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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Why did my D levels drop so much?

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Why did my D levels drop so much? (Read 3016 times)

Rumeke

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Why did my D levels drop so much?
Jun 24^th, 2014 at 9:18am

My D25(OH) in December was 89 ng/ml and this was after loading doses to kill my cycle. I went back to 10,000 IU a day along with the rest of the factors (except for calcium which seemed to interfere with my verapamil.

I started getting shadows in April so my Dr retested my D levels and they were at 65 ng/ml. I increased by dose to 20,000 a day for 2 weeks and they stopped. Back on 10,000 a day and no shadows.

My question is why did my levels drop so much? I do have psoriasis so I guess that is an inflammation that might use up the D. Any ideas?

Judy

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Batch

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Re: Why did my D levels drop so much?
Reply #1 - Jun 24^th, 2014 at 1:34pm

Judy,

Good guess... and great post...

There have been a number of recent studies that have shown our immune system's T-cells are major consumers of 25(OH)D.

Any viral or bacterial infection as well as an allergic reaction or flare up of an inflammatory disease will trigger an immune response characterized by rapid growth in the number of T-cells. This process appears to consume available vitamin D3 metabolites, 25(OH)D and 1,25(OH)2D3 at higher rates.

Data we've gathered to date on the efficacy of vitamin D3 and its metabolites as a CH preventative indicate CH'ers need to maintain an average 25(OH)D serum concentration around 80 ng/mL in order to remain free of CH symptoms.

Under "normal" conditions and in the absence of inflammation, the intake of 10,000 IU/day vitamin D3 results in an average 25(OH)D response around 80 ng/mL.

As an immune response from any source will consume available 25(OH)D at higher rates, a daily intake of 10,000 IU/day vitamin D3 will be insufficient to maintain the 25(OH)D serum concentration at 80 ng/mL as long as the immune system is in a significant response mode.

Accordingly, there will be times when CH'ers will require higher maintenance doses of vitamin D3.

For example, I'm a chronic CH'er and under "normal" conditions, 10,000 IU/day vitamin D3 is sufficient to keep me pain free... However, during the high pollen season (March-May here in the Puget Sound area of Washington, I've had to maintain an average vitamin D3 intake around 20,000 IU/day and a peak intake as high as 40,000 IU for a week or more to remain CH pain free.

In a related side note, there have been a number of studies in the last three years linking higher doses of vitamin D3 (35,000 IU/day for six months), higher resulting 25(OH)D serum concentrations and reduced calcium intake to significant reductions in the severity, involved area and frequency of psoriasis outbreaks.

See the following VitaminDWiki link for more details.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Hope this answers the mail...

Take care and please keep us posted.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Rumeke

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Re: Why did my D levels drop so much?
Reply #2 - Jun 25^th, 2014 at 11:30am

Thanks for the response Batch! My PHP kept telling me to keep up the calcium citrate supplements since I was at the upper range. Finally told him I hadn't taken them in ages, he laughed and said well if that works...keep not taking them!

I did notice when I upped my D3 in April..my psoriasis cleared up somewhat. Seems like everyday we are finding some medical condition that D3 effects.

My next blood test is the end of July...will be interesting to see where my D is.

Thanks again!
Judy

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Ricardo

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Re: Why did my D levels drop so much?
Reply #3 - Jul 18^th, 2014 at 10:08am

This has been a question I have had for quite a while. Why do all these Cluster heads have such low Vitamin D levels? Has anyone taken any sort of absorption test to see how much of the D they are really taking in? I've seen so many people that have had so many health problems that have cleared up once they figured out certain foods that they were allergic to that it makes me wonder if the same kind of thing could be involved here. One big thing that can happen with food allergies is not absorbing enough nutrition in your gut. To be clear, I really do not think food allergies are CAUSING the clusters, but I wonder if non-absorption of nutrients could be a player in low D levels, and I wonder if that could be triggering them.

-Ricardo

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feisty

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Re: Why did my D levels drop so much?
Reply #4 - Jul 21^st, 2014 at 1:46pm

The topic of the intersection of vitamin D-allergy-clusters interests me very much. My husband doesn't normally get a cycle in the summer but he started one a month ago. We wonder if it was triggered by a bad bout of allergies? He doesn't normally have issues with that in the summer but this year they have been bothering him.

mechanism?: more pollen -> allergy bout -> DEPLETION OF VIT D -> allergies worse -> inflammation -> cluster headache cycle initiated

I found this interesting article:

Allergy sufferers face little reprieve this year
{sorry I guess I am not allowed to post links yet?}

Quote:

Rising temperatures appear to be boosting seasonal allergies, and studies have shown tree pollination is being prolonged.

“We also expect that pollen counts will likely go higher with global warming,” said Dr. Amin Kanani. “There are a lot of studies that have shown that there’s more budding and more growth of some of these allergenic trees and grasses and plants.”

Quote:

Studies suggest a lack of vitamin E in a woman’s diet during pregnancy and a lack of vitamin D could be contributing to increasing allergy rates. Kanani said omega-3 fatty acids from oily fish including salmon, mackerel and sardines have shown to be beneficial to people with allergies, but supplements are not as effective.

I've just started my husband on vitamins, but still acquiring the right supplements and tweaking doses.

« Last Edit: Jul 21^st, 2014 at 2:08pm by feisty »

wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!

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Batch

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Re: Why did my D levels drop so much?
Reply #5 - Jul 21^st, 2014 at 8:48pm

Ricardo,

You bring up a couple good points... For starters, there's nothing special about the cluster headache disorder that leads to a low or deficient vitamin D3 status...

Better than 60% of the US population has a 25(OH)D serum concentration below 30 ng/mL and better than 95% are below 60 ng/mL...

The simple reason for this is we don't spend much time out in the sun clad in a bathing suit without any sunblock... so we don't make enough cutaneous vitamin D3...

Cutaneous vitamin D3 is made when the UVB in direct sunlight strikes cholesterol in the skin... It goes directly into the bloodstream so absorption is not an issue.

The second point deals with allergic reactions... By definition, allergic reactions involve inflammation regardless of the type of allergen...

As the body's defense against inflammation is based on the vitamin D3 metabolites 25(OH)D and 1,25(OH)2D3, the active hormonal form of vitamin D3, these metabolites get consumed a much higher rates if inflammation is present from any source or reason including trauma and surgery.

If the body's overall vitamin D3 status as measured by serum concentrations of 25(OH)D is deficient... and you're a CCH'er or ECH'er in cycle... you'll get hit.

Moreover... you'll keep getting hit until your serum 25(OH)D stays consistently around 80 ng/mL... That will take a sustained dose of at least 10,000 IU/day vitamin D3. Even at this dose, it can take over a month and up to two months to elevate serum 25(OH)D to 80 ng/mL.

The best course of action is to go on a vitamin D3 loading schedule to elevate your serum 25(OH)D as fast as possible.

People with malabsorption issues usually suffer from a lot of other medical conditions and some of these conditions go full circle causing continued malabsorption.

In short, keeping the body healthy and the 25(OH)D serum concentration around 80 ng/mL, 200 nmol/L) is one of the best, safest, and least expensive ways of preventing CH...

Take care,

V/R, Batch

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Bethyj

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Re: Why did my D levels drop so much?
Reply #6 - Sep 8^th, 2014 at 3:50pm

I'm new to this site but find this theory extremely interesting. I suffered from CH for 7 1/2 years and was recently diagnosed correctly. I am at the end of a 6 day cycle, again. I was diagnosed with UCTD several years ago and have always connected the headaches with this autoimmune condition. With UCTD, I must stay out of the sun. It causes severe rashing, itching etc. My D3 levels are always very low. None of my docs have connected the dots on this one, yet. I had added D3 to my morning routine, but quit not long ago. I was probably not taking enough. I have several doctors that are new to my condition, so I have to go over it again and again. I just requested an appointment with my neurologist because my headaches are becoming more severe again. I will be bringing up the low D3 issue and see what he says. In the meantime, I will be getting back on D3.

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Rumeke

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Re: Why did my D levels drop so much?
Reply #7 - Sep 8^th, 2014 at 8:27pm

Bethyj...I think you are right about your auto immune disease depleting your D reserves. I still take 10,000 iu of D3 a day and am staying about 65 ng/ml. My Dr however has asked me to go back to 5,000 iu a day because my "levels are too high". I asked him why he thought they were high when the 'acceptable' range is 40 - 100. So be aware most PCP have no clue.

Two of my daughters have chronic lyme with very low D levels and take 15,000 a day. Others have chimed in with auto immune diseases that have found they have low D...I believe you are on the right track.

You may want to PM Batch with your story and what your latest D25(OH) levels are and he can help you take the correct dosage. You might as well do the whole regimen and get full benefit from the D3.

Good luck with the neurologist...make sure you get a RX for O2!

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Batch

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Re: Why did my D levels drop so much?
Reply #8 - Sep 9^th, 2014 at 11:12am

Hey Bethyj,

I did a quick check of recent articles on UCTD published since 2010 and there is no doubt in my mind that a vitamin D3 deficiency is very common if not universal among people with this autoimmune disorder.

Good move getting back on vitamin D3. An even better course of action is to start the complete anti-inflammatory regimen with at least 10,000 IU/day vitamin D3.

In addition to vitamin D3, this regimen contains Omega-3 fish oil, and all the needed vitamin D3 cofactors that help metabolize vitamin D3 to 25(OH)D and on to the active hormonal form of vitamin D3, 1,25(OH)2D3, calcitriol.

Your cluster headaches will go away and your UCTD should respond nicely once you get your serum concentration of 25(OH)D up around 80 ng/mL.

The best, safest and fastest way to do this is following the suggested daily regimen at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Scroll down half way through the first page of this link for the "How To" and list of supplements you'll need to take.

Be sure to involve either your PCP or immunologist in this process if for no other reason than to educate them. When you do see either of them, ask for the lab tests of your 25(OH)D and vitamin B12 serum concentrations.

Take care and please keep us posted.

V/R, Batch

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