Poll for Vitamin D supplement tolerance and calcitriol levels

[xrayspex]

vitamin d supps and sun/heat both make me worse

 

[knackers323]

haven't done the poll because its only early days yet but I recently started high dose vitamin D as per Dr Coimbra's treatment.

I have only just started it and ive seen others mention it made them tired. It hasnt so far really made me tired through the day but I am having the deapest sleep I have possibly ever had.

For the first time in as long as I can remember I am sleeping right through the night and dreaming again.

The deep sleep feels really good and restorative so im hoping it will help the body recover.

The only other thing ive tried that I can remember had similar effects was a short trial of hgh so I wonder if the D3 has any effect on hgh levels?

Hgh is said to be one of the best treatments fo pwcfs. I wonder if thats because it is a chain of amino acids and it somehow fits into the fluge/mella theory and the fact some people are finding benefits from amino acids.

There was a guy around about 10 years ago that claimed a big recovery rate by treating with amino acids. If it worked so well we probably wouldn't all still be on here though.

Anyone trying the D3 be carefull of the brand you use. I used one brand and felt the effects on the first day. I ran out and went backwards after a day. I began with another brand fir a week and felt nothing.

Ive gone back on the original, NOW liquid D3 and felt the benefit the first night again

 

[Msinnott]

I thought I would come update I am almost a year and half post op from have two enlarged parathyriods removed. I couldn't do any vit d for the first 14months I could only get it from the sun. Guessing the body can regulate it that way. First 8 months tanning would make me so tired and fatigue. After that I didn't get tired anymore. It was only the last two months I have been able to tolerate 2500iu of vit d and not have symptoms like I use to. I think the reason it took me so long to finally tolerate vit d was because my bones were taking up more magnesium than I could ingest or absorb. Also know as hungry bone syndrome. I had to gradual work up my magnesium too because too much would crash my adrenals. I am taking 650mgs a day now.

 

[Athene*]

I thought I would come update I am almost a year and half post op from have two enlarged parathyriods removed. I couldn't do any vit d for the first 14months I could only get it from the sun. Guessing the body can regulate it that way. First 8 months tanning would make me so tired and fatigue. After that I didn't get tired anymore. It was only the last two months I have been able to tolerate 2500iu of vit d and not have symptoms like I use to. I think the reason it took me so long to finally tolerate vit d was because my bones were taking up more magnesium than I could ingest or absorb. Also know as hungry bone syndrome. I had to gradual work up my magnesium too because too much would crash my adrenals. I am taking 650mgs a day now.

Thanks so much for the update. I saved your information on your last post for future reference. I can't tolerate any form of vitamin D or calcium without hypercalcemia symptoms. It was interesting that your PTH was normal. Many doctors would have discounted the possibility of parathyroid issues with that result. I have high normal D3 (25 OH D) and I get zero sun and don't supplement. I'm going to get vitamin D 1.25 and PTH checked if I can. Doctors here have been useless..if my PTH is normal and my D3 is high normal am I likely to have parathyroid issues - my calcium is normal (high end of normal range)? Was your calcium elevated before diagnosis?
*edit, sorry - just saw what you said about calcium on your last post. It has to be elevated for hyperparathyroidism, right? (You were lucky you had good doctors)

 

[Msinnott]

I always had normal serum calcium but all the symptoms of having high calcium And much research I asked my dr to check my ionized calcium. And it was elevated not a lot but the more my active vit d dropped the more my ionized calcium went up. I found out higher active vit d can mask hyperparathyroid. The month before I had surgery my serum calcium was 10.1 (8.5-10) ionized calcium 1.41 (1.1-1.3) and pth was 29 (14-65) forgot to mention I went to many drs who blew me off and told me I didn't have the disease I self referred to Norman parathyriod center in Tampa. They do 5-10 surgeries a day all year round. I wanted to go to a place that knew what they were doing especially when you have someone messing around in your neck looking for something the size of a grain of rice. That's how big a normal parathyriod is.

 

[Msinnott]

i forgot to say right after my surgery my pth dropped to 8 which is normal for how high my calcium was.

 

[Athene*]

Thanks again for the update @Msinnott I was just on the Norman centre site the other night and I ever needed surgery that's where I'd head for! I'm so glad you got it sorted out there and due to your own perserverance too - well done you.

I've just found out I'm hypo adrenal again (I have very bad secondary adrenal insufficiency). I am on steroids (hydrocortisone) again now and the hypecalcemia symptoms went away almost immediately. My serum calcium was normal like you (high normal actually), and still I got symptoms. But whenever I'm on steroids my serum 'corrected calcium' goes quite low, as does my D3 (didn't check 1.25 D at the time)...

My endocrinologist tells me that adrenal insufficiency can cause hypercalcemia (even though my calcium was high normal it is highish for my age and had risen quite a lot from last time without calcium supplementation, and I had hypercalcemia symptoms). I don't entirely trust him, or any doctor, after all the years of being messed with, but I think my case might be different to yours because I never supplement D and get zero sunshine here for the last several months (and very little in summer) and yet my serum D3 was high normal (and my D 1.25 was high too, which he finally checked).

He tells me my problem is inflammation from autoimmune disease and that raises 1.25 D (I have autoimmune pernicious anemia, hypothyroidism and celiac) and that the 1.25 D will come down with the steroids.

I still don't get why my D3 was high. He says it's because I actually need calcium (so the D3 is driven up) and that I will be able to take calcium when the inflammation calms down...

I'm not sure. Can I ask if your D was always high just because you supplemented it, or was it ever high for no apparent reason, like mine?

And if I test for ionised calcium would that be the safest thing to do, or could the steroids reduce that too I wonder?

Now, I'm worried that I could have hyperparathyroidism that's just being suppressed by steroids, but I don't really know if steroids could do that...!

 

[Msinnott]

Before surgery taking vit d pushed my 1,25 high because when you body has higher levels of calcium it doesn't need the vit d it helps absorb calcium. I stopped taking any vit d when my active vit d got to 145. It took almost two years of no vit d for my active levels to come back down to the lower range of 65. I am the complete opposite now where I burn through vit d and magnesium. I just got blood work done a bunch of tests see where I am at vit d low 29.1, calcium 8.7, phosphorus 2.6, pth 56. I am starting to think my body was so severely depleted of magnesium it's taken a long time for my levels to come up. I have been reading that very low levels will cause a block on pth and it won't be able to raise calcium into the normal range. Where just low magnesium can cause an increase in pth and low vit d. I think i have stepped up some from very low magnesium. I am currently trying to take 800mgs of magnesium divided and 7500iu of vit d a day.

 

[kangaSue]

For those that find that Vitamin D makes them worse, how do they fare with vitamins A, E and K too. These are all the lipid soluble vitamins so maybe the problem is with lipids rather than just Vitamin D?

I don't have ME/CFS but have gastroparesis as part of a seriously screwed up GI system where anything that is an oil or fat seriously aggravates things for me so maybe this is a gut dysbiosis issue for many?

I see most people don't have an elevated calciotrol level in the poll. It's not something I've had tested myself so have no idea what it is but I'm one of those who has antibodies to voltage gated calcium channels, albeit in the normal range, and wondering if anyone that doesn't tolerate Vitamin D has been tested for anti-VGCC antibodies too.

https://www.ncbi.nlm.nih.gov/pubmed/16946007

 

[Athene*]

I've always felt fine taking vitamins A,E and K @kangaSue. I can't tolerate vitamin D by oral supplement or transdermal cream.

I've never been tested for anti-VGCC antibodies but have other auto-immune diseases (coeliac, pernicious anemia, hypothyroidism), which I treat for. As you probably know, autoimmunity can cause dysregulation of just about any process.

Since I've been back on low dose hydrocortisone (10mg daily i.e. two doses of 5mg) for the past 10 days or so, I've been feeling hugely improved. It always brings down inflammation fast for me. I am now also using a narrow band UVB lamp very carefully (only on skin not usually exposed to sunlight) and I hope that will help me to self-regulate my vitamin D levels, similar to how sunshine does (very little sun in this country). So far, I'm fine with it and have no side effects.

My endocrinologist tells me that people with autoimmune disease often have VDR receptor problems and so they don't uptake vitamin D normally. So those with autoimmune disease need to maintain higher serum levels of D3 - so that there's enough around for faulty receptor to work with (or words to that effect). This seems to be the case for me - when my serum D3 (25 OH D) is 129 nmol/L it doesn't seem to be enough. I'm going to aim for serum D3 175nmol/L to 200nmol/L and see how that goes. My calcium is low normal on hydrocortisone and D3 comes down too, so I'm going to try supplementing a little calcium soon. Endo is checking PTH but expects it to be normal (I had forgotten it tested normal a couple of yrs ago).

Without hydrocortisone (low dose) I have dysregulation of calcium and D (25 OH and 1.25). I'm hoping when I get my B12 and folate and thyroxine to optimal levels I will get inflammation down and won't need hydrocortisone, but this is an ongoing process and has required multiple other B vitamins and minerals in higher than usual doses. I had become catastrophically low in B12 and folate several years ago, without realising it, because my serum B12 and folate were very high. However on testing methylmalonic acid (MMU:urine test) around that time I showed a massive deficiency. Even after a year of methylb12 injections 1mg to 2mg daily & methylfolate high dose I was only somewhat improved on MMA, but at least I'm improving.

 

[kangaSue]

My endocrinologist tells me that people with autoimmune disease often have VDR receptor problems and so they don't uptake vitamin D normally. So those with autoimmune disease need to maintain higher serum levels of D3 - so that there's enough around for faulty receptor to work with (or words to that effect).

I'm hoping that to be the case and contributing to chronic GI dysfunction which I hope to make inroads on with a megadose injection of cholecilceferol even though I haven't tested positive for any known autoimmune condition yet;
https://www.mja.com.au/journal/2005...-megadose-cholecalciferol-treatment-vitamin-d

Seems to be successful for fatigue and pain issues for some with Fibromyalgia too;
http://www.healio.com/rheumatology/...loskeletal-pain-in-patients-with-fibromyalgia

 

[alwayshopeful]

How do you get the 1,25 D test? I can't find a doctor that will order it for me

 

[Athene*]

How do you get the 1,25 D test? I can't find a doctor that will order it for me

My doctor agreed to take blood and send to a private lab she knows of, but I had to pay for it, unlike my usual blood tests which are free and sent to public hospital lab

 

[pattismith]

I am in the pack with low/normal calcitriol and no clinical effect with vitamine D supplementation.

The question would be : does provitamine D supplementation has any effect on Calcitriol level for this pack!

Also what I have found by digging on vitD metabolism:

It seems that low 25D + high 1.25D is what we get when we have not enough calcium intake!

https://www.vitamindcouncil.org/activated-vitamin-d-vs-25ohd-levels-what-should-you-measure/

 

[Athene*]

I am in the pack with low/normal calcitriol and no clinical effect with vitamine D supplementation.

The question would be : does provitamine D supplementation has any effect on Calcitriol level for this pack!

Also what I have found by digging on vitD metabolism:

Thanks for this article @pattismith It's good to see it because that's something I've been doing (i.e. calcium supplementation) the last couple of weeks just by chance because I read something on another forum, and it's definitely helping. I'm taking a tablet which has 1000mg calcium with 600iu vitamin D (started on half those doses for first week). It's the first time I've been able to tolerate even this small amount of vitamin D. I intend to increase the D3. Fingers crossed...
P.S.
I also take magnesium, K2, zinc and other minerals

 

[L'engle]

Reviving this thread after 2.5 years. I have been having trouble with vitamin d since taking lithium orotate in 2013. Before that I had no problems with it.

Now my calcium and magnesium get out of balance very easily and take months/years to regulate.

I accidentally took in a fair amount of dietary vitamin d last fall and have been having massive sleep issues relating to the balance of magnesium and calcium. I seem to over-absorb both (which would be consistent with high 1,25 D but I haven't had the test) and have to spell them off each other in order to be able to sleep. This should get easier when the vitamin d is lower again and I am not over-absorbing either calcium or magnesium but it is a rough go in the meantime and I don't know how much longer it will take for excess vitamin d to wear off. All based on symptoms, but I have been observing the effects for years and managing the symptoms mostly well until the last few months.

Interested to hear from others about their vitamin d experiences. I've never heard of anyone having a problem like mine but I would certainly like to know what others have been through. Thanks!

 

[Gondwanaland]

massive sleep issues

Have you tried B2 at bedtime?

 

[nandixon]

@L'engle, The first order of business is to find out if your 1,25-dihydroxyvitamin D3 (aka calcitriol) is actually high or not. I'm not sure how it works in Canada but you may be able to use a direct-to-consumer laboratory testing service.

I've ordered that test in the US from a couple of different such companies (for example Direct Labs). They provide you with a requisition order which you then take to a blood draw facility (like LabCorp or Quest Diagnostics, for example). No doctor visit is needed as an online doctor signs off on the test order for you.

My current thinking on this situation is that one way the vitamin D problem might be happening for a subset of people with ME/CFS is that:

Even a subgroup of perfectly healthy people can have high calcitriol levels for genetic reasons. These otherwise perfectly healthy people apparently don't experience any symptoms from this except that they constitute a disproportionately higher percentage of the general population who are prone to getting certain types of kidney stones.

However, when someone with ME/CFS has this same genetic background then the higher levels of calcitriol may exacerbate what may be an underlying dysregulated inflammatory process in ME/CFS.

It might be that either the already high (or high normal) calcitriol levels rise even further, beyond an acceptable level, or that certain vitamin D receptors (VDR) are increased or made more sensitive to the effects of calcitriol in ME/CFS, among other possibilities.

If I consume too much vitamin D (from food sources like salmon, for example), I experience the same delayed effect (24+ hours) and the same delayed symptoms (primarily increased energy impairment/”fatigue”) as with PEM from physically over-exerting myself. I've not had the vitamin D effect last more than about a day, however, unlike from physical over-exertion which can be much more protracted.

So your experience seems somewhat different from mine and I would get calcitriol (and also “regular” vitamin D, i.e., 25-hydroxyvitamin D3 at the same time) checked first.

Good luck either way!

 

[dr. Arf]

Reviving this thread after 2.5 years. I have been having trouble with vitamin d since taking lithium orotate in 2013. Before that I had no problems with it.

Now my calcium and magnesium get out of balance very easily and take months/years to regulate.

I accidentally took in a fair amount of dietary vitamin d last fall and have been having massive sleep issues relating to the balance of magnesium and calcium. I seem to over-absorb both (which would be consistent with high 1,25 D but I haven't had the test) and have to spell them off each other in order to be able to sleep. This should get easier when the vitamin d is lower again and I am not over-absorbing either calcium or magnesium but it is a rough go in the meantime and I don't know how much longer it will take for excess vitamin d to wear off. All based on symptoms, but I have been observing the effects for years and managing the symptoms mostly well until the last few months.

Interested to hear from others about their vitamin d experiences. I've never heard of anyone having a problem like mine but I would certainly like to know what others have been through. Thanks!

I will never supplement vitamin D again, I had huge problems, after taking megadoses for 20 days..
It also took ages for the high vitamin D (1.25 and 0.25) levels to lower in my body.
Professor KDM also said that for a subgroup of his patients supplementing vitamin D was creating problems.....

 

[L'engle]

@L'engle, The first order of business is to find out if your 1,25-dihydroxyvitamin D3 (aka calcitriol) is actually high or not. I'm not sure how it works in Canada but you may be able to use a direct-to-consumer laboratory testing service.

I've ordered that test in the US from a couple of different such companies (for example Direct Labs). They provide you with a requisition order which you then take to a blood draw facility (like LabCorp or Quest Diagnostics, for example). No doctor visit is needed as an online doctor signs off on the test order for you.

It can be difficult to get these tests in Canada as you do need a doctor to get requisitions. So trick or treating for a doctor who is willing to order the test while having to explain the situation to them has not seemed worth the effort. That's why I haven't done it.

Anyway, thanks for your reply! It is very informative and helps me to understand the potential situation.

Edit: It seems a naturopath can order the tests but they tend to expect to you enroll in a long process which I have little energy or expense for. I'm going to see if one will make me an exception and order the tests anyway. I'm poor and basically housebound at the moment so it isn't easy to go to appointments and such just to get a lab order.