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
JeriTX about my heel pads they are cracking and therefore are sore. But there is another strange thing whit my feet, it feels like my toe don't reach down to the floor. So I think that the skin underneath in front of my feet is thicker than usual. And I do have a lot of foot pain.
Good luck with your research, and make an appointment as soon as you can, in order for you to get the treatment that you need.
Your symptoms are pretty much text book for acromegaly - do you get watery eyes as well? That was one of my biggest annoyances, along with the enlarged tongue, feet, hands and puffiness of my face.
Take care
Seemed to happen suddenly but took ages to clear up with heel cream, that's a symptom I hadn't even thought of until now.
I would definitely insist on seeing an endocrinologist.
I was diagnosed almost by chance (as were a lot of people here) only because my GP referred me due to hypertension that was not responding to much.
If the Norwegian health service is like the British NHS, sometimes GPs are reluctant to refer patients, it depends on the doctor you see.
My symptoms were: hypertension (7-8 years), fatigue, sweating a lot at night, thirst, mild sleep apnoea, snoring.
I developed multiple large cysts on my kidneys but these are not problematic and may have nothing to do with the acromegaly.
I didn't really think I had any other symptoms but the following became apparent only after having them pointed out or after surgery changed things: gaps in teeth, enlarged jaw (would 'click'), creaky joints (back/neck aches), weight gain, puffiness in face, fattened fingers, widened feet, bigger nose with less ability to breathe through nostrils.
Most of my symptoms I hadn't even mentioned to the doctor as I thought I was just getting older or reacting badly to the antihypertensives!
John
I now feel that Im better prepared to doctor's appointment!
And I will try to get and second opinion with an endocrinologist.
Arild
So many people, especially, in the medical field, even when my face was at its' worst, commented that I don't/ did not "look" acromegalic. The facts are that I am, all the same and thank God I don't look worse, 'cause I already grieve what I've lost. I think many of us could relate, too, to thinking that we could explain the changes to factors like aging or gaining weight or something else. It is such a sneaky disease.
Keep us posted Arild. I'm glad to hear that you'll be seeking the second opinion.
Im waiting for appointment to get and second opinion with an endocrinologist on another hospital.
But when I was at my local hospital I did notice that Im on waiting list for appointment to my old endocrinologist. I did have a check at a specialist in oto rhino laryngology because my tongue has become big, so maybe they have refer my to my old endo.
Well it may be a good idea to print off the symptoms of Acromegaly and take this with you and show him, and insist on all the relevant tests, especially the igf-1 etc Good luck keep fighting, unfortunately this is par for the course.
The people on here have given you some excellent advice.
I was just thinking, as the population of Norway is small, is there a possibility that the laboratory that is testing for your IGF-1 is perhaps testing incorrectly? They may have little experience in the analysis, or may be making some procedural error.
Another idea - as your testosterone is low, and you are receiving treatment for that, the gonads (testes) themselves produce growth factors too in response.
As others have said, if you see an endocrinologist, then all should come clear. Also, as others have said, keep talking to your doctor to get the right diagnosis. Good luck - and hope all goes well.
Trys
www.acromegaly.wordpress.com
I'm curious, what did the otorhino doctor say about your tongue? Did he suggest anything or do any tests? I am so glad you are still following up on this. Keep going!
Definitely look for a teaching hospital if you can. I also suggest that you check into Germany for treatment. I know they are doing research on the disease Another idea could be to contact the drug companies that manufacture, Somatuline, Sandostatin and Somavert (these are the 3 drugs that are used to treat acromegaly) and ask them if they can recommend any doctors in your country that treat acromegaly. I bet they will be only too glad to help you with this. DeveloGen in Goettingen Germany is working on a new acromegaly drug. You might contact them to see if they can recommend someone in Norway who can treat you. Also get them to test you for MENS1 as well -a genetic condition. Endocrine neoplasia can cause tumors in the pancreas, liver and lungs as well besides the pituitary. They could be growth hormone secreting as well.