Following my last post about trying to coax the adrenals out of their deep slumber and trying to stop Celcoxib, I saw the endocrinologist last week.
Good and bad news - good to see ESR and CRP at the lowest levels for many years, but
Bad - sub clinical hypothyroidism, looks like I have an underactive thyroid, iron deficient anaemia, leaky gut (back on Omeprazole and camera crew going in to check!)
and very low vitamin d deficiency - a score of 19 nmol/L when it should be (I think) >50 nmol/L
[probably not absorbing vitamin D because of the gut issues].
Would this all help explain my worsening fatigue and possible bone, muscle aches & tummy pains?Can this all be a hangover from PMR, pred and hydrocortisone?
One of my real challenges is how much longer can I carry on working (Accountant and consultant) in high profile, long hours projects and with challenging clients - may need to reduce my hours now???
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Cyclo5
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You probably would have problems with your vitamin D level at 19. I did when mine was 25. It is really how do you feel about working? Your body will tell you when you need to take it more easily.
I was found to be in the low teens of vitD before GCA diagnosis as I had a hunch and asked for a test. Tiredness and feeling achey and generally off and my lack of sun and oily fish made me wonder. However, after a high dose loading program having cleared away the general stuff, odd symptoms came to the fore, soon to accelerate and become a GCA diagnosis. Low vitD can affect everything but whether its 100% of your woes will only become clear when you resolve that. I will always have to take a maintenance dose because I’ve twice more found to be low, though not that low again.
"probably not absorbing vitamin D because of the gut issues"
Are you on a vit D supplement? You can't get enough vit D from diet and vit D from the action of sun on the skin is very limited at our age - going by previous posts mentioning prednisolone and VE Day I'm assuming that you are in the UK so no foods are fortified as they are in the USA except possibly breakfast cereals. You won't make any vit D in skin except by being outside without sunscreen between 11am and 3pm between May and September, the further north you are, the worse the situation. And at 65 your are producing about a quarter of what you produced at the age of 20. So gut issues don't really have much to do with it.
Low vit D can cause all those symptoms - or at least, in the absence of other causes, replenishing vit D by a course of high dose vit D over a period of a few months can improve such symptoms. However, that isn't the pathetic amount in AdCal supplements, 800 IU per day! This is an extract from the NHS guidelines for South West London (it is a download, can't give a link):
"Where rapid correction of vitamin D deficiency is required, such as in patients with symptomatic disease or about to start treatment with a potent antiresorptive agent (zoledronate or denosumab), the recommended treatment regimen is based on fixed loading doses followed by regular maintenance therapy:
- a loading regimen to provide a total of approximately 300,000 international units (IU) vitamin D, given either as separate weekly or daily doses over 6 to 10 weeks
- maintenance therapy comprising vitamin D in doses equivalent to 800–2000 IU daily (occasionally up to 4,000 IU daily), given either daily or intermittently at higher doses. "
I take 4000 IU daily - that is what I need to keep my vit D level in the recommended range. Otherwise is slowly falls back to depleted levels - and I live only very slightly north of Turin where theoretically I can make vit D from sun all year round. Apparently as many as 80% of locals are depleted - probably due to their intense suntans on exposed skin. A light suntan is equivalent to Factor 12 sunscreen, even Factor 8 sunscreen will reduce the potential vit D production by 90%.
If you have a degree of hypothyroidism that is also likely to contribute to all those symptoms. Even if the synacthen test shows your adrenals are able to produce cortisol, it doesn't mean they are doing so reliably and producing extra when required. It is thought that even when all is functioning well in this very complex feedback set-up that it can take a year after stopping pred entirely for it to be back to normal.
PMRpro, many thanks for such a thorough analysis regarding vitamin D. Very thoughtful and much appreciated.I have been on a monthly 20,000iu tablet for the last 2 years plus I take a daily D3 1000iu (that is combined with omega-3).
Regarding northerly latitude, I live in Cheshire so no decent sun until April at the earliest...
Following my consultation I was prescribed a weekly 40,000iu (colcalciferol¿) for 8 weeks, with follow up tests in 3 weeks. We shall see what that brings.
Consultant did mention vit D injections too......
I'm from Scotland originally, (Scottish Mother, Indian Father) so I can sunbathe and absorb sun well through my "trick" pale skin 😁
I'm a "10-15 mins sun/ 10-15 mins shade" person, when on hols.
My adrenals are producing next to no cortisol.... C115 basal, c 380 after synacthen and I think these should be something like 400 basal, can't recall off the top of my head.
Mmmm - the sun may be shining in April - but it is the angle at which the sun's rays strike the skin that is crucial to switch the process on, not high enough in the sky until May, and that is in the south. Plus the skin factory slows down and often doesn't work as we age. Being in the sun doesn't mean it is working.
20,000 IU per month and 1000 IU per day is a lot less than the loading doses and even than what I take - 50,000 IU compared to 120,000 IU and that is about what you are getting now,
Your adrenals aren't entirely dead - but they have a way to go, I hope they have issued you with a hydrocortisone rescue kit?
Yes, and another great medical experience.... The GP surgery/ pharmacy were able to provide a child's (under 16) .I asked for an adult kit and, bear in mind this is an "emergency kit", I was given
- a pack of 16 syringes
- 2 vials of hydrocortisone powder, and
- a box of 12 teeny weeny saline solution bottles
I take my hat off to anyone, other than a medical professional, who can mix that lot up correctly, under pressure, when someone goes into adrenal crisis.
Not sure THAT would be much use unless she was present during the crisis!! Makes me even less impressed with the UK these days - can't even call 999 and guarantee they'll turn up on time. They are quite practiced ...
I'm considering some winter sun but mindful of your point regarding intensity for vit D production.I'm considering first 2 weeks in March, Nice, or southern Italy, possibly Crete if I can find somewhere with good WiFi so I can continue with some work.
A full-time, stressful job and PMR do not play very well together. Is retirement an option? If not, you could try what I'm doing - working reduced hours. It took some effort to get everyone to agree to it, but it's been a godsend.
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