Cortisol test results.

[Karenjaninaz]

I was sent to endocrinologist to evaluate frequent low blood sugar readings. I add my sister and I have this many years but tapering prednisone seems to aggravate the problem. I was ordered tests for pancreatic function as well. I was instructed to avoid prednisone for 48 hours but only lasted 31 hours. I felt very unwell at 5 AM before the 6am test. I was afraid I might get dizzy and fall. I took 5 mgm of prednisone on an empty stomach. Despite this the endocrinologist said the test result showed decent cortisol levels. My ACTH output was good. All insulin type tests were normal. He recommended seeing a specialist in NY because my case is “complex”.After discussing this with my GP who is also board certified in rheumatology we decided no further investigation is warranted. The endocrine doctor has no experience with PMR patients. I add this endocrinologist said, before testing , after this amount of time on prednisone my adrenal glands would be atrophied, I had a CT scan for another issue and my glands are NOT “atrophied.”

[PMRpro Ambassador]

I'm a bit taken aback an endo told a long term pred patient to take no pred for 48 hours without giving them hydrocortisone instead. Lots of people get off pred and their adrenal glands are fine after more than 5 years. He's led a sheltered life

[Karenjaninaz in reply to PMRpro]

Yes. My GP agreed with that.

[Hidden]

Do you feel sick or out of balance and how low was your sugar? If not to extreem consider the option that you just have no problem, or even that you are better than an average person. Going blind on min and max reference values on lab results is a slippery path if you don’t realize that those values for blood sugar are constantly upgraded as most people have more and more sugar problems and it is based on averages overtime in a lab. A mistake many doctors make as well, especially when you are on Keto (low carb). The diabetes organization in my country is even advising not to go Keto. Argument, when you are on blood sugar lowering medication Keto is very dangerous, as your blood sugar will drop so fast that it can mess up with the medication. They even don’t think about the scenario of closely monitoring and lowering or getting rid of the medication. Being health is apparently not the norm anymore, but sick with medication is the new norm. Sad.

[Karenjaninaz in reply to Hidden]

Gert, I am not a diabetic and my sister and I tend to have low sugar between meals most of our adult life. My sugar went to 42(!) If we eat a reasonable snack in between meals we feel ok. In my case I have IBS and lactose intolerance; that makes eating properly a challenge. Paleo? Never tried it but I follow loosely a Mediterranean eating style. The problem with that is it doesn’t have enough fat to prevent sudden blood sugar drops especially when trying to taper at low pred doses.

I add I do feel rather terrible when my sugar is low- scary.

[Hidden in reply to Karenjaninaz]

That is low. If you had it also when you were not on steroids and you sister had this as well,it might be genetically.

[Karenjaninaz in reply to Hidden]

Way before PMR my blood sugar would sometimes be ~ 60-69 taken between meals. It seems the adrenal insufficiency, while tapering, seems to have enhanced that issue. Interestingly, when I had the fasting blood draw resulting in the 42 reading I felt OK at 6am. The endocrinologist also tested me for pancreatic and insulin antibody issues-all normal. These were sent to a special lab. I now manage well with eating carefully and my sugar tests are in normal range.

[PMRpro Ambassador]

I agree:

"Patients taking prednisone may have falsely increased cortisol levels because prednisone is converted to prednisolone after ingestion and prednisolone has a 41% cross-reactivity."

mayocliniclabs.com/test-cat...

[Karenjaninaz in reply to PMRpro]

Yes, I read this too. This endocrinologist has no experience with PMR.

[PMRpro Ambassador in reply to Karenjaninaz]

I don't think that is the critical point - you had taken pred at 5am hadn't you? In theory, if they took the blood at 6am that hadn't worked through the system (prednisone must be processed in the liver to produce the active prednisolone) and that can take up to 2 hours but on an empty stomach that could have been speeded up). It could have been cross-reacting with the cortisol assay making it look better than it really was. Nor would it show if you get spike of cortisol when under stress which is a major factor - your basal cortisol may be enough to function but not enough to deal with stress.