1. < Polymyalgia Rheumatica (PMR)
Profile picture for potterywoman

Results of cortisol testing negative

Posted by potterywoman @potterywoman, 2 days ago

The cortisol level tests ordered by my endocrinologist came back negative, although the ACTH was on the border. I am still going with the diagnosis my rheumatologist made of secondary adrenal insufficiency. He based it on my symptoms (pretty much textbook) and had bumped me up from 2mg to combat withdrawal to 5mg. When I had the tests yesterday, I had been on the 5 mg a few days and had only postponed that morning's dose as per my endo's instructions. Still learning. For the most part, dizziness has resolved but with some fluctuations where I feel lightheaded. Any experience you have had with symptoms and management tips will continue to be much appreciated.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for potterywoman
potterywoman | @potterywoman | 1 day ago
In reply to @dadcue "@potterywoman It was a sad state of affairs when I learned about some of this stuff...." + (show)
Profile picture for Mike @dadcue

@potterywoman

It was a sad state of affairs when I learned about some of this stuff. My rheumatologist didn't want to refer me to an endocrinologist. My primary care doctor did all the work to "investigate" what was happening because of my long term prednisone use. I was referred to an endocrinologist the first when I was still on 10 mg of prednisone so the endocrinologist referred me back to my rheumatologist to see if "something else" could be done to reduce my prednisone dose. Something else turned out to be Actemra but that is another story.

The endocrinologist gave me an open invitation to come back whenever I could maintain a prednisone dose of 3 mg. I felt like that was going to be impossible so I planned on taking prednisone for the rest of my life. After Actemra was started, it was "relatively easy" for me to taper down to 3 mg of prednisone. My primary care doctor ordered a morning cortisol level which was low so I was referred back to the endocrinologist for the second time. My primary care doctor only referred me because the endocrinologist told me to come back to see her when I was on 3 mg of prednisone. The endocrinologist was surprised to see me again but given the circumstances she was not at all surprised by my low cortisol level.

At this juncture, all my doctors including an ophthalmologist were talking to each other. Remarkably, about a year later, I was completely off prednisone for the first time in decades!

I have set off some alarms in emergency rooms and intensive care units during my time on prednisone. The endocrinologist remembered me from about 5 years earlier when I had my knee replacements. I recognized her because she watched me like a hawk for about 8 hours after surgery. She wasn't part of the surgical team and only said she was with the medical management team.

Jump to this post

@dadcue

REPLY
Profile picture for jabrown0407
jabrown0407 | @jabrown0407 | 22 hours ago
In reply to @potterywoman "@pmrsuzie My rheumatologist recommended the change from 2mg to 5mg. Although the vertigo is gone, I..." + (show)
Profile picture for potterywoman @potterywoman

@pmrsuzie My rheumatologist recommended the change from 2mg to 5mg. Although the vertigo is gone, I still feel PMR. I'm going to ask his advice. My endocrinologist says I can go to 7.5 without damaging my bones.

Jump to this post

@potterywoman My endo has said anything under 10 is low enough to not cause bone problems. She also says any cortisol test while on any level of prednisone is not reliable. It may be the best available but she says it is just not able to reflect what your body is doing vs. what the prednisone is contributing. That made sense to me. I wish you success in tapering down successfully. I would possibly alternate high/low dose for a week of two before moving to a lower dose to see if that eases the taper process for you. What works for you is the best approach.
My Rheumy says she has several patients they cannot get below 2mg prednisone.

REPLY
Profile picture for potterywoman
potterywoman | @potterywoman | 18 hours ago

I am not concerned about the cortisol testing because I think my endocrinologist just did it to cover his bases. He said 7.5 mg prednisone, not 10mg. I have osteoporosis due to a long undiagnosed benign tumor on my parathyroid gland that quietly siphoned calcium from my bones, so I see him for follow-up and monitoring of this. It is a strange type of osteoporosis in that following removal of the tumor and affeced gland(s), the body rebuilds natural bone. Sadly it was probably the stress of the surgery and recovery that pushed me into PMR, so I wound up having to take Fosamax, which is generally contraindicated in this type of osteoporosis. Through PT, physical activity and diet, I managed to overcome the challenges and am now osteopenic, not severely osteoporotic, in my spine. But it is like walking a tightrope managing both conditions at once. My rheumatologist ignored the cortisol testing, and my endocrinologist only wanted to do it to "guide the taper" which he is not managing anyway. I just consider it one of those little games you have to play.

REPLY
Profile picture for Mike
Mike | @dadcue | 16 hours ago

Trying to taper off prednisone when your adrenals are suppressed is a frustrating game of running in circles. You need to take less prednisone for adrenal recovery in order for your cortisol level to improve. Then you need to take more prednisone to control your inflammation levels because your cortisol level isn't adequate to regulate inflammation.

It is a bit like medical care in general when you start out with one problem and get treated. Then you have to correct the problems that the medical treatment causes. You go round and round until you wind up with the same original problem because there isn't a cure.

REPLY
Please sign in or register to post a reply.