Frustrated with doctor

[Plains]

I went to my endocrinologist yesterday and asked for a cortisol test since I am on 11/2 of prednisone. She told me I have to be completely prednisone free for six weeks before the test “ can” be done. I have read on this site that others have had it. Very frustrating.

[PMRpro Ambassador]

It can be done - but she means to get really reliable results. But frankly - if you are adrenally suppressed you could be quite ill by then! It is possible that the insurance won't approve reimbursement until then since you are in the USA.

Would your PCP do a basic cortisol level? That is cortisol measured on a blood sample taken between 9am and lunchtime and it provides similar information to the synacthen test which must be done in the clinic setting,

[Plains in reply to PMRpro]

thank you for your response. I see my Rheumatologist on May 8th. I will ask him. If he says the same thing, I will ask my PCP.

I feel a little Stanger at times, that’s the reason I wanted them to do the test. I am trying to avoid a real problem.

[Hidden]

You don't need to be off preds for 6 weeks 🙄 You need to be off Hrt for 6 weeks for an accurate result. You'd need to stop prednisolone for 24hrs before.

[PMRpro Ambassador in reply to Hidden]

Not quite - any pred is enough to suppress adrenal function and that is what she is on about

[Elephants2019]

I too had same experience. First asked Rheumatologist about cortisol test, she referred me to pcp, who referred me to an endocrinologist. Had them gone to endocrinologist in Jan 2023, and she looked at me like I was crazy asking for the cortisol test-I explained had wanted to make sure I could continue taper safely. She had the same advice as relayed to you, wait 6 weeks after I was at 0 mg prednisone and referred me back to rheumatologist for taper advise. I am now at 1 mg, been reducing by .5 mg each month. This past Monday, went to another endocrinologist and have not got labs back, but she thinks I might need to increase my prednisone as sodium levels low, bp low, liver enzymes elevated (ast, alt) and she thinks low cortisol could be the problem. Should be hearing from her soon…

[Plains in reply to Elephants2019]

thank you for this information. Sounds like if they did as you asked you would not be where you are now. Good luck with your follow up meeting. Let me know how it goes.,

I am hopeful that my rheumatologist will order it with all the other blood work that he does every three months. I am prepared to insist it… let’s see where it goes. Lol

[PMRpro Ambassador in reply to Elephants2019]

Exactly WHY a test at a low level of pred is worth it - or at least monitoring those parameters in case of signs of adrenal insufficiency. I mean, honestly, do they WANT the patients to collapse before they look to see of the adrenals are at least doing something?

[Plains in reply to PMRpro]

I totally agree with you and that will be my argument with the doctor in the 8th!

[Grammy80]

When I got down to 5mg or so, I asked my rheumatologist about the test and he said he saw no point at this time. Probably because he knew what the results would be.😟I am now on 3mg and will bring it up again in a few months....just to satisfy myself. He and the insurance companies in the States are in the driver's seat. 💞