokes, and other significant cardiovascular events are described in young persons with this syndrome.
o Although the syndrome is uncommon, heightened levels of suspicion are essential for the diagnosis. Fewer than 150 well-validated cases exist in the literature. All patients with GRA should be treated medically with glucocorticoids and without surgery.
o Although uncommon, GRA may be more prevalent than was previously presumed. A significant subgroup of patients with the milder normokalemic variety of this syndrome is probably incorrectly presumed to have essential HTN.
o A family history of HTN (particularly with a young age of onset), HTN in children, low-renin HTN, and presumed IAH are the typical situations in which this diagnosis should be considered.

Patients with primary hyperaldosteronism do not present with distinctive clinical findings, and a high index of suspicion based on the patient's history is vital in making the diagnosis.

* The findings could include the following:
o Hypertension (HTN) - This condition almost invariably occurs, although a few rare cases of primary aldosteronism unassociated with hypertension have been described in the literature.
o Weakness
o Abdominal distension
o Ileus from hypokalemia
o Findings related to complications of HTN - These include cardiac failure, hemiparesis due to stroke, carotid bruits, abdominal bruits, proteinuria, renal insufficiency, hypertensive encephalopathy, and hypertensive retinal changes.

It is important to note that primary aldosteronism in and of itself is typically not associated with edema, despite the volume-expanded state associated with it. This is due to spontaneous natriuresis and diuresis (called the aldosterone escape) that occurs in patients with primary aldosteronism and that appears to be mediated by atrial natriuretic peptide (ANP).6, 7 Thus, the finding of significant edema in patients who are presumed to have primary aldosteronism suggests either that a wrong diagnosis has been made or that associated complications, such as renal or cardiac failure, are present.

Causes

The exact cause of sporadic primary hyperaldosteronism (PH) due to an adenoma or hyperplasia is unclear. The existence of trophic factors has been postulated in hyperplasia. Somatic mutations of genes leading to growth advantage in the adrenal adenomatous tissue are a possible, but unproven, cause.

* In familial forms of PH, the molecular basis of GRA is known. GRA is due to a mutation that results from a hybrid gene product.2 The 11beta-hydroxylase and aldosterone synthetase genes that are normally located closely to each other on chromosome 8 cross over to create a novel hybrid gene product. This hybrid gene consists of the regulatory ACTH-responsive sequence of the 11beta-hydroxylase gene, fused to the structural component of the aldosterone synthetase gene.1
* Most sporadic aldosteronomas arise from the zona fasciculata, and they often have surrounding glandular hyperplasia close to the adenoma. This suggests that a proliferative response of cells to some presently unidentified paracrine/autocrine factor occurs. Within this zone of hyperplasia, a clonal change in a single cell is believed to take place, thus providing the nidus for the developing adenoma.
* The genetic basis of type 2 familial hyperaldosteronism is unclear; however, several reports of patients with this condition have shown a loss of heterozygosity close to the MEN1 gene locus (band 11q13).2 Whether menin mutations exist in the adrenal tissue of these patients is currently unknown. This syndrome can histologically manifest as hyperplasia or adenomas.
* The existence of tertiary hyperaldosteronism as a separate entity remains controversial. The entity is presumed to result from chronic elevations in plasma renin levels and secondary hyperaldosteronism, which eventually establishes a state of autonomous, unregulated hyperaldosteronism with a histologic picture of mixed hyperplasia and adenomas in the affected adrenocortical tissue.
o Few well-described cases exist, but in most, the adrenal glands are hyperplastic, often with nodular hyperplasia (which can cause diagnostic confusion). Virtually all of the cases described are in the setting of renal artery stenosis.
o Initially, renin levels are elevated, which is typical of secondary hyperaldosteronism. When the tertiary (autonomous) phase develops, the biochemical profile changes to a low-renin/high-aldosterone state. The paradigm is analogous to the pathogenesis of tertiary hyperparathyroidism.