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 unexpected journey do too. It would be easy for me to walk away from the support sites and blogs in an effort to close that difficult chapter, but I don't think that would be the right thing to do. So, I will continue to write updates and post anything relevant to this disease I come across in hopes of helping others who deal with Conn's.
One 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 simply stress related or due to having only one adrenal gland. 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. Weird. 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 hear about it.
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 one is the toughest, so 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 like I may pass out. These seem like good questions for my G.P. next week as I no longer have an endocrinologist.
To some, these concerns may seem mundane in comparison to the big pay-off that erased the larger, more life threatening symptoms. Before I was diagnosed, I could handle all of the above mentioned things far better, now I am expected to be super-woman according to my surgeon. But I'm not even close. I realize 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 age? I would really like to be educated now and know what could be around the corner.
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 misdiagnosed 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.
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21 comments:
Thankyou so much for everything you write. Its so so helpful to know I'm not alone with this and to see other people's similar experiances.
My name is Abi. I'm twenty years old. I can't be bothered going into all the details of the diagnosis process (ask me if you are interested) but it took about three months (which I understand is actually quick comapared to other people's experiances)to be diagnosed with Conn's during which I could hardly walk up the street and spent most of my time on the couch. I had my adrenalactomy at the beginning of December 2009 (six months ago). THank G-d the major symtoms are gone and I am so so so much better than I was. But, at this point I am still struggling with fatigue. I get weak and achey very easily. I am basically only busy for half the day and I feel like I can't do more than that at the moment. I need a lot of sleep, Its hard to get up in the mornings even after nine or ten hours sleep. I can do a half hour workout, or an hour of lighter physical stuff.
I also feel like I get all weak and wobbly if I don't eat for too long.
Another thing I have noticewd is that I quite often have stomach aches, I don't know how that fits in to things.
Anyway, thankyou for your encouraging blog. I'm hoping that in another few months I will feel stronger and able to do more.
How long did it take for your fatigue to get better?
I wish you luck with everything and wish us all physical and emotional strength!
Abi
Flower Spy,
I had surgery in Feb and felt fabulous soon after. I am off all BP meds and the major symptoms are gone.
On the other hand, I too have days where I feel absolutely worthless, with no energy. Today I slept til 10 am and was ashamed. (come to think of it, it is overcast, cold and rainy)
I have been wondering if it is depression too. Hearing you are experiencing similar feelings makes me feel somewhat better. I have to remind myself not to be so critical, after all, I am cured right? I also wonder about the effect of alcohol. I enjoyed beer before but now I don't think my body can handle it.
Is depression normal after any surgery or as a result of the gland removal? Kinda like what came first, the chicken or the egg?
Hang in there we need you.
"t"
Abi and Anonymous,
Thanks for your words and sharing your issues. Gosh, it's weird, but there does seem like there is more to this disease than meets the eye. Yes, we are healed, but the depression is something no endo seems to be able to explain. The fatigue comes and goes and Abi, the nausea is new for me too. I've never suffered from that, but struggle a almost daily now. As well, my IBS is in full swing. I just wish the was SOME doctor who could explain all this--it has to be connected, right?
Peace and healing energy to you both~flower spy
Thank you for the much needed information. I became greatly fatigued in the Fall of 2005. Been to 14 specialists. In 08, went to endo who checked aldosterone/renin. Aldo 38 renin .3. He put me on Norvasc 5 mg for hypertension. Results came back for elevated aldo/renin, then wanted to do saline suppression. Never told me to get off Norvasc. The 1st blood draw on day of saline suppression aldo was 2! Here we go with the 4 hour test to see if my aldo will suppress. It did to <1. Wow! You are right about endo's. Some of them just do not have a clue. I wound up taking my health into my own hands and did hair anaylsis. Everything was below low. Hair analysis recommended calcium, magnesium, zinc, b5, taurine. 3 months later sodium was off the chart and potassium was really high. During the time of taking the supplements, when I worked outside I would actually sweat like crazy (which I never did much of) and the salt taste, oh my gosh, has never tasted so salty, burning my eyes like crazy. The hair anaylsis changed my supplementation and then I start with crashing blood sugars so I stopped the whole program. Dec 2009, I started the hormone replacement therapy. Testosterone low, was on Vivelle .1 patch. After about 6 weeks started to feel some better, still ups and down and blood pressure up and down. It is highest around 4-7 pm. Severe stomach bloating has been a real issue since 2005, like colic. I started taking some antacid, h2 blockers, to see if this would helped but made it worse. I headed back to my GP to see if he could help me with stomach problem thats when I presented him with my labs from the HRT. He wanted to do estrodiol levels prior to ovulating and post ovulating and also check aldo/renin again. Aldo was 18 with renin <.15 (not detectable).
Now I'm going to my GP's nephrologist to check all this out. My GP said I had all the signs of PA. Now we are on the witch hunt I suppose.
Would like to share this: I never drank sodas, just tea and water with meals but had incredible bloating. I began drinking ginger ale, with real ginger, and stomach bloating is like so much better, oh my gosh! If this helps anyone, please let me know. I also lost 5 lbs I'm sure from just fluid loss. My tongue feels dry but I'm not thirsty. This is weird and has been going on a long time. I use to have burning mouth like so so bad, hormone replacement has helped a great deal but it's not gone. Has anyone has burning mouth and weird feeling tongue that makes it hard to pronounce words?
I too have felt this dark cloud just covering over my head. Every now and then it lifts, my energy returns, and poof, it's gone again.
i also had low ferritin levels in 2008 which is the only way to accurately check for iron storage in your body. Taking iron did help with the burning mouth, but had to take lots and lots of iron for 8 months, probably still need it. I did feel better mentally taking the iron, however constipation is a real problem with iron. If anyone here needs iron, look up Proferrin on the internet. You can get Walgreen's drug store to order it for you. It comes from animal iron. It's the best source for iron there is.
The symptoms I have had has been puzzling to doctors at best. After reading most of your posts, I would highly recommend having hormone panels done. If I have a tumor I might sit this one out and opt for Inspra or something like that if called for and continue HRT. The continuing fatigue after adrenalectomy haunts me.
If anyone wants to contact me by email charlottecfs@bellsouth.net.
Wising everyone complete wellness!
I hope some of this info helps someone.
I have had some nausea too, although that may be an artifact of abdominal surgery. I will check with my Gastro Enterologist when I see him later this year. I have had GERD for a few years, since I got really into soda with splenda, which I no longer drink.
I don't drink alcohol anymore and have not for 11 years - so I have no experience with drinking after surgery and don't plan to test it since this was an issue for me. Rat studies have shown that after an adrenalectomy, rats with alcohol addiction had it resolve, so I have no trouble believing that the surgery destroys your tolerance. Again, I won't be doing further experimentation.
I don't drink caffeine either. If I have too much decaf, or caffienated by mistake, my blood sugar crashes - so it looks like although alcoholism goes away the associated hypoglycemia does not.
I still have mornings or days of fatigue, although I am sleeping better most nites. Sleeping more than 8.5 hours is not recommended for anyone, however. I am usually pretty good with 6 or 7.
I do the carbohydrate addicts diet. I find I'm not as comfortable eating a lot of food during my reward meal. Also, if I have a low carb breakfast, I don't need lunch and am hungry at dinner time. If I skip breakfast and have a late lunch, I don't need dinner. I have not yet gotten rid of bread, sour cream and cheese, so I am still retaining some weight. I lost 18 pounds after surger and gained 7 back. If I follow my food plan, I should lose about 50, however I like burritos and sandwiches.
Carole, thank you for your chronological accounts. I have mild HBP and never gave a thought about other symptoms (going at night, cramps, fatigue) until they tested my Potassium and the CAT scan and MRI indicated some "nodularity" on my adrenals. My Endo referred me to a friend at NIH so now I am doing down the path of all the testing you did to determine if surgery is an option. Such a difficult decision but having your blog (and the Yahoo Group it points to) has been extremely enlightening. Thank you!
Peace and Health,
Graham
I too had conn's and was "cured" with surgery in 2006...I am now ill with late stage Lyme disease and share your opinion that there are consequences in the disruption of body function that a diseased endocrine system causes.
I did not go back to normal, yes my BP and serum K did normalize but my entire endocrine system is a mess. Maybe it has something to do with being female,maybe it is the length of time I went undiagnosed, but the adrenals control so much in the body removing one may just have some effect on future health as you fear, unfortunately there are no studies following those of us who have had surgery for Conn's.
Took me 13 years of hypertension, 6 of those years it was not well controlled by meds and 3 of those years I was hypokalemic. I think I didn't progress as fast as others might because I used diet, exercise, omega 3s and minerals to try to control, also ate low salt for years and years. Yet instead of looking for cause it was easieer for physicans to label me non compliant. I write a blog too, mostly on Lyme but also on the state of our healthcare system and inablilty to prevent chronic illnesses.
Renee K,
Thank you for your comment. I am sorry to hear of the Lyme's on top of an insidious journey of Conn's. I have to agree with you about the endocrine system upset. I worry for the future as I make adjustments in the present. What is your blog?
I wish more people would come forward to discuss these rare conditions. Thanks for stopping by~
click on my name on my comment, you will be taken to my profile page, the blog is Living with Lyme
I have had the same problem getting Lyme diagnosed and treated as I had getting the conn's diagnosed and treated, there is just something wrong with our current medical system, cookbook medicine, one size fits all, if you don' respond to the treatment plan it is your fault.
Thank you Carole for your very informative blog. I had my surgery for left adrenalectomy on 25th July, so am still in quite a bit of pain (thank God for pain medications). The most important thing I noticed was the absence of "brain fog" after surgery. My friends noticed the difference without me saying anything! I am still very tired and sleep a fair bit of the day away.
Today is the first day I have been able to sit at computer.
I will enjoy the time to heal - its been 10 yrs since diagnosis. I did all the right things to prolonge having surgery, but in the end, having to go back on spiro and lots of K a day did it for me. keep up your very informative journal. I look forward to each entry. Cheers, Helen
Wonderful blog! I have the genetic form of Conn's-my grandmother, father and uncle all had it.
Grandma was diagnosed post-mortem(after dying of congestive heart failure-a complication of Conn's), dad and my uncle were diagnosed after suffering heart damage. I am the sole Conn's survivor because I was diagnosed at age 38. I had survivor guilt for a long time-then realized dad and the others would be happy I might be OK.
Any suggestions on exercise? I don't have a lot of tolerance. Also hot weather tips? The heat kills me and I get way tireder in summer.
Feeling jittery like you are going to pass out is a symptom of hypoglycemia. I have that too and avoid it by avoiding simple sugars and generally eating a high protein diet.
I also experienced depression, which is probably more a consequence of past alcoholism. I take 5HTP from the Amen Clinic (50 mg), 500 mg L-Phenylanine (I can't take DL due to lingering hypertension) and 500 mg L-Glutamine. These seem to get me to normal.
I had a unilateral adrenalectomy almost exactly 10 years ago. I was very fortunate to have a sister-in-law who suspected I had an adrenal tumor fairly quickly. I was 6 months pregnant when my blood pressure started to rise. My OB/GYN thought it was preeclampsia and since my blood pressure could not be controlled I was limited to bed rest and then delivered my healthy daughter 4 weeks early.
My high blood pressure did not resolve itself after childbirth. Two months later, after experiencing two TIAs (mini-strokes), my sister-in-law insisted I take care of myself and see a doctor. Being a nurse practitioner, she thought I had Pheocromocytoma and set my family doctor in the right direction. Thank God she is so brilliant!
I was sent to an endocrinologist, ran all the tests, had a CT scan, and was diagnosed with Conn's. The blood pressure medication I was on was extremely powerful and was not controlling my blood pressure. Staying on medication was not an option and we scheduled my surgery for December.
I had the surgery and it cured the hypertension immediately. I am thankful for the surgery, as I cannot imagine battling this disease for years.
Immediately after the surgery i was exhausted for months. There were so many different factors involved in my situation though, since I had a newborn, hormone changes, and a two year old at home. I also started experiencing night sweats about 20 days per month, my hormones were all over the place, and I felt like I was going through menopause at 33.
5 years ago I was diagnosed with hypothyroidism. I did not start medication until this spring and now my night sweats do not occur very often.
Over the years I have researched the correlation between unilateral adrenalectomies and hormone changes, night sweats, low testosterone, etc. Only tonight have I found a link between the adrenalectomy and hypothyroidism. My cortisol levels were checked 3 months after surgery and two years after surgery. Both times the levels were fine. It is just hard to shake the feeling that none of my hormone problems occurred until after my surgery.
Would I have my surgery again? Absolutely! My hormone issues are similar to menopausal symptoms. I would rather deal with these than to have to take medication for blood pressures for the rest of my life.
I thought I would share my story and I wish you all well in your decisions!
I had Conn's Disease. It took ages to diagnose. I was told I was nuts basically. Even when labs, 24 hour urine collections and adrenal vein sampling backed up my diagnosis, I had to wait 9 months for surgery. The hospital endocrinologist said I liked being ill?? My entire life was on hold trying to get one Dr to OK the surgery. I also had Lymes and since the surgery have had Breast Cancer, hypoglycemia and RA. I feel like I spend every able moment trying to become well. I also experience fatigue, hot flashes, intolerance to alcohol and sugars. I get so tired of begging a Dr to help me , that I just quit going. I moved and the current endo says I couldnt have had an adrenalectomy because they don't do it laproscopically. I have the medical records to prove it but still get treated like a nutter. I know I need to find a good Dr but I'm so tired.
txsgreen,
You have been through too much and I pray for your relief from pain and pain in the ass Drs! I hate to say, but overall, I am not impressed with the endocrinology field, I had 3 lousy experiences that leads me to believe they somehow didn't get much bed-side training in Med school. Most all adrenalectomies are done laproscopically, so your endo is an idiot. Go on the yahoo hyperaldosteronism site and get some help. Dr. Grimm is a Dr. with Conn's experience who knows his stuff. He can be gruff and sarcastic, but he has the patients best interest at heart. I wish you the very best of luck. Please let me know how you are doing~ Carole
Like all of you, I suffer with hyperaldosteronism, but unlike most of you, I haven't had an adrenalactomy. I have yearly "scans" and all are normanal, no nodules on my adrenal glands. I have a wonderful doctor, who happens to be a nephrologist, that was the first to diagnosis my condition. For years, after the birth of my twins, I was ignored by my cadiologist, PCP, and even spent days in the hosptial to be sent home with nothing. I was literally fading away mentally as well as physically losing so much weight my friends thought I was dying.
So, now that my condition is under control, I have been on Aldactone since 2006 and it works for me. I take it daily and based on what my doc says I probably will be taking it for the rest of my life. I had my one year check up yesterday and all levels were great, but my blood pressure was higher than normal, this concerns me.
I do want to know from you ladies out there, if any of you are or have experienced "hot flashes" or premenopausal symptoms as a result of this condidition. I'm 45 and just recently have begun experiencing this. My docotor suggests that my OB/GYN do horomone testing as my levels may be off and this my have some connection to the high blood pressure and the Aldactone my also be contributing as well.
So, back to the drawing board.....It was good while it lasted.
Flower Spy, I just have to say a HUGE THANK YOU from the bottom of my heart!!!
This became an issue for me after being admitted to the hospital for 2 times in as many months for severely low potassium (I was all the way down to 1.7 the first time). Each time I was in the hospital for a week. The first time they just replaced my potassium, told me to stop taking hydrochlorothiazide (because they assumed I was just urinating potassium out due to the diuretic. Once my potassium was above 3.5, I was sent on my way. No potassium supplements, no follow up care at home, nothing. Then two months later, my potassium was extremely low again, this time around 2.1. I mean this is "stop your heart" low! Finally one of my nurses (ironically the hospital staff remembered me because I was the youngest person on the heart floor) gave me info on Conn's Disease. The ER doctors made a mistake and scheduled my follow up appt with a doctor at a location that I hadn't been to in years and he had enough sense to refer me to a nephrologist who did all the aldosterone/renin testing and finally determined that I had Primary Aldosteronism and then referred me to see the endocrinologist. My friends a family constantly told me that I "needed to eat more bananas" (to raise my potassium. When I tell you this infuriated me to no end!!!!! I just got tired of explaining the disease to people and they still insist I need to eat bananas or use some herbal supplement to fix this. Ugh!!! Thank God my mom and sister understood what I was going thru. I remember crying in the hospital because the potassium dripped burned my veins so and I had to be there alone for a week. Last week I had my saline loading test, and am scheduled for the AVS on 8/13.
I'm actually hoping it is a unilateral tumor so that I can get this thing out of me and get better. I take 4 potassium pill a day, lisinopril and norvasc, and my BP is still extremely high and I suffer from serious water retention and swelling from the Norvasc. I was originally diagnosed with HBP at age 26 (I am now 32) and was always told, "You just have high blood pressure" and "Black people just have high blood pressure, it's hereditary". I was so relieved (crazy enough) to find out that I had Conn's and was not tripping when I knew it was odd that I would have high blood pressure and low potassium just show up out the blue.
I'm sorry about my long post, but it feels so good to see other people who are going thru the same thing and who can relate to me. I now know that I'm not just being lazy when I can't get out the bed to go to work or I just want to be in my room for days at a time. Thank you for bringing awareness to this disease. We all need to work together to make sure people are tested for this as they should be, because it is no longer just a rare condition. There are many people living with this and do not even know it.
Thank you again,
Victoria
OMG Victoria! I got the banana comments too! People are so stupid sometimes...
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