Forum

Vitamin D

Hi

Could anyone please tell me or advice how much liquid vitamin d is necessary with MS?

Many thanks

Claire

This ones a tricky one. The consultant or gp really should advise as its dangerous to take too much and can lead to toxicity. Most people take 5,000iu a day but it is really important to get regular blood tests every 2 months to check your levels as 5,000iu for one person per day is ok but for another it can be way too high. Have you had a blood test to check what your current vitamin d level is?

My neuro suggested 1000 to 2000iu of D3 per day.

I take the Vitabiotics ones, they are 1000iu and consultant said they were fine. Tesco had them on 3 for 2 the last time I looked (so I now have about a years worth stashed away)

Sonia x

I had hospital visit yesterday and consultant confirmed my dosage of vit d at 20,000iu three times a week for a further 2 months when I see her again. She did however take further bloods. She said it takes 3 months of taking vitd for it to make any significant difference to my blood levels. We knew that my level was as low as it gets so we had a base line to work from. She also confirmed that once I was up to an acceptable level to continue with off the shelf vitd. Still awaiting dx. Would agree with Karina blood tests are important to avoid any chance of overdosing.

Dinks

Well from personal experience I was prescribed 10,000iu a day of vitamin d3 by the original hospital and consultant. It was me that pushed for a blood test 6 months after starting them and my levels had gone too high - they had gone from being 19 up to a staggering 375 which is considered a toxic level! Nobody was monitoring my level except for me! I reduced my dose to 2 x 10,000iu a week and noticed i felt my level getting low (i dont sit in the sun as i just burn) so then i upped my dose and now take 3 x 10,000iu a week and am due a blood test in the next few weeks to check my levels. I can’t stress how important it is for nobody to self supplement without getting regular blood tests - it can be serious is levels get too high

Sorry to hijack. And I cannot help with original question at all.

But should I ask to have my level checked? I never have. Or maybe they have checked it and I dont know…should everyone with MS have this checked?

Yes you should ask to have your levels checked - it’s common in people with ms and many other autoimmune conditions to have low levels of vitamin d. It’s a simple blood test that the gp can do a form for so worth asking

I agree with the last comment. I had a level of 16 which is low. After 5 weeks of 30,000 iu twice a week. My level is now 150 and I am now taking a maintenance dose of 800iu a day. The tablets I take are called Adcal D3, I dont know if I should be taking any other vitamins as well. Maybe someone could help. Thanks

Vitamin b12 is also worth taking as many people also seem to be deficient in that. My consultant also recommended omega 3,6&9 - I’m allergic to fish so can’t take the fish oil so the consultant recommended flaxseed oil instead. I take numerous supplements but not sure how much they work - I have a vitamin b12 injection every month by the doctor as I have problems absorbing it (they think it anaemia related to my lupus). I take 2 flaxseed oil capsules a day, 1 evening primrose capsule a day, 3 x 10,000iu vitamin d3 a week, 1 magnesium tablet a day, 1 zinc tablet a day, 1 folic acid tablet a day, 1 vitamin b complex tablet a day, 1 vitamin e capsule a day, 2 ginkgo biloba tablet a day and I also take 2 vitamin c high strength tablets twice a week- I don’t take the vitamin c every day as it can make my immune system over active.

Phew thats quite a list. I have heard before that B12 is beneficial, so I’ll get some and fish oil and magnesium Thanks for that! Lyn x

I reckon that the flaxseed oil is better than the fish oil - because it also makes your nails grow and your hair shiny :slight_smile: