First meeting with endocrinologist

I think a simple statement saying that you would like to have a morning cortisol level checked might work better than asking. I don't think you need to be overly assertive and you might add a "please" at the end of the statement.

Be prepared to answer questions about why you would like a morning cortisol level checked. There are many valid reasons for checking a morning cortisol level but some endocrinologists will say it isn't necessary if you don't have symptoms of adrenal insufficiency. In that case you focus on how difficult it has been to taper off Prednisone and why you wish to be off Prednisone.

@dadcue Thank you so much, you are an amazing resource - and so responsive! I really appreciate you.

Did you have a bone density test previous to taking prednisone? Or shortly after you started. This information may be useful when you talk with your endocrinologist. One rheumatologist I had told me to keep all of my blood test records. Not sure if yours are all electronic or if they are not all doctors use the same electronics platform. Hopefully they can get to the root of your problem.

I saw an endocrinologist as well as a rheumatologist because I was also diagnosed with Hashimotos about the same time as PMR. The Endo told me he couldn't check my adrenals (cortisol) until I was tapered off the prednisone. Makes sense as cortisol is supressed while on Prednisone as I understand it. I was curious if my adrenals kicked back in after tapering off the prednisone. Fortunatley mine seemed to be functioning fine

@joyl263

There is some debate about needing to to be completely off Prednisone in order to have a morning cortisol level checked. My endocrinologist said being on 3 mg or less of Prednisone for an "extended period of time" was a low enough dose to "screen" for a return of my adrenal function. I also had to be able to not take any Prednisone for 48 hours prior to checking my cortisol level.

My endocrinologist "expected" a low cortisol level because I was on Prednisone for 12 years. However, she also thought 3 mg of Prednisone or less would be a low enough dose to see if my adrenals had started to produce any cortisol again. While complete cessation of steroids is ideal, tapering to a low dose (≤ 3 mg prednisone) and holding it for 24–48 hours is a standard protocol to screen for adrenal functioning while minimizing the risk of an adrenal crisis.

There isn't any consensus of opinion about the proper way to discontinue Prednisone after long term use.
https://bmjopen.bmj.com/content/15/12/e107269
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At least it is recognized that the normalization of the HPA axis and the ability of the adrenals to produce cortisol again is a significant barrier to tapering off Prednisone. It seems that it is easier to say the patient had a flare of their disease instead of a low cortisol level causing symptoms. The function of cortisol in the body is to "regulate inflammation" so it is no wonder we flare. However, the reported symptoms could either be a disease flare or they could be interpreted as attributable to adrenal insufficiency. Symptoms can also be a combination of disease flare and adrenal insufficiency.

It was also interesting when my endocrinologist said 3 mg of Prednisone was a very low dose. When my cortisol level was "adequate" and I didn't need Prednisone any longer to control PMR then I could simply stop taking Prednisone. In other words ... as long as PMR was controlled AND my cortisol level was normal then I could discontinue Prednisone without doing a prolonged taper. My symptoms of adrenal insufficiency were also evaluated before I discontinued Prednisone.

@grumpa I did indeed and that is the primary reason for meeting with the endocrinologist. All this time on steroids has definitely impacted my bones! I have been on Fosomax for years, but that is no longer cutting it so we need to figure out alternatives.
I am lucky to have a non-profit health system available to me here in Portland OR that has coordinated electronic medical records.

@pdxmac Good to hear. I hope the Tyenne is effective and you can successfully get off of steroids.

This topic is of interest to me and I can't get a clear idea of whether to schedule with my endocrinologist or not. I only have one adrenal gland- One gland was surgically removed in 2003 because it had a large benign cyst on it. When I mention it to my rheumotologist she doesn't seemed concerned. I am not sure I know symptoms that would lead me to make an appointment. When I tapered from 3 to 2mg. of prednisone there were a couple of days where I could hardly stay awake. I ask my dermatologist if that was due to tapering and she said no. My confidence in this doctor isn't real high right now. I may write about that later. My question should I be off prednisone before seeing a endocrinologist? What symptoms would be a concern as far as cortisol levels?

@csimmonds

My rheumatologist didn't want to refer me to an endocrinologist when I still needed 10 mg of prednisone for PMR. However, I got a referral and I visited with an endocrinologist who said there was nothing she could do. We had a pleasant conversation about my 12 years of being on prednisone. At the end of my visit the endocrinologist said I should come back to see her if I ever got down to 3 mg. The endocrinologist referred me back to my rheumatologist to see if there was anything else my rheumatologist could do to get me on a lower dose of prednisone.

A couple of years later I started Actemra. I was able to taper down to 3 mg of prednisone. It didn't seem like I needed prednisone anymore because I didn't have a flare of PMR. I was "symptomatic" but it didn't seem like PMR was the problem.

I told my primary care doctor about how awful I felt and we discussed my symptoms. I reminded my primary care doctor that the endocrinologist wanted to see me again if I ever got down to 3 mg of prednisone. I don't know exactly why my primary care doctor ordered a morning cortisol level but the result of my cortisol level created a lot of action. I was told that I shouldn't taper my prednisone dose any lower than 3 mg until I could be seen by the endocrinologist again.

My second visit with the endocrinologist was about 2 years after my first visit. My morning cortisol level was rechecked along with an ACTH level because both were needed to confirm prednisone induced adrenal insufficiency. I remember that my ACTH level was normal but my cortisol level was still low.

According to artificial intelligence:
"A normal ACTH level alongside low morning cortisol (often < 10 µg/dL or
< 300 nmol/L) can indicate that the hypothalamus-pituitary axis is trying, but failing, to stimulate the adrenal glands, a common finding during recovery from steroid-induced adrenal insufficiency. This suggests the pituitary is functioning, but the adrenals remain suppressed by previous high-dose prednisone, meaning the body is still recovering from chronic suppression."
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There still wasn't much the endocrinologist could do except to tell me to stay on 3 mg and wait until my cortisol level improved. I remember the endocrinologist telling me that a low cortisol level was better than none. She was optimistic that my cortisol level would improve with time. About 6 months later my cortisol level improved and we discussed stopping prednisone but that would be the beginning of another long story.

I routinely see an endocrinologist 5 years after discontinuing Prednisone for metabolic abnormalities from long term prednisone use. My cortisol level is normal again but my endocrinologist says some of my metabolic abnormalities might be irreversible.

@dadcue Thank you for your response. I am currently taking 2 mg. prednisone. My rheumatologist told be I no longer have PMR because I have had it for 2 years and that is the length of time for it (actually she is wrong I have only had it a year) This surprised me and I asked how she could tell. She said it is because I could raise my hands over my head and get up out of a chair. I have always been able to--with pain. So I inquired as to why I still had the same symptoms. She said--'probably arthritis." That is all she had to say. I am still pondering the appointment and thinking of changes of provider. She showed very little interest in my well being no matter what the diagnosis. Have you ever heard of PMR just being for 2 years--for everyone. My body tells me I still have it but I guess I have a year to convince it otherwise.