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Brain/Pituitary Tumors Community
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Avatar universal

Early Diagnosis of Acromegaly

For the past year I've noticed my nose was growing and my nose area started twitching and I recently noticed that my chin is sticking out more (getting longer, if that makes any sense) I saw a endo a week ago. My blood test, my hormones all came out fine. (My HDL levels were a bit low though, but she didn't think it was a big deal) And they suspected a microadenoma (2,5 mm) from my dynamic pituitary MRI. My endo said that its not secreting any hormones or pressuring optic nerves so I have nothing to be worried about. Because I wasn't satisfied with the answer I went to see an acromegaly specialist she wanted to check my GH/IGF-1 levels just to make sure. Both came out a little high. My IGF-1 was 444ng/mL, and my GH was 11,80 ng/ML. After that I went ahead and got the OGTT test done. My growth hormone at min. 0' was still a little over the limit (the limit is 0-8 over here in Turkey and mine was 8,41ng/mL and before that it was 11,41ng/mL) and my blood sugar at min 30' was 139 (7,71) but other than its in normal range i guess. And my growth hormone levels were all under 1 and it dropped to even as low as 0.23 (at min 90'). Also the acromegaly specialist wanted to get my MRI results read by someone else. And the radyalogist that read my MRI said that she thinks its a Rahke's cleft cyst (in the size of 2,5 mm) rather than a microadenoma. But the part that confused me is that she put a question mark next to it (rahke 's cleft cyst) on the report. To be honest I'm a bit confused they told me to get my hormones checked and repeat the MRI in 3 months. Should I see another doctor or should I just let it go. I'm a 20 year old female by the way.
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Avatar universal
COMMUNITY LEADER
Pituitary "stuff" can be quite... Daunting.
Here is what I know as a fellow patient. You did well to have the stim test and it should be enough, with the other testing, to do more testing. I am not sure, in your shoes, I would want to wait 6 months. The second Doctor has proven it is not non-secreting (and had it been such a lesion, this tend to grow super fast and should not be ignored at all!) and you are having physical and probably other symptoms. If it is acromegaly, then the doctor should act quickly to prevent the permanent damage that is being done and that progression can threaten life. If they think it is a rathke's cyst,  still no picnic and need even more testing to see if other hormones are off. As a patient, I don't see the benefit of waiting and I would ask that question.
The doctors may equate your age with being too young to have a serious issue, having time etc. but I know my pituitary issue came on in my 20's if not earlier and I wish I had been more agressive. Please ask why the wait, and try to find another pituitary center of possible.
1 Comments
Also, take pictures and keep a small picture album to show progression.
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