Acromegaly Support Group

Shelly my doctor did not even test my levels until after 3 months,it takes a while for the gh to leave your system.It was 5 months or so before she did another MRI to check for any remaining tumor.At 6 months my levels were still going down.If your IGF1 stays down , after a while you will probally get a OGTT to see if you suppress the gh.I have a really good consensus statement from the Growth Hormone Research Society you should read.You may still be able to download it at jcem.endojournals.org. If it asks for page #s it 3099-3102.The name of it is: Biochemical Assessment and Long_Term Monitoring in Patients with Acromegaly:Statement from a Joint Consensus Conference of The Growth Hormone Research Society and The Pituitary Society.

Hi Debbie

Thanks for the link, I've read it and tried my very hardest to understand it, but a lot of it went over my head. I've cut and pasted the most relevant paragraph relevant to this topic:
"Biochemical evaluation is necessary for the critical assessment of therapeutic outcome. Clinical benefits of surgery may be seen rapidly (within days). Postoperative timing of the evaluation of the GH and IGF-I status is influenced by the patient’s clinical response to surgery and by local practice. This is usually undertaken in conjunction with the evaluation of pituitary function. Early assessment may provide limited information on operative outcome, but formal evaluation should be performed 3 months postoperatively. Stabilization of serum IGF-I levels usually occurs within 3 months after surgery, but may, on rare occasions, be delayed until 12 months. Preoperative medical treatment with long-acting somatostatin analogs may influence the timing of postoperative evaluation because of the prolonged suppressive effect on GH of up to 3 months. Subsequent to the postoperative assessment, further life-long evaluation is mandatory".

I think each center may 'adopt' their own set of criteria while following these guidelines (for instance timing following surgery, nb of tests, etc.). One thing is for sure in all cases they are quite careful about using the word CURED. I just had news that my igf is within normal range - which was pretty good news to me. They didn't even refer to gh levels. They still are waiting for the post-op MRI and have me scheduled for new blood test in 4 months. They seem quite happy with the results but made it very clear to me that I will need lifelong follow-up and they did mention the possibility of reoccurence.

Hi Shelley,

Three months or so after my op, I was told that my IGF-1 and GH levels were too high to be considered cured. Although I had suspected that this would the case, I must admit that I was a bit disappointed.

In my case, my IGF1 and GH are still too high (and I had a microadenoma, just to prove that size isn't always a sign of potency :-) ). My GH was not that high (in acromegalic terms) but my IGF-1 was really quite high. Both have come down considerably, but not far enough to be 'cured' .

A lot of the problem now with defining 'cure' rates is that what used to be deemed a cure is no longer. They used to consider you 'cured' or at least 'under control' if you had GH below a certain level. This level was used as they couldn't reliably measure anything lower. Well, the testing has got more sensitive, and now they can.

What we 'disappointed' people need to be thankful for is that many people who were previously deemed to be 'cured' were in fact still suffering from acromegaly. Now that the definition is a lot more tightly defined, and meaningful tests can be made for lower levels, we are being looked at more carefully. I would rather be a drug-treated acromegalic whose TSA did not cure me totally, than be told I was 'cured' and be drug-free but continue feeling lousy for the rest of my life.

I think it most honest to say that an acromegalic is almost never cured, but under control for the time being, either with or without drugs.

Now, 7 months after my op, I have just (yesterday) done an octreotide suppression test (7 hour fasting blood test series to see if IGF/GH is suppressed sufficiently). Assuming this is the case (as it was before surgery), I will start on lanreotide some time soon. This should hopefully take me closer to having my hormone levels where they should be.

John

I am confused about this octreotide suppression test...I have never heard of it...is that the same as an oral glucose supression test??? This is where they take a blood sample and measure my GH and then I drink something and they test my blood every half hour for 2 hours...my GH levels is suppose to go to below 1. (I got as low as 1.8 but becasue my IGF-1 fell just inside the "normal range" ..they ae not doing anything..i have blood work coming up and i requested the ogtt but the endo said lets wait and see....so I am curios about the test you mentioned?

Yes I would also like to know if these tests are the same, does anyone have any information? I think they could be the same but would appreciate some feedback Thanks

John you are certianly right on when you say size is no indication of the potency. Thats what I was trying to get over in some of my discussions.No matter how small or large they cause most of the same problems for everyone.The tumors have a mind of their own and will do whatever they please.Thats why its called "Acromonster".Do you know if they got all your tumor during surgury?What is an octreotide ST? and does octreotide reduce the size of the tumor or help get rid of the gh?Just curious I don't know much about octreotide.Thanks

Debbie

The post-op MRI showed what they though to be remnant of tumour, so , no, they didn't get it all.

The octreotide suppression test is the test that my centre (Oxford, UK) uses to check whether your GH levels respond to octreotide (Sandostatin). See http://www.endocrine-abstracts.org...

I had one done before my op, and I had another done just last week (7 months post-op) to check that I still responded.

They use this before surgery to see if you are likely to respond to the drug (as not all people do), and afterwards to see if, with less of a tumour, you still respond.

I responded to the drug before, and await to hear if I still do. Assuming I do, I will be started on a somatostatin analogue. In my case, this will be lanreotide (Somatuline) rather than octreotide (Sandostatin), as the lanreotide is easier to administer (smaller needle, no deep muscle injection, no reconstitution, etc)

John