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 started stalking this website about 2 weeks ago when my doctor began to seriously investigate whether or not I have acromegaly. I have had a daily, debilitating headache since April 2010. I have had just about every test to rule out tumors or bleeds. I have had nerve block injections done to numb the nerves in my face and head- with no results. My doctor began to suspect that I had a cerebrospinal fluid leak since my headache are related to position- much worse when I am upright. I was about to have a spinal tap and blood patch done when I developed the lovely crease in my forehead that you can see in my profile picture. My headache guy started asking me other questions- do I have leaking breasts- yes, do I have achy joints- yes, do I have swelling in my hands and feet- no. However, my ring finger and shoe size have increased since I graduated high school in 1992. He suspected acro and sent me for blood work. My GH was normal, but my IGF-1 was elevated. Normal is under 300 and my was over 500. He sent me to an endo. The endo looked at me and said he didn't think I had acro, but ordered the GH and IGF-1 again. GH was again normal and IGF-1 was 552. My prolactin is low. He sent me for an OGTT to see if my GH spiked with the glucose. It was .2 before glucose. It went up to .4 and .6 but never got any higher. My IGF-1 was still elevated in the 400s. He did an MRI with and without contrast on my pituatary and it was normal. He said today that he doesnt' know why my IGF-1 is elevated, but he said I definitely don't have acromegaly because my GH is low. He also said that acromegaly is caused my large pituatary tumors not something so small that it is hard to detect on MRI.
I wanted to talk to you on the message board. You are the true "experts" on this disease. My endo probably sees 1 new acro patient a year. What do you all think? Should I send my labs to someone for a second opinion?
Thanks for reading my story and for your thoughts. I am just SO ready for answers!
Meredith
I started stalking this website about 2 weeks ago when my doctor began to seriously investigate whether or not I have acromegaly. I have had a daily, debilitating headache since April 2010. I have had just about every test to rule out tumors or bleeds. I have had nerve block injections done to numb the nerves in my face and head- with no results. My doctor began to suspect that I had a cerebrospinal fluid leak since my headache are related to position- much worse when I am upright. I was about to have a spinal tap and blood patch done when I developed the lovely crease in my forehead that you can see in my profile picture. My headache guy started asking me other questions- do I have leaking breasts- yes, do I have achy joints- yes, do I have swelling in my hands and feet- no. However, my ring finger and shoe size have increased since I graduated high school in 1992. He suspected acro and sent me for blood work. My GH was normal, but my IGF-1 was elevated. Normal is under 300 and my was over 500. He sent me to an endo. The endo looked at me and said he didn't think I had acro, but ordered the GH and IGF-1 again. GH was again normal and IGF-1 was 552. My prolactin is low. He sent me for an OGTT to see if my GH spiked with the glucose. It was .2 before glucose. It went up to .4 and .6 but never got any higher. My IGF-1 was still elevated in the 400s. He did an MRI with and without contrast on my pituatary and it was normal. He said today that he doesnt' know why my IGF-1 is elevated, but he said I definitely don't have acromegaly because my GH is low. He also said that acromegaly is caused my large pituatary tumors not something so small that it is hard to detect on MRI.
I wanted to talk to you on the message board. You are the true "experts" on this disease. My endo probably sees 1 new acro patient a year. What do you all think? Should I send my labs to someone for a second opinion?
Thanks for reading my story and for your thoughts. I am just SO ready for answers!
Meredith
first, it is not true that acro is only caused by large pit. tumors. there are people with very small tumors (microadenomas) who have high GH and IGF1, and so clinically have a severe case and are suffering greatly with symptoms.
i would suggest you connect with someone on this list named Insunshine, here's her profile:
http://www.dailystrength.org/people/497852
click on send a message on right side to send her a private message.
she has been having issues with being diagnosed, her situation is not the same as yours, but somewhat similar. she's done a bunch of research on various causes of acro symptoms from other conditions.
also, I would recommend that you see one or more Endos for additional opinions, ideally someone who is an expert in acro. I will look for the list of Endos I have and will post that below in a minute.
wishing you the very best. you will get through this... many of us have similar stories where it took a while to understand what's happening.
peace, sunny
Recommended by someone in this group:
Pejman Cohan MD in Beverly HIlls, CA
Specialize in Acro, cushings, etc. Recommended by stephannerod.
Phone Number:(310) 657-3030
Theodore Friedman MD in CA
http://www.goodhormonehealth.com./index.html
rec by kvb927 - you can search for her posts.
Top Pituitary Centers in the USA:
Dr. Biller, Dr. Klibanski, or Lisa B Nachtigall, MD at Mass General Hospital, Boston, MA
The Neuroendocrine Clinical Center - specializes in Pituitary and Acro
http://pituitary.mgh.harvard.edu/Staff.htm
Shlomo Melmed, MD
Cedars Sinai, Pituitary Center, Los Angeles, CA
Heard good things about his associate Dr. Carmichael also.
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Pituitary-Center/
Other Endos specializing in Acro:
Lewis Blevins MD, UCSF, San Fran, CA
http://www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR&doctorid=38691
Ref to him by an Endo locally - supposedly one of the top Endos in the country for Acro.
William Ludlam MD, Seattle Pituitary Center at the Swedish Neuroscience Institute, Seattle, WA
http://www.swedish.org/Services/Neuroscience-Institute/Neuroscience-Services/Pituitary-Services
Endo - specializes in Acro
Mary Lee Vance MD at Univ. of Virginia
http://www.healthsystem.virginia.edu/internet/neurosurgery/pituitary.cfm
Hope that's helpful to you. You may also want to search th discussions in this group for Endos b/c others were recommended by other members.
All the best, Sunny
I want to reiterate what aztreasure said...
1. All pituitary tumors are not large
2. The size of the tumor and the amount of GH production are not 1:1.
3. A pituitary tumor is not always easily seen in an MRI--both because of size and the nature of the tumor matter.
Was the GH just measured from a blood test or was it through a 24-hour collection of urine? If not the latter, you should probably ask for it. In theory, high IGF-1 indicates high GH...but GH secretion varies over the course of the day, unlike IGF-1 which remains relatively static.
Others are more knowledgeable, but these are my first thoughts. I wish you the best of luck as you move forward with your diagnosis and eventual treatment. You've already accomplished a lot!
that's why it's important to see doctors who know about Acro and can hopefully be medical detectives with their knowledge.
have a great day all!
University of Michigan has a pituitary and endocrine clinic in ann arbor, michigan. Director is Dr. Ariel Barkan who is widely published and considered an authority on acromegaly. You may want to check with him for a second opinion.
Ledgy
I contacted University of Pittsburgh and would have gone with them for my surgery but living in Tennessee made it possible for Vanderbilt University to write off my surgery and it was a lot closer. I would definitely recommend UPMC and Dr. Daniel Previdello, though I think he's gone to another institution, but their website has a lot of information you'll find interesting and helpful.
I too have high IGF-1 and normal GH after 3 hr glucose test. Endo says it's nothing even though i have a 5 mm pit adnomea. Please if you get any info let me know I have been feeling sick for 3 years with high IGF-1 and after a dozen docs no one can explain the elevated IGF-1 and no one does anything about it.
Any light you may be able to shine would be great
Thanks
I too have high IGF-1 and normal GH after 2 hr glucose test. I already had 2 surgeries. Last one was in June 09 and since then I have normal OGT test but still elevated IGF-1.
I have found one article: "Monitoring of acromegaly: what should be performed when GH and IGF-1 levels are discrepant?" by Pamela U. Freda.
Has anyone more informations about possible causes?
Thanks,
Harmony
Here are several patients including me who have dicrepant lab results. I have found great article which explains why this can happen: "Monitoring of acromegaly: what should be performed when GH and IGF-1 levels are discrepant?" by Pamela U. Freda.
In this article are mentioned several options if OGTT is normal, but IGF-1 is elevated. These are:
Patient in remission (the one for lucky ones)
Falsely elevated IGF-1
- Adolescense
- Pregnancy
- hyperthyrodism (mild elevation)
- IGF-1 assay problems
- Early posoperative period
Patient with active disease
- Cuttoff for GH supression too high for GH assay used
- Easy supressible early or mild active acromegaly.
And there are also causes for "Abnormal" GH supression with a normal IGF-1 levels:
Patient in remission
- dysregulation in GH secretion
- Disruption og neural or anatomic networks of GH regulation
- mild or early GH excess
Causes of abnormal GH supression other than acromegaly
1) chronic renal insufficiency
2) liver failure
3) active hepatitis
4) anorexia nervosa
5) malnutrition
6) hyperthrodism
7) Diabetes mellitus
8) Adolescense
Cutt off for GH supression inappropriately low for GH assay used
Patient with active disease
Lowering of the serum IGF-1 level
- nutrient deprivation, malnutrition
- Anorexia nervosa
- Liver disease
- Hypothyrodism
- poorly controlled insulin dependent diabetes mellitus
- Oral oestrogen use
Inacurate IGF-1 normal range - upper limit to high
If anyone would like to read whole article, write me to my private email.
Good luck,
Harmony22