Acromegaly Support Group

I have heard that your pituatury can be stunned by surgery and the levels even out over time or may never get right, then things have to be controlled with meds. Prolactin levels can be affected by other conditions though so stick close with the blood work and they will be able to diagnose the situation. Is your doctor an endocrinologist? Mine is very fascinated with me ( like I am so interesting) because he has had just like three patient in 30yrs of practice and he is an endo.

yeah, apparently things have a wobble before the straight run. my endo is a bit facinated too. he said that there is only 3 ppl a year in the uk get diagnosed with acromegaly!! i guess we are special x x

My endro is not so fascinated w/ my acro... she talks like it's no big deal and she has other patients or so she claims. I think she kind of specializes in this... Dont get me wrong I think she does think I am special and we get along great and laugh all the time... maybe she has my acro in the right perspective... anyway I feel like we have a collaborative relationship and she does listen... I am a very proactive patient and let he know that I do my homework and get second opions etc.. I have not had an issue w/ the prolactin level but I did have a bit of a rebound effect after surgery now my levels come out a little lower each time..i go in tommorrow to get my latest update...how high is high...do you get copies of the lab work...my shows the ranges... I always ask for a copy..sometimes I get it right from my doctor other times I go to the records office and ask for it...I always tell them it is to show my regualr doctor that way they don't charge me some silly fee...I think it is never a good idea to get upset becasue those stress hormones aren't good for us either... sonnyjoo is right on stay on top of the blood work...mctrjt

the person who takes my blood has told me that the highest she has ever had is +400. i really dont understand what this means but i think i need to find a website that can tell me more about these levels. as i hope i can understand more about the condition then. mctrjt i think getting a copy of your results each time is a brilliant idea! i hope that when i next see my doctor he will understand and let me have copies to look at

Flouncy,
I do not know the laws for release of medical records from GBR, I know that here in the USA they have to realease the records. Many times the doc can't because they do not have access to all the records or xerox or time but the clinic office will have a release of information form. I am not sure how to find out for GBR

With regards to the levels..IGF-1 levels depend on your age and sex and the lab technique that is used. Your doctor should be able to tell you the range. My levels were over 800 I have heard of others that had some as high as 1200. The normal range for age etc is 90-250. although I had another doc say we want it under 200. I'll take under 250. From all I have read the GH level should be below 1. Both figures are important but it is my understanding that the GH one is more suseptible to variability...so it could be high then low then high depending on time of day etc... the best way to measure GH is with an OGTT test. My GH level was 112 when I started...it is now down to a range of 1.5-2...I only had the OGTT test once and it was after 4 months post surgery. mctjt..

thank you so much! im beginning to understand more evryday.

Thanks to all of you for you comments. DEBBIE1253

My GH has been normal but my IGH has been high. I also wanted to know more about how high is too high (like over 200 for cholesterol). But, depending on age, it does vary. I've been to 2 endos now and both say that mine is too high. It was at 377. The injections have brought it down to 242 but except for constant headache I don't have alot of the other acro symptoms. My endo says I may have more symptoms over time if I do not get treatment. I do have a considerable amount of tumor left after the surgery and will talk to a radiation doctor next week. I've just learned about proton treatment for cancer tumors and am going to try to find out more info to see if this type of therapy has been used for pituitary tumors.

Bjos Please keep us informed about the proton treatment when you find out about it. As far as #'s go my HGH is4.4 acording to my doctor it can go up to 5 before it is considered to high. She said it was 60 to start with. We need to find out the different scales that Doctors go by.I'll see what I can find out for us.DEBBIE 1253

Hi Everybody,

Could somebody help here, GH 25 IGI-F 900 on 3 weekly injections of lanreotide, just been upped from 90mg to 120 mg 3rd injection coming up, but everynow and again pain in jaw gets bad, then subsides again, does that mean things are still growing? Thanks