I have been on zero prednisolone (to treat PMR) for 5 weeks. Over nearly 4 years this is my fourth attempt on a tapered reducing programme due to 3 flair ups. The rheumatologist specialist thinks the PMR has 'burnt itself out' and suggests I take anti inflammatories whilst my system settles down. I have not been able to tolerate anti inflammatories in the past, e.g. Ibuprofen, due to a history of peptic ulcer, hiatus hernia and oesophagitis. So I am managing, with mixed success, typical PMR symptoms with Co-Codamol. Nights are the worst and I am fatigued due to poor sleep. Some weeks ago I read somewhere (in a newspaper health artical) that the adrenal gland can function poorly after extended steroid use and that a cortisol blood test could be a useful tool to gauge natural improvement of the adrenal gland, when steroid use is stopped. After some persistent my family doctor arranged the blood test and gave me the result this afternoon. It was normal at 400 compared to 93 at the end of 2013. At the time I took this at face value. Now I'm thinking 'what do the figures mean'. What is abnormal? What is high? Low? Does anyone have any experience of the length of time one should allow before giving up and going back on steroids? I'm desperate to stay off steroids but not sure how long I can put up with the 'still' PMR type symptoms. Apologies for lengthy question but need all the help I can get.
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I had to google PMR. Polymyalgia rheumatica? A couple of links I looked at suggested it is autoimmune in origin. If that is the case, then I doubt very much it will "burn itself out".
Thanks humanbean for such a prompt reply. PMR diagnosed by visual inspection and manipulation of my limbs, in particular, hips, shoulders and upper arms. Doc and specialist said the only way to confirm the diagnosis is to take 15mg of Predinisolone to see if 'very' early relief from the symptoms is obtained. Within days the improvements was complete and I experienced the same effect when reintroducing Pred after flare ups when on low doses of Pred during tapered reducing programmes.
Did anyone check your thyroid and/or nutrient levels before diagnosing PMR?
Low vitamin D, for example, can cause severe muscle and joint pain, and so can low thyroid hormone levels.
The problem with what I've just said is that, if your doctors did test you for thyroid hormone problems and/or nutrient issues they only interpret them in terms of the reference ranges. So, to give you an example :
Three patients A, B, and C all get a ferritin (iron stores) test done. The reference range for the ferritin test is (13 - 150).
A has a level of 13.
B has a level of 85 i.e. roughly mid-range.
C has a level of 150.
Doctors would tell you that all three patients have iron levels that are in range so low iron isn't the problem.
But patient experience on this forum will tell you that the patient who is most likely to feel well is patient B. The one likely to feel worst is patient A, and patient A would feel better if they raised their ferritin levels to mid-range.
If the doctor uses the same logic about reference ranges for test results for vitamin D, vitamin B12, and folate (all these things plus iron have a huge impact on thyroid hormone functioning within the body), and if all of them are low in range, then the patient will feel dreadful. And the cure is relatively cheap and (usually) simple.
I know I'm preaching, and perhaps your doctors are wonderful and sensible, and they did look for obvious things like low nutrients before making their diagnosis. But if they didn't then I think it would be worth you asking them to do it for you, and then ask for a copy of the results and reference ranges. Or you could do them privately, by post, using a finger-prick sample.
I also know I haven't answered a single one of your questions - sorry!
Trust me, no need to apologize. Where I am at the moment all information is gratefully received. Will need time to digest your response. Will respond at some future date. Thanks.
If you are getting any tests from an endocrinologist or instigated by the endocrinology department you should read the relevant pages in the link, find the test you are having done, and read up on preparation, timing, interpretation etc.
(I wouldn't expect anyone to read it all!)
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It was normal at 400 compared to 93 at the end of 2013. At the time I took this at face value. Now I'm thinking 'what do the figures mean'. What is abnormal? What is high? Low?
Again, sorry, I can't help with the above questions. But I can tell you a bit more about cortisol and testing cortisol and how it affects people who have thyroid problems.
The body produces cortisol in response to stress. The number of things the body interprets as stress is huge. Poor quality diet, eating too much or too little stresses the body, as does too little exercise, too much exercise, illness, psychological stress at work, bullying, grief, pain, ... The list is long.
Having insufficient thyroid hormone causes lots of stress and the body produces adrenaline and cortisol to try and compensate for the missing hormones. People have various levels of tolerance of increasing cortisol. Some people can keep on producing extra cortisol for very long periods of time (possibly many years). Some people can't keep on producing so much cortisol indefinitely and eventually their levels drop. Both too much and too little cortisol cause problems for the sufferer.
Cortisol is produced in different amounts during the day and night. It has a circadian rhythm. See this picture :
Doctors generally test cortisol quite early in the day when cortisol levels are at their highest. Doing a single test tells them nothing about cortisol levels in the patient's body five minutes after the blood test, or 3 hours later, or 12 hours later.
Another problem with blood testing for cortisol is that cortisol is carried around the body (in the blood) by proteins called globulins (when it is referred to as bound cortisol). In the case of cortisol this is called Transcortin :
The cortisol blood test measures the total of bound cortisol and unbound cortisol. The body can only make immediate use of unbound cortisol.
So, if a patient has a high level of bound cortisol and very little unbound cortisol, then the blood test won't show it.
There is a way of getting round the above blood test limitations. Unbound cortisol (the useful kind) can be measured in saliva. There are private tests that can be done which will measure cortisol in saliva at 4 points throughout the day. They will also measure DHEA which is additional useful information.
If you are interested in doing the cortisol saliva test then you can find out how to order and how to get your results from Genova (they don't deal directly with the public like Blue Horizon and Medichecks do) at this link :
With the results of the test it is possible to find out whether your results are low or high or mixed. They will give you a better idea of what kind of supplements you might need (if any), and it is possible to buy things without prescription which help with raising or lowering. (I don't want to give you the impression it is easy because it usually isn't.)
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For some useful links on adrenal issues you'll find quite a lot at STTM :
Look under the heading "Adrenal Information" on the Site Map :
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I feel like I'm loosing it! Thyroid?!
Hashis/Adrenal Fatigue question
I'M New
If my doctor offers Thyroxin, do I decline at this point?
Anyone heard of a test which can check if the thyroid is producing hormone.
