Hi everyone it’s been a long time since i posted but i wondered if anyone else has any vitamin deficiencies? I have low B12 and get injections every 3 months. I have now found out i have a vitamin D deficiency that is so low the doctor said i get a medal for being the lowest he has seen. I must have had this a while because my bones and muscles ache so much I struggle to walk and use my hands. I have to take kalcipos d tablers and the doc said no point testing me again until after christmas because it will take a long time for levels to rise. Im really interested to find out if anyone suffers this too?
Vitamin D3 deficiency is very common in MS and a lot of people on here take D3 supplements to counter this as well as to potentially reduce relapses (there is growing evidence that it can help).
B12 deficiency is also more common in MSers than in non-MSers.
I’m a bit surprised that your GP has only given you tablets to try and rectify your D deficiency. If they are the 800iu pills, it is going to take an awfully long time for you to notice a difference I would think. Obviously he’s the medic, but if I were you, I would seriously be thinking about taking stronger ones. Mind you, I already do! More and more neuros are recommending MSers take a hefty supplement. 5,000iu a day is probably the most common amount.
Good sources of info on vitamin d are the vitamindcouncil and vitamind3uk websites. I’m not recommending that you buy anything from them (it’s cheaper elsewhere for a start!), but the info is pretty good.
Karen x
Thanks Rizzo my gp is useless they dont seem to take me seriously. I am on 1600iu a day. Im going to gran canaria in november for some sun because the pain is so debilitating and the doctors dont seem to be in any rush to help me. I had a feeling I should have been on a higher dose of vitamin d. I think it is also the reason I have cysts on my thyroid. Thanks for your help as always :0) sx
1600iu is woeful! New EU guidance for 11 year old’s (for the general population) and over is 4,000 U/day (http://mstrust.org.uk/news/article.jsp?id=5503&utm_medium=email&utm_source=MS+Trust&utm_campaign=1584212_news+alert±+31%2f08%2f12b&utm_content=vitdguidence&dm_i=157R,XYDW,6W2JQ6,2TVT4,1).
A spell in Gran Canaria should help! We make so much Vit D if there is sufficient UVB and we are short Vit D. Nevertheless, I’d be tempted to boost Vit level now anyway, the EU guidelines are “Maximum safe dose (or no observed adverse effect level) = 11,000 U/day” where (U = iu = IU).
Thanks Jon it seriously does not surprise me that im not on a higher dose. I kept going to them as pain is getting worse and he said that I had to be patient because i was so low it is going to take a long time and bone and muscle pain was to be expected. Well it doesnt really help me though i feel like my bones are going to break when i walk. If i went back and asked for higher dose they would probably tell me more lies, im still trying to get over the length of time they took to find my b12 deficiency. Thanks for your post i really appreciate it sx
If you want to buy your own, the Healthy Origins capsules are reasonably priced. I think it’s free delivery on amazon too. I’ve been using them for about 2 years and had no problems with them.
Kx
That sounds good will definitely give them a try thanks :0) sx
Hi, Your post has really interested me because I am in constant pain following relapse in March that led to diagnosis. Following advice on here I take 5000 iu per day vit D. I have just returned from 4 days in Majorca where I didn’t have one ache or pain. I had actually forgotten what it felt like to be pain free. I wasn’t sure if it was the heat or the sun? I have been going without sun cream for half an hour front and back to top up vit D levels. My friends all saying I look great as have been popping out in garden in bikini whenever sun out this year to top up. Appearances can be deceiving. I hope you get the same relief as I did when you go away in November. Carolyne.
Hi Carolyne
Thanks for posting. It is great to know that I am not the only one with this. I have been suffering for years now, pains pins and needles shock pain down my neck swollen fingers, ankles feet blah blah blah. First it was B12 deficiency and now it is Vitamin D deficiency. I am wondering how long it will take the doctors to find out what is causing this and stop making me feel like I am a hypochondriac, maybe some joined up thinking would be a good idea but doctors do tend to lack this ability.
I hope you are starting to feel better Carolyne, my doctor wont increase mine for fear of me getting too much ( he said it can be toxic) so I have had to start going for sun beds. I am 45 years old and my mother is in better shape than I am.
sx