Saturday, 24 May 2014

We need more research and media attention for Conn's



Dr. Jerome Conn

If you have been following this blog, you know I have struggled just like you with the debilitating disease called Hyperaldosteronism, also known as Primary Aldosteronism and more commonly referred to as Conn's Syndrome. For seven years, I have chronicled my journey from the steps it took to get a diagnosis, to finding a good endocrinologist who understood the disease (no easy feat), to my ultimate choice of having surgery.

I receive questions from people all over the world, from the recently diagnosed to those who are waist deep in the murky waters of Conn's. And then there are the survivors who opted for surgery like me whose ultimate question remains steadfast: Are we going to be able to live a normal life with one adrenal gland?

Well, yes, I believe so, but it will be tricky at times.While a few people have written to say that they have their lives back with little repercussion, there are many more who continue to have issues--big ones-- that they directly attribute to losing an adrenal gland. I include myself in that group.

Many of us are experiencing similar issues: hypoglycemia; affects from severe stress that can result in adrenal hypofunction (symptoms similar to Addison's disease); hormone imbalances in women; and hyperinsulinism- the result of overtaxing the remaining adrenal.

Sadly, there is little to no post-surgical data on our disease to be found on the internet. We are left on our own, seeking out the help of each other, wondering why our endocrinologists don't have the answers to our questions and seem to break up with us after surgery. If only Dr. Jerome Conn was still alive.

While surgery can be a life saver, managing stress is crucial to the body and mind. Living with only one adrenal gland can seem like a see-saw ride, sometimes you're up and feeling free of ailments, the next you're on the ground wondering why you are having more health issues after the faulty glad has been removed.

Other glandular diseases like Addison's and Cushing's seem get most of the attention. From what I have learned from having this disease, Conn's patients need some more attention too. But even today, many sites like the National Adrenal Diseases Foundation (NADF), still don't merit the symptoms so many patients experience. I for one know they exist as I had them and countless people who read this blog have too. I contacted the NADF three years ago to get them to add the numerous other symptoms and was fortunate to get a response from Dr. Paul Margulies: http://hyperaldosteronism.blogspot.com/2012/01/change-in-nadf-conns-description.html. Yes, they added the other symptoms, but they still wrote:

"While most individuals have no specific symptoms, some may have fatigue, headaches, muscle weakness and numbness. The physical examination is usually normal except for the elevated blood pressure"

The three underlined words are disturbing to me as I have received many emails from patients suffering with debilitating symptoms that have affected their lives traumatically. 

The Clinical Journal of the American Society of Nephrology state that 10% -15% of newly diagnosed hypertensive patients are due to primary aldosteronism. Considering the amount of Americans that have high blood pressure, this number translates into an alarmingly high percentage. If that alone isn't enough to get more research and attention, think about this: of those 10-15% of people, how many are getting the treatment they need for Conn's or are their doctor's simply passing out meds without looking further into other symptoms? I realize the potassium levels are usually the indicator and some patients with this disease have somewhat normal range levels. But if they are complaining about migraines, polyuria, tingling limbs, fatigue and brain fog, shouldn't doctors pay attention to these and delve a little deeper? I think so.

So what can be done for our misunderstood Conn's group?  For starters, it would be great if our designer disease got some major media play, like on The Doctor's or Dr. Oz  I've contacted the Dr. Oz show twice but received no response. Maybe if someone really famous got this disease it would help, which is a terrible thought, but has some truth.

At this point, I suggest we continue to help and support each other here and on other sites. But, if you are on a medical site and read that there are no known side effects of Conn's, I highly suggest you contact that site and tell them your story. The more people know about the reality of this disease, the more informed we can become to help the next guy who gets diagnosed with this strange adrenal condition with an awfully long name.









Sunday, 16 March 2014

Living better with supplements


It's hard to believe it's been almost five years since my adrenalectomy! I am continuing to learn how to take better care of myself, which seems easier in theory than in practice. Despite what all the doctors said, there are changes that have had to be dealt with. The number enemy still remains to be S-T-R-E-S-S.

On the upside, I continue to live without the daunting effects of Conn's, like high blood pressure, bloatedness, fatigue, polyuria, brain fog (this was the worst), and paresthesia. With the aldosterone producing tumor gone, all of these side effects should be gone for all who choose surgery vs. living with the tumor and taking meds. 

That said, as I've mentioned in other posts since the surgery, I have had a tough time with hypoglycemia and have to monitor my sugar levels constantly. While I was diagnosed with this years before the adrenal tumor, I notice its presence more now. I continue to be careful with making sure I have trail mix or nuts with me at all times, water too. I notice I am more prone to episodes when working out. Stressful days followed by a workout at the gym can make it worse. Symptoms include feeling faint, sweating, confusion, and shakiness. This can be a dangerous condition, so if you think you have it, consult your doctor.

Stress in any form seems to affect me more now than ever. Perhaps that is due to just one adrenal doing the work for two. I don't know. Memory issues have reared their head again, but this is not from Conn's, it was tragically caused by acute exposure to carbon monoxide my boyfriend and I suffered from in 2012-13. That story remains for another posting, another day.

But the good news is I have adopted a daily supplement plan that has made a big difference in my life. I am going to list these for you or anyone that may benefit. Please note, this is a personal regime, I am not a doctor and I do not advise anybody to take these without doing research or consulting a doctor. 

For Stress:
B6
Omega 3's
Tumeric (also good for pain)
Theanine (anxiety)
Taurine (anxiety)
Vit. C (boosts adrenal hormones)
Ginger tea for stomach upset and reducing inflamation
Licorice tea for acid reflux, digestive issues and respiratory infections

For the Liver:
Milk Thistle
Alpha lipoic acid
N-acetyl-Cysteine
Vitamin E and D

For Adrenal Support:
Magnesium (this also helps with anxiety)
Zinc
Ashwaghanda

For Hypoglycemia:
L-Carnitine
Chromium Picolinate

Always follow the recommended doses. 

**Remember, these are merely the things that I use to help my remaining adrenal gland and cope with stress. Always consult your doctor or Naturopath before beginning a supplement program. 

Hopefully this information is useful to you. I always like learning what helps for others, so let me know if you have suggestions that have made your mono-adrenal journey better.


Monday, 24 June 2013

June 2013-More post-Conn's Updates



It's been way too long since I last updated this important site. Please don't take my absence as a sign I have moved on after surgery and forgotten about all of you. I've merely been focusing on making a living, literally trying to survive in the high desert where the economy has seemingly vanished (which is Santa Fe, NM). I can honestly say it's often been a challenge living with one adrenal while dealing with the frustrations of work, lousy bosses and landlords. Thank goodness for spring.

I've recently discovered a site called Life Extension  that my scientist friend suggested. Under the adrenal section, I found some good supplements for taxed glands (gland). I now L-Carnitine  and ALA (alpha lipoic acid) which helps build up insulin resistance and is also good for the brain. I'm about to add DHEA which is also good for the adrenals. I have noticed positive effects since starting them a month ago; I have more stamina and am less confused-which is an after-effect not from Conn' s but from CO poisoning in my old rental unit (more on that below). I continue to take vitamins C, E, B (pretty self explanatory). But some new additions include Taurine-an anti-oxident that also helps protect against cardio vascular disease; Lysine-an amino acid for lowering my glucose; L-Theanine-to help curb anxiety and prevent Alzheimer's; Magnesium malate-for fatigue. I am also a big tea drinker and add a mixture of uva ursi and passion flower which helps with UTI's and calms me down.

Re: the CO poisoning-- last October '12- January '13, the wall heater in my house was found to have had a leak in it- determined by NM Gas company in early January. It had been ongoing for months, and I nearly lost my dog, cat, my boyfriend and my own life. The animals slept by the unit and were lethargic and had seemed sick since October. I had severe headaches, confusion and balance issues, followed by depression and exhaustion. My boyfriend had it acutely and was extremely ill. Convinced it was the flu, we found out it was deadly CO gas, 1000 ppm- a very high, lethal amount. We are grateful to all have made it through, though Eddie and I still struggle with lingering issues.If anyone reading this has had a similar situation, please email me (clangrall@gmail.com) .

We have all moved from the property and have begun the healing process, which will take along time according to doctors. After dealing with Conn's, this the second most awful health scare I've ever experienced.

As I navigate through this new health crisis, I am reminded of the lessons I learned when I had hyperaldosteronism.   Be patient, do research, talk to others who have dealt with your condition, be gentle with yourself, have HOPE, and know this too shall pass with the right treatment.

Perhaps it all is a lesson on how I need to take better care of myself. One thing I learned through this hell is that my remaining right adrenal gland sure is a strong one!

Well, that's about it for now. Remember: Stay strong, be your own patient advocate, know there hope for Conn's, don't give up--focus on becoming an ex-Conn like me and take the time to appreciate all that you have.


Wednesday, 5 September 2012

Three and a half year follow up



My apologies for taking so long to write. After moving out west 2 years ago, my time has been divided between writing, two part time jobs, my very first dog and a new relationship.

So much has happened since my surgery 3.5 years ago. Starting this blog has been one of the best things I've ever done. I knew when I got Conn's I would end up helping others, I suppose I am a "connector," as my network savvy friends call it. Had I not used my love of writing as an outlet, I can honestly say, I would not be where I am now. Taking control of your illness is not only empowering, it's vital to your own personal healing journey.

To the many wonderfully strong, brave people who have contacted me on this site through comments and emails, thank you. I'm glad I have helped provide information, at the very least, support for your journey. My apologies for not answering all the comments, perhaps one snowy day I will have time to do this. For those who have contacted me directly by email or phone, I thank you for being strong to advocate for your wellness. If anything I have learned about this disease, you must be as pro-active as possible, or you may get lost in the heavy endocrine verbage and the seemingly endless road of weekly tests.

I have tried to keep this blog professional and without too much personal emotion. I did this for two reasons, first because I don't like to divulge too many intimate details of my life and second, because if I did, I fear those emotions would take over and cloud the purpose of my blog's objective, which is to help others.

So what's been going on health-wise since the miracle surgery? A lot that's for sure.

I am technically healed of hyperaldosteronism, but now have severe hypoglycemia. It's to the point that all my friends know to have protein, water or electrolytes on hand when I'm around. I crash easily and am still learning about diet. I have cut out glutens, avoid highly sugary food (although adore cake and ice cream, so you know this is tough), ration the morning coffee to every other day, and have 1-2 glasses of wine at the most if I go out. If I break this pattern, I suffer and have only myself to blame.

I often experience nausea which I never had before, and get a little depressed/agitated if my regular exercise routine is disrupted. Physical exercise is vital to me now and I seem to have a higher tolerance physically than dealing with emotional stuff. I didn't sweat for 2 years and now can't seem to stop!

On the emotional front, I get tired easily when dealing with tough stuff, like high drama neighbors, bosses and family. Fatigue is still the enemy that I often battle. Stress, including emotional trauma, really levels me, far more than ever before. I chose flight over fight, even when I know the other person is being unrealistic or a manipulative jerk.

If any other post-surgical people encounter these issues, I would love to know. I have my suspicions that one adrenal can only do so much... an imbalance to the 'fight or flight' command center has to have its consequences.

As far as the "girl stuff", I'll spare male readers the discomfort of having to read about not-so-fun details and suggest that my Conn's sister's contact me directly at my personal email if they have questions: clangrall@gmail.com. My smarty pants doctor in Santa Fe has a philosophy on this... she believes there is a direct connection between the reproductive system and the adrenals, and I am starting to agree with her when I think back to my former reproductive hell days of miscarriages and Menorrhagia.

Regardless of these little disruptions, I continue to live my life to the fullest, staying in the present, trying not to get caught up in the past, or look too far into the future. I feel lucky and know this disease happened to me for a reason.

Conn's patients who are given the gift of surgery (yes, it really is a gift) to remove the adenoma/tumor will no doubt see an improvement in their lives. But what's around the corner remains to be seen. As long as we keep the lines of communication open, we can support each other while learning new ways to cope with our post-surgical lives.

Whatever I learn or experience, I will post. Until the next weird symptom, here's to taking control of your pain and life! Don't stop empowering yourselves.

~Carole



Thursday, 19 January 2012

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


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.

Saturday, 26 November 2011

Hypoglycemia

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.

Wednesday, 16 November 2011

Almost 3 years after surgery....

...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 one glass of wine.

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.