bilateral adrenalectomy- has any one had this?

Hi everyone,

In 2004 I was diagnosed with Cushings Syndrom and had to have a bilateral adrenalectomy.

So now I'm on hormone supplements and I've been desperatly looking for someone who I can talk to about physical and psycological issues.

Eversince I had my adrenals out my situation seems to have gotten worse. Has anyone out there felt like that after having a bilateral adrenalectomy?

I'm tired all the time, I sleep a alot -sometimes up to 15 hours- and still not feel rested. I'm nauseas (spelling?) most of the time, I get dizzy, I have a lot of diarrhea.

These are all signs that indicate stress. The weird thing is though that I get these symptoms even when there is nothing stressing my body. And I've become quite a Stressexpert over the last 5 years to be able to relate what stress means for someone that has had their adreanals out.

I've just been getting more and more depressed because none of my doctors know what is causing this and the adjustment of my supplements aren't helping.

I don't know anyone here in Switzerland that has the same problems as I do. So I'm hoping I can find someone out there who can kinda relate to this stuff that I'm going through.

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It does take a while to adjust to not having adrenal glands and to find the correct dosages of hormorne replacement. During the first year after my adrenalectomy, I went into adrenal insufficiency 3-4 times. In the next 2 years (years 2 and 3) I went into adrenal insufficiency about 3 times and probably once during years 4 and 5 after my surgery. My doctor finally found a regimen that stabilized me. He also started me on DHEA and I have not gone into adrenal insufficiency since I started taking it. You should ask your doctor about DHEA.

The one piece of advice that I hold on to is that as long as anyone who has had a bilateral adrenalectomy takes their medication, they are just like any "normal" person unless they experience some type of trauma at which time they will need a stress dose of hydrocortisone. What this means to me is that every time I feel tired or depressed it doesn't mean it's because I don't have adrenal glands.

I know that it doesn't feel good to not feel good but be patient with yourself and realize that life is a little different now but the things that you have to do to maintain your health are a small price to pay compared to the alternative.

Personally I feel so much better not having those hormones raging against my body. I would rather feel a little tired and mellow than wired and bouncing off the walls like I used to before my surgery.

I wish you all the best. Make a conscious effort to feel good. Take walks, hot baths, get a massage, listen to music. Do the things that you like to do and don't create unecessary stress for yourself by worrying about not having adrenal glands. Keep a positive attitude and please write again. I love to talk about this. We are special.

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i had BLA in 2005; after pituitary surgery in 2000; i kind of disagree that as long as we take our meds we are "normal" -- we have no way to regulate BP; sweat; fluid retention and the list goes on -- stress is a BIG problem whether it be emotional or physical. We do not have the fight or flight and this causes issues in the body with the sympathetic nervous system. My first crisis was a month after my BLA -- I fell and broke my ankle both sides, snap, snap like a twig -- i set it back in place b/c the pain was excruciating, by the time my son had ran in the house to call 911 and get my meds, my lips were already blue (going into shock) -- i've had several crisises since be it from pneumonia, flu, whatever.

You have to LISTEN intently to YOUR body and what it is telling you. Some days I can barely make it out of the chair and others I have tons of energy, you just have to take it as it comes and go with it.

Do they have such a thing as a Medic Alert bracelet in Switzerland? if so, you need to get one, also keep a list of your meds and your diagnosis with you at all times, this helps the medical folks immensely!! Here where I am, once you are on the ambulance, they cannot give you your stress dose of cortisol w/o permission of doctor and most docs and medics have no idea what "addison's disease" is.

Good luck, keep in touch let us know how you are doing!

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Hi motor girl 85,
There is not a lot of information out there! I too had an adrenalectomy after being dignosed with cushings. I thought I'd be fine as soon as I left hospital because I was feeling so well - it's great what high doses of cortisone can do!!!. Doc's never said I'd have to go on medication - I'm still on cortisone because my other adrenal gland hasn't kicked in yet. My op was only 3 months ago - I'm getting really down now because everyone seems to be waiting & waiting for the great awakening. When I queried my profesor he said that it will come back & it could possibly take 12 months. I'm keeping my fingers crossed. I have a great deal of pain in my legs, feel weak alot of the time & not sleeping very well, but I just keep happy in the thought that it will all happen soon.
Have you heard from anyone who's existing adrenal gland has kicked in? I just want to know if you feel instantly well & can stop taking the medication straight away.
I'm so lucky I have a family who loves me - sometimes I wonder for how long if I don't get better. Hang in there I'm sure it will all be good.
Mizzy

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So many of us feel so yucky all the time! I haven't had my adrenal glands for over 16 years now. Yes I sleep A LOT! And I'm still tired. Yes I have a lot of diahrea. (I view it as weight loss!) for no real reason. And nausea? Every night! Is it my birth contol pill? No. The time I take my steroids each day? No? Is it the amount I exercise? No. Maybe it's global warming. Your guess is as good as mine. Anyway, this is just how we are now. Besides everybody has their problems. It could always be worse. It will probably get worse. But enjoy the times that you feel okay. Oh...and invest in some really soft blankets and some nice pajamas.

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I'm an EMT, Medication Technician, and have been a Patient Care Technician for 32 years. I, also, deal with my own immuno-suppressive disorder, which is genetic. I prefer to use as few pharmaceutical interventions as possible for myself. I have received a great deal of relief from use of thymus and pancreatic glandulars, which are natural supplements that replace the hormones, usual created by a person's functioning endocrine system. I would recommend that you look into the possibility of adding adrenal glandular, from your health food store, to your therapy regimen.
Most Importantly! ----- consult your physician, before making ANY changes to your current schedule of therapy. Herbals and supplements ARE DRUGS, have side effects, and can cause problems when combined with other prescriptions, or even with foods, such as grapefruit! Good luck and best wishes.

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I should, also, mention that Cushing's Syndrome is commonly noted by increased blood pressure, lethargy, and mood changes. It is caused or exacerbated by over abundance of the hormone, cortisol. Cortisol is naturally produced by the adrenal glands, which would provide the basis for your adrenalectomy.

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The body naturally produces cortisol, in response to stressors in our daily life. Sleep is the body's natural compensation mechanism to cope with stress. Warm tea and surrounding your environment with fragrances such as ylang-ylang, sandlewood, and especially lavendar may help your mind sustain a less stressful environment.

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hi. I'm only 3 months out post surgery and I have the same issues that you are having. When I read your post it was like I was talking to myself. I have to same issues with tiredness, dizzyness, stomach/bowel problems, hot flashes, and muscle pain and weakness in my legs mostly. Other than my blood pressure problems majorly improving I'm still having all the same and some new symptoms as what I did before my surgery. I totally get your frustration. When I emailed my Endo about all my issues he told me that he was out of town and to contact my Primary Care Doctor to get checked out. So I still have no answers either. If you have anyone has any sugestions please let me know. Best of luck to you

kristie

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Hi guys, unfortunally I don't have a lot of time but I think I might have some good news.... I hope I'll be able to get around to posting my response.
Thanks for reading and paricipating in this discussion.
I'm reliefed that I'm not the only one with these issues.
Maybe we could try to stay in touch and exchange some more of our expierience.

bye for now...

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I have also received a bilateraladrenalectomy. I underwent surgery in December of 1997, as well as my younger sister. My father, myself , and my sister were all diagnosed with primary hyperaldosteronism bilateral adrenal hyperplasia. My father and sister have already preceeded me from complications from the rare condition. So I know what you are experiencing. I was diagnosed at age 7, and I have spent a lot of time in the hospital and under a doctors care. What makes our condition abnormal is that it is not caused by tumors. I will shortly undergo a genetic test to determine what caused the condition.
Your symptoms are very familiar to me. I often have dizzy spells, weight gain/loss, nauseausnes, colds that last forever, and fatigue. These are all symptoms since the surgery. Before the surgery, I had high blood pressure, low potassium, abnormal heartbeats, and extreme thirst. I am currently prescribed cortef and florinef.
I recently lost my father on last Thursday. I am still grieving. I joined this site as support. Since both my sister and father are no longer with me, I feel as if no one understands what I go through medically. It is comforting to see that other people are familiar with the burden of not having both adrenal glands.

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Hi everybody,
It will be one yr. April 10th since my bi-lateal adrenalectomy. The Drs. at the Mayo Clinic really thought I would be "normal" like a healthy person after a few months. None of my Drs know much about this condition. I was a deputy/detention officer and within a year I'm on disability. At least I received SS Disability and early retirement on the first try. I applied in July and got my first check just before Christmas. I had so many "irons in the fire" as superwoman that I'm still closing down a businesses and overdoing it.
I had AS arthritis before, but immediately after the BA, I really went downhill with pain and deformity of joints. Even on the big initial tapering doses of cortisone. I'm on cortisone, fludrocortisone and a bunch of others for arthritis. None of the Drs agree on how to handle my meds so they told me to experiment within certain ranges. I've recently began wheezing and having allergy symptoms that I haven't had in 10 yrs. How much cortisone so you all take? I weigh 175 lbs and take 25-30 mg daily. I have all the symptoms, wired to sleepy, aching, etc. Thanks for input for sharing.

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Well I'm finally back!

The last couple of months have been sooooo crazy.
I'm currently staying at the NIH in Washington D.C. Bethesda and participating in some clinical trials and research.

Beginning Sept. 2009 I fell into a depression. Which can be pretty common for me once or twice a year. Given my medical history and the things I have gone through. But this one was different. Different because I couldn't get myself out of it. I ended up not even being able to leave my house eventhough I really and badly wanted to.

I had to put a hold on my apprenticeship all the money that was coming in stoped and right now I'm living off of my savings while being treated. There was quite a build up of very stressfull events that lead to my depression and almost to a burn out.
I ended up going to an accute psychiatric dayclinic and had to face up to certain facts.....

ooooh dear.... time to rush to a next appointment...

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have you ever tried prednisone. i take 3mg every morning and have been for 5 years. I think I am going to switch back to hydrocortisone. I have always been tired but it seems like it gets worse every year. Also curious, has anyone's physician ever validated the fategue. I have had several endocrinologists and they all say I should not be feeling tired. They blame it on my children and my work but I do not see any of my friends who all have children and jobs going to bed at 8pm.

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Nope I've never taken prednisone.... probably never will.
As to your fategue: It is absolutely normal that you are more tired than other people. Depending on how much you ask of your self each day it can take a lot out of you.
So be carefull not to push yourself to much.

I've been taking something called DHEA. You can get it over the counter and it was recommended to me by my endocrinologist. It's certainly taken away some of the edgynesh I used to have because I was tired most of the time.

The other thing: Stop comparing yourself to others. It will do your head in. Other normal functioning people don't have to think twice about adjusting their output of stresshormones in the body as you do. Their body takes care of that all by itself.

I've really had to stop and listen to what my body is telling me, what signs it's giving me in order to tell me that I'm overdoing it. If your body is telling you to go to bed at 8pm then do it. That usually means you need to recooperate from stress. You shouldn't have to fight yourself.

I'll be back soon....

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Hi!
My son has Pan Hypopituitaryism & he gets stomach problems when his thyroid is off. Are you taking thyroid meds? His stomach also bothers him if he takes too much cortef, it burns he does not have diareah. Maybe you are not getting enough cortisol and that's why you are so tired? Adam suffers from depression as well. He is also legally blind. We usually have to give him anti anxiety meds if we have people over or we go somewhere. he'd rather be alone, but he is 14. It's depressing to live a life relying on meds, I get depressed having a son that has to live this way. You sound like a very grounded, unique, and very strong person. Keep that in your mind you are tough!
Stay strong,
Shellie

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Hi ! i have had the same surgery in 1999. I had Cushings for many years without anyone figuring it out. In 1999 it was dianosed and i had both my Adrenal glands removed and have been on Hydrocortizone and Fluidicortizone for all these years, and if i work in the sun or in the cold i have to adjust my meds and nobody knows much about this condition, so we are pretty much on our own and you just have to experment with the meds, but don't take to much either as can also have a bad reaction. I've found if i work in the heat and sweat, i need more of the Fluidicortizone acetate,(also known as Florinef), and if i get any stress even such as dropping a pen or anything, i need to take a little more of the Hydrocortizone and just don't go over 60 mg in a day and don't go over 30 mg if possible or if you do for an extended period of time it will give you the cushings symptoms again, and you won't feel a bit good. It is kind of a russian roulete, and you just have to keep going and if you get everything in balance you feel pretty good. Also you need to eat fairly regular, and eat small meals, no seconds, but eat a snack as often as you need, but good wholesome food, not junk. You need to keep your electrilites in balance, Potasium and salts. Energy level is never real good no matter what, so not to worry, just do a little, then rest, then if you feel up to it do some more then rest, and if you do that and learn to live with it, you can have a good life, i do, and am happy. Hopefully your mate will read and learn all he or she can to be supportive and not give you a lot of stress, which just makes things worse. Educate, Educate. Depression is just a part of it all, so just don't let it get a hold on you, think of good things and places and do things to get you out of it. play up beat music and read up beat things, go outside and watch the birds and have a dog or cat, all these things help me, good luck and God bless.

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Hi ! you may need to ask your doctor to prescribe Fluidicortzone acetate as an additional med for you as it and Hydrocortizone will usually help you more than just the Cortizone. a lot of doctors have the idea that if you are over 16 you don't need The Fluidicortizone, (also known as Florinef), but i was 59 when my adrenals were removed and i am now 70 and still need it. My doctor wouldn't give me the flourinef until after i had had four adrenal crsises, then i he tried it and i was much better. You can still get into crisis, but not so easy, and you can usually get out on your own, by taking more of each and resting. Take a little of each at a time, then wait an hour, then if not feeling any better try a little more, or if you have the shots give yourself 100 Mg and it should do the trick. I also posted another write up that is more detailed in some things that you might want to read, Good luck and God Bless.

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Hi ! someone has probably already answered your questions in this amount of time, but just in case they haven't. I also am without Adrenals and take Hydrocortisone and flourinef. I had to be about four years from surgery before i could really start to get a handle on how much to take, the first year i was like you and took about 30 mg's of Cortisone and i mg of flourinef. Now i'm 11 years out and i take 15 mg's of cortisone and 1/4 mg of Flourinef, except when i need more for what ever it might be that causes me to need more, and that might be just droping something. and the surprise of it makes my system call for everything i have in me at the time and i need more right then. Don't know if this is any help, but hope it is, and just drop me a line anytime and we can talk. That is for anyone !

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