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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Endocrine System
/ Acromegaly Support Group

IGF-1 level reduction and weight loss

Jen564
Jen564
Hi everyone,it has been a while since I have visited my friends on Daily Strength. I have a question for you from my specialist!!

I went to my 6 monthly endrocronologist appointment yesterday expecting the news that my IGF-1 levels had increased yet again (high end of normal range). I have not had the tumour removed and am being treated with Somatuline Autogel injection every 4 weeks. My doctor was unsure why my levels would be going up as the tumour has not changed. Surgery was my next option as I am on the max dosage.

However, I was greeted with great news...my level had gone down from 45 to 32 nmol/l. He was also surprised at how different I looked as last year I was finally successful in losing 10 kgs. I have mentioned my fantastic friends that I have met through Acromegaly Community and Daily Strength on a couple of occasions so he asked me to ask you if anyone else had experienced a decrease in IGF-1 levels and lost weight. He is trying to ascertain if the weight loss contributed to the decrease in levels as I haven't done anything else differently.

He only has a couple of acro patients and, as we all know, our experiences are different

Best wishes for a happy and healthy 2011 xx
deleted_user
deleted_user
right after my surgery I lost 20 pounds about 9 kilos...my IGF-1 went form 850 to 350..
over the last 2 years I have regained that wieght and 30 more...

my Igff-1 is on the high and of normal or even over normal on occsaion but I am not on any meds yet...

I know I am gaining wieght becasue I eat to much..my endo says menapase may also play a role..anyway I am working on it...
J0KEYJ
J0KEYJ
Hi lovely to hear from you..for myself Im drug option only and on largest dose of somatuline autogel..When first on drug was I sick and oh the D word not nice the road runner to the loo was not good ..But I continued because straight away I could feel a new lease of life..Hold hand up the hyper moments took some getting use to..LOL lets say three hours on a high was funny and the trouble it nearly got me into..but for myself to not have that terrible burning..Going through doses I lost weight and comments of I looked younger..now levels sneaky playing games,,They lowered about second size dose of somatuline..Then they rose..Did see Encro and he said oh levels are higher..I asked for an Mri and what the tumour had shrunk ..to be honest Im not a fan of levels.I like to go by whole picture..I did get comment other day please dont lose anymore weight..But people dont understand Im now at the weight for my height..I know my pit is functioning better ..because my Blood pressure is better. my terrible symptoms have gone.Im off to see Encro today had levels tested ...MRI...outside Im looking good LOL now lets see what inside is doing...
J0KEYJ
J0KEYJ
update...went yesterday to see encro..got weighed and have lost about a stone since last time..thing different is had alot of stress and not eating alot of sugar which is surprising..stress and sugar seem to go together with me..last visit..tumour had shrunk but levels high..this time large weight loss ..tumour same although knowing my encro hes looking at previous MRI LOL his face if he reads this..hes pleased with levels so low very good..I still think one sneaky complex conditon ..but feeling well so happy at the moment...Its intresting..But again thats why intresting lady written on file..I can celebrate I have the word normal stamped on there..LMAO
Jen564
Jen564
Great news Jokey. There are not too many of us who are treated by drug option only
deleted_user
deleted_user
Jen...it is interesting that he wondered "He is trying to ascertain if the weight loss contributed to the decrease in levels as I haven't done anything else differently." I always understood that the decrease in IGF-1 facilitated the weight loss...not the other way around. Regardless...congratulations on the fantastic news!
Jen564
Jen564
I can understand it being the other way around, however my levels have been slowly increasing over the last 2 years so surgery was the next option. I have worked really hard to lose the weight with going to WW and the gym. It is a big coincidence that all of a suddenthe levels go down at the same time.
deleted_user
deleted_user
I lost weight right after my surgery but I gained it back after I was put on Sandostatin plus alot more, I gained almost 50 pounds over the tree years I was taking Sandostatin, I have been off of it for about nine months now and have slowly lost about 15 pounds, I have along way to go to shed the extra 35 pounds. The problem now is Indo wants me to go back on the meds so I may never get this extra weight off.
You are lucky to have lost on the meds, as I understand it is usually the other way around.
J0KEYJ
J0KEYJ
Before I went on drug..I did alot of exercise and ate healthly..had little anklebiters to run around after LOL and worked..I look back now and wonder how I did it because the more I did the worse I was getting..I put on such alot of weight..I was an 18 in size..As I usualy say I looked liked an extra out of MJ thriller..grey face blotched mess..When someone finally believed me that something was wrong and put on somatuline the weight fell off ..I got the colour back to my skin and my eyes did not look dull..I have had odd symptoms of hyperness and althoug nothing like the three hours when first on drug..my weight piled on a little when I got a temping job and they said I needed feeding up bringing in cakes and sweets which called my name..LOL.mctrjt stop rustling them wrappers ..IM WATCHING YOU
deleted_user
deleted_user
HI
Great to hear from you, Interesting when I tried to lose weight I ended up in pain and no luck at losing weight - I was putting on weight before going on meds and still am unfortunatly - I am on cabergoline
Great news though
deleted_user
deleted_user
I gained lots of weight after I started with Somavert, I use acupuncture to help it a little bit. It works too:-)
J0KEYJ
J0KEYJ
Ole M ...interesting acupuncture..One of the good things it did help me loose a little weight..but oh did I have headaches and my BP raised,,,,
deleted_user
deleted_user
Hi Jen,

When I started on the Somatuline I was gyming every single day (wasn't that the most painful thing for our aching bodies) I immediately piled on 20kg in the first 2 weeks. I was crushed. I gave up the weightloss fight then. But within a few more weeks, I lost some of that because the Smatuline made me so ill.
After surgery I dropped 10kg almost instantly, my doctor at the hospital was fascinated and although the anethatist assistant told me it had nothing to do with the surgery, it was just a mistake with the scales, the doctor was convinced it was due to the surgery and the change in hormones. Although he had never seen it happen before, he is still convinced that it must have a direct relation to the removal of the tumor.
Since surgery, about 4 months ago, I have very slowly and steadily continued to lose weight, without even really trying. This would be the first time in my life that I have been able to lose weight without living on water.
I am convinced that the tumor or the Acro has a direct impact on our weight gain.
KathrynGA
KathrynGA
Before being diagnosed I had tried working out and even hired a trainer for 6 months but didn't lose a pound! I was great at the weight lifting though. As I said in another post I was looking so forward to losing weight after surgery as my docs promised but have gained 20 lbs and still climbing. My last gh levels were high normal and won't get tested again for another month. I too have hard time exercising with the joint pains but figure the extra weight is not helping with the pain. I also have a lot of muscle fatigue. I do plan to at least try walking and low impact exercises. I've got to do something. I'm also on vegan diet 80% of the time which endo said would help with diabetes and weight loss. I'd hate to see how much weight I would have gained without this diet.