A few new questions

[Galatians221]

First off, is extreme weight gain normal with Acromegaly? I have read all of the symptoms but my weight gain more closely resembles Cushings. However, I'm getting gaps in my teeth, my tongue is causing me to slur some words, my head has gotten huge (along with everything else) and my legs and arms are losing strength and causing me great pain. I have no energy and am getting more and more depressed. So, I'm wondering if being heavy is associated with Acromegaly or is it just associated with Cushings since I seem to have symptoms of both?

Secondly, is my IGF-1 reading of 500 unusually high or pretty common for someone with Acromegaly? My MRI came out showing no tumor in my pituitary and I'm looking for a new doctor specializing in pituitary. Any thoughts on those two questions?

Thanks.

[rumpled]

Hello...
You did not give the lab range on your igf-1 but on my lab, that is pretty high. Gaps in the teeth, large tongue, enlargement of hands, head, feet etc is pretty standard FOR THE ADVANCED STAGES. In other words, any 6 year old at this point should be able to diagnose you so it is a bit annoying that the doctors are not taking you seriously. Famous people with acromegaly are Andre the Giant (he was heavy) and the world's tallest woman, Sandy Allen. They have distinctive voices even from the disease. A lot of time, in the past, a dentist would be the first to notice for the changes in the jaw and teeth.

Pituitary tumors come in all sizes. Size does not matter. Also, tumors are sometimes rarely located elsewhere in the body. You need to get to a better doctor. Only two conditions of the pituitary are known to be eventually deadly - acromegaly and cushing's - so you really need to get help before the symptoms shut you down. Maybe even NIH is running a study so you can contact them if your doctor refers you but you need to get help. Now.


http://www.endocrine.niddk.nih.gov/pubs/acro/acro.htm
http://www.acromegaly.org/
http://www.emedicine.com/med/topic27.htm

[Galatians221]

Hello...
You did not give the lab range on your igf-1 but on my lab, that is pretty high. Gaps in the teeth, large tongue, enlargement of hands, head, feet etc is pretty standard FOR THE ADVANCED STAGES. In other words, any 6 year old at this point should be able to diagnose you so it is a bit annoying that the doctors are not taking you seriously. Famous people with acromegaly are Andre the Giant (he was heavy) and the world's tallest woman, Sandy Allen. They have distinctive voices even from the disease. A lot of time, in the past, a dentist would be the first to notice for the changes in the jaw and teeth.

Pituitary tumors come in all sizes. Size does not matter. Also, tumors are sometimes rarely located elsewhere in the body. You need to get to a better doctor. Only two conditions of the pituitary are known to be eventually deadly - acromegaly and cushing's - so you really need to get help before the symptoms shut you down. Maybe even NIH is running a study so you can contact them if your doctor refers you but you need to get help. Now.


http://www.endocrine.niddk.nih.gov/pubs/acro/acro.htm
http://www.acromegaly.org/
http://www.emedicine.com/med/topic27.htm

The range on my IGF-1 was 100-268 and it came in at 500. I still don't know if weight gain is congruent with Acromegaly. When I left my doctor a couple of weeks ago, he told me that my IGF-1 reading was not consistent with my symptoms.

[rumpled]

All the symptoms you have listed sound very constistent with acromegaly. Did you look at the links I gave you? Find another doctor. I had to go to over 10 before I got help.
Even recently, in my endo's office, I overheard the other doctor give incorrect instructions for a dexamethasone supression test (wrong time to take the pill, wrong time to show up at the lab, no advice to be fasting) as well as to tell the person to show up for the results in 6 months which is far too long if the person has cushing's - so the person in effect got a lousy ineffective screening test, a test that is not useful for screening anyway (should have been multiple 24 hour urinary free cortisol tests) and too long a period to wait for someone suspected to be seriously ill. It happens all the time.

Andre the giant had acromegaly and was large. Besides, not everyone has to have every symptom.

[Galatians221]

Yes I did look at them and go there often; thank you. It's just that I never read about obesity being associated with Acromegaly. I have the classic symptoms of Cushings along with Acromegaly and they seem to be opposite afflictions; one due to too much HG and the other due to too little. I can't have both and I never see anything about Acromegaly and obesity. I met Andre or at least walked next to him at the St. Louis airport and he had huge bones and did have fat on him but his frame was huge. I am trying to find a new doctor and have emailed two of them at Washington University School of Medicine in St. Louis where I live but due to the holidays I've not heard back. My current endo is taking the holidays off and I'm going to ask for all of my test results, find out who the neurosurgeon is that he forwarded my results to and due in large part to your advice I'm going to aggressively go after this. I want a complete battery of blood work done on both my pituitary and my adrenals. I've emailed both an Neuroopthalmologist and a Neuroendocrinologist and hope to hear back from them soon. I'm not due to go back to my current endo for four months and that's unacceptable. I want to be cured or on my way in four months and am tired of being patient about this. I'd prefer to be admitted to the hospital for a few days and get everything done rather than continue this nonsense. If necessary I'll go up to the Mayo Clinic or whereever but Barnes Hospital in St. Louis is supposed to have an award winning endocrinology program. Thanks again for your help.

[rumpled]

You should not be discounted for one symptom or even several. I had Cushing's and did not have high blood pressure, diabetes or some of the other "classic" symptoms. In fact, I did not even gain weight when in retrospect, we now know the tumor was found. I know of others with pituitary tumors (even acromegaly) who I met through meetings and we often speak of the travails of diagnosis when one is not classic - but the goal is to get diagnosed before one looks like the picture. Your blood test is simply high enough to get you attention so you need to get to another doctor. Please get to one soon. And please talk to the doctor about your concerns about having multiple disroders - while they may poohpooh you - well, it has happened. I had two separate and distinct pituitary disorders - cushing's disease and prolactinoma which most said was not possible. I have a friend who was the same - we call each other the tumor twins.