Spoken to Doc this morning. Had blood test 2 days ago and told my inflammatory markers are rock bottom. And I must try to get off the steroids because she doesn’t think I have PMR any more. I am now trying 3 1/2mg on the Dan’s.
I ask if I could have a synacthen test and was told no. Cortisol levels too low for test????
She just reiterated get off steroids . I said I am not rushing as not worth having a flare.
Can I get a private test and how do I go about it please
Another one who doesn't understand...of course your markers are low, just shows steroids are doing what they should, not necessarily that PMR has gone. She might think your PMR is gone, but she doesn't know!
Why do you want a Synacthen test.....what makes you think your adrenals aren't working? Do you know what you cortisol levels are?
Sure you can get a private test, just look online...
How would I know what my cortisol levels are. Never really told very much by GP. Isn’t the test proof if working or not . When I asked for a copy of my Dexa scan results. GP said what do you want that for????
If you aren't or haven't been suffering from fatigue, lightheadedness, nausea etc (under doses of about 7mg Pred) then I would assume that your adrenals are functioning, maybe not at 100% but certainly enough to be okay. It can take some time after being off steroids completely for them to get back to 100% function.
Most people don't have a synacthen test as a matter of course unless they have issues - I certainly didn't...
Have a look at this post for general info on adrenals...
Short answer is because they are mine.
Now ask her for a 9am cortisol test and see what the re-action is.
Have you thought about changing your GP?
This really annoys me! I believe I'm correct in saying that we have the right to see the results of any tests and scans and also anything written about us by our GP/consultant. I'm happy to be corrected if that's wrong.
Wouldn't your doctor want to see her dexa scan results??!
As of 2020 all our information was supposed to be available. They are happily going to sell it to the pharmaceutical companies and goodness knows who else soon.
Must be a UK thing. In the US, at least in Maryland every doctor I’ve had recently and even hospitals I’ve been to provide a link to establish an account through their portal. Often even providing a means to link accounts so can share data. Not only do I have online access to recent lab results and tests, but to historical ones as well (going back about 10 years). Also provides a direct message line for communicating with doctor or setting an appointment or doing a virtual meeting.
You're fortunate to have this kind of access to your records. Some GP surgeries here allow access through a link that's sent to patients but my own surgery's system is not yet configured for that facility. My GP won't provide me with a copy of my blood test results as she doesn't refer me for them even though she is able to access them through pathology. I've had a number of 'wrangles' over this! I can request them via my consultant's secretary but whether I receive them or not is hit and miss.
PALS might be worth a conversation - they could encourage the secretary ...
What are PALS please
Thank you, PMRpro.
It may not be the Secretary holding things up. The clinic nurse doesn’t feel I need to see my blood test results as ‘anything suspect will flagged up’. I’d rather see them for myself. I’ll ask for a phone call after my next test this coming Wednesday and see how it goes from there. I’m a bit like a dog with a bone when I’m rattled and won’t give up. I’ll keep PALS in mind.
Agree but not the secretary, the receptionist informs us of results . Anything unusual you may get a ‘slightly raised result’ . Ask what that means and told ‘I don’t know’. Great service
Nothing to do with the nurse whether you see your results or not - that is just controlling behaviour to justify her position. I don't trust anyone - things get lost, forgotten, missed ...
Much of our surgery is on line, but certain things you have to get your GP to agree sharing with you. Many hold on to our records as a ‘I know more than you attitude’. I personally think they don’t want outsiders explaining to patients what the results mean.
And exactly WHY has she concluded you don't have PMR any more? These docs and their crystal balls ... Which are oh so often cracked 
How does SHE know your cortisol is too low for a test? She can see through blood as well - she must save the lab a lot of work.
Can you see another GP in the pactice who will discuss things sensibly? Arranging a synacthen test would involve effort on their part - but they could request a basal cortisol, taken in the morning as described here to see if it is worth doing a synacthen test:
ncbi.nlm.nih.gov/pmc/articl...
If it is in normal range, adrenal function is OK. If it is below 100, adrenal function isn't OK. Neither of those needs a synacthen test. It is possible that a low level may improve if you continue to reduce the pred very slowly - it takes time and an absence of enough pred.
She doesn't appear to be very well up on adrenal function in general either. I always have this suspicion they slept through their physiology lectures. If they don't know normal function, how can they understand pathological states?
The synacthen test only tells you that the adrenal glands are capable of producing a spike of cortisol if poked. It doesn't tell you they are doing that reliably. If she is being that cavalier about adrenal function I wouldn't want to be her patient on long term steroids.
I gather she feels I have a back problem. That is what I originally complained about. I do have some aching in my lower back and that is what she refers to, but ignores it as well. Trouble is she is our only female GP. The others are men and all have beards which makes it impossible for me to lip read. I think at the moment she genuinely feels it is necessary to get off steroids as I have been on them nearly 4 years. Perhaps she is feeling the strain of being an overworked GP
My back problem is due to myofascial pain syndrome which is now being accepted as part of the pathology of PMR by a wider group than Germanic medics who started the concept. Enough pred helps but won't deal with it on its own but there are more targeted approaches that can make a big difference.
jrheum.org/content/jrheum/4...
Muscle problems don't appear on much imaging - so as far as many doctors are concerned, it doesn't exist.
When I asked my GP if I could have a Synacthen test you would have thought I was asking for the moon. He said he’d never heard of giving one until off Pred .I was at 3.5mg at the time. I’ve since gone back to 5 as I couldn’t manage on 3.5
The level of awareness of adrenal insufficiency and its consequences really quite scares me ...
Dear sufferers,
I think doctor is not understanding. Of course your markets will be down if steroids are doing the trick. Cortisol will also be low as the adrenal glands are probably still not working and thus you may still have PMR. Oh dear
I am on Actemra and down to 5,5mg prednisone, I went through a period of extreme fatigue for two weeks. I stuck it out and am feeling a lot better. I asked my primary doctor about testing for adrenals or seeing an endocronologist. We agreed it was best to wait. Too many doctors overwhelmed me. She is a wonderful physician. She explained that the regular blood work I have done informs them a lot about the state of my adrenal glands; potassium, sodium, and other blood levels are indicators of adrenal gland performance. She assured me my adrenal glands are functioning well according to my blood work. I have blood work done every month because of Actemra. Some times it gets confusing as to what is illness, and what is Prednisone. In my case anxiety was also causing a lot of issues.
dadcue; how long were you on prednisone, and what was your highest dose? I have been on prednisone over 10 years off and on, full time since 2017 after a diagnosis of PMR/GCA from Mayo in Rochester. My highest dose was 40mg. 5.5 is the lowest. I was off for 9 months a few years ago, but the illness came roaring back. Am hoping Actemra can get it to go away this time. And I must get off prednisone because of stomach and diverticulitis issues.
Thank you so much for sharing that. You have been on such a long journey. I am 20 years total, on prednisone for 10 of those years. I am also on Actemra, being weaned off pred. It is amazing what pred can do for us, and what pred can do to us. Only those who have taken this journey can understand. I appreciate your sharing.
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