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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> 25(OH)D serum concentration
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Message started by numbnose on Oct 24th, 2018 at 8:32am

Title: 25(OH)D serum concentration
Post by numbnose on Oct 24th, 2018 at 8:32am
Hi foks,
I had a most annoying GP visit yesterday.
He would not entertain the research in the CH Preventative Treatment Protocol for Neurologists pdf.

I requested a test of my serum concentration 25(OH)D.
He said he had never heard of it and wasn’t going to request a test for something he had no knowledge of and would get a test of my ‘Vit D’
Will that cover it or does the test need to be more specific?

Cheers

Title: Re: 25(OH)D serum concentration
Post by Batch on Oct 24th, 2018 at 2:16pm
Hey Numbnose,

Thanks for the feedback.  Howz the head?  CH pain free I hope...

There are only a handful of neurologists who have knowledge of the anti-inflammatory regimen and support its use so it's reasonable to expect comments like his.

The lab tests I always ask for each year at my annual physical or more frequently if I've changed my dose of vitamin D3 are, serum 25(OH)D, calcium and parathyroid hormone (PTH).  The treatment protocol lists these lab tests and their required codes.  I also ask to have a copy of the actual lab results sent to me by email so I can see the actual results and not a doctor's interpretation of the results. 

For example, the normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL (75 to 250 nmol/L).  We've seen too many doctors tell CHers their 25(OH)D was "normal" at 31 ng/mL.  While this is true and a high enough 25(OH)D serum concentration to prevent osteomalacia, the adult version of rickets, it is far too low to prevent CH. We're looking for a therapeutic serum concentration between 80 and 100 ng/mL (200 to 250 nmol/L).

We've also had physicians tell CHers their 25(OH)D status is "too high" at 60 to 90 ng/mL and to stop or reduce the vitamin D3 dose.  This is where the results of lab tests for serum calcium and PTH come in handy as you'll see in the following discussion.

Taken together, these three lab tests tell us our true vitamin D3 status.  As long as serum calcium is within its normal reference range there's no hypercalcemia (Too much serum calcium and the only reliable lab test for vitamin D3 intoxication/toxicity) so there's no vitamin D3 intoxication/toxicity even if the serum 25(OH)D goes above 100 ng/mL. 

For reference, during high pollen/mold spore periods, I need to titrate my vitamin D3 dose up to an average of 35,000 IU/day to avoid a CH burn through.  This results in my serum 25(OH)D going well above 100 ng/mL to as high as 188 ng/mL. 

My PCP knows I'm a chronic CHer and taking the anti-inflammatory regimen to prevent my CH.  He read the treatment protocol I provided and then did some research on his own.   Accordingly, when my annual lab results come back with my 25(OH)D this high he says...  "Your 25(OH)D is high... as usual...  However, as your serum calcium is normal, your PTH is not too low and the rest of your labs look great, I have no problem with your anti-inflammatory regimen and vitamin D3 doses this high."

Hope this helps.  Take car and please keep us posted.

V/R, Batch

Title: Re: 25(OH)D serum concentration
Post by numbnose on Oct 25th, 2018 at 9:37am
Hi Batch,
No, still in cycle unfortunately. Day 62. 2-3 attacks each day but all very mild compared to what I remember. Enough to wake me but not the agony I remember. All aborted with O2 in 10-15mins.

Thanks for all that info. I'll arm myself better when I see him with my results.

Cheers
Simon

Title: Re: 25(OH)D serum concentration
Post by Chuffy on Oct 27th, 2018 at 6:02am
GP's can be very frustrating when it comes to D3 tests. If you do persuade them to let you have one then you usually don't get an exact figure out of them, just an 'adequate' or whatever.

In the UK I use this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE for tests. They post it to you and you post it back then get the results via email, usually within a couple of days. Give them a ring and see if they will post to Ireland.

Good luck

Title: Re: 25(OH)D serum concentration
Post by numbnose on Oct 29th, 2018 at 1:20pm
Thanks Chuffy.
Just contacted them and they do indeed.
In fact looks like they ship pretty much worldwide.

Title: Re: 25(OH)D serum concentration
Post by Chuffy on Oct 30th, 2018 at 5:37am
Nice one

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