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.
I have a 15x12x10 pituitary adenoma. I was scheduled for surgery last year and my endo recommended against the surgery. Growth hormone is normal at this time. I have the following: tunnel syndrome, tenosynyvitis (spell) both wrists, arthritis hands, wrists, whole spine and kyphosis in the middle. Had tendon surgery, 12 colon scopes, multiple polyps removed, this April 11 plus my colon is enlarged, also had polyps in my vocal cords and nose ( removed). Jaw total change with large spaces between teeth. I was dxed with Lupus.My hands and feet have become much larger and wider. What other diseases can cause this besides acro. Any info would appreciated.
Thank you very much !
Ulrike
Thank you very much !
Ulrike
May I ask if at some point your GH was measured as abnormal? (You say it is normal now). Also, was a level taken for IGF-1? Is the tumor being treated at all?
Thank you for your reply. The tumor is checked with an MRI every 12 months, eye tests every 3 to 4 months.
IGF-1 is 130 plus now, 60 plus 3 months ago, GH is 5. I am 66 now. 10 years ago, age 56 IGF-1 was 272. GH was not tested. 272 was normal, I was told, at age 56. The changes in my body started when I was in my mid 40s, jaw changes and hand and foot enlargement, fist colon polyps removed age 44. Doctors I saw at that time never did any tests. I had no clue that there was anything like acro. I was basically told "these things happen when you get older. Also, I had a breast discharge for about 10 years, stopped about 10 years ago.
Thank you!
Ulrike
I'm so sorry you're having these difficulties. I can relate as I have many symptoms myself, not all of these, and to varying degrees. But I do sympathize. We just have to keep going. Prayer helps, if you're open to that.
To your question, Trys has posted various things on diseases that have similar symptoms to Acro, so you may want to do some searches for his posts. Briefly, he mentioned:
PCOS (Polycystic Ovarian Syndrome) but that doesn't sound likely to me? Also, Trys mentioned Insulin resistance can appear like acromegaly in symptoms. (Pseudoacromegaly due to insulin resistance). Essentially, the great excess of insulin itself binds (quite poorly) to the IGF-1 receptors, and so stimulates growth.
My questions: why is your Endo not recommending surgery, given your symptoms? I understand your GH is normal, but it seems to me that your symptoms may be due to having the tumor, regardless of what the actual blood test results say? This is just my opinion. I've seen many times in other conditions, the blood tests lie and can't be trusted. Perhaps it would be good for you to get the tumor out and maybe your symptoms would go away?? Just an idea.
Also, perhaps it would help you to seek several more opinions on your case from some of the top Endos specializing in Acro?? You could consult remotely by phone.
Wishing you the best. Peace, Sunny
My endo is saying the surgery is too risky. She says I will be in worse shape and nothing will work right anymore. I am fine with that, I am not eager to have the surgery.
For me it is too late. The damage was done to my body 10 and 15 years ago, this con't be reversed. I did see many doctors from 97 to 01 including teaching hospital without any help.
Thank you for your response.
Hugs
Ulrike
She posted the diet info so you can search for that. I think several other people on the group, as well as myself are trying diet also. I have found it helpful and it definitely makes a difference.
My approach is more radical than Berthe's - I have transitioned to an all raw food diet. I have read extensively about it and it has helped people with many different serious diseases. If you want info on raw food diet, you can google it, or read some books by Victoria Boutenko.
Wishing you all the best. Peace, S
Thank you for your reply. You are so kind aztreasure and mysterysolved. I will check out the raw diet.
Ulrike
I was diagnosed with Lupus 11 years ago. Just wondering, which of your symptoms did they think was lupus related, do you have a positive DNA and ANA. I forgot, do you have a pituitary tumor and high growth hormone?
Christine