Just had a call from my GP. I saw her before Christmas because I’d been having worse than normal fatigue and weakness and wanted to rule out other things before blaming my MS. Had a load of blood tests and some of the results are in…
My vitamin D level is 345! WAY too high!!!
So a word of warning: please don’t make my mistake, i.e. popping high dose vitamin D3 capsules and not getting a regular blood test to check that your levels are in the 150-200 nmol/l range - because above that is really not a good idea!
I cannot believe I was so stupid! I had regular tests in the first year I started taking D3 supplements, but not since. Doh!
Thanks for the warning Karen - I just take mine every day and assume that it is OK. Perhaps I should get it tested. Are you going to come off it altogether or try to regulate the amount that you take? Teresa xx
I’ll have to come off it temporarily until I get the level back into a safe range, then I guess I’ll have to work out what I should take to keep it there. And then not be so complacent and get my levels tested regularly!
On the upside, a lot of my recent “progression” should get better once I get it sorted out - big relief!
Let’s hope it will help you get back to ‘normal’. Feeling a bit worried now - must pass this on to my sister and her family as they are recent converts. Teresa xx
So glad you got it tested Karen. That would have given you a fright
And good to know that the MS isn’t actually getting worse
Over here in Australia, the neuros are recommending people with MS take 4000iu a day now rather than the 10,000iu that used to be recommended. Apparently the higher dose is related to an increased risk of falls and fractures and also to a higher incidence of UTIs. Why I have no idea but there you are…
i started to take 5000iu D3 and soon felt quite ill,so stopped taking them, i just didnt feel well at all on 50000iu,i dropped it down to 2000 but dont know if they are doing me any good or not, i think i am going to stop them altogether.
Its good to know we can overdose with vit.d3. My level is now 100 so a way to go for comfort, however was told to take them this winter (1,000IU x 2 daily) then come off them for the summer to see what happens.
Yes very good idea to get levels checked. Some may find theyve too low a level whereas others may have normal levels, thus dont need supplements.
i started to take 5000iu D3 and soon felt quite ill,so stopped taking them, i just didnt feel well at all on 50000iu,i dropped it down to 2000 but dont know if they are doing me any good or not, i think i am going to stop them altogether.
[/quote] Please don’t let my stupidity put you off D3 supplements. There is good evidence that D3 helps - we just need to make sure that we keep it at the right level. Best to get tested. Kx
@ Belinda: that’s really interesting about UTIs - I haven’t had any in years but had two in the past couple of months @ Bren: not sure I’d risk coming off them if I were you, unless I was getting plenty of sunshine. But then, that’s where blood tests come in rather handy! Damn shame there isn’t a simple dipstick test for vit D Kx
Like Jaki I have been trying to take 500 iu a day but they make me feel ill and seems like my symptoms are worse.
I wonder if it would be wise to stop for a few weeks, go and get tested, and then go from there… problem is I haven’t been tested for couple of years & at that time was considered ‘normal level’. But I understand the NHS ‘normal’ is way out of date.
Anyway Rizzo I’m glad you have now been tested now and can get the levels right. And thanks for letting us know.
For some reason the post I did earlier hasn’t appeared here.
I linked to Grassrootshealth http://www.grassrootshealth.net/ where you can see vitamin d EXPERTS say 200ng/ml or 500nmnol/l is the toxicity zone. Below that there is no need to panic.
345nmol/l is higher than necessary as Vitamin D is most effective as an anti-inflammatory agent at 125nmol/l so as long as you stay above that should reduce pain, inflammation and also improve immune function.
I keep my 25(OH)D around 125~150nmol/l as at that level I don’t get UTI (I have to self catheterize so it used to be a pain getting UTI and livng from one course of antibiotics to the next. Not had a UTI for years now.
I forgot to say that the half life of vitamin d varies depending on the 25(OH)D level reached so at 25nmol/l it would be around 12 weeks while at 150nmol/l it will be only 2 weeks.
so at 345 nmol/l with no further vitamin d from supplements 2 weeks abstinence should see levels down to 150nmol/l which is ideal.
It’s always safer to have money in the bank to use in an emergency. When you get levels below 100nmol/l there is absolutely no spare vitamin d for emergencies so you are living a hand to mouth existance with no reserves to speak of.
nmol/l are the UK measures for 25(OH)D and ng/ml is the way it’s measured in USA
I write both because lots of forums get US readers as well as UK ones so everyone will understand. Sorry if it’s a bit confusing.
It’s also confusing the way vitamin D is sold in iu or µg or mcgand people often say they take 1000mg daily and that is an enorous amount 1000 iu = 25 mcg or 25µg
I never knew you could have too much. I was told that if you stand out side naked for half an hour on a sunny day (dont try unless you have high fences) you would get 10000 iu.
Thanks Ted. I wondered how a high level of Vit D3 could increase the risk of UTIs too but apparently it is due to the increased risk of kidney stone formation that goes with hypercalciuria, or too much calcium in the urine, as a result of the excess Vit D3.
For a general overview on Vit D3 safety I found this article pretty staight forward and helpful
The way we metabolise Vit D3 from sunlight and the way we metabolise it from oral supplementation are different. You won’t get a toxic amount from standing in the sun.
@ Bren: not sure I’d risk coming off them if I were you, unless I was getting plenty of sunshine. But then, that’s where blood tests come in rather handy! Damn shame there isn’t a simple dipstick test for vit D