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ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Wed Jun 20, 2012 11:02 am
by orshi
Good afternoon everybody from "sunny" England.
My name is Orshi originally from Hungary living in GB the last 7 years. I was Dx 6 years ago, pretty sure now that the move to a less sunnier climate, and a specially bad winter brought my first relapse on! I started supplementing with vitD befoe i checked my levels (i know it was not wise) i supplemented with 5000IU/day for about a month beofe i had the test done. I KNOW I SHULDNT HAVE DONE TO SEE THE BARE MINIMUM AS A RESULT :(
one of my biggest problem is fatigue wich is usually worse in the winter (suprise suprise :) now i know why! )

my resutls r back now:128.4nmol/L what do u make of this? doesnt read that low right?
i feel a bit better since supplementing,also it is a lot of sun is out now wich is quite unlikly in Oxford but im still way off the recommended optimal 200nmol right? should i do a mega dose or not? how much?

PS i was on swank for 2 years and just about to go OMS all the way!

Thank you very much, apriciate any advice
Orshi

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Wed Jun 20, 2012 1:23 pm
by Susan Doumbos
Hi Orshi,

I would take a megadose again.

After two megadoses and daily supplements of 10,000 IU, my level only got up to 134, and therefore I took another megadose. Felt quite wonderful after that!

I think the slowness of the rise is due to my obesity .... Vit D is fat soluble, so as I lose weight my levels should rise.

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Wed Jun 20, 2012 1:34 pm
by Cinderella
Hello Orshi,

I live in the UK too and have to admit that the climate is especially bad at the moment. I started supplementing around March after MS diagnosis. I took a megadose of 60,000 units in the first week. I took this over two days in tablet form. Since then I have been supplementing at 10,000 units a day. On very sunny days I take 5000 units. My only blood test was taken about 6 weeks ago and the result was 160 which I found disappointing. I am aiming for 200.

Your level is also too low and I would consider a megadose and / or increasing your daily dose on cloudy days - which is most days.

When I told my neurologist what I was doing with vitamin D he told me I was taking far too much and must stop. However, I don't intend to reduce the dose until I hit 200. He insisted on another blood test which I haven't had the result from yet, but I'm hoping it will be a bit higher. I will get tested again around November to see how I am starting the winter.

I am also considering getting a light box for winter which is supposed to combat the feelings of fatigue brought on by so little daylight. All my major MS relapses have been in winter.

I hope this helps and I'm sure other people will post their views.

Cinders

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Wed Jun 20, 2012 8:37 pm
by Wendy:M
The recommended megadose is 150,000IU which should get your level of 128.4nmol/L up to around 200. The recommended range for PwMS is 150-225 nmol/L so you are currently deficient, Orshi. 60,000 is not really enough for a megadose as you are deficient.

http://www.overcomingmultiplesclerosis.org/Resources/ FAQ #4 in the Vitamin D section
http://www.overcomingmultiplesclerosis. ... Vitamin-D/ last section deals with daily dose and megadoses

Vitamin D has a very beneficial effect on fatigue levels.

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Tue Jun 26, 2012 10:14 am
by orshi
Thank you very much , i apriciate all your comments verymuch

more info:

the privatley done test came back as vit d level 31.2 nmol/L, and then they seperated it into 128.4 for D3 and 2.8nmol/L for D2, that is why i told you guys the D3 level. that is what i have to right?

im only asking because a day later after a lovley sunny day i had my other test done organised by my gp. the test result came back, but tehy do not separe the D vitamins, it was an overall result of 162.4nmol/L considerably higher than a day before taken sample with the private company. I think i have to go private if i want to check my levels as the NHS free version is not good enough right? or i shouldnt be interested in the separation?

also when you should re test yourself after a mega dose? because its gonna cost me money every time i do, i need to make sure i do it when it is needed, and how often.

I know it is a lots of question but im trying to start right in a first place, thank you all wise people :)

Orshi

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Tue Jun 26, 2012 3:11 pm
by Cinderella
Hi Orshi
I have my level tested through my GP who outsources the testing to someone else. It is probably the same place that private testers use and I doubt and NHS testing will be substandard. I am not sure why the levels are shown differently - perhaps someone else on the site will know. If not, your GP should be able to explain the difference.

I think testing spring and autumn is sufficient - then you know your level is high enough to get you through winter, then at the end of winter you can check you are still ok. That is what I intend to do anyway and my GP is happy to oblige. I know you will be taking a megadose, and you could test a few weeks after to put your mind at rest, then settle into twice yearly testing and daily supplementation.

I hope this helps and I am sure other people will add their views.

Cxx

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Mon Jul 30, 2012 9:37 am
by orshi
Good morning all nice people! :)

i talked to my gp and she had no idea why is the difference (her test is 164 nmol/L and the private test 131.2...hmm good news hey?:(
if she doesnt know what chance i have?!?!?

so i called up the private hospital, and their explanation was everybody test differently, and it gives different results!!!! i have no ide now how should i react. should i base my drem level of D3 on the private hospital level or the GP's it is a big difference between the two!!!

please help me, what to do, Iam aiming for the 200nmol/L.........................................
i took the megadose 150/000nmol/L and taking 10.000IU since..........................

thank you very much!!!!
Orshi
xx

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Mon Jul 30, 2012 10:05 am
by canberran
Hi,

Great information contained in this link to an Australian webste. There are different readings for tests because you are different every day, and there are different protocols for testing.

Hope this explains,

http://www.abc.net.au/radionational/pro ... ng/4148568

Makes interesting reading.

Regards
Donna

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Mon Jul 30, 2012 1:42 pm
by jossi
Hi all,

I have a question about the megadose (150.000 IU): why 150.000 at once and not (for instead) 3 days of 50.000 ?

Jossi

Re: ADVICE NEEDED PLEASE! mega dose or NOT?

PostPosted: Mon Jul 30, 2012 8:36 pm
by korimako
As it's important to get your level up to at least 150 nmol/L as quickly as possible, so why not do it in one hit rather than drag it out over 3 days? George does say doses even higher than that are quite safe.

Bear in mind your normal daily dose just maintains your vit D level, so 50,000IU is really not that much.