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
I'm certainly no expert but your symptoms do sound very much like a lot of ours,have you been to any other Doctors for a 2nd opinion?
I would get this checked (I have got diarrhoea for more than three years) this doesn't sound right.
Seems like you have had these symptoms for way too long and you deserve proper treatment, I would be going and seeing some more Doctors until I was satisfied with all that was being done.
I hope you finally will get a proper diagnosis.Take care.
I know that acromegaly is a very rare disease and here in Norway the population is 4,8 millions, sow I dont think they have experience with many cases of this disease. And it is difficult to get a second opinion here in Norway, the health service is for free sow we must take what we get.
I was at a specialist in oto rhino laryngology for a couple of weeks ago because my tongue has become big. She looks in my journal and says you have such tumour on your pituitary gland, isnt that the kind who makes soft tissue grow. She had now experience with acromegaly! She recommend me new brand of toothpaste against the ulcer in my mouth. Then I have to tell here that the ulcers did not bother me, and that my problem was that I have to sleep with my mouth open because my tong is too big. Then she recommended a sleep apnoea test, sow Im now waiting for that test.
So everything seems sow difficult therefore Im very grateful for the support I get her!
Thank you everyone!
Crippler its difficult to say if there is any changes on my face, I have gain weight so my face is bigger (that sounds terrible LOL).
I got a letter from my GP now to day how tells me that I have IGT (Impaired Glucose Tolerance) and that I have risk developing diabetes :-(
She did phone me for some days ago and told med that she has referral me to an urologist and a nephrologist. I forgot to ask here but I suspect it cud be something wrong with my kidneys to.
And Im also waiting for appointment to rheumatologist and a heart-specialist. So I hope someone is soon finding out whats bothers me.
Im not sure if I understand your question, but my nails are growing fast and that are my hair to.
Good luck