What the heck is going on with my vitamin D levels?

[NilaJones]

I'm hoping you folks can offer some insight.

A couple years ago, I was tested and had low vitamin D. And I had some pretty bad symptoms from it (fatigue, extreme sunburning from miniscule exposure).

After a year and 9 months of supplements (oral and light), I overshot the mark and had the alarmingly high level of 136. That was this past summer.

I stopped the supplements... then I forgot and started them again for a few weeks in october... then stopped again. None since mid-october. No calcium since then, either, as it was also high

Since Nov 1st I have been in the subtropics, camping, and outdoors wearing shorts every day from 9 or 10 am till after dark. It is almost always sunny where I am.

But I started to have mild deficiency symptoms again -- sunburn, and craving the sun. So I went in for a test, and my level is now 60. Calcium is normal.

I do take vitamin K2. I only bathe every 2-4 days, so I am not removing vit D from my skin before it gets absorbed.

I am wondering how on earth I used up my massive oversupply of vitamin D so quickly, and why I am not making enough on a daily basis to have a higher blood level than I do.

Any ideas?

 

[drob31]

Have you ever had your 1,25 levels checked? (active D).

 

[NilaJones]

I don't actually know. I thought that test WAS for the active form, but I called just now and asked. It is for hydroxy, not dihydroxy.

 

[Alea Ishikawa]

60 is good, actually. Below 30 is considered low.

Chronically ill folks are known for low Vitamin D. Perhaps a lower level of supplementation is needed - something to keep you around 60?

I also try to keep in mind that low Vitamin D might only be an indicator and not the full story.

 

[Mij]

The last few years in Canada labs raised "ideal" levels to 75-200. It used to be 25-100, with potential toxic levels >250.

My 25-HYDR levels went up to 144 but I use it up fast too, my levels went back down after I stopped supplementation for one month. My 1-25DIHY went up to 153 (40-150). My doctor said that blood tests aren't that accurate.

 

[alex3619]

The test that really matters is 1,25 D (calcitriol). This is important because inflammation can cause high 1,25 and low 25 D, so if you supplement you can drive 1,25 too high. Its why both need testing, and of the two the active D calcitriol is more important.

 

[sarah darwins]

The test that really matters is 1,25 D (calcitriol). This is important because inflammation can cause high 1,25 and low 25 D, so if you supplement you can drive 1,25 too high. Its why both need testing, and of the two the active D calcitriol is more important.

Hi @alex3619 - This seems very on point for me.

I've just had a batch of haematology results back and have low 25 D but normal range 1.25 D. At least, that's how I read the results:

Vitamin D3 (25 OH-) — 13.5 (reference range 20 - 43 g/L; the lab suggests < 30 is insufficient, < 20 deficient)

1.25 Di-OH Vitamin D — 44.8 (reference range 20 - 75 pg/mL)

I'm going to be seeing KDM in Belgium for a follow-up in a few weeks, with more test results to come, but from what you saying he might see this as indicating inflammation rather than deficiency. Have I understood you right?

 

[alex3619]

1.25 Di-OH Vitamin D — 44.8 (reference range 20 - 75 pg/mL)

I'm going to be seeing KDM in Belgium for a follow-up in a few weeks, with more test results to come, but from what you saying he might see this as indicating inflammation rather than deficiency. Have I understood you right?

Yes, I think that is right. Of course we are still guessing as to the exact mechanism driving this.

 

[sarah darwins]

Yes, I think that is right. Of course we are still guessing as to the exact mechanism driving this.

Thanks, Alex. I've just been ploughing through forum threads which mention Vit D and it's mighty confusing, isn't it (why can't anything be simple in this illness?!). So far, the only conclusion I've reached is that I'd like to get a sunlamp!, partly because the bloody weather here has been terrible so far this year. I moved back from Canada because I was sick of the cold, but I've hardly been warm once since returning to the UK. Currently, July in Cornwall is mostly fog.

Anyway ... I shall keep ploughing on. I gather KDM talks about Vit D in this - MECFS Alert video - so I'll watch that when I can summon the energy (I find online videos really tiring). Cheers and best wishes.

 

[Stevew]

I'm hoping you folks can offer some insight.

A couple years ago, I was tested and had low vitamin D. And I had some pretty bad symptoms from it (fatigue, extreme sunburning from miniscule exposure).

After a year and 9 months of supplements (oral and light), I overshot the mark and had the alarmingly high level of 136. That was this past summer.

I stopped the supplements... then I forgot and started them again for a few weeks in october... then stopped again. None since mid-october. No calcium since then, either, as it was also high

Since Nov 1st I have been in the subtropics, camping, and outdoors wearing shorts every day from 9 or 10 am till after dark. It is almost always sunny where I am.

But I started to have mild deficiency symptoms again -- sunburn, and craving the sun. So I went in for a test, and my level is now 60. Calcium is normal.

I do take vitamin K2. I only bathe every 2-4 days, so I am not removing vit D from my skin before it gets absorbed.

I am wondering how on earth I used up my massive oversupply of vitamin D so quickly, and why I am not making enough on a daily basis to have a higher blood level than I do.

Any ideas?

How much were you taking to get up to 136? How much time between the tests (136 vs 60)? The half-life of 25(OH)D is around 70 days. When you were at 136 you stopped supplementing. Without supplementing you might go down to say 30. Then after 70 days you would drop down by (136-30)/2 = 53 ending up at 136-53 = 83. The next 70 days would have you drop down by (83-30)/2 = 26 ending up at 83-26 = 57. Were there around 140 days between the two tests?

60 is not a bad level. The trick is to find out how much D3 to take to keep you at 60. With the 70 day half-life you need to wait several months to see where you'll end up. This chart shows 60 is wonderful.
http://www.grassrootshealth.net/media/download/dip_with_numbers_8-24-12.pdf