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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Heres a question for you dont laugh got the ward sister with this one do your nails grow quickly also I noticed when I was doing the very first GT there was droblets on my hand ever noticed this.But the thing is collect all info together we have a discussion on symptoms although some people are different you should look write a list make notes however insignificant you may think something is write it down so you dont forget anything ....Least your getting a full MOT so it sounds lol This has been going on for a while by the sounds of it I keep my fingers crossed you get the name of what it is and then you can then get onto a treatment to help and if its acromonster sooner than later relieve some of the things youre going through JJ 
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JOKEYJ
I’m not sure if I understand your question, but my nails are growing fast and that are my hair to.
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Another couple of signs my hairdresser so moaned your hair grows so fast and my nails did women would come up and go oh my what beautiful long nails 'where you get them done'.Id go they real they then go youre lucky we pay a fortune for nails like that.The specalist nurse looked surprised when I pointed this out see its little things.The drug has thinned my hair relief to hairdresser and my nails dont grow as fast YAH lol
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Hi, Diabets, heart and all other symptoms can be looked after by thier specialists!!! BUT!!! you need to see ENDOCRINOLOGIST!!! see as many as you can, you cannot afford not to!! this monster can create avoke
Good luck
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Sounds like what you really need is a referral to an endocrinologist who specializes in pituitary disfunction. You have to be careful because this is a realtively rare specialty - many, many endocrinologists can manage diabetes but not pituitary problems. Since the condition is so rare , I would recommend that you try to be seen by an endocrinologist at an academic medical center. Where are the medical schools in Norway? Where does the academic/ clinical faculty see patients. It's worth the drive to been seen at a specialty center. I am seen at a pituitary clinic located 2.5 hours from my house - the expertise is worth the drive.
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I am very worried for you. I suggest you make a list of all your symptoms and also a list of acromegaly symptoms and show your doctor that many of your symptoms are on the acromegaly list. You must see an Endocrinologist or Neurologist. The Neurologist would understand what the pituitary tumor is causing. Please seek help because the symptoms will get worse unless you get treatment. I'm glad you have joined our group. We understand your pain.
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Welcome to the group! You really sound like a walking encyclopedia of acro symptoms. I agree fully with the others. Look at teaching hospitals and specifically ask about endocrine specialists with training in acro AND LOTS of experience in transnasal hypophysectomy of the pituitary. That is the surgery most often recommended for pituitary tumors, and success is strongly related to amount of experience. Go out of country if you have to. Here's an odd symptom- have you noticed your heel pads are thicker than usual or you have foot pain? Just another bizarre sign. Be tough, and keep fighting. If you don't have acro, that would be wonderful, but clearly you have something major going on. Stay with us!
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Thank you very much again for your answers!
“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.
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Sorry to hear that you are struggling to get a real diagnosis for acromegaly. The suggestions and advice you have been given here have all been exactly what you need in order for your doctor to refer you to a specialist (endocrinologist). It would be beneficial to print off a list of acromegaly symptoms (easily obtained via the web) and highlight the one's that you are experiencing. Armed with this, it would be a perfect time to go along to see your doctor and show them the evidence. Unfortunately due to the rarity of this disease, sometimes you have to educate yourself first, in order to educate the generalist doctor, who probably has never treated another patient with this disease. Research as much as you can, if you totally understand how acromegaly affects you and the symptoms, you will be taken more seriously by the doctors. Do not let them 'fob' you off (get rid of you) until you have achieved what you need from that visit. Unfortunately that is the problem with most of us here on this site, this disease has crept up on us slowly and we have managed to convince ourselves that it's because we're getting older, fatter, less fit etc.
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
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JeriTX for ages there I had terrible cracked heels (really deep cracking) and they were sore. And the skin when some was peeled off, it was like I was pulling a few layers off,it was so grose.
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.
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