Hi. My GP has just advised me that my vitamin d level is too high at 157.2. Apparently 50 is normal. I take 5000iu vitamin d per day but my GP has advised that I reduce this. Has anyone got any experience of this please? I am seeing my neurologist next month so I will ask him what his opinion is but I’m not sure what to do in the meantime. Thanks.
The Barts Blog is pretty clear on this and worth reading.
“To remind you it is our policy to advise all our patients to ensure they are vD replete; we aim for a plasma level of 25OH-vD3 of greater than 100 nmol/L and less than 250 nmol/L.”
http://multiple-sclerosis-research.blogspot.com/2016/01/researchspeak-moderate-dose-vitamin-d.html
I DO have experience of this.
I used to do the same as you and took too much vit D3 thinking it was harmless to self prescribe and get the dose too high.
I began getting a painful swelling in my neck. This became serious and my GP suspected a stone in a salivary gland and sent me for an ultrasound…a stone was confirmed. It became infected and painful and I had to have the gland removed.
I had the operation and was left with a crooked mouth for a few weeks because the gland had fused itself to a nerve and was ‘scraped’ off according to the surgeon.
I was asked if I was taking anything prior to the operation and showed the doctor the bottle and how much I was taking…HORROR!
High doses of vitamin D causes stones, these stones (calcium deposits) can occur in many organs including the kidneys.
I now have my vitD3 prescribed and I suggest you do what your GP says.
Do, please, note that rizzo (she who wrote the sticky on the brain and MRIs in the “Before Diagnosis” forum) did commit to a daily intake of 10,000iu of Vit D3 a few years back, did also effectively overdose (in a manner similar to Florence, above).
She had to stop the Vit D3 for several months to get her level back into the low end of the Barts recommended range.
In my case, after a blood test, my neuro wrote that the level (at 93 - the high end of the “normal” level) was about at where he wanted to see it.
There is also the Coimbra Protocol, which uses very high levels (and doses) of D3 (based on body weight) and which works for some people.
Just remember that we are all different, so is our MS, and so is our response to any medication or dietary supplement.
If you also happen to have changed diets, or started something like Biotin, you cannot be really sure as to what has had which effect.
Geoff
It wasn’t Rizzo who had very high levels of Vitamin D, it was me. I was up at 345 for a while - it didn’t seem to do me any harm and my neurologist was calm and reassuring about it. Toxic levels of Vit D are 750. However, you can get problems if you are taking calcium and Vitamin D. I have never done this.
I didn’t add that I was taking 20,000 units a day…way too much.
I had not realised that you also had high Vit D levels.
However, rizzo did indeed make herself very ill when taking 10,000iu daily.
From memory this would have been about 6-7 years ago (ie in the days of the previous forum).
Did you get any nasty side effects from your high levels?
Geoff
lt is the calcium that causes ‘toxic’ results. lf you are taking vitd3 - make sure it is NOT the nhs prescribed type - as they not only contain calcium but harmful additives. The pure oil softgels 10,000ius - preferably Olive Oil ones are best.[Amazon] l am following the Dr Coimbra protocol - and keep to a low calcium dairy free diet- plus l take magnesium malate/glycinate/chloride/ and B2/B12/k2 and l have to drink 2.5litres of water. The water l get from Morrisons - Yorkshire Vale - as it has only 6mg/l calcium in it. lt is the calcium deposits that cause problems of stones.
l feel much more energised from taking a high dose vitd3 - You need to be supervised by a Coimbra trained doctor to follow successfully and safely this treatment. As your ‘prescription’ is based on your weight and blood-test results. Some are taking 400,000ius daily with good results. l take 60,000ius. My chronic lBS has gone - so has my frozen hands and feet.
Vitamin D3 and Magnesium work together to keep calcium in your bones - not floating around kidneys etc. causing calcification - stones.
Look at fb groups - High Dose Vitamin D for Auto-immune diseases. And an excellent book to get [from amazon - or download] is Ana Claudia Domene’s Multiple Sclerosis and lots of Vitamin D.
l get my levels checked by CityAssays Lab. lt is a postal service using just a pin prick test. And my level is 333nmols.
Dr Cicero Coimbra is a Brazilian Neurologist who has been treating Auto-immune patients for over 12 yrs with his protocol which is not just vitd3. He has trained many doctors/neuros/nutritionists how to follow his protocol. And he does this for free. You can get a skype or whatsapp appointment - the nearest to UK is Michael Cawley Dublin. cawleymjd@gmail.com a nutritionist who also has MS.
ln UK - our GP’s prescribe Fultrium and Adcal - both which are banned in other countries because they contain too many
harmful fillers. Vitamin D Deficiency UK group will explain how bad these are although they do not follow the tried and tested Coimbra protocol - but they do know about the UK supplements Adcal and Fultrium that are so dangerous.
Before l learnt about Dr Coimbra - l was taking 10,000ius vitd3 in summer and 20,000ius in winter - l did this for several years and my levels - which originally were 7nmols eventually reached 98nmols. My bone-density is very good after supplementing with d3/magnesium/k2.
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