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.
Is there anyone who can help me with some questions I have? I have some symptoms that can look like acromegaly but blood samples do not show that.
After long time sickness I got reported sick in May 2006 and have not been working since. The summer 2006 I had an appointment with a specialist in internal medicine, looking at my symptoms he suspected that I could have acromegaly. Blood samples showed elevated growth hormone and IGF-1 normal. He then took the same test once more, showing same results. Then I took an MRI showing a small adenoma on the pituitary gland. At the autumn 2006 I got hospitalised and more tests was taken to check out acromegaly, then the IGF-1 and growth hormone was normal.
Symptoms I have:
Feet: Since I was 30 years (now 47) I have increased shoe size 3 sizes. Hands: 3 years ago my wedding ring got to small. Head: Intense pain in face, particularly in upper jaw, nose and palate area. My teeth feels sometimes a bit loose and I am loosing parts of them, had to remove one tooth completely. I had very strong teeth earlier. At the autumn 2008 I took an OP on my nose (septum). I have tinnitus on one ear. Have got hoarse voice, and feel very narrow in that area.
Have pain in joint and muscle, because of that I have problems with my mobility (especially in stairs). What bothers me most is that total exhaustion, cant do anything before I get tired. I have got diarrhoea for more than three years.
Im on testosterone injection. I have very low level of testosterone, my level is 6,7 (normal from 9,9 to 27,8). And now I have start up with medical treatment against hypertension.
In 2006 my IGF-1 level vas at 23,5 (normal 12 35), now three years later my IGF-1 is 37,3.
My question is if its possible to have acromegaly with this level of IGF-1? My endo told me that its normal to have a little above the normal level?
Pardon my bad English, I am Norwegian!
Thank you very much for your answer.
Best regards Arild
After long time sickness I got reported sick in May 2006 and have not been working since. The summer 2006 I had an appointment with a specialist in internal medicine, looking at my symptoms he suspected that I could have acromegaly. Blood samples showed elevated growth hormone and IGF-1 normal. He then took the same test once more, showing same results. Then I took an MRI showing a small adenoma on the pituitary gland. At the autumn 2006 I got hospitalised and more tests was taken to check out acromegaly, then the IGF-1 and growth hormone was normal.
Symptoms I have:
Feet: Since I was 30 years (now 47) I have increased shoe size 3 sizes. Hands: 3 years ago my wedding ring got to small. Head: Intense pain in face, particularly in upper jaw, nose and palate area. My teeth feels sometimes a bit loose and I am loosing parts of them, had to remove one tooth completely. I had very strong teeth earlier. At the autumn 2008 I took an OP on my nose (septum). I have tinnitus on one ear. Have got hoarse voice, and feel very narrow in that area.
Have pain in joint and muscle, because of that I have problems with my mobility (especially in stairs). What bothers me most is that total exhaustion, cant do anything before I get tired. I have got diarrhoea for more than three years.
Im on testosterone injection. I have very low level of testosterone, my level is 6,7 (normal from 9,9 to 27,8). And now I have start up with medical treatment against hypertension.
In 2006 my IGF-1 level vas at 23,5 (normal 12 35), now three years later my IGF-1 is 37,3.
My question is if its possible to have acromegaly with this level of IGF-1? My endo told me that its normal to have a little above the normal level?
Pardon my bad English, I am Norwegian!
Thank you very much for your answer.
Best regards Arild
Have you had a colonoscopy done? They should check your colon. Acromegaly can affect your colon, your kidneys and can enlarge your heart as well. When I had the tongue problems some years ago I bought Sage tea and rinsed my mouth several times a day and it did help. Sage is healing, some of those mouth rinses are very harsh and can make things worse.
I am glad you found this group. Do you know the size of your pituitary adenoma? I have Lupus along with the pituitary tumor. It's a good idea to see the rheumatologist. I hear that quite a few people with pituitary adenomas also have Lupus. By the way your english is GREAT !!!!!!!
Ulrike
Found 5 endocrinology units in Norway's hospitals who make clinical trials on acromegaly. They must have good knowledge of the disease. (Idea is to contact the right doctor, not to participate to the trials.)
You can find the names on the botom of this page at "contact /location".
http://clinicaltrials.gov/ct2/show/NCT00521300?term=acromegaly&rank=5
For others looking for a doctor in their country : if you enter "acromegaly" as keyword on top, you can find acro specialists in hospitals all over the world.
I shall try to answer as good as I can (pardon my broken English).
spieqal
Yes I feel like Im better prepared now after all the good advice I have got here!
Trys
I think the laboratory here in Norway is pretty good. I meant that the small population gives few case of acromegaly so they dont know what to look for, for instance on my last appointment the doctor told me he could pick out on the street who have acromegaly.
I shall mention that with the gonads when I see an endocrinologist.
JeriTX
The otorhino doctor didnt know anything about acromegaly. She refer me to a sleep apnoea test, because it feels like Im suffocate when I sleep because of my big tongue.
nortwest2
Im waiting for appointment to get and second opinion with an endocrinologist on another hospital, and this is the largest hospital in Norway. And I shall mention test for MENS1 next time to the endo.
Ulrike
I have checked the bowel(colonoscopy) and they didnt find anything particularly. I shall check the kidneys 2.September, and I shall take x-ray of my hart soon. The size of my pituitary adenoma is pretty small, 2-3 mm. Im waiting for appointment to and rheumatologist.
Berthe
Im waiting for appointment in the largest hospital in Norway and I hope they can find out what is bother me. The hospital you are referring to in your link is my local hospital.
I must again say thank you everybody for your good advice!
It's me again :-)
I continue on the same topic as I started at the first time, then you can see my history.
I have still got no diagnose :-( .....and I has continue to take blood samples up against acromegaly, the IGF-1 is high and HGH is normal (OGTT is normal too). For some weeks ago I was to an endocrinologist and he took some new blood samples. It was Cortisol and ACTH, and both was high. Cortisol 754 (norm 142 - 651 morning) and ACTH 27,3 (norm 1,1 - 10,2). So I wonder if someone has experience with these?
On my profile I have added a picture that shows my IGF-1 results since I first started to take them