36 posts Page 2 of 4
I read with great interest Judy's post and all your replies, because I'd come here looking for some advice too -

George, is there a medical paper - or part of one - I can print out and give to the neuro or GP that backs the higher range for vitamin D?

nryan's response has convinced me not to stop supplementing entirely which I had considered doing in the hope of not antagonising the doctor.

And all the responses have bolstered me to stay strong about being up around 200.

So now to what's left of my post ...

A letter yesterday from my neurologist, who knows I do OMS, and says in her letter “the upper limit of normal is 160.”
She advises that my (end of September) vitamin D level is 264 (well, that’s a huge surprise for me!) and “It would be advisable to cease vitamin D supplementation and have your level rechecked in three months”.
So, here in SA we are now heading into Summer. At the end of last summer, my level was 142 and that’s when I began taking 2 x 5,000IU daily which got it up to 193 in June (Winter). Also, I began taking the vit D with evening meal instead of morning.
I plan to get it retested in 3 months. Meantime I have dropped from 10,000IU daily to 5,000 daily

I’d love to hear your comments and any advice, as I do think 264 is too high. I wonder what is the 'normal range' mentioned by George, too. Personally, I feel comfortable with the idea of 200.

Funny - I think my previous posting about Vit D was September last year when my level was 84. Possibly I have overcorrected!

Ruth
Hi,
I'm also trying to guesstimate an appropriate vit D dose. My level was 306 nmol/L in May. I'm in Melbourne so winter was about to start. My neurologist recommended decreasing my daily dose from 10,000IU to 5000 which I did. Now my level is 206 nmol/L. I am happy with this number but don't want it to keep decreasing at the same rate. As we are heading into lovely, sunny spring with more opportunity for skin exposure I have decided to keep taking 5000 units every morning and increase it to 10000 if I didn't get enough sun the day before.
I think finding the right dosage for vitamin D takes time. At the advice of my neuro, I started at 2000 IU daily. My level was 42ng/ml. After finding OMS, I raised that to 5000 IU. Then summer happened so I also added sunbathing. My level went up to 66ng/ml. I continued with the same behavior and my level dropped to 52ng/ml. ???? I was feeling tired so megadosed and started taking 10,000IU. My level went back up to 77ng/ml. I continued at 10,000IU daily and last week I was checked, I was at 103ng/ml. Wow! A little high... So now I am trying to figure out my optimum dosage. Somewhere in between 5000 and 10,000. Might take 50,000 once a week. Anyone else experience this up and down effect?
100iu per kilo of body weight per day seems to keep the level steady for people around the OMS target
Thanks, west. That puts me around 6000IU daily. I'll try it!
Hi,

As per the post by "west", I think that estimation is about right - 100iu/kilo body weight. However it did take me years to finally get there. It seems that earlier on my body needed around 10000iu/day but now around 5000iu/day is adequate. Perhaps this increased efficiency is the effect of better absorption by the body due to increased nutrition and the ability of the digestive system to process nutrients better. I am currently around 173 which I think is fine. Personally I feel I don't need to hit a "magic number". I've tested at 302 and I've tested much lower, and I didn't feel the difference. And another thing I'm trying to do is not overuse my GP. I'm aiming to get tested once or twice a year just to monitor the numbers now that I seem to have found a comfortable level.

Regards
Donna
I have never had my vit d level checked. I just take approx 5-10 IU a day. I don't get involved with my GP as there is nothing they can do for me anyway as I am SPMS. So hopefully my level is not too high... I am in the UK so I can't get much from the sun.
5000 - 10000 Iu
Hi all. Last week went to see my ms nurse. On the previous occasion I asked her to check my vit d levels, for my own peace of mind as vit d hadn't been mentioned at all by nurse or neuro on any visit.
She advised me that the result was 'fine'. On asking her to clarify, I was told it was 314. So obviously,privately, they are happy for the number to be up there, even if not recommended by the nhs. L
Hello everyone,

I hope it's ok to add on here?

I have just come back from my GP and I am shaking a little. I asked for my first Vitamin D test and for my blood to be looked at in general - I have been living the OMS programme for a year now. Asking for a Vitamin D test is considered strange here. I live in Tirol, Austria

So today I got my results. 111ng/ml (25-OH-Vitamin D3). I think this converts to around 277nmol/l so a bit over what the programme recommends. I take 5000IU supplements daily and at the time of my test we were in the middle of a super sunny couple of weeks. So maybe daily isn't necessary in high summer? Or have I got the conversion wrong?

Anyway, my GP and apparently the lab are in a tizzy. The 'normal' range in Austria seems to be is 12-30ng/ml. So they are now checking my calcium levels and some other stuff I didn't quite catch, phosphate maybe?

Have I got my numbers wrong? I have tried to explain the OMS changes to a number of neurologists and GPs, not interested, and now I am probably a 'difficult' patient:)

…ok, I'm half way through my peppermint tea and calming down.

Cheers, Karin (Kiwi in Tirol)
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