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High vitamin d levels ... Anyone had this

Hi, I take a vitamin d supplement … A high dose as I always thought this is what us msers were lacking. I’ve had my blood results back which state my level is 284. Normal range is between 50 and 150? What can be the side effects from taking too much? Also this concerns me as I give my son a supplement and he may not actually need it either? I’m not prepared to take him for a blood test at his young age to find this out either as I think this would be horrible for him. I don’t like blood tests so think a three year old would hate it. Any advice please. I’m sure there was a similar post a few months ago but I cannot find it despite using the search technique. Thanks xxx

Hi there,

Not everyone with MS is necessarily vitamin D-deficient, so indiscriminate high dose supplementation can cause problems.

However, the NHS guidelines are very out-of-date, so I’m not sure, off-the-cuff, whether 284 is grossly high, or just higher than their (outdated) limit.

The poster who had a problem was Karen (Rizzo). You might want to search her posts (but there will be a lot of them!) to find it. I know, after heavy supplementation, she found out her levels were way to high, and had (probably) been causing symptoms she’d assumed were due to worsening MS.

But I can’t remember exactly how high was “high” - sorry. (Not surprising, as I can’t remember what I had for dinner yesterday!)

Tina

x

The problem that Tina refers to was that Rizzo effectively overdid the Vit D. You can find the post here:

http://www.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/vitamin-d-word-warning

I think that it should be a sticky, or at least bumped up to the top regularly.

Geoff

Hi Lisa, I asked my nurse about dosing the boys up with vitiman D, she suggested a suplement in the winter months but in the summer little ones should get all they need from the sun itself and diet…provided they spent plently of time outdoors and at least 15/20 mins a day in the sun (or at least outside!) with no sunscreen. During the darker months i supplement them with a 1000iu a day, which the nurse agreed seemed reasonable. HTH x

Thanks guys. My little boy takes 400iu a day. My only thing with not putting any sunscreen on him is that he is very pale skinned, a red head and changes colour as soon as he is in the sun. Plus we have skin cancer in the family so I’m not sure how I’d feel about this really. Just when you think your doing the right thing you realise you may not be eh? Very frustrating. I believe from research if our pale skinned you absorb vitamin d quicker into the body from natural sunlight which I am too. Guess I need to stop the vitamin d and see what my levels are in three months. X

l get my vitd3 levels checked via CityAssays nhs lab in B/Ham. You ring them and they post the kit to you - its a simple finger prick blood spot test. The results they email to you. lts D3 we need - D2 is easy to over do - so be sure that your results are not a combination of D2 and D3. For children 1000ius is recommended. 285 is not too excessive - just cut down to every other day for a while. You are right in thinking that pale skin people do not need as much as a darker skin. The dose can be taken once a week. And for children you can get those tiny micro pills - if you got the 5000ius ones you would only need to give one a week to a small child. Our GP’s are only just learning about the importance of vitd3 - not just for ms but for everyone. Not many of them even know you can be tested. The Consultant Neurologist l saw - knew nothing about D3 - and even said there were no possible tests. For your diet to produce any you would have to eat oily fish 3 times a day - everyday. l see that many cereals and yoghurt type foods have now been ‘fortified’ with D3. ln one way this is good news - but it does make it much harder to know how much you are getting.

l started taking 20.000ius daily at first because my levels were nearly non-existant. Now l take 10.000ius daily - and after about 5yrs l have still not managed to get a level over 98. l am still aiming for 225nmols. Too much calcium can cause problems - so l do not supplement with that as l do eat lots of dark green veg/watercress/parsley etc which contains calcium.

Do you think it’d be worth stopping the supplement so I get a true reading of my vitamin d levels in three months when she repeats the bloods? Also does that mean my little boy is getting too much with the 400iu supplement I give him? Maybe o should just get him a Normal multi vitamin?Aa this will have d in too x

I’ve never been tested, but I take 5000iu and give the children 700-1200iu per day (depending on the weather!). Everything I read says its unlikely to cause problems unless you start taking massive doses. I’m not so worried about me, but I did a LOT of research for the children and 1000iu seems to be the most up to date recommendation. 200iu is standard in most multi-vits but even most of the UK sites now say AT LEAST 400iu should be given!! A lot of recent articles say the level should be 10 x the current recommendations! I just wish someone could give a definitive answer! I never let the children out without sun cream as they’re fair (although not as fair as yours by the sound of it). From what you’ve said though, I’d say your little’uns dose is fine. X

I was actually the first one that raised the issue about the fact that my levels of vitamin d had gone too high and were considered toxic. It was raised months ago and then Karen (rizzo) also had the same problem. I was prescribed 10,000iu a day for 6 months from a neurologist and on my 6 month check my levels had become toxic and it had gone up to 385 - way too high! I can not stress enough that nobody should be self supplementing anything more than 1,000iu a day without a gp or consultant involvement and nobody on here should be recommending a dose to take as each person absorbs different amounts so what might be low for someone could be extremely high for others. There are a host of problems that happen with vitamin d toxicity so please be very careful and get regular checks. 284 is too high so you need the gp to monitor your dosage and your bloods as it shouldn’t really be over 250. Rizzo admitted herself that she didn’t realise the damage she was doing with the high amounts of vitamin d. So please everyone get your levels tested and don’t self supplement without the gp/neurologist either being on board with it or at least monitoring it and certainly don’t take high amounts from advice of people that aren’t qualified

Thanks Emma. Yes he changes colour as soon as the sun hits him…actually it can be a little cloudy and he still seems to catch it. Bless him. I’m not as bad if I’m creamed well but do soon burn if I’m not. Learnt the hard way with that several times! Xxxx

Hi LisaLou,

Karen is in Australia at present on holiday and staying with me from next week. Your GP is right, 284 is too high and stopping it and re-testing in 3 months is the right thing to do. Karen did find that it took quite a long time for her levels to drop though. You should be aiming for between 125-150n/mol. Too much can cause toxicity.

As for your son check with your GP. My understanding is that dosing with up to 1000iu a day for a child in the winter months is appropriate but I am not a Dr!!! Ask if in doubt and trust their advice.

I’ll let Karen know your concerns when I see her on Sunday and I am sure she will reply when she returns to the UK but it won’t be before then as I won’t let her near the Boards I’m afraid! She deserves a break

B

Thanks B … Don’t blame you on letting her have a break. Hope she has a lovely time with you. Thanks for the reply. X

YW

B

Just quick question suddenly stopping vit d won’t cause any problems will it esp if my level lowers too much before my next blood test? X

Hi My Neurologist told me to take 4,000 per day (thats 4 x Holland & Barrett 25ug tablets per day but I read in the Mail on Sunday that Professor Jelinek recommends at least 5,000 - all very confusing as on the back of the bottle it says to take 1 tablet per day. I don’t want to overdose and cause other health problems in the future. Any ideas?

When I informed my neuro that my vitamin D levels were 437 nmol/L, he said that at least one study of people with MS had been trying to get them up to vitamin D levels of 400 and that I was unlikely to be seeing ill effects. At least that’s my memory of what he said - have to put a health warning on in case I misremembered the study part. I was definitely up over 400 and he was definitely reassuring about it. He said vitamin D levels over 700 nmol/L were toxic. He’s a top neuro and (I think) trustworthy. We did not talk about the effects of chronically high levels over a long period.

The neurologist I saw said take 5,000IU per day, but now I think about it he said no need to take if out on a sunny day. He also asked if I drink a lot of milk/yoghurt (high calcium foods etc) - too much calcium combined with high dose Vit D has been linked with stone formation, I think. I keep meaning to read up more about it. He also said to skip omega 3 fish oil supplement on days eat oily fish. He said on a sunny day the body can make 20,000IU of Vit D just in 20 minutes. (Not certain of exact figure but loads!) I try to have short period outside before putting sun screen on - I spent years religiously applying sun screen before going out - thinking that was healthy - unintended consequences and all that! Bea x

What you need to do is to contrast the statement by Mark Walker:
“- Take 5 to 10,000 IU a day of D3. It is very cheap and safe for adults.”
with the experience of rizzo set out in:
http://www.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/vitamin-d-…

And then take note that Mark Walker’s theme is the promotion of CCSVI.

And 2 questions:
Is it true that Mark Walker left the UK two years ago, and is now a “Life Coach” in Paris?
Is it true that Mark Walker was an inductrial pharmacist in the UK, not in the over-the-counter health business?

Geoff