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.
I'm now in the same boat as Vicsta. Just been told that following the OGTT there is no confirmed evidence of acro. I'm upset and angry yet i had a feeling that this would be the way things played out. I'm awaiting a detailed letter from my endo and have app next weds.
Only people on this site can understand why i'm upset. To everyone else wanting a positive diagnosis of something seems ludicrous I suspect.
I'm just convinced this is what is wrong and don't want to carry on feeling the way I do.
my symptoms building over the last 8 years are joint pains ( 2 lots of orthopaedic surgery on knees and one op to realign very painful large toe joint), bi lateral breast discharge, regular headaches, depression, type 2 diabetes, weight gain, swelling of hands and feet now definately bigger ( can't get a bangle on and countless rings no longer fit), shoes up size and 1/2, skin changes- enlarged pores, strong smelling sebum, massive sweating attacks to face scalp and upper body, drenching night sweats, nose looks wider, brows seem different and deep crease between them, feel like chin more prominent and jaw wider, teeth not spaced but not as tightly packed as before and now wearing down, larger toothmarked tongue which i bite frequently, frequent mouth ulcers, tripping over words, can't sing and felt my voice was croaky and deepening, snore badly ( only ever did if I had a cold), constipation, periods scanty then heavy,thick skin on feet, this year - random muscle pains, terrible fatigue, worsening palpitations/elevated heart rate and joint pain developed in feet, hips, hands. Feel as though my spine is very stiff at times.
Was passed on to a rheumatologist by my orthopaedic consultant who felt that mechanically there was nothing more to be fixed. All imaging showed good joint spaces ( another acro alarm bell in earlier stages). Rheumatologist just said I had an inflammatory arthritis ( sero- negative) basically not positive for rhematoid factor. I started a disease modifying anti-rheumatic drug - Sulfasalazine in May 09 and just quit that in Dec. I gave me no benefit whatsoever.
Never have much obvious joint swelling, heat or redness so was already sceptical of diagnosis then.
Sweating worsened and palpitations more often. BP started to creep up to 135-140 systolic. Always maintained good BP readings before. Saw a locum GP and he first thought lymphoma then endocrine problem. I already believed it was an endocrine issue. I started reading, read Jon Danzig's article in the Independent and BINGO! I was onto something. I asked the rheumy nurse for a referral to the endo. Whenever I state my suspicions i get "well you don't look like you have acromegaly". How can they tell how i've changed??
I know I have, my brother noticed my jawline looked different, and an acromegaly patient at hospital said to me that she could see it in my face. She mentioned it only once I said I was having some GH tests.
I was as I'd put it no oil painting previously but now i feel ugly. I hate photos being taken. I look ok close up but when I catch sight of my reflection at a distance i hate what I see. A scowling, coarse face that is not me. Yes, I'm now a few stone overweight but I'm 5"9 and can carry it. Not everything in life can be attributed to weight gain surely. Now I feel like i'm going mad.....all I wanted was confirmation. To know. To plan ahead.
I'm also in the middle of trying to get a house in a place where flying pigs are more common, transfer uni and finish my nursing, have a 16 yr relationship go from always together to living apart til I can move and him trying to recover from an assault and keep suicidal thoughts at bay. I had hoped that in all this chaos I would at least get an answer about me. I've had to put all my health issues on the back burner so to speak so don't think family are aware just how things can be for me. God this is sounding really moany now but I feel I can offload on here without being percieved as a drama queen. I'm just totally pissed off now. Sorry for the miserable read guys! Please give me some wise words.
love moley
Only people on this site can understand why i'm upset. To everyone else wanting a positive diagnosis of something seems ludicrous I suspect.
I'm just convinced this is what is wrong and don't want to carry on feeling the way I do.
my symptoms building over the last 8 years are joint pains ( 2 lots of orthopaedic surgery on knees and one op to realign very painful large toe joint), bi lateral breast discharge, regular headaches, depression, type 2 diabetes, weight gain, swelling of hands and feet now definately bigger ( can't get a bangle on and countless rings no longer fit), shoes up size and 1/2, skin changes- enlarged pores, strong smelling sebum, massive sweating attacks to face scalp and upper body, drenching night sweats, nose looks wider, brows seem different and deep crease between them, feel like chin more prominent and jaw wider, teeth not spaced but not as tightly packed as before and now wearing down, larger toothmarked tongue which i bite frequently, frequent mouth ulcers, tripping over words, can't sing and felt my voice was croaky and deepening, snore badly ( only ever did if I had a cold), constipation, periods scanty then heavy,thick skin on feet, this year - random muscle pains, terrible fatigue, worsening palpitations/elevated heart rate and joint pain developed in feet, hips, hands. Feel as though my spine is very stiff at times.
Was passed on to a rheumatologist by my orthopaedic consultant who felt that mechanically there was nothing more to be fixed. All imaging showed good joint spaces ( another acro alarm bell in earlier stages). Rheumatologist just said I had an inflammatory arthritis ( sero- negative) basically not positive for rhematoid factor. I started a disease modifying anti-rheumatic drug - Sulfasalazine in May 09 and just quit that in Dec. I gave me no benefit whatsoever.
Never have much obvious joint swelling, heat or redness so was already sceptical of diagnosis then.
Sweating worsened and palpitations more often. BP started to creep up to 135-140 systolic. Always maintained good BP readings before. Saw a locum GP and he first thought lymphoma then endocrine problem. I already believed it was an endocrine issue. I started reading, read Jon Danzig's article in the Independent and BINGO! I was onto something. I asked the rheumy nurse for a referral to the endo. Whenever I state my suspicions i get "well you don't look like you have acromegaly". How can they tell how i've changed??
I know I have, my brother noticed my jawline looked different, and an acromegaly patient at hospital said to me that she could see it in my face. She mentioned it only once I said I was having some GH tests.
I was as I'd put it no oil painting previously but now i feel ugly. I hate photos being taken. I look ok close up but when I catch sight of my reflection at a distance i hate what I see. A scowling, coarse face that is not me. Yes, I'm now a few stone overweight but I'm 5"9 and can carry it. Not everything in life can be attributed to weight gain surely. Now I feel like i'm going mad.....all I wanted was confirmation. To know. To plan ahead.
I'm also in the middle of trying to get a house in a place where flying pigs are more common, transfer uni and finish my nursing, have a 16 yr relationship go from always together to living apart til I can move and him trying to recover from an assault and keep suicidal thoughts at bay. I had hoped that in all this chaos I would at least get an answer about me. I've had to put all my health issues on the back burner so to speak so don't think family are aware just how things can be for me. God this is sounding really moany now but I feel I can offload on here without being percieved as a drama queen. I'm just totally pissed off now. Sorry for the miserable read guys! Please give me some wise words.
love moley
Sorry you're feeling bad. I have no words of wisdom for you but just wanted to let you know that this is the place to moan if you feel like it and that you are among friends. I presume they won't give you an MRI as they think the blood tests don't support acromegaly? It does sound like an endo problem but as the pituitary plays such a major role in how we function, who knows what can happen that would throw it out of whack. Keep pressing the medical professionals for answers/help and don't give up. Thinking of you, Rosie x
Have you got any before you were sick photos for comparison? For me, my head has definitely gotten larger as hats and wigs are tighter or don't fit. The thing is, how can you really see that someone's head is larger in a photo unless the photo has been taken in exactly the same way so that you could measure it or something?