I have tapered down from the last flare from 20MG, 10mg and now currently at 5mg. Bit of conundrum. I'm feeling the effects of low Cortisol, fatigue, headache, etc. I'm loathe to start increasing Pred dosage, but don't see what else can be done.
I'm waiting to see what my doctor and rheaumy have to say. 2 steps forward, one step back. Thought I would share this as we experience this rocky PMR road.
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The reason the result is so low is because you are still on 5mg pred which is plenty to suppress the production of cortisol by your adrenal glands. Most endocrinologists won't test until you are under 5mg because they know that. There are people on the forum who had similar results at 3mg but then by 1.5mg the figures were improving.
You have to work through this period of feeling fatigued and all the rest of it to come out the other side. That is the only way to signal to the adrenal glands that they need to start making a contribution. If you look at the FAQs there is a fair bit about this stage under Adrenals.
At this stage you have to slow the tapering right down and spend longer at each new dose until the adrenal function catches up. SnazzyD has written a fair bit about her experiences at these low doses of pred. The choice is basically to accept some time where you are considerably limited while the adrenals wake up or you increase the pred - and remain on it for the rest of your life.
Which test? The basal cortisol is a simple blood test he could add to the other tests he should be doing intermittently and isn't particularly expensive though I can't find a price online. The synacthen test is acknowledged to be expensive and inconvenient:
as the cost of the synacthen is added to by the costs of the outpatient day clinic at the hospital, which the patient must attend for usually a half day and that probably comes into the hundreds in total.
The NHS is obviously starting to push the idea of the basal cortisol but your GP may not be aware and there is a codicil that they can't be interpreted when a patient is on pred - which isn't strictly true since they can show if you are producung any cortisol as your dose reduces which at that stage is what you want to know. A low result shouldn't then result in a panic because the patient has adrenal insufficiency,
Only if they asked for it - and it doesn't sound as if your GP was being that helpful, It isn't a routine request, The lab only reports what they were asked to do even though automation may mean they did a lot more at the same time. But corticol isn't that sort of test, it needs to be asked for specifically by whoever made the request.
The Endocrinologist rang me a week ago, she was concerned how long I have been feeling ill she has sent me a blood test form, it is FBC2, B, GGT, LFT, T, and AVD, and cortisol, don’t know what some of these are, just hoping it includes thyroid. This may be a silly question, but I want the truest reading of my adrenals so being on 4.5mg, obviously not taking pred on the morning of test, would it be too risky to take just 3mg the day before? Depending on the result she will see if I need the longer hospital test. She has made me a further appointment for me in a year’s time!
Has B got a number after it? It may be B vitamins - including B12 but I don't know
GGT Gamma Glutamyl Transferase
LFT is liver function tests - a basic set
T is probably thyroid
AVD - as a blood test, no idea.
Mmm - but SHE wants to see what they are doing NOW.
It's been cosy - 32C even up here and mid 30s in the lower valleys. Had a massive thunderstorm yesterday with high winds that blew a lot of trees down and 27 roofs off in town. A small repeat this morning. We didn't get it as bad as north Tirol though - rail connections stopped for hours. Might be more this evening. But the weather man says no more heatwave and these cell thunderstorms here in July, just normal summer thunderstorms due to heat. Lovely out there now but I'm waiting for grandson's graduation to start at 1,30 UK time so going nowhere.
Enjoy his graduation, hope the weather is good for him....have witnessed many ceremonies while working at UEA....Think I might be naughty and risk 3 mg...day before test, sit in this chair and be waited on! no number after the B.
Just had the blood test with B and T we weren't sure about, its B for bones, T for thyroid.....Hospital then rang to book second Zelondronic infusion, and 3 weeks before that a Vitd test......last year doctor at hospital before first infusion said my Vitd was borderline low, GP said a week later it was normal........who knows what they are talking about anymore??
You certainly can't come off pred altogether immediately - that would be tantamount to medical negligence as it would put you at risk of an adrenal crisis and that would make you very ill. requiring hospital treatment and even potentially putting your life at risk of it were not recognised and treated immediately.
The procedure is to continue to taper the dose of pred VERY slowly and remain at each dose for 4 to 6 weeks at least to allow the body to catch up. No heroics - and if any doctor tries to get you to stop suddenly you need to find another doctor who knows more about the return of adrenal function after long term steroid management.
My Endo wouldn’t test until I was consistently at 4mg maximum because they thought the adrenal glands can be plenty suppressed at 5mg. A low value at this dosage would not give them a reliable enough guide to future potential. At 4mg mine weren’t that special but the test at 1.5mg was pretty good on the day. I had to wade through feeling rubbish for months to get them to work.
Thank you! I was diagnosed 9 years ago now, still the ongoing battle of pred flares, and tapers. Like so many others here, I can muddle along on 5mg of pred, its below that line the trouble increases. Still with no much help and information from here, one has a better understanding of now how to deal with it, and the suffering..
Thank you for mentioning the HPA axis. I am fairly on OK on 1.5mg days but really struggle late afternoon on the 1.25mg days of the DSNS taper regime. I'm hoping to get a basal cortisol test when I see a GP next week but having read loads and loads on AI ( secondary, iatrogenic, whatever label you wish to give it) I have come across an expression which I think encompasses what many of us are experiencing - HPA axis dysfunction. I have often written that it's not just the Adrenal cortex which needs to function, it's the whole HPA axis system.
I had been on high doses of steroids for GCA and with help of Methotrexate tapered very slowly with final dose last December . This wonderful forum warned me about difficulty with adrenal insufficiency and true to form I felt awful for 6 months; very tired and quite depressed and then suddenly it was as if the sun came out and I feel imbued with energy that I forgot could exist. Be patient; one step at a time. Good luck.
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