Vitamin D And Pots Case

[HopeSprings]

The other things I was reading about that can go along with this are calcium and parathyroid abnormalities. Did they test all that? A neurologist ask me -based on my symptoms- if my parathryoid was ever looked at. I think because one of my calcium tests from the past was normal this wasn't pursued. Please keep us posted on whatever you find out. I hope you're onto something!

[Zap]

Well, this is an interesting topic to wander across - I just checked my labs, and sure enough I was only tested for the 25(OH) form, so I guess we know my liver may be metabolizing D3 that my body makes. However, I wasn't getting enough sun at the time tested, in theory. I've been supplementing for a while, and am supposed to be retested, however I don't see a reason to test for 25(OH) without testing for 1,25(OH)₂ at least once, as we should make sure there isn't an enzyme deficiency causing low D3 in function as well as a low intake/production. We know that a single link in a chain can wreck entire complex biological processes on a large scale, and that the ONLY cure is fixing the chain. Otherwise we end up with the numerous dysautonomia drug cocktails that barely make most feel better. The point is that there is NOT ONE ROOT CAUSE, so we have to find the individual's broken link, and patch it. In the case of this article, this woman had an enzyme deficiency, and carefully bypassing that broken part of the body's process, allows her to feel normal, or almost normal!

I honestly think that doctors running tests is often worthless, or even a false sense of security, as many of them don't seem to understand the rhyme and/or reason for the specific types of tests and their interpretation, and that testing the one thing that has always been tested is an immediate pass / fail for all cases. A few things come to mind B12 vs [b12, MMA, Homocysteine] for B12 deficiency, 25(OH) or worse yet just serum D3 vs 1,25(OH)₂, and single catch 5HIAA and/or catecholamines vs 24 hour collection.

I can't say how many specialists have even discredited my requests to run specific panels of tests, yet they can't really tell me WHY I have an unfounded concern. I have quite enjoyed the very few doctors that entertained my enthusiasm, or even suggested what I would have asked for, before I spoke up.

I also don't understand the constant desire to overlook things that are abnormal without doing anything further about them. The definition of insanity is doing the same thing over and over, and expecting different results!

Hope this flowchart helps for those that like a visual understanding of the Vitamin D synthesis process. It was gleaned from this article, which describes things in greater detail.

[Millerla]

I agree that POTS seems to be caused by many different things. After all my lab work, because my doctor figured I was low on vitamin D, most of my vitamin levels are fine. Including my cortisol. My issue is that I have very little iron stores, I'm not anemic, but any longer before I started taking my iron supplements and I would be. I haven't noticed great POTS improvement yet, but I do definitely have a little more color in my face.

So, unless there is something on the vitamin D issue that I was not tested for, I am absolutely fine on that front.

[issie]

With Vit. D - you don't want to be low normal - you want to be in the upper range of normal. Life Extension has done numerous studies and suggest that your levels be no lower than 50 - but prefer for them to be between 50-80. Mine is in the low 30's and I'm now using 10,000 IU per day for awhile to try to improve those levels. Then we will re-test my levels. I'm using the D3 form. It would be interesting to see if there is a problem with the conversion. So, will probably ask for the other type of D test along with regular testing next time. I do seem to be feeling better.

Issie

[Katybug]

I'm sorry....I'm brain foggy these days...can someone clarify which test shows that you lack the enzyme that converts the Vit D to the usable form? I (and my mother) take tons of Vit D to no avail and I know my last Vit D test included testing bothing forms of D and I was on a supplement and I was still low across the board. Maybe I lack the enzyme....

[HopeSprings]

Katie - I was struggling to grasp this too. My understanding from what was written above and from the article is that the enzyme itself can't be tested for, but a low 1,25(OH)2 implies this enzyme deficiency. Anyone feel free to correct to me if I'm wrong. I'm going to ask to be tested too and want to have my facts straight.

[issie]

Katie - I was struggling to grasp this too. My understanding from what was written above and from the article is that the enzyme itself can't be tested for, but a low 1,25(OH)2 implies this enzyme deficiency. Anyone feel free to correct to me if I'm wrong. I'm going to ask to be tested too and want to have my facts straight.

I'm low - my OHD2 is less than 4 and my OHD3 is 34 and that was with taking 5,000 a day. So, now upped to 10,000 - we will see what the next test shows. Right now taking D3.

Issie

[sue1234]

Naomi, that is correct. I understood that 1,25OH is the one that is low if not converting the 25OH. The 25OH represents all sun and supplement intake. So, if you don't convert, both D2 and D3 might look normal, but the one they never test for, 1,25OH, will be low.

You cannot test for the 1-alpha hydroxylase. You can see if you have the mutant gene, but I think they just see if your 1,25OH level is low.

I can't wait to see what my results are. Knowing my luck, they will come back normal, which will really get confusing!

[Zap]

Yep, you've got it mostly correct. Technically, testing for 25(OH) is looking at serum levels AFTER the liver has metabolized the D3, which is either supplemental or from skin exposure to sun. 1,25(OH)₂ is the biologically active form, which exists AFTER 25(OH) is processed by 1-alpha hydroxylase in the kidneys.

The 1,25(OH)₂ form is bioactive without any further chemical changes from the body. Calcitriol is the prescription (brand) name for this type of Vitamin D, which bypasses the body's entire metabolism of D. As such, it needs to be closely watched, as it can cause excessive levels of calcium in the blood. It also requires watching dietary intake of calcium for optimum function. However, for those with 1-alpha hydroxylase deficiency, it is likely the only way to properly get enough Vitamin D, since the body isn't converting the precursors in large enough amounts.

Also, D3 is the type that is generally used supplementally - this is the same chemical that is made in the skin by the body by sunlight, and is cholecalciferol. D2 is another form, and is generally the one used by strict vegetarians/vegans, as D3 as a supplement generally comes from animal sources.

Hope this helps clear things up a bit!

[sue1234]

Friedbrain, you are right. I am always "stressed" if I have to go do fasting blood sugar, just from the fact that I am upright walking to the labs AND I don't do fasting well!

Naomi, regarding the PTH/calcium. Yes, I have had my PTH tested a few times over the last 6 years. The PTH has always been total mid-range normal. My calcium is usually normal, or it has actually been on the low or very low-normal end a few times. The lowish calcium I'm sure may be caused from the low vit. D issue. I have looked over my childhood records and saw that I occasionally had lowish calcium. I have an x-ray report from age 9 that the radiologist says that he saw some osteoporosis. So, I've had bone issues my whole life, and apparently calcium metabolism issues that were never delved into or addressed for the last 50 years.

Zap, thanks for making it all clear. I thought I had understood what the doctors had said, but hey, my brain can miss or jumble things up easily!

Has anyone else had a history of occasional low calcium??

[HopeSprings]

Has anyone else had a history of occasional low calcium??

Yes, I've had this at least once. It was noted, but not delved into (as usual). A thought occurred to me - what if your 25(OH) and 1,25(OH)₂ are both low? I would think if the first is low, it would make sense for the second one to be low. So a low 1,25(OH)₂ in this case doesn't prove anything. The lady in the article had normal 25(OH), but low 1,25(OH)₂, which I guess is what tipped them off to the enzyme deficiency. I'm not sure for those of us with low 25(OH)... if testing the other is going to be meaningful? Right? or am I missing something?

[sue1234]

You make a good point! I don't know how to "prove" that I don't convert because I cannot take any vit. D. I end up feeling like I have tetany or ready to have a seizure. It gets that bad.

[targs66]

All very interesting... my vitamin D levels are very low (18 out of a range of 32-100), then nine months later 15 (same range). Also, my health has gotten much, much worse since I moved to perpetually cloudy north west England from the States. (Nothing against England, mind you, but this weather is awful!!!)

I have tried at least three (losing track here) different kinds of D3 supplements, and stopped because (like Sue) they make me feel utterly awful. Given that I feel pretty bad on a daily basis, I just don't take things that make me feel worse. I end up feeling as if I've got the flu.

I just took a look at two of the varieties of D3 that I've tried - they both say "cholecaliferol". I'm wondering if maybe I could tolerate the calcitriol variety. Unfortunately, my GP is not willing to do much of anything with me, so I'm not sure if I could get a prescription...

The other thing that I find interesting is that D3 is considered a steroid. I tend to react really badly to anything steroidal (Cortef, Florinef, even licorice root). I don't have a scientific background so I have no idea if there's a connection!!

Thanks to all for this info.

[issie]

I wonder if the reason you are reacting is whatever it is suspended in. I found one that is in olive oil - instead of soy. Soy, gives me all sorts of problems. It's by NOW - Vit D3 5,000 IU - it is cholecalciferol from lanolin. When I was over there in Ireland - there were health food stores that you could buy supplements from - not sure about England. I know one of the friends that we stayed with in England said that she had to get a script for her supplements - but, I wasn't sure if that was for everything or not.

Yeah, it drizzle rained nearly every day, I was there - just out of the blue - a mist - that just came from no-where. I'd never really seen anything like it. I wouldn't like the sogginess of it all the time. You always had to have your umbrella handy.

Issie

[Katybug]

Ok, so I must not have the converting enzyme because my 1,25(OH)₂ was low even on D3 supplementation. Will have to ask the doc about this one. Maybe this is part of the puzzle since Vit D is a player with the immune system and my immune system is definitely messed up!

[sue1234]

Katie, you just had this tested recently? Definitely let us know what your doctor has to say!

[Katybug]

I had the test in May and I had been taking Vit D3 since January. But, the doc (the rheumy I am no longer seeing, just had appt with new one) just told me to up the dose. She apparently knew to order both tests but didn't fully understand the implications. But, I am supposed to see an endo in Sept., and I will be taking that test and this article to him. I am also going to take it up with my neuro and my primary next week since I see both of them. Maybe one of them will be interested and/or knowledgeable on the subject and I'll be able to do something sooner than my Sept. appt. I'll let you know if I get anywhere with it.

[McBlonde]

Heard from a doctor on this one regarding Vitamin D3 and multiple sclerosis... "It looks to be genetic; many of us have thought it was a conversion issue and/or low sun exposure."

http://www.ncbi.nlm.nih.gov/pubmed/22896638

[issie]

Saw a new endocronologist today and will be having the 1,25 Vit D blood draw done first thing in the morning. We will see. She says my D levels are wayyyyy too low. She thinks that unless there is a kidney dysfunction somewhere - that the 1,25 levels will probably be okay - FYI. Since, we know there are dysfunctions with my kidneys becaues of the renin and aldosterone - maybe, this is why I can't get my D levels up. I'll let you know what I find out.

Issie

[sue1234]

Issie, let us know what you find out. I had my labs drawn a week ago tomorrow, and trying to be patient as I wait for the call on the results.

[issie]

Will do. She is checking a whole lot of things on me - in regard to my thyroid and also adrenals and blood sugar things. We will see what comes of it.

Issie

[HopeSprings]

Got my results today - still low on Vitamin D, 25-Hydroxy, but normal on 1,25di-OH. Guess this enzyme deficiency isn't my cause. I would like to know why my multi-vitamin with 1000mg of Vit. D isn't enough to keep my levels up though.

[looneymom]

My son takes a vitamin d supplement because his is way too low. He has been retested but it only came about 5 points. He takes the D3. Our GP told us to up the dosage. So we did that and his headache pain level went from an 8 to a( 5 out of 10 on a pain level scale).

[issie]

I'm on 10,000 a day and mine is still too low.

Issie

[Katybug]

I just had my first endocrinologist appt today and asked about my chronically low vit D. He feels given the wide variety of symptoms including this, that regardless of how any of the tests come out, that I am likely Celiac or gluten intolerant. He said he doesn't think it will explain all my symptoms but that he supports me going gluten free. He said he is finding that gluten issues are one of the major causes of Vit D deficiency. I guess we'll see once I've been off gluten for a while if my D levels finally go up.