Everything came back except the testosterone test, and now checking RA level as well. I had a positive ANA (and my D3, though higher, is still on the low end at 37). So now the question comes in, how is this nearly 3 month cycle related to a positive ANA and the tortuous right vertebral artery and deformity of the cervicomedullary junction. I know I still need those last 2 critical results, but I'm at a loss here, as the HA seems like it may be going beyond CH. UGH!

Also, my calcium was high.

Mike,

A 25(OH)D serum concentration of 33 to 37 ng/mL may be contributing to your CH.  The real experts dealing with vitamin D3 deficiency say the lab test for total 25(OH)D concentration is the best measure of vitamin D3 status.

From the data posted by CH'ers here at CH.com and from the anti-inflammatory regimen survey, CH'ers with active CH have tested as high as 42 ng/mL 25(OH)D.  Moreover, CH'ers who have responded favorably to the anti-inflammatory regimen have all tested > 60 ng/mL 25(OH)D.

I'm assuming you hadn't started on the vitamin D3 you ordered prior to your lab test, but you indicated in an earlier post you were taking vitamin D.  How much and what kind, D3 or D2?

Vitamin D3 can help with the low T as well.

Take care,

V/R, Batch

I checked this morning, it was only 500 (not 5,000) D3. The test I ordered was the 25 OH. I got the D3 today, 5,000 IU pills, and started taking 2 today. I will do 2/day every morning, and hope for the best. I'm just concerned about the calcium, as there is little "normal" reason for calcium in the blood, and an elevated (positive) ANA. Still waiting for the Testosterone results, but thyroid came back positive. I'm hoping not only to have the D3 work, but to get off Depakote, as it is making me too hungry and to be honest, I'm just sick of taking meds.

Positive ANA may mean that there is something other than cluster going on, hence the RA test.  In addition to cluster, I have SLE (lupus) and a positive ANA is one of the indicators.  It just supports the use of the anti-inflammatory regimen.  I just started it 2 weeks ago and although I can't say whether or not it is helping me since I am in the midst of one of the worst cluster cycles of my life, I can say that the lupus is not flaring so that is a good thing!

Hey Emjay,

Hang in there...  You're spot on... There's more than anecdotal evidence that vitamin D3 can help prevent outbreaks of both conditions. Did you have the lab test for your serum concentration of 25(OH)D?

Knowing your starting level of 25(OH)D will give you a better idea how long it will take to get it up to a concentration of 60 ng/mL  That's the serum concentration where most CH'ers go pain free...  Some need to go even higher up to 100 ng/mL.

Mike, there are two types of lab tests for calcium. One is Total Calcium (Ca) with a normal range of 8.4-10.5 mg/dL and Ionized Calcium (Ca⁺⁺) with a normal reference range of 4.1-5.2 mg/dL.

There's evidence the low and high boundaries of both methods are low.  This reference range was determined here in the US by taking several thousand people, measure their serum calcium concentration and then use a Gaussian distribution to calculate “normal." 

Unfortunately, most "normal" people here in the US are vitamin D3 deficient so their calcium levels will also tend to be low.

For example, the normal reference range of calcium considered normal in East Germany is 9.4 to 11.2 mg/dL.  It seams the East Germans are up to speed on the high prevalence of vitamin D3 deficiency so a larger portion of their population supplements with vitamin D3 and as a result, they tend to have higher serum calcium levels.

For reference... The American Society for Bone and Mineral Research published a report that states the following about hypercalcemia:

"Most patients do not begin to show clinical features of hypercalcemia until the total calcium concentration exceeds 12 mg/dl, and patients are almost invariably symptomatic at levels >14 mg/dl. However, there is much individual variation in this regard."

Take care and hope this helps.

V/R, Batch

Been on vitamin D3 (5000 IU per day) for the past 3 weeks and I can say that it has definitely made a difference. Since starting, I've had only 1 headache and it was probably a kip 3 at best. I didn't even need to use immigran to knock it down. I've also been chugging as much water as I can.

Hopefully this cycle is over as I really don't want to go back on prednisone for the third time!

Thanks, Batch. I started D3, 10,000 IU over the weekend. The calcium was total calcium and, I'm waiting for the fax to confirm, but I think he said it was maybe 10.9, only slightly high. My Total T was 418, which he said was OK.