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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Endocrine System
/ Acromegaly Support Group

Not officially diagnosed

ANGIE1990
ANGIE1990

Hello everyone,  my name is Angie Graham . I'm 27 years old, and I know that I have acromalegy based on my symptoms. Three months ago I woke up and my eyes were bulging, and I could feel the bones in my face thickening. It freaked me out and was quite painful. Over the past 3 months I've grown an inch taller, my hands and feet have grown a size and a half, I'm tired all the time, I  have severe brain fog, am constantly hungry,  my face has become more elongated and my jaw has enlarged. I also experience heart pain, a rapid heart rate, and occasional nausea. When I first started experiencing my sx , I told my doc that something was way off, and she just said that I was experiencing "extreme anxiety" and prescribed me an antianxiety medication. I've finally been able to convince her to refer me to an endo and order an MRI . I had a CAT scan done a few days ago, and they didn't find a tumor, but I am fairly certain that I have one. My MRI is scheduled for tomorrow . Can anyone give me any advice on which tests I need my endo to run, or any additional advice regarding what else I should expect with this condition? Thanks.

ANGIE1990
ANGIE1990
Thanks, naturallyheal! I was also looking over old pics of me, and I can see how i could have had acromegaly since my childhood. I've always had big hands, feet, and a long face, needed lots of sleep, eaten a lot, had sweating issues, rapid heart rate, high bp etc. It wasn't until this past summer that I started experiencing extreme acro sx. I'm adopted, and I was told that my bio mom did heroin and meth during her entire pregnancy with me and I was 3 months premature. The docs told my adopted mom that I was likely to have severe health/developmental probs due to my bio mom's drug use, so I'm not surprised if that messed up my hormones from the start. Anyway, good luck with your OGTT! It's comforting to know that I'm not alone in this.
ANGIE1990
ANGIE1990
Hey guys just thought I'd give you an update. I passed my OGTT and do not have a pituitary tumor, thank goodness. However, I'm still experiencing sx related to acromegaly. I met with an eye doc last week, who knows about various bone/growth disorders, and he said that it is possible for me to have acro and it not show up on hormone tests yet. His suggestion is for my endo to test me periodically for acro. Has anyone else had a similar experience where you did not have a tumor/ and you passed the OGTT and ended up having acro? Is that even possible?
naturallyheal
naturallyheal
Hi Angie, I didn't catch your earlier post, because I didn't go to page 2. So sorry to hear that you didn't have a good start in life due to your mom's drug issues. I'm glad that you passed your OGTT. It's sometimes hard to know what's going on and that's frustrating. I didn't pass my OGTT (which I expected) and I probably had this thing for 20 years, but had no clue. Even if you don't know what is causing your health issues, you can take control to live your healthiest life possible and keep exploring, such as periodic testing for acro. I just posted under 'alternative treatments' (6/30). Pursuing alternative treatments is not for everyone, but anyone can explore how foods, herbs and other lifestyle choices can make you feel better. I wish you all the best with your health!
ANGIE1990
ANGIE1990
Thank you, naturallyheal! I'm sorry to hear that you did not pass your OGTT. However, it's good that you now know what's going on. I will definitely read your post on alternative treatments. Thanks again! Best of luck to you as well!
ANGIE1990
ANGIE1990
I received my OGTT results. They are as follows:
Glucose venous: 102

glucose plasma: 94, 95, 112, 90, 91.

Growth hormone: 0.12, 0.11, 0.13, 0.21, 0.66.

I am no expert, but shouldn't the numbers be going down after I drank the glucose and not up?
hadassa
hadassa
Hi Angie,

My OGTT values are nearly the same as yours (except that mine was done at 0', 30' and 120' and it seems yours was more thoroughly done i.e. every 30 mins), with the growth hormone visibly going up at 2h.

My endo has a serious suspicion of acromegaly (on the basis of this, my symptoms and the MRI showing pituitary abnormalities but no visible tumour - going in for a second MRI, this time around a dynamic one) and is sending me to a professor specialised in acromegaly.

So I agree that your OGTT looks suspicious to me. What is your IGF-1?

By the way, please find below the links to some articles putting the OGTT into perspective as the "gold standard" in diagnosing acromegaly (I agree that our OGTT values look kinda weird but the fact remains that each time the GH is below 1 ug/ml which in theory could pass as normal to many doctors):

https://academic.oup.com/jcem/article/87/8/3537/2846473

https://www.ncbi.nlm.nih.gov/pubmed/20926592

Hope this helps and do let us know how it is going!
dlhvac
dlhvac
Hormone regiment you’re eyes don’t bulge it is so gradual it is hard to notice