Update on flare (or lack there of)

[luv2read]

I got in to see my doctor this morning and it was not as I was expecting. I thought I had text book flare up symptoms, but he said no, which he based on my CRP levels. I asked if they could be lagging behind and he said if I started having these symptoms last Wednesday, that my levels had plenty of time to go up if this was a flare. I'm not sure what to do. I have been feeling pretty good these last few days, but I guess my suspicions were wrong. I asked if he could run a blood test to check my adrenal glands, (maybe that's what's happening), and he said I would have to go to my regular doctor to get that drawn. That was frustrating because I was set to go in this morning before my appointment time to get my blood drawn for him, yet he would not add that test. I'm confused. I have not seen my regular doctor in forever due to the fact that the only care I have needed is because of my GCA. I'm confused and a little hurt that he denied my request. Am I wrong? Is it normal for my rheumatologist to refuse this test. I just thought that since he has been my "main" doctor for everything lately, he would be the one to do it.

[SheffieldJane]

The Synacthen Test for your Adrenal function is a little more complex than a straightforward blood test. I have always gone to the Endocrinologist for mine. I don’t take the Prednisalone on that day until after the test is over. Blood is taken, then I am injected with an Adrenal stimulating substance. I wait 30 minutes and blood is taken again. Using the initial base figure as a comparator they are able to measure whether my Adrenal glands are capable of working. Depending on the result, ongoing treatment maybe indicated, such as Hydrocortisone.As you know I guess, symptoms are a more accurate indicator of the state of your disease than blood test results. Good to see you taking charge, just sorry that the doctor couldn’t meet your energy. Keep plugging away.

[luv2read in reply to SheffieldJane]

I was not aware of this test being more complex than a simple drawing of blood. However, I would have more than happy to withhold my prednisone for a day or two and hang around the lab for a second drawing. I am going to call my primary care physician to see if she could set this up.

[SheffieldJane in reply to luv2read]

Good luck! Adrenal insufficiency can become a medical emergency, you are right to question his decision.

[PMRpro Ambassador]

It is something we have seen a lot with US doctors - very jobsworth about who does what. Even though the return of adrenal function is part of the care for the GCA so I would say it comes in his remit. He is wrong about the CRP - I know what he is saying fits with the theory, the practice doesn't always though. Symptoms should always trump blood results. But you are stuck with his opinion.

Is this rheumy at the Mayo where you got your diagnosis?

[luv2read in reply to PMRpro]

Thanks for your response. I knew that he was wrong about just basing my symptoms on what my lab work showed. You are 100% correct that symptoms should trump test results. I wish i could have used that as a defense, but I didn't think to say that. My doctor is not the rheumatologist that I saw at Mayo. He is a local physician here in town.

[PMRpro Ambassador in reply to luv2read]

Can you contact the Mayo to ask for advice?

[luv2read in reply to PMRpro]

I'm sure I can. I did receive orders from my GP to get my cortisol checked. In her message she did not give me any instructions to fast or withhold my prednisone. I have another message into her to see what I need to do.

[PMRpro Ambassador in reply to luv2read]

Usually that means take your pred the day before but not before the blood is taken which needs to be at 9am for a basal cortisol - you need 24 hours pred-free. Can't remember about fasting - but our local hospital has a notice up saying that ALL tests should be assumed to be done fasting unless there is a very good reason not to.

[luv2read]

I have been on prednisone since November 2018. I had gotten down to 5 mgs and experienced some signs of adrenal insufficiency but powered through those, (or so I thought). I am going to contact my PCP to see if she will set me up with a Synacthen test.