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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Nmol/L levels
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Message started by Colin.C on Nov 12th, 2017 at 8:23am

Title: Nmol/L levels
Post by Colin.C on Nov 12th, 2017 at 8:23am
Hi everyone,

So I had my blood work done last week after being on the D3 regimen for 21 days. I got my results back yesterday and I was at 288 nmol/l when the test was taken. This seems really high. I've been taking 15,000 to 20,000 UI a day between the day I had blood taken and today. Is there a way to estimate my current nmol/l based off those available numbers?

Also, I would feel more comfortable with a lower number. To achieve this, would I stop taking vitamin d for a set period of time but continue the cofactors? Or should I just stop altogether.

Btw, I'm 99% pain free right now. I'll get nothing during the day and only one kip 2 in the middle of the night. This began maybe 3-4 days ago.

Title: Re: Nmol/L levels
Post by Batch on Nov 15th, 2017 at 3:03pm
Hey Colin,

Thanks for the update...  I wouldn't worry about your 25(OH)D serum concentration at 288 nmol/L (115.2 ng/mL).  It's no biggie, particularly if it's keeping you CH pain free...  My average 25(OH)D serum concentration over the last three years is 140 ±50 ng/mL (350 ± 125 nmol/L).

My PCP just looks at my labs and smiles... then says..."Your serum 25(OH)D is elevated... as usual... However as your serum calcium is normal and your PTH is low... I guess you know what you're doing controlling your CH this way...  (He has a copy of the treatment protocol).

If you still feel uncomfortable with your 25(OH)D this high, drop the vitamin D3 dose to 10,000 IU/day.  Your serum 25(OH)D will start dropping slowly.  If you're episodic, you can let it drop to 200 nmol/L. If you're a chronic CHer, I wouldn't let it drop below 250 nmol/L. 

The survey data indicates chronic CHers who experienced a favorable or pain free response to this regimen are maintaining a mean 25(OH)D serum concentration of 100 ng/mL (250 nmol/L).

As you're still not 100% CH pain free, you might want to try the Children's Benadryl (Diphenhydramine HCL) liquid allergy medicine

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12.5 mg (5 mL in the measuring cap) when you get home for the day and done driving and 25 mg before bed.

Take care and please keep us posted.

V/R, Batch

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