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.
Hi Everyone,
I am not diagnosed with acromegaly, but my doctor has been testing me for it, along with Cushing's.
I have a lot of symptoms, and so many hormonal issues, it's hard to say what is causing what.
Basically, I am just trying to figure out whether I could have acromegaly based on my symptoms and test results.
Symptoms I do have: bone growth in chin and jaw, eyes look sunken in, face looks bigger, small spaces in my back lower teeth, pain and weakness in face, joints and muscles, spine growth in my very upper back/neck, mood issues, no period for three years (I'm 29), reactive hypoglycemia
Symptoms I do not have: headaches, profuse sweating (only sweat a lot at night), I wear the same shoe size (feet are wider though)
I have a bunch of other symptoms that match Cushing's (hair loss, body changes), and also have a number of tests indicating Cushing's.
My test results are weird - I have had some high-ish IGF-1s (330, 343), but have also had some low-ish (159). I did not suppress on my OGTT - GH went from 5ish to 6ish.
I do have a pituitary tumor. The MRI shows that it is very small - 3 mm. I also have a large cyst on my pineal gland and seven thyroid nodules.
My problem is that I think my other hormone problems are making my labs unreliable. I also have high cortisol (sometimes), no estrogen, and thyroid was low before replacement.
Anyway, I could use any advice and opinions at all. I am so confused at this point, and terrified that I am such a mess, no doctor will ever figure me out.
Could acromegaly cause knee and pelvis bone growth?
This seems like a wonderful site. I am glad to be here, and looking forward to getting to know you.
Hugs,
Katie
I am not diagnosed with acromegaly, but my doctor has been testing me for it, along with Cushing's.
I have a lot of symptoms, and so many hormonal issues, it's hard to say what is causing what.
Basically, I am just trying to figure out whether I could have acromegaly based on my symptoms and test results.
Symptoms I do have: bone growth in chin and jaw, eyes look sunken in, face looks bigger, small spaces in my back lower teeth, pain and weakness in face, joints and muscles, spine growth in my very upper back/neck, mood issues, no period for three years (I'm 29), reactive hypoglycemia
Symptoms I do not have: headaches, profuse sweating (only sweat a lot at night), I wear the same shoe size (feet are wider though)
I have a bunch of other symptoms that match Cushing's (hair loss, body changes), and also have a number of tests indicating Cushing's.
My test results are weird - I have had some high-ish IGF-1s (330, 343), but have also had some low-ish (159). I did not suppress on my OGTT - GH went from 5ish to 6ish.
I do have a pituitary tumor. The MRI shows that it is very small - 3 mm. I also have a large cyst on my pineal gland and seven thyroid nodules.
My problem is that I think my other hormone problems are making my labs unreliable. I also have high cortisol (sometimes), no estrogen, and thyroid was low before replacement.
Anyway, I could use any advice and opinions at all. I am so confused at this point, and terrified that I am such a mess, no doctor will ever figure me out.
Could acromegaly cause knee and pelvis bone growth?
This seems like a wonderful site. I am glad to be here, and looking forward to getting to know you.
Hugs,
Katie
Jeri - I think my current doctor is starting to lean toward surgery, because of the Cushing's. But, he still wants more testing. There is so much time between testing and appointments - it is always getting harder to bear. My current doctor is a pituitary specialist and brilliant in many ways - he just moves so slowly. I am also headed out to California next week to see a doctor I never stop hearing wonderful things about. Thanks for the encouragement, and I am sorry for all you have been through. How are you doing now?
Jokey - did you have a pituitary tumor removed? And, how are you doing? Thanks for the welcome. Once I get situated, you will realize I have a quirky personality as well. Don't all of us pituitary people? Don't we have to? ;)
mctrjt - thank you for the advice. I am glad you find such joy and comfort in this group. I have made connections with people who I now consider as close as family on other support group site. I am so thankful we have a way to find each other.
I will have to look at some old posts, but I guess I am just wondering if my symptoms truly match acromegaly, especially the bone growth in my knees, top of my spine, and pelvis - I have never read those areas mentioned with regard to acromegaly before.
Thanks again! I hope you all have a wonderful holiday. One thing about being sick - it makes special times all that much more significant and blessed.
Love,
Katie
I just recently joined this group. When I was reading your intro, I thought I had written it myself for a few lines. I had adrenal Cushing's disease and had an adrenalectomy one year ago, almost to the day. I went to Mayo a couple of months ago because I, too, was so frustrated at the slow testing process. Mayo was great. I just got a blooddraw a few days ago. Get this - I am being tested for Acro, Hyperparathyroid, Cushing's, Hashimoto's Thyroiditis, and post surgical menopause. Mayo wrote a plan for my docs at home to follow. I may go back. My MRI was so chunky that they can't tell if I have a pit tumor. I am doing a UFC today and another midnight salivary.
I am convinced that my whole endo system is sending bad messages. I had my dentist pull my teeth x-rays. I got Invisalign braces because my teeth did not allign and can't say when that happened. Then, I saw a video clip of an Acro patient talking about braces...I have four elevated IGF-1s, no dx.
Good luck to you. Have you found the support for Cushie's?
www.cushings-help.com It is because of them that I had awareness about Acro.
Sheila
Sheila - what is your screen name on Cushing's-Help. I am also a member there, and my screen name is the same as here. My whole life story, at least for the last year, is in my posts on that site. What about my post did you identify with (aside from feeling like an endocrine nightmare)? I am very sorry to hear you are also going through this - I wouldn't wish it on anyone - truly. Oh - I have a dentist appointment coming up at the end of this month to close gaps in my teeth.
I am headed to see Dr. F this Thursday, Please everyone, pray for me.
Love,
Katie