Prof replied
Got an email back from the professorI contacted in Manchester. Hard to comment on without seeing me, unlikely acromegaly given initial test results, nevertheless happy to see me for a 2nd opinion. So now awaiting most recent igf-1 and then will take it from there. Think I want to see him regardless of test. Someone must have answers.
Replies
Wow that\'s good but bad. I mean good that he will see you, but pants that he thinks unlikely given initial test results. Hmph... what the hell is wrong with us weirdos? I am beginning to think we have obviously developed some new disease that they have not discovered LOL.
I would definitely ask to see him. You never know Moley, he might think that something else pit or hormona related is going on with you. I know Paul on Pituitary Chat forum has had the growth issues, but has not been diagnosed with acro. He has prolactinoma and addisons.
x
Yes, I agree, try www.pituitaryChat.com and natter with Paul. Another interesting one is that GH adenomas can rarely change to other secretory types (eg PRL or TSH) - for example during gestation a GH adenoma could change to a predominately PRL adenoma.
As IGF-1 and the OGTT are the tests for acromegaly, on the face of it then from that you don\'t have acromegaly. You could however have pseudoacromegaly, or of course something that\'s indirectly giving you very similar set of symptoms.
The professor will however not leave a stone unturned. He is a highly intelligent and personable gentleman who will do his utmost to determine your condition from an endocrinological point of view.
It sounds like you will have a great deal of questions for him, and you will find him very amenable to giving you answers.
So you\'ll be in good hands!
Trys
thanks Trys, think I\'d rather he ran the tests again for me .ny confidence in the lab used before is rocked and I am diabetic and was on the pill both which can have an impact on results. I do hop he can help. As i\'ve added you as a friend you can check out my photos if you like. Not pretty but maybe indicative lol
Thanks!!
I\'ve made a posting on the main forum about pseudoacromegaly by the way, it might be something that could fit together:
http://www.dailystrength.org/c/Acromegaly/forum/9015247-normal-igf1-and-gh
We live in North Manchester by the way - there is a Pituitary Support group in Manchester that meets up.
Trys
Have replied to your post , thanks for the help. There is also a pit support group at the Walton which had thought about. Not sure how long will be in this area now though so not pursued anything plus I\'ve not passed my acro initiation yet:)
Yes - you\'re probably best to not go until you have a clear diagnosis that it is a pituitary condition or not! Let\'s hope you don\'t pass the initiation test (I\'ve got a feeling that you\'ll be lucky enough not to).
I\'m sure you\'re very relieved now to receive a diagnosis, although of course it would be better if none of us had anything amiss that needs diagnosing!