Sticky Blood-Hughes Syndrome Support
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Vitamin D

Hi all

I want to start the vitamin d protocol on the vit d wellness forum on Facebook which involves me taking 5000iu a day of vit d3 with vit k2 and magnesium.

I am not yet diagnosed and according to Dr Situnayake he does not think I am showing signs of Hughes but I have had one single lupus anticoagulant positive and more tests to be done.

I currently take 75mg clopidogrel as I was diagnosed with possible TIA some weeks ago although there is debate as to whether it was in fact hypoglycaemia.

What are you thoughts on the k2? I am told it is k1 that increased ability to clot and that k2 is actually a positive support for stuff arteries.

Many thanks


Ps not sure whether I should take that much vit d if I can't take the k2

12 Replies

That sounds like a very large dose of vitamin D. I don't think I was taking that much even when diagnosed as seriously deficient. It is possible to overdose on vit D and become very unwell. Safest to ask for a blood test for your vit D levels and then take suggested dosage. Or get advice from your pharmacist/

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If I were you I should wait till I see the Specialist who is taking your bloodtests next time for the antibodies. Call him and ask to be tested for D-vit and all the other tests that Mary F talks about as B12, Ferritin and a whole Thyroid-panel, if it is not already done, to see if you are low in D-vit.

As Panda says you may well overdose. I take 800 IE D3 together with Calcium but that is on my Specialists recommendation and prescription.

Best wishes from Kerstin in Stockholm

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Thank you all. I am going to go to a nutritionist I think so I don't get it wrong. :)


I take a fairly hefty dose of vitamin D, and my blood tests look fine, but please do liaise and talk with your main medical consultant regarding any new vitamin, supplement or medication it is important you do this. I notice you have passed one test for Hughes Syndrome/APS, and I expect you may pass more in the future, just keep pushing to repeat testing regularly MaryF


Thanks Mary. I'm hoping to go up to 5000iu per day. Do you take vit k also to balance it or not? I am not sure I have symptoms now and if the blood sugar issues did cause the stuttering that they considered a possible TIA maybe I am

One of the lucky ones that just carry the antibodies? I don't know I find the information very confusing as there is so much still to learn about the disease. Let's hope for more positive breakthroughs in the future x


I'm a bit if a rebel on this subject. I found and refer to a web site from Norway (?) on sunshine/ vitamin D levels based on date, latitude, cloudiness, skin exposure. If I don't glean enough D through sun exposure I take myself to a tanning bed for a very quick stay.

The manager of my local salon is female, about 55, ,with bronzed very wrinkly features. She always prods me to stay more then my max time of 8 minutes " so you can get a great tan. You're already paying for it. Why not stay longer and get that nice tan?" I reply " Because I just want the Vitamin D, and not the tan or the melanoma." ( I politely do NOT add " and because I don't want to look as wrinkly as you in a few years." )

The advantage of VitaminD through the skin is that it is not only manufactured but also stored in the skin and is released into the blood stream only in responce to body needs and orders placed. So, my INR stays constant.

But this season our weather in WV has been so crazy warm I've been able to meet my sun exposure goals with my daily walks outside. So --no debates with the bronzed booth lady.

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Just re checked the web for a Vitamin D sun exposure chart, and I found this new one:

As you may read, it doesn't take much -- about 45 minutes for my latitude in the winter if wearing shorts and a T shirt. And with our insane December temperatures, if I DONT have shorts and T shirt on while walking up hills I get too hot!

Of course, I know that you Brits over the pond have lots more cloudy days then here in W.Va. Sorry.

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Thanks Gina x


When I was <25 Vit D deficient I was prescribed 20,000iu Pro D capsules from Synergy Biologics to take 3 x per week for 3 months. I was then put on a maintenance dose to maintain. Frankly unless you are over 80 you should be supplementing.

Ive said many times on here that Prof Shoenfield advocates all his patients take Vit D as a matter of course as it reduces inflammation and therefore antibody levels. He believes he can get all his patients antibodies down by using Vit D and there is a great deal of evidence to support this. He does not even bother to test levels to start with because you would need to be taking 50,000iu a day to get toxicity. The RDA is around 600iu so if you are in the normal range anyway this would be ok to take as a supplement because its what you would get from your diet or sun exposure.


Thank you. I am thinking of following the vitamin d wellness protocol from there Facebook group which is 5000iu a day but worried about not taking vit k with it x many thanks x


I don't believe that you can over dose on vitamin D3 with that amount. However, too much vitamin D3 could cause you to make too much calcium.

What I have been reading lately though is the need to take K2 with D3.

Like this:-

I would have your vitamin D tested (and also your B12, ferritin and folate whilst you are about it)



Thank you yes I have had them tested and my b12 was mid range so needs to come up a bit. Many thanks


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