What is Acromegaly
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). ...
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Do I have Acromegaly?
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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 ½ 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, can’t do anything before I get tired. I have got diarrhoea for more than three years. I’m 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 it’s possible to have acromegaly with this level of IGF-1? My endo told me that it’s 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 Posted on 06/28/09, 08:06 am |
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Welcome to the forum Arild your english is fine,
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. 
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Fight dont let anyone fob you off get diagnosed as Aussie faye says get an second opinion I got diagnosed by a hormone specalist. This conditon is sneaky but do not wait long do not let this go on be firm this conditon if its acromegaly it does not disappear .....Your owe it to yourself to get a proper diagnosis to then get treatment to help stop this conditon from doing damage.I had to fight.Feet and teeth are a very good indication of the acromonster lol is at work but first keep at them all the best JJ
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You seem to have everything in place that would indicate that you have the disease. For whatever reason your tumor may be less active and not producing much IGF-1 now, but it is still above the normal range and that would seem to be a reason for some concern, especially given your symptoms. I agree with Jokey and Fay that you should seek someone else's help so that you can have treatment. It is definitely a sneaky and a complicated condition and I am finding that even the so-called experts don't always come through for us if we don't remain vigilant ourselves. Best regards and welcome to our group, too.
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Welcome...there is no doubt thatyou need another opinion, acro's journey is different for everybody but I have not heard of any other reason why adults feet grow..to the degree that yours has..even slightly elevated levels of IGF-1 can have an impact...somewhere on here I think other's have talked about testorne isues..I would enourgae you to read old jounrals....welcome!!!
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DONT PUT ANYTHING OFF lol get in there and sort it out chain yourself to a chair anything ROFLMAO but keep at them. Im laughing because I nearly did that seriously this must be worrying for you and your family so big hug JJx
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Thank you very much for your answer.
I know that acromegaly is a very rare disease and here in Norway the population is 4,8 millions, sow I don’t 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, isn’t 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 I’m now waiting for that test. So everything seems sow difficult therefore I’m very grateful for the support I get her! Thank you everyone!
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Welcome to the forum. This disease is very tricky and rare, which means that you may have to go through several specialists in order to get diagnosed. I went to (supposedely) the best doctors in my country (Portugal), was getting treatment for my symptoms instead of the disease itself by the best people on the field, who (IMO) have an obligation to know about acromegaly. So be very cautions about doctors tell you to do, they may be doing more wrong than done. I´d try to book an MRI asap and do some blood work. I have a question: did you notice any changes on your face?
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I am so sorry that you have the symptoms that you explain. Acromegaly affects us in many ways and we do not all have the same symptoms. What you describe sounds very much like acromegaly and I encourage you to get another opinion. I have many of the same symptoms you describe, especially the joint pain and the teeth problems. I too have the feeling of loose teeth. The increased hand and feet size is a very common symptom. Please do get another opinion. We are glad to have you join us and thank you for sharing your story with us.
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Hi, welcome to the Forum,enlarged tongue is a common symptom of acromegaly, but once you start on the medication, this will shrink down, you need to get lots of tests done,these should be done by the endocrine dept. Good luck
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I have to say thank you very much for your answers again, I’m glad for your support!
“Crippler” it’s 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 I’m also waiting for appointment to rheumatologist and a heart-specialist. So I hope someone is soon finding out what’s bothers me.
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