Acromegaly Support Group

The doctor who would generally diagnose Acro is an Endocrinologist, however any doctor can order the IGF1. From what I have learned, the IGF1 would be raised if you have Acro. I dont think there are too many false negatives. Did you ask your doc for a copy of the lab report? Has he checked for Rheumatoid Arthritis? I have many symtoms as well and have not been diagnosed, I'm still waiting to find out the results of my IGF1. I am prepared to hear that I have the symptoms but do not have Acro, my symptoms can be attributed to probably hundreds of miscellaneous rare illnesses. I have had the major ones ruled out, and will probaly stop searching for answers for awhile, if the Endo is not able to get to the bottom of it.
Hope this helps a little, I know it's frustrating searching for answers. Take care, Annie

I did put a reply on your journal.I saw a hormone specalist before an Encro and he was a God if you can see one of them but as I put in a reply to your journal do not give up.

Definitely an endocrinologist.

My acromegaly symptoms were subtle. Felt tired, blood pressure up, no increase in shoe size (though feet had swollen slightly), maybe some thickening of fingers, only slight gapping in teeth (which I didn't notice till diagnosis), a few skin tags, sleep disturbance, some change in bite but not much, slight fattening of nose but you couldn't really tell. All of these symptoms were subtle and made me an interesting non-textbook case for the med students who came round to see me in the hospital!

For reference, my IGF-1 was high but my GH "not that high". So saying, two months after surgery I feel so much better!

The oral glucose tolerance test is the gold standard test for acromegaly. It'll take a morning of your life but you should know for sure after that whether you have acromegaly or not.

John

John makes a good point. Maybe if you visit an endocrinologist they can find something by doing the Oral Glucose Tolerance Test. Did you see a copy of that IGF-1 report your doctor mentioned ?

Thanks to all of you for your replies.I am new to this so I hope I am sending this to the right place.I did not see a copy of my lab results,the nurse called me on the phone and she told me my IGF-1 was not high.I asked if it was in the normal range she said it was a little low but she did not know that meant.When I asked the doctor to do the test he did not know what IGF-1 was.He had to have the nurse look it up so he would know what to put on the order.I could tell by the way he acted that he wasnt very familiar with acromegaly,he just looked at me funny when I brought it up.

It's so annoying that Dr.s give this kind od atitude, like your crazy...you probably know more than he does about it just from a little bit of research...and Dr.s shouldnt make you feel that way. It's always good to look at the copy of all reports yourself, just by the rare chance, that maybe he ordered GH not igf1. Which would be a whole different story. As I said, I am no expert on any of this, but the others here really are. Maybe you should ask to see an endocrinologist based on your unusual symptoms, and then he/she would be able to do the more accurate test? Oral glucose tolerance tests your GH after being exposed to high levels of sugar...(it's not just the average glucose tolerance test.) So if you asked for this from your primary, who doesnt know much on the subject, he may not order the right thing. Also, there are a few other hormonal disturbances which could account for some of your symptoms, so you would get a broader look at the picture. Everyone here is really helpful and wonderful, hopefully they/we will help you get through this to a proper diagnosis, whatever is going on.

I just want to say an Encro is good but I felt the hormone specalist he was really good and not to be overlooked if you are having trouble say getting anywhere.He diagnozed myself and he went out of his way going to the Encro and saying You must do the best for this lady(WHAT A GOD).But also I do the best for myself listen to what he says but if I feel somethings not right I go into one he throws his dictaphone round lol and my doctor puts logical on my notes and then I kick acromonsters ass ROFLMAO.

I also wanted to say I agree with the others the glucose test was the one that caught the acromonster out.I wish you well and keep us posted :)and keep at them JJx

Yep, the endocrinologist will be the person to order the Oral Glucose Tolerance Test (OGTT). It involves a before-breakfast start, drinking some glucose solution, then a series of blood taking to late morning. At the end of the blood tests you may finally eat!

The test will measure your GH over a series of several hours. If you have no acromegaly, you will suppress GH in response to the glucose.

Mine was done and supervised by a very friendly endocrine nurse.

John

ditto al lthese folks are giving you great advice...I cannot resist adding my two...you are at the start of a long process..ask for copies of your records...keep a binder documenting all your efforts....get suggestions for Endo's in your area......read old jounrals on here...
this is a great group!