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Vitamin D

Hi all

Hope everyone is coping with the cold snap, heavy rain and wind here today.

I recently had an appointment with the neuro, and he has now sent a letter to my GP informing him that my vit d is 12.5 which apparently is very low. He requested that I be put on a high loading dose which is 25000IU twice daily, followed by a management dose of 5000IU daily, as well as the Adcal D3 twice daily that I have taken for yonks.

This seems to be a huge dose, and it has worried me, and I am just wondering if anyone else has taken such a large dose, or knows what the number vit d is meant to be please? I know I should have questioned my GP when he rung to tell me, but I was just concentrating on the information he was giving me and was shocked to say the least.

Pam x

Your consultant is very well informed and has suggested a Loading Dose to boost your level of Vitamin D

Learn more about how high levels of Vitamin D might help you

Search online at:

  • Vitamin D Wiki ***

  • Vitamin D Council

  • GreenVits

  • Grass Roots Health

  • Overcoming MS

  • Terry Wahls

​*** There is information here about a protocol from Dr Coimbra in Brazil that uses massive amounts of Vitamin D, but it has to be done under careful medical supervision so that you don’t get a calcium overload

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It’s not too much according to the Barts Blog and you do need to get your levels up a fair bit, so should be fine. Multiple Sclerosis Research: #ClinicSpeak & #ResearchSpeak: what dose of vitamin D?

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I’m on 5000iu daily (4 years) and have developed kidney stones, so monitoring your levels is very important.

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I was prescribed vit D at the time I first had severe mobility over 4 years ago . I was initially prescribed a high dose then a lower one . I haven’t taken it for a long time I forgot to but didn’t think it was so important. I didn’t have a great gp and was left to get on with it. I’ve changed my practice now and the new doctor is great she’s sent me back to the neurologist. I’ll ask when I see him . Michelle and Frazer

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Hi Rufus

Thanks for this, I know vitamin d is essential, but just could not get over such a high dose. I have started it so we shall see.

PAM X

Hi Whammel

Thanks, I must admit I was shocked with such a huge dose as I have been taking Adcal d3 for years and no one had suggested getting the level checked, but will ask myself in future.

Pam x

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Hi Jactac

I will ask in future that the levels be checked, thanks for the advice.

Pam x

Hi Michelle

I hadn’t seen the neuro for years, just the ms nurse and GP, and at my last ms nurse appointment she advised to see him, which I done, and immediately put me on Simverstatin and then wrote to GP about my vitamin d level with instructions on this high dose.

I shall make sure in future that I ask for regular vit d level checks. I have started the high dose so will see if any improvement.

Alfie days Woof to Fraser.

Pam x

My sister used to have Vit D injections once a month. My GP once said if you have to much you just pee it out. Don

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Thanks Don, hope you and Heather are doing ok x

Bloody freezing here today.

Pam x

Pam,

Just out of interest, I have been taking 5000iu daily for over a year now. I had my blood level checked in June and the result was 180n/mol. As you can see from the Barts Blog recommended by Whammel, the optimum range is between 100 and 250.

I am sure your results will achieve these levels before too long after your initial high dose blitz.

Best wishes

Alun

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The way it was explained to me is that although a person on a high dose of D3 can have their D3 levels monitored this still don’t indicate if the higher levels are causing issues with the kidneys, such as stones developing.

My levels of D3 went from 34 to 119 on the last count, this took over 4 years to reach this level, taking 5000iu daily.

Over the 4 years I’ve had a number of blood tests done to monitor my D3 levels, and each time they showed an increase, which in my mind was a good thing because all along I’ve been told by the MS team that I needed to get high levels of D3 in the body, however there was never any indication that kidney stones were developing, it was only after a CT scan was carried out last year, for a totally separate issue that it was noticed I was developing stones, and even then although my GP had previously questioned the dosage and high levels she did not say to decrease the D3 because it was the neuro at the MS clinic who had suggested this dosage in the first place.

Because I was taken into hospital last weekend with the kidney stones (no fun at all), and the Urologist had mentioned that it was very possible that the higher dosage of D3 had probably been the catalyst for the stones developing I rang the MS clinic yesterday and raised my concerns, I was told that I needed to reduce the dosage of D3 by half (2500iu) straight away.

What really needs to be done alongside having your D3 levels checked is a kidney function test which can sometimes pick up if things are not right.

However, each time I’ve had a kidney function test done over the last 4 years there was never an indication that stones might be starting, it was only the CT scan that picked up on mine.

Hi Jactac

Thankks for this, I am really glad that I only have to take the 50000IU for one week and then 5000 thereafter, but have taken your information on board, and will request the kidney test alongside the vit d level test.

It appears that it is good in one way but can be detrimental in another, quite worrying really.

Pam x

Hi Alun

Thanks, after reading Whammels link I was surprised how low my was, and can now understand why the neuro wrote to the GP, but can honestly say that I had no idea, I can’t remember what ‘normal’ feels like.

Time will tell I suppose.

Pam x

Obviously we all need a good balance that includes Vitamin D, but those with MS tend to be told by their MS team to get higher amounts of the D3, which is easy enough, but I found in my case that the MS team didnt really follow this up. All they were interested in was whether I was still taking the 5000iu daily and if so “get your GP to check your levels to see if you are getting good high levels” ! Nothing about possible calcium levels going to high or effects on the kidney. It was only after the stones were detected that they suggested halving the dose.

When you look into the effects of D3 and MS its still only a suggestion that there might be a link between MS and low D3, however it’s a medical fact that very high continued levels of D3 will definitely cause problems.

So I think, especially after what I went through last weekend, all neuro’s who advise us to go onto D3 at high amounts should as a matter of course arrange kidney function tests AND CT scans at least yearly., and not leave it the patient or GP to keep a check on these things.

After all it’s the neuro who advises any medication and dosages, and who’s prime care you will be under.

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Sounds like a good idea Jactac for the neuro to arrange tests routinely.

Pam X

Hi Pam,

I was on 5000iu and I also developed kidney stones so Dr Martin put me on 1000iu a week but I took 5000 for years with no trouble…as long as you get your levels checked every now and again you will be fine.

Hope all is well with you, take care,

Love,

Nina x

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Hi Nina

It was Dr. Martin that put me on this big loading dose, going down lower thank goodness, but I will remember to ask to have it checked.

I am doing ok(ish) thanks, and I hope your operation went well and has proven successful.

Take care

Pam x

lt is worth joining Coimbra Vitamin D Protocol for MS and Autoimmune disorders. Or High Dose Vitamin D for MS. And do get Ana Claudia Domene’s book [amazon] Multiple Sclerosis and lots of Vitamin D.

Vitamin D does not cause kidney stones …calcium is the cause. Which is why on Dr Coimbra’s protocol you have to cut out all dairy from your diet. And take magnesium and B2/K2 /B12 and depending on your blood tests etc you might need other mineral and vits. The Coimbra Protocol is not one size fits all - which is why you need to get somebody trained in the protocol to assist and monitor you. Our GP’s and Neuro’s know very little about vitamins and minerals. And what our GP’s prescribe is not a good form of vitamin d. You need to take a daily dose of a pure vitamin d oil- and it needs to be in softgel form. The prescription type has lots of un-necessary additives in - some of which are banned by FDA and Europe.

You must also make sure you drink 2.5litres of water with a low calcium content. Tap water is fortified with calcium - so l get my water from Morrisons. Yorkshire Dale - it has a low calcium count 6.8. l also can only eat a few nuts a week - too many also jumps the calcium level up.

The magnesium works well with the D3 - puts it into your joints/bones where it is needed - whereas calcium gets into your blood supply/arteries and into kidneys and liver.

Do read up on Dr Coimbra - join the group - lots of help. And it is cheaper and safer to get your vitamin d3 online - Healthy ~Origins. Softgels. and better for you then what your GP prescribes.

CityAssay Labs B/ham do a postal service for Vitd3. Just a pinprick test. l get mine tested annually now - l did do it every 6 months for sometime.

Michael Cawley is highly regarded trained Coimbra Nutritionist - Dublin - and he has MS. You can contact him by email cawleymjd@gmail.com for more info.

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