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.
Hi Everyone,
I have not been around a lot. I have been floating around the web - still trying to find ways to help myself; still recovering from surgery and trying to find some stability; and, trying to keep my head above water at work and home. I know you all understand. But, I feel I have missed a lot.
I had yet another endo appointment with a doc that does not believe I had/have/whatever acromegaly - because I never had an extremely high IGF-1 or GH serum. He chalked my confirmative OGTT up to lab error, which I don't think is possible with four blood draws. I mean - I remember drinking the orange drink. Nevertheless, it makes me doubt myself.
Is there anything else at all that could cause my chin to morph. I used to have a nicely shaped, center-dimpled chin - my whole life. Now, I have a somewhat pointy bone growing in the middle where the dimple used to be. I am not being facetious, I am really wondering - could this be something else??
Hugs,
K
I have not been around a lot. I have been floating around the web - still trying to find ways to help myself; still recovering from surgery and trying to find some stability; and, trying to keep my head above water at work and home. I know you all understand. But, I feel I have missed a lot.
I had yet another endo appointment with a doc that does not believe I had/have/whatever acromegaly - because I never had an extremely high IGF-1 or GH serum. He chalked my confirmative OGTT up to lab error, which I don't think is possible with four blood draws. I mean - I remember drinking the orange drink. Nevertheless, it makes me doubt myself.
Is there anything else at all that could cause my chin to morph. I used to have a nicely shaped, center-dimpled chin - my whole life. Now, I have a somewhat pointy bone growing in the middle where the dimple used to be. I am not being facetious, I am really wondering - could this be something else??
Hugs,
K
ps (Hopefully someone who knows alot more than me will be along soon!)
I had my pit. tumour removed 6 weeks ago. The biopsy result said is was a growth hormone producing adenoma.What did your biopsy result say? Maybe that will convince your Endo.
I too have not seen any changes in my face, neither have I lost any weight and sometimes wonder if the surgery was really necessary at all. My levels were high before, now are within the normal range.These are all just numbers. I still feel the same, I suppose we have to be patient to see any long term results or benefit.
Take care.
Hugs,
Jo
I meant to reply to Kvb 's post but typed your name instead!!
Regards
Jo
Kittie - I agree. But, this is my 11th endo. I just can't keep searching at this point. The endo that DXed me is in CA (I am in PA), so I touch base with him from time to time. But, he cannot follow me regularly. My IGF-1 was never very high before or after surgery. It was slightly elevated. It was the OGTT that gave me the DX. It was indisputable, according to my DXing endo. The chin change is actually bone change, so I don't anticipate it going back to normal. Yes, I did also have other hormone issues related to the adenoma - cyclical Cushing's, multiple hormone deficiencies. Do you know of any other conditions that can cause bone growth, especially in the face?
Jo - my pathology report said there was hyperplasia that stained for all the pit hormones. I still don't know what that means. The report was almost completely unhelpful. How is your recovery coming along? It is a rough road, I know.
Hugs.
Did you have a micro or a macro adenoma? What does your current Endo say about the Cushings status? My current Endo is testing for Cushings too but highly doubts it. I know that can cause ALOT of issues and make you feel really bad. I hope you will experience some relief soon. Did this endo say they would continue to check your IGF? I'll bet this tumor expressed a "LITTLE" bit of everything, that's why the IGF was not so high. Removing the tumor may have just resolved the issue, (which of course, is great!) but thats why they dont see any IGF1 now. Good luck and best wishes to you. Please add me as a friend if you would like to,. I can certainly relate to the years of unfigured out hormanal issues, that's for sure! ...Take care, ...Annie
Thanks for responding again.
Yes - it must be the acro. I hate how certain docs make me second-guess myself (as if having these diseases isn't enough of a challenge).
I saw and now consult Dr. Theodore Friedman. Google him. He has a very good website and knows this stuff! Plus, he is a great guy. Just another reason why I desperately wish I lived in CA.
I had three small tumor pieces (micros) removed in Jan. this year. I do not think I have active Cushing's now, but am still testing my cortisol in saliva and urine. My latest IGF-1 was 279 - doc was not thrilled, ordered an OGTT.
Feel free to ask me anything you like about my experiences. Good luck with the testing. I hope they figure you out!
Best,
K