Vit D levels : Afternoon all Had some of my blood... - PMRGCAuk

PMRGCAuk

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Vit D levels

Bcol
Bcol

Afternoon all

Had some of my blood tests back and the only abnormal one at the moment is the Vit D, which I had thought might be low, but is this an AdCal job or something else needed?

Serum total 25-OH vit D level 39.4

nmol/L 50 - (normal)

Many thanks, as always. Peter

47 Replies
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PMRpro
PMRproAmbassador

The amount in AdCal is just a boost, not enough to remedy low levels. I use a plain vit D supplement and take 4000 IU a day which is recommended by quite a lot of authorities for the winter - 2000 IU is said to be enough in summer if you are able to make some in skin from sun. However, that is dependent on several factors and for most of us can be discounted to be honest.Whatever you do though, don't take extra ADcal to raise the vit D intake - that results in too much calcium intake which has its own problems.

Bcol
Bcol in reply to PMRpro

Ta for that, I'm not on Adcal or anything else at the moment, I'll wait and see what she suggests next week.

HeronNS
HeronNS in reply to Bcol

I was taking one 1000 IU capsule of D3 until a recent blood test showed my level was high. I've cut it to every second day. Also there is D in my calcium supplements. When I started pred my dose was probably about 4000 IU a day but level got high. I asked for a test because I have sarcoidosis which can cause elevated Vitamin D levels. Normally that 4000 IU would have been just about right for an older person with PMR, on pred, and living where sunshine is only good for part of the year. I firmly belive that we should all be getting tested maybe about every eighteen months in order to capture seasonal changes, because some people will be low and a few too high and we really can't tell without the test.

Bcol
Bcol in reply to HeronNS

My docs seem pretty good with the testing (so far). Have a tel appt next week and will see what she suggests. It's good for me to have guidelines from you all so that I can understand her.

HeronNS
HeronNS in reply to Bcol

My doctor prescribes it, the lab refuses to do it if a year hasn't elapsed. I note she put a special note beside my last request telling them not to cancel because I have PMR, so maybe they are being even more stingy with the pandemic underway.

PMRpro
PMRproAmbassador in reply to HeronNS

No doubt the world and their wives are asking for vit D levels with the stuff about vit D and Covid ...

HeronNS
HeronNS in reply to PMRpro

It was already a fashionable test here a few years ago, I can't remember why, and everyone was asking for it, which is probably why they clamped down on unhindered access.

Megams
Megams in reply to HeronNS

~We pay for Vit D levels to be checked in NZ ~

That is pretty good, mine was 25 without anything.

HeronNS
HeronNS in reply to piglette

First time I was tested it was 169. Not so high now but enough I've cut back my D a little more. Wish the lab would allow me to get tested more often.

piglette
piglette in reply to HeronNS

They don’t seem very keen on Vit D testing. My rheumie said it was not necessary, luckily my GP did a test for me.

HeronNS
HeronNS in reply to piglette

They'll only do it once a year here, and the first time I had it done I ended up dropping all my extra D, except what was in the calcium, and paying for a visit to a naturopath and Vitamin D test through her, because I wanted to see what a winter without D would do. I ended up low normal by the beginning of spring. I had another a year after the first through medicare, and that was optimum, and this is the first I've had since then. It was at the end of summer, so I guess I'll wait until spring 2022 for next one. It does look like I'm safe not to take much in the way of additional D even in the darkness of winter, but given I do have a medical condition which makes it hard to balance I wish they would allow the test more often.

Bcol
Bcol in reply to HeronNS

How's the winter, has it started yet, my sister had her first snow today, just a little 8 inches. Also did a you last week and went down a step in the garden and crocked my replacement knee. Got away with bandage support, but also had to support other knee due to the extra strain. Had to hobble for a while but fortunately pretty much back to normal now, but taking things carefully.

HeronNS
HeronNS in reply to Bcol

Oh dear, I hope you've not done any lasting damage. Take care. 💐It's been so warm the daffodils are coming up! But it won't last. I went shopping this morning for a pair of wide leg pants but owing to a number of caveats (I own a white cat, I don't want anything which looks like your grandmother's pull-up polyester trousers, didn't like them in the 60s still don't, and avoiding spandex blended into whatever, because it clings to the brace and rides up, and needing a very small size because I've got so thin) I found nothing. Well, I did find a very nice sweater on sale ;) I may have to wear my loose summer trousers and jeans with long underwear underneath and keep looking as I guess brace-wearing is a forever thing. Unfortunately I appear to be allergic to the material the liner is made of so life continues to be a bit more frustrating than it should be. I was given an "undersleeve" to try, but within minutes the whole brace had slid down as far as it would go 🙄🤣

Bcol
Bcol in reply to HeronNS

Nothing is ever straightforward. Perhaps you need to start eating all the wrong things and put some weight on!!!! I've given up worrying about hairs we have two dogs and two cats in the house, mind you being male I probably wouldn't notice!! Don't think I've done anything permanent but keeping things under a close eye.

HeronNS
HeronNS in reply to Bcol

There is something to be said for tweed and houndstooth, but nothing seems to be made in those materials any more. I did see some rather nice, not at all loud, plaid trousers, but not in my size. I'm told that there are still issues with the supply chain. Serves us right for obtaining nearly all our clothing from China and other countries in that part of the world. Plus Nova Scotia is a bit of barnacle on the hull of the great ship North America and not a priority. Anyway I came home and had tea and will rest the afflicted joint for the rest of the day. It was nice to get out and be "malled" for a couple of hours even though the expedition was unsuccessful. I'm easily cheered up.

Bcol
Bcol in reply to HeronNS

I used to have a couple of tweed jackets in the distant past, have always liked them. Have to say though the thought of a couple of hours in the mall would fill me with horror!!!

HeronNS
HeronNS in reply to Bcol

When I first met my husband-to-be he had a cardigan in exactly the same colour (dark green) as a heather tweed skirt I had. Naturally I "borrowed" the cardigan. I still remember that outfit with fondness. He did get the cardigan back when we were married and the skirt went out of style. Somewhere in my archival sewing stuff are the brass buttons from it. My father used to wear Irish tweed sports jackets.

You might like “ paper bag trousers” they have a gathered waist and wide trouser leg. I know you are slender and I think they suit slim people and don’t look like old lady clothes.

Thanks. They don't necessarily come with wide legs, the design feature seems to be the scrunchy waist. There were no wide, warm (for winter) pants in my size in the three places I looked in today.

Looks like one of my pairs of summer trousers are actually paper bag pants. Who knew? I've never heard of them before. I probably had others which I donated when they outgrew me. :D

Bcol
Bcol in reply to piglette

Don't have a Rheumy all done through GP on the phone. Not had a f2f yet

piglette
piglette in reply to Bcol

I only had a rheumy because the GP failed to diagnose PMR.

Bcol
Bcol in reply to piglette

I ended up in hospital who missed the PMR and it was my docs who picked it up on my return home.

If you're in the UK, it might be useful to google the prescribing guidelines for your area and then speak to your GP, then you will be up to speed as to what the doctor should advise. In my area, at that level, they would prescribe a high level supplement at a cumulative dose of 300,000 iu, basically 50 or 60,000 iu a week for five or six weeks, before moving on to a maintenance dose.

Vitamin D is terrifically important, especially in these COVID times. Please don't allow yourself to be shortchanged.

Bcol
Bcol in reply to Ansteynomad

Thank you for the info and no I won't,

Tahiri
Tahiri in reply to Ansteynomad

I’m on Prednisolone currently at 7mg and Calcium D3 but have wondered about the safety of taking a Vitamin D supplement with K2 ? I have GCA but had a flare a few months ago . Bloods seem to be going in the right direction now but I’m worried about my vitamin D levels as I seldom leave the house. Would taking a supplement cause more inflammation do you think. I was also interested in taking Magnesium as my fatigue is disabling and I read that it could help- but I don’t want to cause another flare. Any advice would be appreciated.. Tahiri

I was prescribed a very high dose of vit D at the beginning of my PMR. I was genuinely deficient which can give rise to PMR-like symptoms. Then I was moved on to Adcal.

Hi Sheffield Jane what dose of Adcal do you take? I can't understand the figures and am just hoping I get enough and not a dangerous amount of calcium I am presently taking 2 am and 1 at bedtime

PMRpro
PMRproAmbassador in reply to marigolds

It depends which form of AdCal you have been given. If you are on the chewable tablets then it is 1 tablet to be taken twice daily, preferably with at least a small amount of food with some fat in it and always 2 hours away from pred. If it is the caplets, you take 2 caplets twice a day, preferably morning and evening. The total in either case is 1200mg calcium and 800 IU vit D.

Why are you taking one at 2am? If that is when you take your pred, you would be better taking the AdCal with your breakfast or lunch.

When I was diagnosed with PMR in Feb 20 the blood tests requested by the GP showed a low level of Vitamin D as well as very high inflammatory markers. So I was prescribed 1000IU of Vit D to be taken twice a day. After 1 month I was then prescribed Accrete which is calcium with added Vit D and told to reduce the Vit D to 1000 IU daily. After 6 months my Vit D levels are at the low end of normal so the GP suggested through the winter I should maintain this dosage, which seems to me to be a sensible approach.

PMRpro
PMRproAmbassador in reply to bluebeam

2000 IU per day will take forever to replenish the vit D "sink", even in the summer - and 2000 IU is less than the body requires for daily functioning when there is no sun boost as is the case in the winter.

I do wonder why GPs can't use a google search to find their local NHS Trust's recommendations (or any other Trust if it comes to that). Which are generally something like 50,000 IU per week for 8 weeks and then check the blood level. Even then it may fall again.

Hi Bcol,I would really just like to echo what Ansteynomad has said.

My score was 15, so my GP put me on a high ‘loading’ dose of 10,000iu daily, for a few weeks, before repeating bloods and then dropping down to a more ‘normal’ daily dose of 1000iu.

What I would say also is that I wasn’t aware that I was VitD deficient until I was a couple of weeks in to the loading dose - what a diffference! I couldn’t believe how much better I felt and hopefully you too will notice a difference once your levels increase.

My Vit D level is very low and I have tried multiple types and all of them make me very shaky. I feel when this is happening it is like my blood sugar levels are low. No I am not a diabetic. My physician has no idea why this is happening. I have done a ton of research on this and come up with nothing.

I have my vit D level checked, and a bone scan annually at no cost given I’m on pred long term. I’m a real sun worshipper with a pool in the background, and despite getting so much sun, my annual test (in Sept), revealed a vit D level of 93 (scale 75-250) my first year of taking pred. Upped my supplements from 2400 to 3500 and my level this past Sept only climbed to 104. So I’m upping again this winter to 4500 and see how it goes.

Of note my bone scan only noted a small change from last year (a bit “worse” per se), but not enough for my GP to be concerned or to add any type of supplement. I try and walk 50 minutes twice weekly (along with other exercise in the pool), and given that I’m overweight, it serves as weight bearing exercise. So hopefully my calcium intake (between supplements and food intake), is enough.

My GP is on top of both tests and orders them annually, something I believe is important for those of us on long term pred.

I thought everyone had to take Adcal when on prednisolone? GP should have prescribed it from the start.

Bcol
Bcol in reply to EeneeBee

I think that's what is in the guidelines, but didn't happen in my case and as, at that time, I had no idea what PMR was I wasn't in a place to insist. Speaking to doc about it next week though.

PMRpro
PMRproAmbassador in reply to EeneeBee

You don't HAVE to and I no longer take it - just vit D and more in diet. Calcium caused problems ... There are 2 other ladies on the forum - both had GCA so high doses, neither took calcium for various reasons and their bone density was fine.

Lonsdalelass
Lonsdalelass in reply to PMRpro

I also, like you PMRpro, started on Adcal but stopped it after speaking to my doctor as it was giving me heartburn. I take vit D supplement and make sure I have plenty of calcium in my diet.

PMRpro
PMRproAmbassador in reply to Lonsdalelass

Gives my husband dreadful bloating - but for me it was cystitis due to forming grit in the urine!

Lonsdalelass
Lonsdalelass in reply to PMRpro

Yuk! 😣

PMRpro
PMRproAmbassador in reply to Lonsdalelass

That wasn't the word I used ...

Lonsdalelass
Lonsdalelass in reply to PMRpro

Ha ha, you brighten up my day! 🤣 🤣

I had the same issue with vitamin D being low when on prednisone. My doctor recommended 4000 IU. I also try and take a walk everyday and that seemed to help make my Vitamin D levels in the normal range.

Bcol
Bcol in reply to jensen0518

Morning, I think I now have a good background to be able to have an intelligent conversation with the doc next week, if needed. She's been pretty good so far. Exercise no problem as I walk the bowwows twice a day.

I'm a bit late to the fair....but my doctor just raised my Vitamin D from 2000 to 4000 per day. It is my understanding it is common and easily remedied. I can recall once taking 50,000 per week until it got to a satisfactory level. 😉Have a good day!!

Update to myself. Just had telephone consultation with Doc, she is very happy with what I am doing, prescribing me some Vit D supplements and will not talk about Bisphosphonates until I have had a DEXA scan which she is going to get organised.

PMRpro
PMRproAmbassador in reply to Bcol

Which is as it should be. Gold star for the lady!

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