Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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Sweating

Hi!

I am wondering if anyone else has experienced what I am.....

After four surgeies,radation therapy and medications, my Igf-1 levels are finally back within normal....But I keep sweating TONS. The horrible sweating is one of the most irritating effects of Acromegaly I think...and therefore disappointed that it does not get any better.

Anyone else out there?

Replies

J0KEYJ
J0KEYJ

This symptom for myself was horrendous..I would burn up inside..I was tested for the menopause and I knew it wasnt that..If its like that then I cant face it again...It got so bad but mine was very inward..Id ask someone touch me Im on fire and they would say you feel cool to touch...So no its not a nice symptom..Ok this was before drug treatment which cleared it up but that could change for me who knows what games acro ass will play later on..Have you had full pit profile done had everything checked see if it something thats upsetting the balance.
molehands
molehands

Hi Ole, although I'm not a true acromegaly patient I do suffer badly with sweating attacks and drenching night sweats.

Have seen two dermatologists over the years one gave me pills that no longer work and the other reckoned sympathectomy (severing or clamping off a nerve in the sympathetic nervous system) would likely be the only thing to help. This has a flip side for many patients, where they compensate and sweat badly somewhere else, however some patients swear by it.

Treatment of hyperhydrosis very much depends on the site of the sweating, if it is localised , eg on the palms or feet then iontophoresis (best google it ) can help. Botox too has been used in underarm and palmar sweating. All over or generalised sweating is much harder too control.

This has just reminded me about a GP referral I asked for last summer to a dermatologist specialising in botox therapy so thanks for that i'm going to see what happened there! I have a bad time with my scalp, face and upper trunk. Not very ladylike and a bloody nightmare in hot weather. My eyes either water cos the sun and bright light or cos there drips of sweat running into them . Wasn't sure if he'd consider botox for the forehead but it could have an added bonus of smoothing out my furrows :)

Hope some of this has informed you a bit more, Have you discussed this with your doctor and tried anything yet?
deleted_user
deleted_user

Yes, excessive sweating is one of the symptoms of acromegaly. It's also the most annoying, tho not painful. Because of the sweating I could no longer be a regular in the workplace - I could drench a washcloth to the point of "wring-out" saturation in minutes! And putting on make-up was (is) often pointless.
I'd like to say that since my pt surgery last year, it has stopped, but since this last May, it seems to have returned. I've had only a few (probably about 5) drenching episodes since. I'd hoped they'd be gone entirely, but they are not. The last one was yesterday while I was washing the living room window (went thru lots of absorbent Bounty paper towels). So, my Dr has asked me to return, "almost time for more follow up testing anyway", she says. That means the annual MRI & blood tests. I hope it is not the acromegaly, as we are hoping the surgical cure would last much longer than this.
I seem to be most suspectable to the drenching when axiety occurs or due to increasingly warm/ hot temperatures. These are not hot flashes. I know what those feel like and they are different. However, worth mentioning: Prepro, a drug for menopause, has helped with the acromegaly sweating, but may not not an option for guys(?). I don't know what to tell you to do about it. I just know how awful and interfering all the sweating can be, I've been living with it now for about 10 years.
I'd like to know: do your sweating episodes correspond to any type of anxiety /anxiousness? And, to increasing hot temperatures (indoors or out), as mine does?
I am seeing my Dr again, and after tests will be glad to keep you posted. You may contact me thru here or email.
PS Since surgery, I have been able to wear make-up more often!
DS
JohnD1
JohnD1

Well I no longer suffer from excess sweating since my operation, however I did notice that Buscopan (hyoscine butylbromide), which I had prescribed for gastrointestinal spasms, is also prescribed for excess sweating. (I had this drug to help deal with the side effects of lanreotide which I did not tolerate well). I did indeed notice myself sweating less while on it -- but of course this means that your body can overheat. And of course every drug has its own side effects.

John
molehands
molehands

Your right John these are the type of drugs given, I had propantheline bromide, usually an anti-spasmodic,but it dries out your eyes and mouth too, worked somewhat in the beginning but now not particularly helpful. I do occasionally take for example if I'm going shopping to dry me out a little. Not that it does much anymore. Shops seem to be a trigger for me, why are they always so damn hot?!

Das, my is triggered by hot weather and the slightest physical activity. housework usually sees me dripping :( Social situations can be horrid but my issues are not triggered by anxiety although embarrassment over it definately makes it worse,so I guess a contributing factor. I can be in a room where folk moaning about the cold and I'm beading up on my brow.
Really bugs me, make up too is a pain and pointless. Nothing quite like a shiny sweaty greasy rosy face to make you feel feminine is there!
deleted_user
deleted_user

Hi,

I have to say, my seating is nothing compare to yours, BUT not nice and makes me feel unsafe as last year I fainted twice as a follow up to the heat and sweat. At list we have something to blame and move on....
J0KEYJ
J0KEYJ

Hyperhydrosis...That conditon interests me..They dont seem to know why it happens....It seems to affect people younger also..Im trying to think back for myself did I sweat more when younger...I think in a way alot of conditons are connected somewhere in the Jigsaw puzzle of the human body probably more than we may ever know...
Harmony22
Harmony22

My is triggered by hot weather, too. This is the reason why I often wear black clothes. And my hands are often sweaty. I feel very embarrassed when someone want to shake hands with me. So I try to avoid shaking hands as much as it get. This use to be not my problem. I miss those times.
J0KEYJ
J0KEYJ

I would put my palm down on a counter and it would leave a sweat mark...I wouldnt shake peoples hands either being so clammy.I would pick clothers worrying I would go for a blue or white and never would the material be a cotton in a colour that would show sweat up and red was one colour I would avoid...Deodrant oh boy did I get through that..I wouldnt let people hug me..I did really feel this conditon certainly liked the idea of turning me into a recluse and it wasnt far off succeeding..When I was having my first tests done the GH one beards of sweat running down my hand and the person looked at me I think then they knew I had the conditon..
deleted_user
deleted_user

I had surgery in Dec. 2006. The sweating ceased for a while, while the drugs were working. My IGF-1 levels are creeping upward and while the medication is being raised as well, I still sweat. I have noticed however, that it is related to sugar or carbohydrate intake. I can eat mostly vegetables and meat - small servings of carbs and I do much better. Once I start eating a lot of carbs during the day, the sweats increase. You might give that a shot to see if it will help.
deleted_user
deleted_user

I haven't even been in for my MRI yet, the only thing I know is my blood tests are positive and I have all the symptoms of Acromegaly. And sweating is definitely one of them. It sucks. I'm looking forward to the surgery.
Can anyone tell me how long the recovery is?
guinneapig
guinneapig

hi reading your note i to suffer from acromegaly just diagnosed at xmas going in for surgery on the 28th march i suffer from sever sweating to the degree i have to change my bedding. sweating through day to which makes my hair soaking and my clothes so i do sympothise with you ,i hope things settle down for you soon regards
deleted_user
deleted_user

After surgery and meds (somatuline, cabergoline), my excess sweating subsided. But suddenly it started up again 4 months ago, along with joint pain. Sometimes I wake up in a pool of sweat. I really thought IGF was going up, but it's high norm, slightly high, which is where it had been. Started testosterone last year, and I'm wondering if it's related to that? Anyway, hope this gets better for you.