36 posts Page 4 of 4

doesn't sound that level is critically high. There are no single evidence of vitamin D toxicity anywhere, I still to find such person.
The only potential toxicity is kidney calcification. But by avoiding diary products and drinking at least 2.5l water unusually high levels shouldn't be a problem. Mine vit. D level is >850nmol/L for more than 2 months now, feel fine.
Dx 2015-02 (RRMS), REBIF 2015-03 till 2015-07, OMS 2015-05, High vit D. doses 2015-08
Hi Everyone, my wife has RRMS and has been dealing bouts of dizziness as of late. We have been taking 2 x 5000 IU daily since her last relapse and have been working to adhere to the OMS program as close as possible.

My wife went to a new GP as hers retired, her previous GP refused to give her a Vitamin D test. Her new GP gave her a vitamin D test, and it came back with 220.. whatever that means. Her GP told her that she has Vitamin D toxicity and that was the cause of the dizziness, and that it would take 3 months for the levels to lower and the dizziness to subside. Fast forward a month later, the dizziness is still present from time to time, sometimes its really bad.

During this time my wife has not taken any vitamin D, she hasn't been feeling the greatest. She has gone for NUCCA chiropractic, which has helped a bit with her overall symptoms (dizziness, odd numbness, fatigue, vision focus issues), but last week the NUCCA doctor had to adjust her again as she was out of alignment.

I am looking for the exact location of the documentation we can print out to bring to the GP so we can argue our point, also the print out of the OMS program so we can have an education discussion with him.

Any feedback and links we could use is greatly appreciated.
Hi Haymaker
Re "220 - whatever that means" - it depends on where you live. You need to know what the unit is - i.e. ng/ml or nmol/L. OMS recommends keeping Vit D levels above 150nmol/L - which is 60 ng/ml (the conversion factor is 2.5). In Australia they reckon that 50nmol/L is the lowest you should be, which is quite different to the OMS recommendation, and much lower than what some MS specialists recommend.

Did the GP also test your wife's calcium levels? High blood calcium levels are what Drs are worried about with high Vit D levels.

In dealing with conventional medicos you often need to be "strategic" - they frequently won't accept things that were not covered when they went through medical school and if they have closed minds will often be dismissive of anything which they do not consider to be "mainstream wisdom" (and the age of the GP is generally of absolutely no relevance - some older docs have open minds as they have been around long enough to realise they don't know everything, and some young docs have closed minds because they haven't been around long enough to learn that they don't know everything). It is quite likely that you will (sadly) get nowhere with trying to educate the new GP about OMS - but good luck with trying.

I have had success with my GP by using information sources which are more conventional, but which still support what I want to get across. The Vit D Council is quite good in this respect.
http://www.vitamindcouncil.org/about-vi ... vitamin-d/

My first MS symptoms nearly ten years ago were poor leg function and dizziness/balance problems. An ENT specialist I was sent to see told me he thought my dizziness/balance problems were Benign Paroxysmal Positional Vertigo (BPPV) and when I looked it up a couple of years later it was clear to me that I did not have BPPV at that time, although I have since developed the condition. My neuro accepts that I do know the difference. So, it might be worth asking some questions about this - it is quite different to the balance/dizziness problems that many PwMS have so it is useful to understand the positional triggers of BPPV dizziness.
https://en.wikipedia.org/wiki/Benign_pa ... al_vertigo

Good luck with it all
Nonsense - many people have vitamin d levels occurring naturally that are around 220. Where does the GP get the evidence that vitamin d levels of 220 cause dizziness and/or constitute toxicity? Dizziness is a symptom of MS. Reducing vitamin D levels may actually make dizziness and fatigue worse (that is my direct experience telling you this after following similar advice a GP)

http://overcomingms.org/recovery-progra ... vitamin-d/

I am sorry that the two of you have to deal with this ignorance. Please see the section on vitamin D and MS and this from the encyclopeida section of this website:

"There is evidence that optimal levels in general are much higher, and almost certainly so for people with MS. The recommended daily allowance of vitamin D in Australia is 200 IU. This amount of vitamin D is way too low. It is based on the amount required to prevent rickets. It is equivalent to the amount of vitamin D your skin would make in 6 seconds of all-over sun in Perth on a summer’s day. Vieth and others have shown that in sunny countries the vitamin D levels should be at least 100-140nmol/L, and more like 135-225nmol/L, while a level of 200nmol/L may actually be optimal.25 Others have suggested a level as high as 250nmol/L may be optimal.26 To achieve a level of 100nmol/L requires daily intake of about 4,000 IU of vitamin D for people who get no sun. To get to 140nmol/L without any sunlight, you’d need to take about 10,000 IU a day. It has been shown that the average healthy man’s body uses about 3,000 to 5,000 IU of Vitamin D a day,

It is not possible to get vitamin D toxicity from the sun. Only supplements can potentially produce toxic levels. However, the only published toxicity is from supplements of 40,000 IU a day."

My suggestion would be to find another GP. The dizziness could be MS related or could be something else - that needs to be further investigated. I am not a doctor - I hope that George or someone suitably qualified finds this post, but in the meantime, consider taking at least 5000 IU of vitamin D per day - when I took my GP's advice to stop taking vitamin D it lead to a nasty relapse.
Interesting conversation going on here, I had my first MS symptom of optic neuritis last October and my vitamin D level was 80 then, I followed the advice here and took two megadoses since then and am now 160, with no relapses...my GP is getting switchy but I keep telling her ( I'm a registered nurse ) that the MS guidelines are higher than regular...so far she's gone along with me...I take 10,000 daily and intend to keep taking that until I get up around 200. I'm a remote area nurse and the GPs here tend to do whatever I ask, so I'm lucky in that respect but I'm very reliant on the info from this site.
I have just had a phone message from my GP as my latest blood tests have shown an increase in Vit D levels from 149 to 264 in the space of three months.

I have been taking 10000iu daily since diagnosis one year ago. I also took a megadose of 50000iu three months ago as I wanted to boost up but now it seems that was not a good choice as I didn't take into account the sunshine factor (I've been lucky with weather when I've been on my summer holiday - I'm a teacher).

I'm planning now to drop to 8000iu daily as I read an earlier post on here by West that a good rule of thumb is 100iu per kilo of body weight. I don't want to drop too low as we are now going into six months for dark and cold in the UK and I feel so well that I don't want to upset anything.

I have read that levels under 364 won't cause any problems but I'd rather be in George's suggested zone of 150-225.

Any advice/insights/personal experiences would be very welcome.

TuffMum x :)
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