They have to check your growth hormone levels to determime acromegaly but I would also have them check prolactin and estrogen. The weird thing for me is that acromegaly showed up after my pituitary tumor shrunk to basically nothing- which makes me think that there doesnt have to be a tumor for your growth hormone to be out of whack or to have acromegaly. If they do find your growth hormone is elevated they should do a test to determine if the growth hormone is elevated from disruption in your pituitary gland (growth hormone suppression test) or if there is possibly a tumor somewhere else in your body that is producing the extra growth hormone...

I was diagnosed with an mri that showed the tumor, my IGF level was checked and oral glucose tolerance test. All that confirmed my diagnosis. Was diagnosed 3 weeks ago

Thanks for the responses. All of the info is extremely helpful. :)

GA peach, it's interesting you said that there doesn't have to be a tumor with acromegaly. My MRI came back normal. I just took the IGF1 test this morning. I should have results by tomorrow.

I have a random question. Is drinking coffee bad for this condition? I stopped drinking it when I started experiencing my sx, but I've been craving it recently.

Angie,

My situation is very similar to yours, as I have experienced many of the symptoms you listed. Elongated face, rapid heart rate, and nausea just to name a few symptoms. In fact, my TMJ has gotten so bad that I am being treated for it with orthodontics. I made my GP aware of my Acromegaly concern and had my IGF-1 levels tested. The doctor was not concerned, and my levels were perfectly within range for an 18 year old (331). I have scheduled another appointment with a specialist just to be safe and get a second opinion. I will be pushing for an MRI.

I find it interesting that your MRI came back normal. As you may already know, MRI and IGF-1 levels are two of the main determining factors for diagnosing Acromegaly. With an absence of elevated IGF-1 levels, and a lack of pituitary tumor found in an MRI, Acromegaly is unlikely.

I must ask - do you have any history of anxiety? Is your family noticing these changes? I am in no way dismissing your concerns or symptoms. I know for myself that my fear is VERY real and the symptoms are not made up by any stretch. But I think for cases like ours, where the evidence of a diagnosis simply does not align with our symptoms, we have to be open minded rather than driving ourselves nuts. If your IGF-1 levels do come back clean, then maybe your doctor suggesting anxiety isn’t so far fetched. Because the mind is a powerful thing, and a person can have “acromegaly-like” features without actually having the disease itself/progression.

Once again, I am not trying to minimize your symptoms. If you are physically experiencing changes and your shoe size / body is reflecting this, then I think you seeking medical help is the best course of action. I just want to say to stay open minded. I, myself have terrible anxiety. It can be truly debilitating at times. It causes my blood pressure to spike, and my heart to race. Which both happen to be symptoms of Acro.

I know this is probably a difficult time for you, but I feel your pain. Please keep us posted and best of luck.

Wait to see what the IGF lab says. Hopefully it shows you don't have it after all.

Hey zan 555, I do have a history of anxiety. However my family has been noticing my physical changes, facial elongation, bigger hands and feet. Also my tongue has gotten longer. It's honestly weirding my mom out. I do find it strange that there was no tumor on the MRI. I will have my IGF1 results by tomorrow. I'll keep you all posted.

My igf1 level is 219 out of 300 and My thyroid antibodies are way elevated. My doc is trying to tell me that I shouldn't meet with an endocrinologist.

Hmm... Same as my situation. I checked up online for the IGF-1 reference range and for a 27 year old, up to 275 is considered within normal range. I would just keep an eye on symptoms - but it sounds like this could be a thyroid issue if those levels are elevated perhaps? Like I said my IGF-1 was 331 (normal) but I’m 18 so it’s all relative. When I asked my GP if it was necessary to come in again to see if the levels were on an upward trend, he said there was no need. But still keep us updated because my symptoms are a lot like yours and I’m wondering if a thyroid issue could mimic Acromegaly symptoms.

Thanks zan555 for the info. I went ahead and asked my doc to keep the referral for the endo, bc of my thyroid issues. I hope she agrees. Otherwise I'll have to find a holistic doc to meet with. I'll definitely keep you all updated.

I just realized something a few days ago. The igf1 test that my doc ordered didn't include the oral glucose tolerance test. From what I've researched, simply doing an igf1 test isn't enough to diagnose acromegaly bc igf1 levels fluctuate on an hourly basis. I'm currently trying to get my primary care provider to order the glucose tolerance test with the igf1 but she is dragging her feet. Has anyone else had problems with getting docs to run additional tests? This is so frustrating for me bc I'm in a ton of pain , exhausted all the time, still experiencing heart pain, terrible headaches, and jaw/joint pain every day and my doc keeps trying to tell me that i dont have acromegaly bc i dont have a tumor in my pituitary and all i need is antianxiety pills and acupuncture.

Angie, Only when an IGF-1 (insulin-like growth factor) is elevated, then doctors will want to confirm an acromegaly diagnosis with an oral glucose tolerance test. IGF-1 level is relatively stable. Growth hormone levels (GH test) fluctuate, so they won't want to rely on a GH lab to confirm acromegaly. You don't have an elevated IGF-1, so it's not expected that doctors would proceed to the oral glucose tolerance test. Besides physical signs, your test results don't indicate that you would likely have acromegaly, but it's always possible. It could be another health issue. If you're not confident with your doctor, you should consider getting a second opinion. I hope that you will get answers and that your health improves soon..

Thanks for the response, naturallyheal. I met with a neurologist a week ago, (bc my primary care doc thought that somehow my sx may be neurological in nature, bc i have a chiari 1 malformation). When I explained my sx to the neurologist, she automatically referred me to do an oral glucose tolerance test bc she said that the sx i am experiencing are acromegaly sx. She knew about it bc one of her colleagues has acro, and came to her and complained about experiening the same sx as me. The neurologist also asked to look at old photos of me, and she said she can see physical changes in my appearance over the past 3 plus years. I took the OGTT this past Wed and i should be getting my results by next week. The neurologist also referred me to get another MRI of just my pituitary to look again for a possible tumor. Will be getting that done within the next 2 weeks hopefully. I'll definitely keep you all posted.

Angie, I'm glad that you're getting the support that you need. It sounds like your primary care doc is collaborating with you - with your research and encouragement! I'm taking my OGTT this morning - so we're in the same diagnosis phase, but haven't had an MRI yet. I was looking at my pictures this week and realize that I might have had acromegaly much longer than I thought. Good luck with everything! Keep us posted.