Vitamin D Levels Still Low. Why?

[Darlene]

‎7 months ago my rheumatologist told me my i was deficient in vitamin d and prescribed 50,000 IU once a week. well, i have been taking the vitamin d for 7 months, had my blood drawn the other day, and my vitamin d level is still exactly the same. makes me wonder who else i could be deficient in. who can i talk to, to find out how i can raise my vitamin d level? and wonder what would cause it to be so low when i ve been take high doses of vitamin d.

[sue1234]

I would wonder about a gut being somewhat damaged from something(gluten?, bacteria?, who knows?) and not letting the body absorb fat-soluble vitamins. Just a thought.

[bellgirl]

I was going to say the same as Sue....Malabsorption How is your diet; that could be a factor, too.

[misstraci]

I'm not sure why it would still be low and it does make you question what else could be low and/or going on for it not to absorb.

How does the 50iu make you feel? I have a prescrip for that as well. I am very hesitant to take it as I had read such a high does can actually harden the arteries, of course, too low is bad and so is too high, its one of those things you know. Also I was concerned about taking mine because I didn't want to make me sick at my stomach, does it do that to you?

[LMG]

I too have tested for low D and just got the script for the high prescription dose. Seems like D doesn't agree with everyone and wondered what symptoms it helped or if it caused side effects.

[Relax86]

I take a high dose of D and was still deficient. I tan once a week. Never did I abuse my skin in the sun, but honestly it helps support the vitamin and gives me some color that POTs takes away.

[Ashelton80]

malabsorption and doctors usually prescribe the synthetic form of D2. should be taking D3.

[E Soskis]

I'm sure you have spoken to your MD about this?

Few things come to mind:

1. You lack the proper enzymes that allow you to absorb enough Vitamin D

2. You may not be getting enough sun exposure which assists in the uptake and absorption of Vit D

3. Something you are taking (prescription, herbal, etc..) is blocking the Vitamin D

Some people simply must have IV Vitamin D as it just does not absorb from the GI system.....

[SeattleRain]

This is extremely common. Vitamin D is absorbed very poorly when taken orally, as others have pointed out. This is because Vitamin D supplements cannot synthesize into a sulfate like Vitamin D that's produced by your skin.

Vitamin D is best produced by exposure to the sun. This can be a problem, as we're now into the winter months and being in the Northern Hemisphere, you could lay outside naked all day long and still not get enough UVB rays to produce an adequate amount of Vitamin D.

The best option in this case is a tanning bed. The large study done decades ago that sparked the idea that tanning beds cause cancer were partly flawed as they utilized tanning beds with magnetic ballasts. Magnetic ballasts emit EMF radiation which causes cancer. You're not supposed to go near these things yet in a tanning bed with one, you're only inches away. So, only use tanning beds that use electronic ballasts, which don't emit any cancer causing radiation.

They say that tanning beds can cause a 75% increase in risk of getting melanoma. Given that the risk of getting melanoma starts off at two tenths of a percent, this is still extremely low (under 1%).

"Johan Moan, a scientist and researcher from the Department of Radiation Biology at OUH's Institute for Cancer Research found that the benefits derived from exposure to vitamin D-producing UV rays far outweigh the miniscule risk of developing cutaneous malignant melanoma (CMM). In fact, it is primarily overexposure in the form of sunburns that is responsible for UV-related cancer risk."

If you're worried about that, you can get a UVB only (No UVA rays) tanning bed that will not burn you or cause you to tan - and is only used for the purpose of increasing your Vitamin D levels.

There was another study done that showed Vitamin D levels skyrocketed with tanning bed use - something like 200 - 400% after a few weeks, tanning every other day - while the group that took Vitamin D supplements orally had very small increases in percentages (something like under 20% if I remember right). I'll try to find that study later.

Anyways, I'm rambling. I try to tan every 2 to 3 days. I bought a tanning bed for $1,200 - it hangs on my wall (doesn't take much space) and compared to the cost of going to a salon this often, I've already saved hundreds of dollars and saved a lot of time. If tanning in a salon isn't an option, then a Vitamin D3 supplement is really your only choice - and I'm assuming yours is specifically D3 (not D2?)

[LMG]

Seattle Rain- Do you feel better from tanning? Or does your blood test show a higher level of D?

I have tried lower doses of d3 and tried again yesterday. Even 400 mg made me feel really dizzy. The first time I tried it in Sept, I felt better for a week or so and then felt dizzy and had some vertigo. Couldn't believe it was the D3 but this is the third time it happened. I tried a liquid emulsion and then a dry tablet.

Does anyone know if D2 (the synthetic prescription form) would be easier to tolerate?

Thanks for any ideas- I have severe migraines with POTS and have read that low levels of D are found in migraine sufferers. Read somewhere online that D and calcium supplementation could help with migraines.

[jackiemxoxo]

I agree with everyone else saying malabsorption, the same thing happened to me before. Eventually it went up then down again and now I am on supplements again. I can't complain though because I def feel a difference in energy when I take the vitamin d. You could try asking your doctor to switch the forms of the vitamin d they are giving you and maybe a different brand or something would work better.

[sue1234]

About getting vitamin D from tanning...I read last year that how tanning works, the oils that form when you sweat have something to do with the conversion of whatever into vitamin D in the skin. Then, you should not shower that oily film off for many hours to let it do its thing. I know that is simplistic, but can't remember the specifics!

Anyway, what I gleaned from that information was why I don't make vitamin D...I DON'T SWEAT ANYMORE. That's when I realized I would have to get it through oral form, whether pills or oily fish. But, if I also have an issue with absorbing it, then that's why I always keep coming back low. And, wonder about my other fat soluble vitamins, A E and K.

[Darlene]

no, vitamin d does not make me nauseated. and no, i havent spoken to my dr. about this. my neurologist called to tell me it was low, she never said to follow up with my dr. but i would assume i most definitely should. i am really sick of going to doctors though. they don't help you. like i am in pain all the time, i have burning inside my body (adrenaline surge?), tingling and numbness in hands and feet... i could go on and on. they never do any testing to see whats causing any of it. next time i see grubb i am going to ask if he can refer me to the Cleveland clinic. and if they don't help me, i give up. i don't understand why they can't give me something for pain. they give them them to drug seekers, but not the ones that need them i guess. dr. grubb suspects mast cell and told me to take h1 and h2 blockers. all i can say is, i am so tired of being sick. i have been denied for ssi twice, but am hoping to get approved at the hearing. not sure why i get denied. do they think i would go to college for several years if i wanted to be on ssi. so frustrated.

[SeattleRain]

Seattle Rain- Do you feel better from tanning? Or does your blood test show a higher level of D?

I have tried lower doses of d3 and tried again yesterday. Even 400 mg made me feel really dizzy. The first time I tried it in Sept, I felt better for a week or so and then felt dizzy and had some vertigo. Couldn't believe it was the D3 but this is the third time it happened. I tried a liquid emulsion and then a dry tablet.

Does anyone know if D2 (the synthetic prescription form) would be easier to tolerate?

Thanks for any ideas- I have severe migraines with POTS and have read that low levels of D are found in migraine sufferers. Read somewhere online that D and calcium supplementation could help with migraines.

I feel good after tanning and if I skip a few weeks, I can completely tell that my levels are getting low.

Getting dizzy is a normal side effect. Since it's not absorbed very well, you have to take a lot of it to get your blood serum levels up - and taking a lot of Vitamin D like that can be hard on your body.

What you could do is go get your levels tested (Get the 25(OH)D test - not the 1,25(OH)D test) and just see where you're starting at. Then, see if you can tolerate the D2 then go back after a month and see how your levels are doing. If you're under 50 ng/ml - you're deficient. Optimal is 50 - 80 ng/ml. A lot of labs still use outdated ranges so they'll tell you you're in the normal range even if you're substantially lower than the 50 ng/ml. Don't believe them!

You can see NorthernDarlene was taking 50k IU/week and her levels were still the same. Not surprising! An adult needs roughly 8,000 IU's of Vitamin D per day to get their serum levels above 40 ng/ml. That's 56,000 IU's per week. D3 converts something like 500x faster than D2. 1 unit of Cod liver oil = 4 units of D2. I'd say a switch to D2 for the sake of not feeling dizzy would defeat the purpose of taking Vitamin D in the first place - but that's just my opinion.

I wouldn't take a Vitamin D supplement unless I absolutely had to.

[Alex's mumma]

Great info SeattleRain!!! Thanks for the post! I had my POTS daughters Vit D levels checked a few months ago expecting them to be super low because this spring my younger non-POTS daughter had her levels drawn after a broken bone and hers were ready low (23). The POTS daughter got POTS April 10, 2012 and was literally bedridden for a couple of months and was outside not more than probably 10 hours total all summer so knowing how low the younger ones levels were when she's outside in the sun a lot more, I expected he POTS daughters Vit D levels to be almost non registering.

I began giving her Vit D 3 in low doses (500iu daily) to see if it made any difference in her symptoms...come to find out by process of elimination, the Vit D orally was not making any noticable difference in her symptoms and was in fact making her have severe Kidney pain on both sides that would not subside. After trips to Dr's, ER, CT scans for Kidney Stones and multiple other tests they said here was nothing wrong wih her Kidneys hat they could find. Frustrated (as I usually am after a trip to the ER), I came home and drug out all of her meds and supplements and did more extensive research in them. I got to Vit D - low and behold, found a whole group of people that have experienced the same Kidney pain from Vit D supplements. We stopped the Vit D - each day the Kidney pain was reduced a little. By the 4th day off the Vit D it was 100% gone. I later tried to put her on a multi vitamin with D in it... Ok like the 3rd day she said "mom, are you giving me VitaminD again" because her Kidneys hurt again. CRAZY!

At any rate, I have been baffled for for a couple of months about how her Vit D level came back in the 60 until I read your post here. I had been taking her tanning for the several weeks before we had her blood drawn because she was white as a ghost and the homecoming dance was coming up. (So I'm guessing that how her levels got elevated). I'd be curious to know what her levels are now ( I'm guessing low) but I don't want to get blood drawn just for that right now- she's been stuck enough this last 8 months, I think I'll take her back tanning starting tomorrow and see what happens.

[DoozlyGirl]

If malabsortion is an issue, and tanning is out of the question, then consider taking a form of D2 that bypasses digestion. There are subligual drops and lotions that will do just that.

I have always had low Vit D. Long before I learned of the differences between D3 and D2, I supplemented with 50K IU prescription Vit D and my levels only minimally raised until I alternated D2 and used up my stash of prescription D3.

I just recently learned through 23andme genome testing that I have 2 broken biochemical pathways that make Vit D. I am still trying to figure out how to overcome this, as taking a Vit D in tablet form is not the answer for me, that I have to fix the broken biochemistry and get my body to be able to support this function. I'm learning how to bypass these genetic transcription errors called SNPs (single nucleotide polymorphisms) with nutrition and supplementation. Maybe this is why others have such low Vit D levels???

Lyn

[misstraci]

Hey Seattlerain..... that is very interesting about the tanning bed. Good info that I was unaware of. Would you mind explaining to me the difference between the D3 and D2? Thank you.

[SeattleRain]

Hey Seattlerain..... that is very interesting about the tanning bed. Good info that I was unaware of. Would you mind explaining to me the difference between the D3 and D2? Thank you.

D2 (Ergocalciferol) is synthetic while D3 (Cholecalciferol) is not. D2 is made via a patented process and licensed to drug companies, which is why it's prescribed over D3 (a savvy doctor knows better and would have you go buy your own D3 supplement).

D3 is the better supplement to take orally as it's more potent and absorbs better without some of the risks D2 can pose, but tanning is the best way to go. Tanning causes your skin to synthesize D3 sulfate which is water soluble and travel throughout your blood stream freely while unsulfated D2/D3 needs "LDL" cholesterol (the "bad" kind) as a transport. There's research studies that suggest Vitamin D sulfate (again, only produced by exposure from the sun/tanning) is where a lot of the benefits come from - not just the D itself.

VitaminDCouncil.org is the leading authority on Vitamin D - was founded by a doctor who's spent most of his career focusing on it. Very interesting stuff!

[misstraci]

thanks for the explanation, no wonder my prescription I have (and haven't taken though) is D2. My dr gave me 50,000iu to take once a week for 8 weeks. i was concerned though about gi issues from that high of a dose. I think we'll have a tanning party at your place instead just kidding but it is something I may give a try! thanks again!!

[sue1234]

Doozly, are those SNPs (well, one of them) the ones from that article about the lady that had an issue with a gene for vitamin D, and when she took calcitriol, her POTS went away? Or, is there another set of SNPs to look at?

I also have the problem with the one SNP from the article, similar to the lady. I didn't tolerate the calcitriol any better than the prescription vitamin D, but I am going to try again. I've been tolerating more vitamin D lately, as I've been adding in magnesium often during the days, and it must be keeping my "seizure-like" feelings away.

Can you let me know what two SNPs you have an issue with?

[DoozlyGirl]

Sue,

I am not familiar with the article you mentioned. Do you have a link or place fo rme to look for it?

The Vit D Receptor (1,25 - dihydroxyvitamin D3) SNPs in Dr Amy Yasko's list of SNPs affecting methylation tested by 23andMe includes:

• VDR known as bsm/taq with an rs ID 1544410 C or T are the alleles with T being the risk allele.
  
• VDR (no reference initials) with an rs 731236 A or G are the alleles with G being the risk allele.
  

Have you checked out your Methylation SNPs yet? I am learning that there is much more to this than just treating with methylated forms of the appropriate B-12 and folate. MRHFR is only the tip of the iceberg. COMT and CBS SNPs must be cleared/bypassed before treating MTHFR and MTRR.

If you have GI issues like malabsorption/leaky gut or infectious agents, then those must be addressed first.

Best wishes connecting your dots...

Lyn

[targs66]

Wow, I find this all so interesting b/c of some recent things I learned: just recently, there were stories in the news about how grapefruit can "intensify" the effects of some kinds of drugs. I found this interesting b/c I am SO intolerant of even tiny doses of meds and some vitamins -- especially vit. D. My (unscientific) understanding is that some compound in grapefruits "deactivates" some of the enzymes necessary to metabolize some drugs. One of the researchers said something like with these enzymes being deactivated by the compounds in grapefruit, it's like taking 10 times the amount of the particular drugs.

Looking into it further, I read that the Cytochrome P450 enzymes metabolize drugs like vitamin D, other steroids and hormones. Low levels of these enzymes can have devastating health effects. Unfortunately, a lot of the stuff I read is beyond my understanding, especially how one can remedy the lack of these enzymes. Is there a difference, I wonder, between malabsorption and a lack of these requisite enzymes?

Anyone know anything about these cytochrome p450 enzymes? Thanks!

(As an aside, I do think there's a definite correlation between 1. my perpetually low levels of D 2. my move to cloudy northwest England and 3. my deteriorating health!)

[looneymom]

Are you able to get some sunlight? Sunlight will help. Even if you can just get 15 minutes a day.

[DoozlyGirl]

Hi targs,

I have several homozygous and several heterozygous CYP 450 defects. Haven't figured out what to do about them yet, but have learned that CYP 1B1 is responsible for breaking down estrogens, which corresponds with my personal history. 23andMe data show I have a homogygous (complete blockage) for a gene responsible for metabilizing 20 percent of common drugs, specifically a bunch of pain meds. I also have a partial blockage for detoxifying alcohol, ethanol, acetone, PEG, cig smoke, benzene, which is worse when I have had alcohol or haven't eaten. This totally makes sense for me. So I've been connecting even more dots with 23andMe.

Issues with vitamins can come from issues within the 4 methylation cycles that Dr Amy Yasko has studied. Likely not taking in the correct form or amount of vitamin that your body actually needs to enhance functioning. Some can't take folate or folinic acid, but do better with methylfolate, depending upon your own body chemistry's needs.

Lyn

[DoozlyGirl]

targs,

Found this tonight. It is a sample report from Genova Diagnostics for P450 and methylation genes. Check out the red writing on the left hand side of the page. Points out specific meds that are associated with various polymorphisms.

http://www.healthremedies.com/_uploaded_files/detoxigenomic_profile_.pdf

Lyn