Acromegaly that is difficult to determine

Listen to a discussion of Acromegaly cases that, for a variety of clinical and biochemical reasons, are difficult to discern.  Learn about people with definite acromegaly but negative MRI studies.   Why are some microadenomas not seen on MRI or we see cases of clear-cut acromegaly with normal levels of IGF-1? – What is micro-megaly?  It’s all here.

 

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6 COMMENTS

  1. I have acromegaly. The tumour was removed but was not successful. I now have somatuline autogel injections 6 weekly. My consultant asked if I would consider stopping treatment. My igf levels are at the high end of normal. The remaining tumour has not grown. I can never get a definitive answer as to why they want me to stop. The cynic in me thinks it is cost.

    • I refused Somatuline Depot – it came special order and it’s still in my fridge – cost for 1 shot appears to be in excess of $7,000.00. I will quite likely not use it and I am not sure what to do with it. I only paid $3.70 for it with Medicare.

  2. Angela, I would consult another specialist. There are other medications! Best case is to get your IGF-1 in the lower to middle end of the range.

  3. Very informative podcast – thank you. My story is: I had a tumor removed in August last year (2017) – It had been around for 35 years or so and was only diagnosed in 2016. Unfortunately it caught up with me in January 2017 and I had a heart attack. After the resection, my Growth Hormone has returned to normal, but my IGF-1 is still too high, (218). However, it has come down a lot and is still coming down. It seems, it is not reducing fast enough for my endocrinologist and he prescribed a monthly Samatuline Depot injection. He said they would administer the first shot in the office to show me how and after that I could do it myself at home. He had obviously never prescribed this drug before because (as you probably know) it is impossible to give it to yourself and it appears to be a very painful process with myriad side effects. I have refused it and will track the IGF-1 every 3 months and have an annual MRI. At the last one I had in February this year (2018), there was no sign of a tumor. I suspect my tumor had something to do with the contraceptive pill (I have had prolactin problems as well) and possibly milk. I have been vegetarian for most of my life (I am 75), and since the heart attack I have been completely vegan. I have a feeling I have lived this long because of my plant-based diet. Has anyone done a study of Acromegaly and diet?

  4. Thank you, Dr. Blevins. A couple months ago, I noticed that my rings no longer fit, prompting my endocrinologist to test my IGF-1. Twice on that particular (less reliable) assay, my IGF-1 levels were high. . This led to the discovery of a 5mm microadenoma close to the pituitary stalk. Twice, the lab incorrectly performed the OGTT, but nevertheless found fasting GH levels between 3-5 ng/ml. In addition, However, on the LC/MS IGF-1 assay, my IGF-1 was in the upper end of normal (but still, normal).

    On two successful OGTTs, my results were contradictory. On the first, my GH paradoxically increased to 2.75 at 2 hours. Using the same assay, the result two weeks later was 0.8 at 2 hours. Have you seen contradictory growth hormone suppression test results? Thank you!

  5. I have Acromegaly. I was getting monthly injections of Sandostatin Lar, until very recently. My endocrinologist stopped my injections, due to the fact that I have been suffering from some upper abdominal pain, after many tests found no results. He wants to put me on a “medication holiday”. Sandostatin can cause such pain. We will be monitoring my IGF-1 levels, however I am somewhat anxious to see if the residual tumor I do have will re-grow, as I was also told I would be on Sandostatin Lar for the rest of my life, when i started my monthy injections.

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