My tec delivery will be delivered on Tuesday & want to make sure I’m taking what I need. I had a relapse in Apr this year and asked my gp to check my vit d levels, which was practically zero! I was prescribed 20,000 twice a week & then it was stopped. During the summer I had a good dose of greek sunshine and I eat plenty of fresh fruit & vegetables. But to help prevent another relapse I want to make sure I keep enough in my system over the winter. What dose is everyone taking? And what else do you recommend?
I take vit b12 4000mcg, vit d3 10,000 iu (5,000 iu summer), vit b complex, Omega 3 1g, magnesium 600 mcg, calcium 300 mcg, Acidophilus and Ceylon cinnamon 1/2 tspn. With the Vit b12 I would start on a lower dose and increase to a reasonable level over time.
Hope this helps.
I am hoping I will get a call back from my ms nurse today, thanks for the heads up. Is that 10,000ius a day? I was put on 20000 twice a week in May when my bloods revealed an exceptionally low level and then told to stop by my gp after I reached optimum level again.
All I know is my MS nurse said 5,000iu a day is recommended.
Prof G from Barts MS follows the Vitamin D Council recommendation of 5,000iu a day.
The Vitamin D Council suggest a Vit D blood test result of between range 100 - 200 nmol (40-80ng) is sufficient. They say 125nmol/L is the ideal and what to aim for. They do not recommend going over 250 nmol.
I’m at 122 nmol currently, I don’t mind going a bit higher but no higher than 200 nmol.
My GP prescribed Vit D / calcium tablets for me - they say that the calcium helps our bodies absorb the Vit D - we def don#'t get enough sun…
I always get better in the sun. It csan’t be the vitd3 a s I take loads of that anyway. I have a feeling Testosterone has a benefitial effect too. This is produced by the sun aswell. I have just had my tesosterone levels checked and I will be getting my results next week. If you think about it, it makes sense. So much more women get MS than men. I started getting my first symptoms when I turned 40. This is when Testosterone starts to decrease in men.
I have read some articles that say that Testosterone has neuro protective properties.
Isn’t that a bit like saying ‘if you’re not manly enough you’ll get MS’!??
No, I’m not saying that at all. I am saying that testosterone may have a neuro protective property as does vit d3.
I take 2400iu daily. When my MS nurse was I taking it and how much, she then told me to double it in winter. That seems pretty close to Lenney’s figures. When a neuro called for a blood test, I came out at the high end of normal range - which pleased him.
Just remember that rizzo effectively had an overdose effect when on 10,000iu daily (for about 9 months as I recall). It took her several months of none at all to recover. She did report this at the time, but a search, now, could take hours.
l have taken 20.000ius daily for about 8 yrs now. And l have my levels tested every 6 months by CityAssays Lab B/ham. From a level of 8 - l am now stuck on 98nmols. Can’t seem to get any higher. We need magnesium and vitk2 to help the vitd3 get the calcium into our bones. l do all that.
Recently, on the facebook group of Biotin for Progressive MS- l read about a doctor who has been researching extremely high levels of vitd3 in patients with MS. l have just sent for his book about it - from amazon. l will get the info and post it on here for you to see.
We had just over a week of brilliant sunny days - and l made the most of them. Got my shorts and suntops out - and stayed outside all day in it. l was reading a book a day.
lf l do start taking a higher dose - l shall order several testing kits so that l can monitor my levels more frequently. The CityAssays labs do a very comprehensive test - the results they email to you. And it is only a pin-prick test. At the GP’s they usually do not give you the exact results of D3 -they add in the D2 - and their idea of ‘within acceptable levels’ is most likely out of date. NHS are usually 50yrs behind. ln fact my consultant neurotic told me that there was no test for D3 levels. Thankfully, l do not see him anymore.
4000 IU D3 and 1000IU B12 daily
and i sunbathe my mushrooms whenever possible
What are your levels then SJ? Art 20,000 iu a day, they must be pretty high.
Thanks for all your replies. Im still waiting for my ms nurse to call me back from yesterday lunchtime, so I guess it wont be until at least Monday - the day before my delivery.
Could you tell me what form you take your D3? I had been taking it in the form of a spray. Then my GP prescribed D3 with calcium. The dose is only 400 I Us per tablet and I would have to take an awful lot to get to get to 5 or 10 thousand I Us. Also I am not sure about the additives in the tablets - sorbitol, aspartame, lactose hydrogenated soya bean oil, sucrose.
What do you think? I preferred the spray. It was I think 10000 I U and easy to use.
Paradoxically, so does oestrogen, as I understand it, so a bit hard to understand how both would be protective.
Although about three times as many women as men get MS, many report worsening after the menopause, when oestrogen levels fall.
Probably imminent for me now, so will let you know. For years, before my diagnosis with MS, I in some ways quite looked forward to the menopause, and being “done with all that” (nature’s natural way of things NEVER made me feel especially womanly and sacred - just a damn pain, in every sense). So I thought being “past it” would certainly bring its consolations, but now I’m quite worried that my MS might flare up.
The one you spray into your mouth is the best type to use as it is absorbed straight into the bloodstream and your body utilises a high percentage of it. Swallowing tablets/capules/gels etc it goes into the stomach and a lot is taken up my food and passed through. Vitd3 is fat soluble.
Betteryou do a spray - and also one for babies and toddlers. Amazon is always a good place to look for it. You will need magnesium and vitk2 to help the vitd3 to get the calcium into your bones.
The book l have sent for is - The Miraculous Results of Extremely High Doses of The Sunshine Hormone Vitamin D3 My Experiment with Huge Doses of D3 from 25,000 to 50,000 to 100,000 ius. Jeff Bowles.
Thanks space jacket. Will get the spray,
I don’t think it was Rizzo who overdid the Vitamin D, I think it was me. Or at least I got up to much higher blood levels than recommended - I was up at 340 nmol/L when I finally got tested. I was worried about this but my neurologist was reassuring. He said that some doctors have done experiments getting people to levels higher than this and not seen problems. He said toxicity levels are up at 750 nmol/L.
As far as I know, I never had any problems from such high Vitamin D levels - at least I never experienced any of the symptoms listed for too high levels of Vitamin D. Last time I had a blood test to check, my levels were at 90. I’m trying to get up over 100 by taking more Vitamin D now - 10,000iU every day.
BTW, the sun is not strong enough for anyone to make Vitamin D at this time of year in this country - it doesn’t matter how long you spend outside, you won’t make any.
Angie - Do make sure you take magnesium and Vit k2 with your vitd3. The d3 needs the mag/K2 to help get the calcium into your bones. Look it up on google - We need to be our own ‘expert’. But do get your levels checked - and the best way is by CityAssay lab in B/ham. 0121 507 4278. A postal service - pin prick test. Results can be emailed to you. And it is more comprehensive then what the GP will do. And it will be D3. Cost £28. l was doing it every 6 months. Then left it for a year as my levels did not seem to move any higher then 98. So l will send for a test now - as l am going to try a higher dose - so want to see the effect.
Did not know you had a problem as well.
But, rizzo did for sure - it was about 3 years back that she reported it (don’t have time to search for it now).