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confusion about vitamin D levels (Read 6842 times)
cc45713
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confusion about vitamin D levels
Jul 15th, 2014 at 2:56pm
 
Hi this question is for batch but any help would be appreciated.

I started my cycle about two weeks ago and came here looking for information regarding new treatments. I found the anti-inflammatory vitamin d regimen posted by batch and want to try it out but I just got back my report for my vitamin d levels from a blood test at the doctors and he says my levels are a 92 which he says is great. Now I'm confused. Can I safely do the D3 regimen? Will my numbers go too high?

I thought that people in a cluster cycle were supposed to have low numbers not high numbers. Is this normal?
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blacklab
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Re: confusion about vitamin D levels
Reply #1 - Jul 15th, 2014 at 6:47pm
 
hi cc,
         firstly welcome !
where abouts do you reside ?  there's two measurements of this, if it's "nmol" which is how the readings in aussie or Britain are measured in, then that's too low !!!
give us a bit of info about yourself, then im sure some advice could be given.
regards
col
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cc45713
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Re: confusion about vitamin D levels
Reply #2 - Jul 16th, 2014 at 4:32am
 
Thank you for the welcome!

To answer the question, I live in Canada. Toronto, Ontario to be more specific. I'm not sure of the measurement method used here, as I don't have the paperwork. My doctor has that. Possibly another canadian has that answer offhand.

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cc45713
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Re: confusion about vitamin D levels
Reply #3 - Jul 18th, 2014 at 12:09pm
 
I received a reply from my GP. I was told it's metric so it's nmol/L.

I now understand it's on the low side of normal. Would it still be considered too high to begin the vitamin D regimen? I hope not, because I just received my vitamins yesterday.
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blacklab
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Re: confusion about vitamin D levels
Reply #4 - Jul 19th, 2014 at 4:00am
 
hi,    have a read thru batches graphs
  the green zone is minimum 160 (from memory )
I sit around the 200 nmol generally, and am currently lifting that slightly to get rid of shadows.
Don't forget  ALL the other co-factors that are listed, they all contribute to the d's absorption.
I'd be taking 20,000 vit d3 per day, as well as a once a week 50,000 dose for 2 or 3 weeks, then get tested again to see where your level then stands,
But I re-iterate, get all the other co-factors, fishoil, magnesium calcium, vit k2 ( m7 & m4) and the multi vitamin.  I take everything at night with the largest fatty meal, which aids in absorption. If your taking a preventative like verapamil, make sure you take that in the morning as the calcium can muck up the effect of the verapamil.
I first tested at 53 nmol, and the doctor told me I was still within range !!
problem is that they are reading graphs that were from the 1960's, totally outdated !
good luck, let us know how you get on

colin
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Batch
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Re: confusion about vitamin D levels
Reply #5 - Jul 19th, 2014 at 2:56pm
 
Hey CC,

A 25(OH)D serum concentration of 92 nmol/L (36.8 ng/mL) is high enough to prevent rickets and promote building bone mineral density...  but it won't do diddly to prevent cluster headache... and a lot of other medical problems...

The following chart tells the story you need to understand.

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As you can see, your serum concentration of 25(OH)D at 92 nmol/L has you in the CH red zone.

The 70% CH pain free "green zone" is a raw average over the 25(OH)D serum concentration range of 60 to 100 ng/mL, (150 to 250 nmol/L).  The latest survey data suggests the number of CH'ers experiencing a lasting pain free response increases as the 25(OH)D serum concentration increases across this range.

80 ng/mL, (200 nmol/L) is a good target 25(OH)D serum concentration to shoot for in your first month of taking the anti-inflammatory regimen.  After that, 10,000 IU/day vitamin D3 is a good average maintenance dose that should keep your 25(OH)D serum concentration near 200 nmol/L.

Most CH'ers who have started this regimen in the last year and had their 25(OH)D results come back around 30 ng/mL or less, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking just the maintenance dose of vitamin D3 at 10,000 IU/day... 

You'll need to start a vitamin D3 loading schedule taking 500,000 IU of vitamin D3 over the first four weeks on this regimen.  The average 25(OH)D response to a total of 100,000 IU vitamin D3 over a four week period is 10 ng/mL, (25 nmol/L).

I know that sounds like a lot of vitamin D3 but it works out to an average daily intake of 20,000 IU/day over the four weeks.  It's best to front load this dosing schedule in order to build 25(OH)D serum concentrations as fast as possible...  and this will help you experience a pain free response as fast as possible.

Start with a single dose of 10,000 IU of vitamin D3 for the first day.  If you haven't had any reaction to the vitamin D3 after 24 hours (allergic reactions are very rare), start the following 22-day vitamin D3 loading schedule while taking all the other supplements in the anti-inflammatory regimen:

2 weeks @ 20,000 IU/day vitamin D3 plus a 50,000 IU loading dose on top of the daily intake once a week for the first two weeks.

8 days @ 15,000 IU/day

On the 23rd day, drop the vitamin D3 intake to a maintenance dose of 10,000 IU/day and try to get another 25(OH)D lab test.  The average response to this loading schedule should be around 125 nmol/L, (50 ng/mL) on top of the starting serum concentration...  This should bring your total 25(OH)D serum concentration up to around 212.5 nmol/L (85 ng/mL).

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

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The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Walmart or over the Internet:

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The vitamin B 50 is not shown.  You’ll need a 3-month course of vitamin B 50 to handle any deficiencies among the seven B vitamins.  Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 1:1 ratio.  Many have found taking 400 mg/day magnesium sufficient.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Jul 20th, 2014 at 6:49am by Batch »  

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Putter
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Re: confusion about vitamin D levels
Reply #6 - Jul 20th, 2014 at 9:11am
 
Hi,
I am still reading and rereading a lot of posts on Vit. D and the entire regime. I am down to 4 prednisone pills today. Taking the Vit. D 20,000 and Fish oil only at this time. I will introduce magnesium on Monday. I am taking verapamil morning and evening. Is it ok for me to skip the calcium supplement?   Just curious what others thoughts are....
Hi CC, I am an Ontario resident too, north of Toronto. My Headache Specialist is in Markham. I am going to chat with him at my next appointment in August about Vit. D. I'll ask for the Vit. D tests at the same time. I know he is very clinical, but hopes he listens. He might chalk up the lesser severity CH to the prednisone.
Personally I think it's the Vit. D. Smiley
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Batch
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Re: confusion about vitamin D levels
Reply #7 - Jul 21st, 2014 at 2:20am
 
Putter,

Your cluster headache symptoms will continue to decrease as you build your serum concentration of 25(OH)D, but you need to be taking the entire regimen. 

Magnesium is one of the most important vitamin D3 cofactors... start it as soon as possible along with the rest of the anti-inflammatory regimen.

Taking calcium supplements may have an effect on how verapamil prevents cluster headache, but this can be minimized by taking the verapamil in the morning and the calcium supplements 12 hours later in the evening. 

A lot of CH'ers who have found lasting relief from CH by taking the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 have stopped taking verapamil.

Take care and please keep us posted.

V/R, Batch
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Re: confusion about vitamin D levels
Reply #8 - Jul 29th, 2014 at 7:03am
 
Good Day Putter, Batch and All,
Just stopping by saying Hi! 
Putter, I noticed you mentioned your from just north of Toronto, I'm just east of Kingston, Ontario.
Thanks to Batch  Smiley, I've been pain free since last October, about every 3 months now I ask my MD for a requisition to get my 25(OH)D results.  I am episodic, generally hit through late fall to early spring. So, next test results will be completed in September to ensure I'm ready for no unpleasant surprises.
Glad to see another Canuck on board, I know with me.... I can't thank Batch enough for all his support!
All the best, pfw's  Wink
Sue
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cc45713
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Re: confusion about vitamin D levels
Reply #9 - Jul 29th, 2014 at 8:06am
 
I'm also Canadian. I live in Toronto.  Smiley
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Re: confusion about vitamin D levels
Reply #10 - Jul 29th, 2014 at 9:26am
 
Glad to meet you! I'm originally from Mississauga, moved to Kingston area 29yrs ago when I got married.... I've been episodic for almost 30 years now...Last spring/summer cycle was the worst, since I started the Vit D regimen, I feel so much better. Looking forward to continue this feeling.
Its to bad we had to meet like this  Wink, pfw's!
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Putter
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Re: confusion about vitamin D levels
Reply #11 - Aug 2nd, 2014 at 9:39am
 
Hello CC and Sue, fellow Canadian CH sufferers. I agree, too bad to meet like this. I live north of TO near Newmarket. I joined this Forum in 2007, and have been getting clusters for 24 years. They return Every few years or so and they last slightly longer each time they return (I anticipate this bout will last three months) The last time was in 2010 prior to the D3 regime so I have reading and reading a lot of posts to educate myself on the vitamins. Huge credit to Batch for all the help which is great to read!
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Re: confusion about vitamin D levels
Reply #12 - Aug 3rd, 2014 at 1:05am
 
My husband's CH started in NE US and have continued here on the west coast of Canada.

If a trigger for cluster headaches is low Vit D, one would expect a higher rate of CH in Canada than in the US (proportionate to population)  Undecided . So we'd expect Canadians to be over-represented on this forum, right?

Take off, eh?
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Re: confusion about vitamin D levels
Reply #13 - Aug 3rd, 2014 at 1:33am
 
It will depend a lot not just on how bright the sunshine is but how much time you spend out in the sunshine.
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Re: confusion about vitamin D levels
Reply #14 - Aug 3rd, 2014 at 1:44am
 
I spend a lot of time in the California sun, but my D3 level is still low at 37 ng/mL.
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Re: confusion about vitamin D levels
Reply #15 - Aug 4th, 2014 at 8:39am
 
Putter wrote on Aug 2nd, 2014 at 9:39am:
have been getting clusters for 24 years. They return Every few years or so and they last slightly longer each time they return (I anticipate this bout will last three months) The last time was in 2010 prior to the D3 regime so I have reading and reading a lot of posts to educate myself on the vitamins. Huge credit to Batch for all the help which is great to read!

Absolutely!  Over the years the Clusters have changed in length of time for me also.  In fact, it would seem the CH would immune to whatever pharma drug I was taking at the time. With the next cycle, it would take a much higher dose or change in drugs to abort... crazy eh.
We can't thank Batch enough... He's an amazing person. Thank you Batch  Smiley
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Re: confusion about vitamin D levels
Reply #16 - Aug 4th, 2014 at 4:14pm
 
Sue, Putter, and All the CH'ers taking the anti-inflammatory regimen to prevent their CH who post here at CH.com,

I've said it before... but it's worth saying again...  Hundreds of CH'ers wouldn't be enjoying the benefits of this regimen with vitamin D3 as a CH preventative today if it weren't for all the CH'ers like you who took the leap of faith to try this regimen then took the time to report the results. 

Moreover, in reporting the dramatic efficacy of this regimen in preventing your CH along with the resulting 25(OH)D lab test data and encouraging others to try it, you've convinced far more CH'ers to start this regimen than I could ever attract with my posts.

In short...  Good On You!!!

V/R, Batch
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Re: confusion about vitamin D levels
Reply #17 - Aug 4th, 2014 at 6:36pm
 
Hi All,
I would just like to say thanq, firstly too my wife for finding this club, and secondly to Batch for getting my life back, and last but not least to all of you who post information  here to help folk get pain free from this horrible disease.

Cheers, Hoppy.
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Re: confusion about vitamin D levels
Reply #18 - Aug 4th, 2014 at 8:20pm
 
And I'm just a skipping, repeating record here......4 years pain free after well over 30 years of battling the beast as an episodic......all thanks to Batch and his silly assed idea that D-3 would stop headaches. THERE IS DEFINITELY SOMETHING TO THIS PEOPLE!  If you haven't tried it, give it a shot...nothing to lose, a pain free life to gain! Thanks again Batch...Christy says you're okay too! Wink

Joe
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Re: confusion about vitamin D levels
Reply #19 - Aug 4th, 2014 at 9:14pm
 
I started this regiment over a year ago when I got my first cycle ever - I have not had a full blown CH in atleast 9 - 10 months.  My Vit D levels stay in the 77 to 111 ng/ml range every three months I am tested - I stay in between 15-20k a day to keep my levels there.  Give it atleast a 3 month try - thats about how long I needed to get my levels up to the levels that were needed.
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Re: confusion about vitamin D levels
Reply #20 - Aug 4th, 2014 at 10:26pm
 
TeeJ2379 wrote on Aug 4th, 2014 at 9:14pm:
Give it atleast a 3 month try - thats about how long I needed to get my levels up to the levels that were needed.
That's good to know! Thanks.
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Re: confusion about vitamin D levels
Reply #21 - Aug 4th, 2014 at 10:59pm
 
I almost tried what I have read some people call the beer test this afternoon! But I chickened out. I thnk I read somewhere someone recommended waiting around 5 days minimum from the last cluster anyway. There is always tomorrow or next weekend.
At least I have been able to exercise now, thanks to this regime. Exercise and alcohol were triggers for me in the past. And with a 7 year old and a 10 year old, we are pretty active around here!
I am still reading a lot of posts and learning more and more with all the info.
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Re: confusion about vitamin D levels
Reply #22 - Aug 7th, 2014 at 8:07am
 
All I can say....
THANK YOU BATCH!!!
From the bottom of my heart <3
YOU ROCK!!!!!

what would we do without you  Roll Eyes  Wink
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Re: confusion about vitamin D levels
Reply #23 - Aug 7th, 2014 at 4:32pm
 
sue_g wrote on Aug 7th, 2014 at 8:07am:
what would we do without you  Roll Eyes  Wink


Go through a whole lot of pain which so many of us are avoiding right now.
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Re: confusion about vitamin D levels
Reply #24 - Aug 7th, 2014 at 5:18pm
 
Mike NZ wrote on Aug 7th, 2014 at 4:32pm:
sue_g wrote on Aug 7th, 2014 at 8:07am:
what would we do without you  Roll Eyes  Wink


Go through a whole lot of pain which so many of us are avoiding right now.



Certainly my story! Wink

Joe
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