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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lookingforhope89 08/10/2017

Does anyone see a tumor?

Long story short.. I was diagnosed in June with Acromegaly. I had elevated IGF-1, failed to suppress GH during glucose test, and radiologist confirmed a 2mm tumor on my pituitary gland.

I was referred to Emory for surgery. I don't meet with the neurosurgeon until next week but I did meet with the Endocrinologist there. She believes I've been misdiagnosed. She says she doesn't see a tumor, but did say she could be wrong with it being so small. She gave no real explanation of the other test aside from everything being a fluke and coincidence. She says I don't look like I have Acromegaly.

My Endocrinologist is pretty confident in his diagnosis. He stressed that with the tumor being so small that it means it was caught really early and it would make sense that I wouldn't have noticeable physical changes yet.

He's sending me for another MRI on a stronger machine. I've had a couple of people that have Acromegaly look at my MRI and say they see something. Anyone here see it?

Jameela 05/19/2018

This post is old but wondering about the outcome

hadassa 06/12/2018

I regret not being able to contribute here but, speaking of the MRI, has it ever happened to any of you that your MRI came out clean and yet you were ultimately diagnosed with acromegaly?

I have some serious symptoms (rings not fitting, sweating, insuline resistance to mention just a few) yet my MRI (3T) came out clean. I am going to ask for the second opinion as I was told during an optical exam (years ago) that I have something like a dot in my visual field and I also get mild eyeball aches every now and then.

Is it possible that even a very strong MRI does not detect the adenoma? If yes, can it be detected during an eye exam? What is your experience?

Jameela 06/12/2018

Hey hadassa who told u there was no tumor? The radiology report ot your doctor?

hadassa 06/15/2018

Hi Jameela, it is the radiology report that read the pituitary was ok. My endocrinologist is, luckily, very reasonable and thorough and she said she would have the MRI image checked by someone else in case the radiologist was not properly trained in reading pituitary MRIs. So we will see.

I am just wondering if it ever happened to anyone that their MRI, even if properly read, came out clean and yet it somehow turned out they had a tumour?

hadassa 06/15/2018

By the way, is it also possible to have a micro adenoma that is visible during an eye exam? I shared my story with the doctor (that years ago, I was told during an eye exam that I had some "dot" on my eye) and she said that this is possible only in the case of macro adenomas and I clearly do not have one (would have popped up on the MRI and my IGF-1 and TSH levels are only mildly elevated).

Is this true or there are some of you out there who had micro adenomas that were visible during an eye exam? Thanks!

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