LOW VITAMIN D: Hi everyone. I had a letter from my... - NRAS

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LOW VITAMIN D

17 Replies

Hi everyone. I had a letter from my Consultant this morning and he says my vitamin D level is very low, so I have to see the GP next week to collect some tablets he wants me to take (Pro D3 capsules 20,000 IU three times a week for three months). Could this possibly be why I am still feeling so tired and feeling so cold. I recently had the MTX increased to 20mg and now also have to take folic acid every day except MTX day, I was just on 1 tablet the day after. I really hope all the extra tablets help and I can get some energy back. Have any of you felt like this and was it related to vitamin D deficiency, or do you think it is just the RD. I also had the home visit from OT on Monday and the aids were delivered yesterday, excellent service from them and I had a good laugh with the Therapist and young student who was with him, they were so funny. Now just waiting for the Podiatry appointment which is on the 26th November and then I will take the plunge and apply for PIP and Blue Badge. Hope you are all doing well.

Sue. X

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17 Replies
helixhelix profile image
helixhelix

It may not completely solve the fatigue problem, but extra folic acid & D3 should help. But do just check the prescription instructions for the D3. I also take that dose, but only once every 2 weeks, not 3 times a week!

scotslass333 profile image
scotslass333 in reply tohelixhelix

Just had my Vit D checked, my Rheumy said usual starting dose is 800iu a day - which is tiny compared to what you're on... am now wondering if I should double check my dose with GP??

helixhelix profile image
helixhelix in reply toscotslass333

It's not that different - just two alternative approaches. Your doc prefers to trickle feed a smaller amount on a daily basis, & mine went for bigger doses at intervals. Both approaches are valid, just depends on you and how low the levels were to start with. Mine were on the floor.

in reply tohelixhelix

Thanks I hope it helps. Just checked the letter in case I had misread the dose, but it does say three times a week. X

helixhelix profile image
helixhelix in reply to

That is quite a lot - although not above the maximum which is 30,000 IU a day. Maybe your levels are extra, extra low right now!

But could you check with pharmacist or GP when you pick them up? Just in case it was supposed to be 2,000 three times a week not 20,000? Everyone's different and there are different approaches but the guidelines from various organisations do give lower amounts for daily/weekly doses

Adults5,000 IU/day

1,500-2,000 IU/day

600 IU/day (800 IU/day for seniors)

flow4 profile image
flow4 in reply tohelixhelix

Those are the doses to maintain healthy levels rather than restore them, helix :)

helixhelix profile image
helixhelix in reply toflow4

Good point! I'll stop worrying.

daintydina profile image
daintydina in reply tohelixhelix

are we tested for this in our blood tests? I have had r.a. for 30 years and this has never been mentioned. pat

nomoreheels profile image
nomoreheels in reply todaintydina

Mine's tested annually as an add-on when I have my monthly drug monitoring bloods done by the Practice Nurse at my Surgery.

Padram profile image
Padram

Hello happy granny, vit d is low for all types of arthritis. In fact vit d is low in all auto immune disorders . Your dose depends on your vit d level . Mine dropped to 4 because of steroid for ITP. I was given 60 k vit d once a week. It is very essential for our bones. I was also given calcium with k2. Vit d varies for each person depending on their level in blood. Your fatigue will disappear with vit d. Also it helps in keeping our bones in better health.

Padma

alioli58 profile image
alioli58 in reply toPadram

Vitamin D is needed to help calcium be absorbed by the body.

Does anyone know why autoimmune patients are always low on Vit D?

helixhelix profile image
helixhelix in reply toalioli58

Chicken or egg? Is it that not having enough Vit D can trigger RA in susceptible people, or does having RA make it more difficult to produce Vit D in the body? Views seem to vary! Living in a northern climate, being overweight, and having poor kidney function also contribute.

alioli58 profile image
alioli58 in reply tohelixhelix

No hope for me then

Thanks @helix helix

flow4 profile image
flow4

I was once vit D deficient, and I felt absolutely exhausted, ill and achy. It took 2-3 months to get my levels back up, but then I felt a lot better. I was advised to take (as I remember) 10,000IU per day for three months, so about the same as you.

Now, I keep a bottle of vit D drops in the fridge and take an occasional dose if I don't think I've had enough of it in my diet or through sunshine. Hope you feel better soon! :)

flow4 profile image
flow4

By the way, prescribed doses can change depending on your own blood vit D levels. It is important not to take too much, because vit D and calcium levels are related, and too much vit D can damage your kidneys and/or cause calcium to be removed from bones, which can soften and weaken them.

carotopgal profile image
carotopgal

About 10 years ago, my knees started killing me. Couldn't imagine what the problem was, but when it got to the point I could hardly walk, I decided it was time to see the doctor. He sent me directly to a rheumy to get checked out. Turns out my Vit D level was at 3 and I had the beginnings of rickets. He started me on 60,000 units once a week for three months. That got my level almost up to normal, but still lower than he wanted. Now I take over the counter Vit D at 10,000 a day. I can't take any less or it drops to below normal. It worked like magic on the pain in my knees. :-)

Thanks for all your replies. I will definitely check with the GP to make sure it is the correct dose. I have been extremely tired for a few weeks now so maybe the level is really low at the moment. Will let you know when I see the doctor. X

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