Vitamin D?

[ihearttc]

I will start off by saying I already have Rheumatoid Arthritis (although very mildly I’m only on Hydroxychloroquine) and Pernicious Anaemia so my default setting is “feeling crap” anyway. However at the moment I feel really awful. I ache so so much-it feels like it’s coming from deep within my bones and I basically hurt all over rather than the specific pain from my arthritis.
We usually travel abroad (to the ME where it is constantly sunny) at least 2/3 times a year due to DH’s work but haven’t been now since August. While I am there I always feel much better, can move around much easier and I don’t hurt as much. Some of this maybe in my head as I’m on holiday but equally I feel like I can’t ignore the fact that without this huge top up of vitamin d I usually get I may now be deficient. I have had loads of blood tests over the years but never been tested for Vitamin D.

I’m more than happy to buy some over the counter and try to see if it makes a difference but am unsure of what strength to get. I see large amounts spoken about on here but assume that’s with a diagnosed deficiency so there is no guarantee I will need that amount. I’m looking at either some which is 2000u each day or 4000u each day? Which would be better and can I cause damage if I take too much if my vitamin d levels turn out to be ok?

4000 daily is the highest recommended amount. I take that over the winter and 1000 a day during the spring/summer.

You probably need a loading does if your deficit (iirc I was on 20000 a week for two weeks when I first found out I was deficit.)

GPs don't like to test for it for some reason. Took me literally having a breakdown in the surgery to get tested (along with iron and some other things).

I'd maybe take 4000 a day for a week then drop down to 1000 and see how you feel.

Or you could but a SAD lamp and use that each day for the recommendation time. My sister swears by hers!

Thank you that’s really helpful. Am I better to just buy some 1000u tablets and then take more each day then drop down to just one?

I even asked my rheumatologist last year and she said it’s just the RA but it’s a completely different sort of pain. I’ve just had my B12 injection so I don’t think it’s that either.

That’s interesting about the SAD lamp...will investigate.

Please get your levels tested before deciding to give yourself a loading dose. It can cause problems if you take too much. I have high strength prescription vitamin D but have blood tests regularly to check my levels and my dose is adjusted accordingly.

www.independent.co.uk/news/uk/home-news/health-warning-over-toxic-levels-of-vitamin-d-sold-in-supplements-a7625331.html

Thank you...thats what I was trying to find out. I basically want to take some vitamin d in an attempt to try and make me feel better as Im convinced Im deficient in some way but I don't want to take too much.

Looking online there are so so many different strengths that I have no clue what dose I should take and google isn't really helping much either. I sort of assumed the 2000u one was ok as it was just sold in Boots/Tesco rather than a specific high dose Vitamin D? Is that the sort of level I could safely take each day?

And I obviously can't get a blood test done at the moment. Just getting a bit desperate in an attempt to try and feel better and not in so much pain.

medichecks.com/products/vitamin-d-25-oh-blood-test Yes you can

I have lots of chronic conditions I manage myself & always check my levels first before I self-treat. Currently on Vit D & will be ordering this one soon. No phlebotomist needed. Good luck!

I take 4000iu D3 with K

Medi check checks just vit d for 40 odd quid
York test checks cholesterol and Triglycerides, Vitamin D, Vitamin B12, Folate, Iron Deficiency, Liver Function for 90 odd.

Wow...thats brilliant. Only slight issue is our local post office has closed so would have to drive to somewhere to send it back but could tie it in with food shopping.
Id only need the vitamin d...GP's do all the other blood tests routinely due to my pernicious anaemia. They just don't seem to be keen on testing vitamin d for some reason.

Absolutely. They often have discount days too, so worth looking at a more comprehensive blood test. If they're finger prick. Til after lockdown

I'd be questioning your rheumatologist when this is all under control why they haven't tested you before. It's fairly well known that people with autoimmune diseases tend to have much lower levels of vitamin d.

Are you due bloods soon?

I agree, look into a SAD lamp! Surprised you haven't already really if you see such a different when abroad.

Also, don't self prescribe. When is your next blood test due? Ask for it to be added onto that to actually check. Some places are still doing blood tests. Although not essential or life threatening, you could still ask your GP/practice nurse.

I got mine (and some other levels) tested via Medichecks recently. My level was 29 nmol/L which is just in the deficient range. I felt like shit, very foggy headed and tired. I am now on 40,000 iu per week for 7 weeks. You should not load if you haven’t been confirmed as being deficient because it can build up and cause problems, but you can take reasonably high levels daily. You can buy 2,000iu tablets in Boots. The NHS has some guidance www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d/

Hope you feel better soon

In fairness I normally have a tan when I go to see her and her exact words were "there is no possible chance you are deficient in Vitamin D when you have clearly have been in the sun". However she also told me that I was not likely to have rheumatoid arthritis either and it turned out I did.

I usually only have bloods done when I go to the hospital once a year and Im not due again until October. Because Im only on Hydroxychloroquine it doesn't require regular blood tests. I had my B12 levels done earlier in the year.

I haven't considered the sad lamp mainly because I assumed (obviously wrongly) that it was for people who had SAD (which my friend uses it for). I didn't actually realise it was to increase Vitamin D levels as well.

I was told the GPs don’t test for vitamin D as we are all deficient in the U.K. due to the weather here so they already know the answer!

There is no goodness outside the May to August window as far as I recall? So defo supplements September to April. Roughly

I’m on 1000 vitamin D3 as apparently the body takes vitamin D and changes it to D3 to use it. So if I give mine D3 it’s one step less the body has to do for it to be useful.
Apparently if you look at different countries and their rda, it varies drastically. Presumably because they have so much more sun in various places compared to the U.K.!

iheart I always have a tan too but my rheumatologist still checks my levels occasionally to make sure.

I will try and get one done via the link on the thread and then speak to her next time I go. Something definitely isn't right.

Many thanks for everyones help.

Our test ordering system won't let GPs order vitamin D unless certain criteria are met as it is a really expensive test and people weren't thinking before ordering. I would get a vitamin D supplement from Holland and Barrett until you can get in and get your level checked once the restrictions are lifted. 800u a day will give you something and it's what we are recommended to take in the UK over the winter.

I've recently bought 1000iu (25ug) vitamin D3 as I'm in Scotland and probably most of us are deficient. Have also read it may help against coronavirus too. I bought a pack of 365 (1 year supply) microtablets from amazon.

There is an app that estimates how much Vit D you are getting from sunlight/ other sources that might be worth looking at.

Also bought the kids a spray D3 as they arent great with tablets.

It's called dminder. I promise I don't work for them or anything!

@Elieza that's not true. GPs test but only if you have severe symptoms that could be vitamin D deficiency.

They are restricted on how many tests they do and follow up tests unless you end up under a consultant.

They can also prescribe but in many areas they will only prescribe if you need high levels as you are severely deficient or a child.

Also cheapest place for vitamin D testing is www.vitamindtest.org.uk/vitamindbackground.html

It's £29

In my area of London your levels should be 75nmol/l