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~Naomi~

Vitamin D And Pots Case

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The way I read it ... A 1-a hydroxylation defect can be a root cause of POTS and if it is, it can be successfully treated by taking Vitamin D3....

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That's how I read it too. I've been taking Vit D3 for a long time and I still have POTS. I think this is another example of the wide range of underlying conditions that could be causing POTS.

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Yep.... My D3 is low. Most people with any endocrine issue also have low Vitamin D3.... I've been taking it for over 5 years. I guess I can rule out a 1-a hydroxylation defect! It's good to know that simply taking Vit D3 could cure POTS for some people. Thanks for the info, Naomi!

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one of the docs i saw kept insisting i had low vit D and urged me to take it. maybe i should listen to her.

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one of the docs i saw kept insisting i had low vit D and urged me to take it. maybe i should listen to her.

You really should get it tested..If it's low, it usually takes a high strength for 6 weeks to get it back in range..then get tested again. I've posted a link regarding that on here before. I'll see if I can find it..

Here you go... http://www.goodhormonehealth.com/symptoms/VitaminD3.pdf

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Well my vi.t D was low too. And I think that's common with POTS and CFS. It didn't' "cure" me but I know I feel a lot less energy when my vit. D level is low. So it does help me a lot to take supplements.

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So either the Vitamin D deficiency was her underlying problem or maybe it was a coincidence and she spontaneously recovered, but they're attributing the recovery to vitamin supplementation. Also, I've read Vitamin D is a steroid hormone (or acts as one) and also has effects on the immune system - so maybe it's not just about deficiency, but can treat some other underlying problems. Whatever they treated her with is different from what is listed as the ingredient on my bottle of D3 - I think her stuff was stronger? I haven't read the full thing yet, but this article (below) seems interesting. It talks about Vit. D as a steroid hormone and its different effects on the body.

http://www.unc.edu/~stumpfwe/steroid-hormone-of-sunlight-soltriol.pdf

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What levels do you have? Following my recent blood work-up, my famdoc said my Vit D was low and that I should supplement for 6 wks and then re-test. Well, my Vit D 25-OH D2 was "<4"; Vit D 25-OH D3 was 38, and my Vit D 25-OH was 38 (with 30-100 being wnl). So.....not sure what that means. Maybe on low end but a problem? There were other results that were distinctly abnormal, but I guess I need to start somewhere......

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HOW TIMELY! I am heading to an endo appt. this morning, and she is a calcium metabolism specialist. Anyway, since you posted this article, I looked for my gene for 1-alpha hydroxylase, and I AM HOMOZYGOUS VARIANT!!

When I look that up, it says it causes vitamin D-dependent rickets, which very well could be me. I've had crooked and weak bones since I was a child.

Wow, thanks so much for this timely info! I am bringing it with me to the appt..

edit: too early a.m for me and writing too many wrong words ;)

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This is very interesting. I wish/hope it was that easy to heal us. I actually have a prescription for strong D vitamins that you are to take once a week for 3 months. I havne't started them yet. I believe my prescription says 50,000 iu or something like that. My levels were <25 and should have been >30 to be normal.

Anoj..... I'm not sure what the deal is either with the D vitamins. I have heard of D3 and D2, I don't know the difference, maybe someone else can fill us in on it.

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I already posted this a while ago. I don't know if there's something different from calcitriol and your 1,25 D3 levels, but I started supplementing D3 like mad and I got my 1,25 levels like way above normal, and I still had POTS. I began taking calcitriol with this high D3 level and I started getting stomach cramps so I worried about calcium levels and just stopped it.

I believe if calcitriol works it's working through modulating the immune system that's relevant to POTS and maybe that's why this particular patient had the success.

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Or maybe that patient had the 1-a hydroxylation defect, but the rest of us with lab showing low D3 don't ....

This was the part I didn't understand. So this is a genetic defect that has something to do with not absorbing Vit. D or something? They didn't mention any genetic testing being done. How do they know?

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I had my appt. earlier. This is what I found out regarding the article and vitamin D:

If you have the variant for that enzyme, 1-alpha hydroxylase, then you can't convert vitamin D from either sun OR supplement intake. It pools around and does not become the "active" vitamin D in the body that then goes off and works on all the vit. D receptors(VDRs) throughout the body. So, if you don't have the enzyme to convert, it doesn't matter how much OTC or 50,000 IUs you take in, it won't convert or it doesn't convert hardly at all(I can't remember the exact info).

I would like to add that vitamin D has sooooo many effects on the body!!

So, if you can't convert, then taking the Calcitriol form is what you need. It bypasses all that and IS the vit. D that is usable in the body. Because my gene data showed that I do not have that enzyme needed to convert(1-alpha hydroxylase), I will soon begin taking calcitriol. The doctor did labs today, and they took the study mentioned above to study it and see what info they can glean from the whole thing. She was very nice and mentioned that this was "very interesting". It sounds encouraging to have a doctor willing to REALLY delve deeper to help.

Here's a link to a crude diagram of the vit. D pathway. I don't make the CYP27B1 enzyme at the kidney(or not enough). The doctor said you cannot test for the enzyme directly.

http://respiratory-r...re/F1?highres=y

I did labs today and will go back for an appt. in the beginning of October. I am assuming I will hear via phone what the labs showed and maybe begin the meds after that. Ugh---it was a morning appt. and my brain does NOT work til afternoon! So, I left understanding how all that works, but not about when and how I'll begin treatment, etc.

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Sounds like the Vit D3 will really help you, Sue!! Great timing on your doctors appointment! :) BTW, do you still have the adenomas on your adrenal glands like it says in your signature?

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Yes, at least on one adrenal. For this year's CT scan, the radiologist only mentioned the one, but the couple before showed adenomas on both.

And it was a very timely article and appt.!

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For the last 6-7 years, my ACTH has been very normal, and the cortisol has fluctuated between low-normal to high-normal.

However, this year at Mayo, the tests showed up odd, but the doctor didn't say anything. The cortisol was at the upper end of normal, and at the same time, the ACTH was at the upper end of normal. Which to me is NOT normal. The are supposed to reciprocate each other---when one is up, the other should be down, and vice-versa.

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Sue - could this be causing your POTS? Maybe this is why some people -despite taking Vit. D supplements- can't get their levels up. I was struggling to read through your post - bad head day. Is there anything testable here?

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Naomi, I don't know if this is what is causing my POTS. However, I have the same issues the lady had in the article that started this thread, and just by taking the calcitriol, she got "well".

I bought the article, because I wanted to make sure they hadn't also given her cortisol for her NCAH at the same time. To me, then I would have said she got better from the cortisol. But, she had ALREADY been taking cortisol, florinef, propranolol, clonazepam, sertraline, epoetin, and midodrine. (phew!! she was already taking alot!). They said that helped her some, but she still could not function. They tested her D levels, and the 25(OH) was low-normal, but her 1,25(OH)2 was low. I checked all of my old labs, and I have never had the 1,25(OH)2 levels tested. This is the usable form in the body that works everywhere.

Anyway, she began calcitriol replacement, and within a month her "postural palpitations virtually ceased", and she began a full-time job!

They were saying at the end of the article that low vitamin D in the body raises norepinephrine.

So, I have hope. I finally am finding an outright link or causative factor to why I might have POTS. I'll try it, and if it doesn't help the POTS, well, I'll just keep on looking!

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BTW, maybe that's why some feel better after they've been out in the sun? For those that have lowish vit. D, and their bodies can convert and make the real stuff, maybe that extra vit. D lowers the adrenaline in the body.

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Sue, (I apologize if you alread know this) the HPA (hypothalamic pituitary adrenal axis) is sequential, with the pituitary's ACTH stimulating the adrenals to produce cortisol. So, for example, if you were experiencining stress at the time of testing, you would expect to see an increase in ACTH along with an appropriate increase in cortisol. When your cortisol is elevated and sufficient (ie for a prolonged period of time), only then would you expect to see negative feedback resulting in a "top-down" shutoff, and decrease in ACTH. OTOH, for example, if you have adenomas that were producing/artifically elevating cortisol in your adrenal glands, the circuit would recognize elevated levels and ACTH would shut off (so, high cortisol, low ACTH =bad in that scenario). So.....my interpretation anyway (as someone who has AI and is familiar with the cirucuit, but I'm NOT a doctor), is that it sounds like a good thing that they are consistent :)

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