Poll for Vitamin D supplement tolerance and calcitriol levels

[L'engle]

Looking on the website for my province about vitamin d there is a paragraph that basically says far too many people are getting vitamin D tests these days and it costs the system too much. The 25 OH test is being offered on a patient pay basis from labs here now without a doctor needed. But the 1,25 test is said to be something that should only be ordered in special cases and there isn't an option for patients to buy direct from the lab. So the idea of a GP being willing to order it seems unlikely.

I talked to a lab rep who was very kind and helpful. It seems my best option is probably to see if a naturopath will order the tests, though it will likely mean out of town trips and inconvenience and expense. I need the test though, pretty clearly.

 

[L'engle]

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.....

Sorry to hear of your terrible experience! I hope the levels eventually went down. Did you take anything to lower them or did they decrease on their own? I hope you are doing better now! If you are feeling very poorly don't feel obligated to reply.

 

[L'engle]

Without hydrocortisone (low dose) I have dysregulation of calcium and D (25 OH and 1.25).

Hi Athene,

What form does this take? I'm curious since I also don't tolerate vitamin d from supplements or even food.

 

[Oberon]

Pre-CFS I was able to tolerate Vitamin D3 without any issues.

CFS and on I tried 5 different supplements because I i am deficient in Vitamin D. Every single one gave me a bad reaction and I was convinced I couldn't tolerate Vitamin D in supplemental form.

I decided to try a Vegan D3 supplement and have been taking it for months without any issues.

I believe my bad reactions were actually due to a sensitivity to the wool regular D3 is made of.

@L'engle If you're in Ontario you can ask your GP to write you a requisition and they probably will, but you will have to pay for it as OHIP won't cover it. I believe it's around $50.00 and It may be easier than the naturopath route.

 

[Johannes]

All of my attempts to supplement Vitamin D ended in immediate failure. My GI tract does not take kindly to fat-solved supplements.

However, I do notice a sizeable positive effect of sun exposure on my energy levels and sense of general well-being/malaise. I haven't figured out exactly why.

One possibility is UV-B induced synthesis of Vitamin D, which has at least two known beneficial effects for PWME:
- Vitamin D [1,25] induces tyrosine hydroxylase, the rate-limiting enzyme in the synthesis of dopamine [link]. The dopamine circuitry is known to be dysregulated in ME/CFS, its levels much below normal.
- As mentioned earlier in this thread: activation of the Vitamin D receptor stimulates enzyme CBS, and thus improves the degradation of Hcy to cysteine, and perhaps synthesis of GSH, via the trans-sulfuration pathway.

We also know that sun and/or light exposure and serotonin synthesis/release are linked, even if we don't understand exactly how. Serotonin levels are low in ME, sometimes (nearly) undetectable. This might be a factor as well.

It would be interesting to know whether PWME who don't tolerate D3 supplementation still benefit from regular sun exposure (or mimicry thereof via specific lamps). If there is indeed such a difference, I wonder what accounts for it.

@J.G
Vitamin D cause really bad inflammation to my bowel. I inject vitamin D intra muscularly 2500 micrograms monthly. My calsitriol level is 140nmol/l (reference level 50-75nmol/l). I have noticed that vitamin D helps me a lot but there is a difference whether I get it from the sun or from the injection. Both ways reduce or takes away approximately 20 different symptoms, some of which may be MCAS symptoms, others CFS symptoms. However, I get a lot more energy from the sunshine compared to injections. Actually, it may be that injections don't give energy to me too much.

I am now about to test bright light theraphy. According to studies, it affects to serotonin and possibly also dopamine production. Both of them increases. This is to be seen in the next couple of weeks.

Since the sun is not shining here in Finland enough between October and March, my symptoms (fatigue, depression, anxiety) have been worsening starting from October. I hope bright light theraphy would help but how about narrow band UVB light exposure? Has anybody any experience on that? There are narrow band UVB lamps that you can buy. They increase vitamin D production without tanning. Tanning comes from UVA.

 

[MeSci]

@J.G
I am now about to test bright light theraphy. According to studies, it affects to serotonin and possibly also dopamine production. Both of them increases. This is to be seen in the next couple of weeks.

Since the sun is not shining here in Finland enough between October and March, my symptoms (fatigue, depression, anxiety) have been worsening starting from October. I hope bright light theraphy would help but how about narrow band UVB light exposure? Has anybody any experience on that? There are narrow band UVB lamps that you can buy. They increase vitamin D production without tanning. Tanning comes from UVA.

There are a lot of threads on UVB lamp exposure, for example here https://forums.phoenixrising.me/threads/how-does-vitamin-d-absorption-work.28654/#post-437187

I'm not using it at the moment as I don't have the energy or the brainpower!

 

[Johannes]

There are a lot of threads on UVB lamp exposure, for example here https://forums.phoenixrising.me/threads/how-does-vitamin-d-absorption-work.28654/#post-437187

I'm not using it at the moment as I don't have the energy or the brainpower!

Thank you @MeSci !

 

[L'engle]

I started taking vitamins A and K a couple of days ago and have noticed an improvement. Perhaps they had become imbalanced as I have never taken vitamin A and have taken most of the other major vitamins. At any rate it's too soon to say if this is a solution to the problem but I do seem to be better the last couple of days. Taking the vitamins A and K seems to shift the balance away from high calcium symptoms.

 

[L'engle]

I continued to take vitamin A, taking quite a large amount for two weeks. It has caused a noticeable improvement. I stopped taking it when I started to feel worse from it. I'm now looking into vitamin K more closely and also vitamin E. While the balance has shifted away from magnesium loss, I am still over-absorbing calcium, which has happened to me when I took in vitamin d but has always gone away much more quickly in the past than this time. I'm moving away from the idea of vitamin D over-sensitivity and to balancing these co-factors. I'm still having huge difficulties but I am better off than I was a month ago when I was just relying on vitamin D attrition to solve the problem.

 

[Johannes]

@J.G
Vitamin D cause really bad inflammation to my bowel. I inject vitamin D intra muscularly 2500 micrograms monthly. My calsitriol level is 140nmol/l (reference level 50-75nmol/l). I have noticed that vitamin D helps me a lot but there is a difference whether I get it from the sun or from the injection. Both ways reduce or takes away approximately 20 different symptoms, some of which may be MCAS symptoms, others CFS symptoms. However, I get a lot more energy from the sunshine compared to injections. Actually, it may be that injections don't give energy to me too much.

I am now about to test bright light theraphy. According to studies, it affects to serotonin and possibly also dopamine production. Both of them increases. This is to be seen in the next couple of weeks.

Since the sun is not shining here in Finland enough between October and March, my symptoms (fatigue, depression, anxiety) have been worsening starting from October. I hope bright light theraphy would help but how about narrow band UVB light exposure? Has anybody any experience on that? There are narrow band UVB lamps that you can buy. They increase vitamin D production without tanning. Tanning comes from UVA.

It seems that bright light teraphy is not helping me

@J.G It seems that we get many different reactions from the sun. Serotonin seems to be very important but not the only one that is important. Sunshine rises our dopamine, serotonin, noradrenaline (= norepinefrine) and BDNF. These all have an effect on fatigue. And you can get them from bright light theraphy too. What is BDNF? Here's some information about it:

https://www.healthrising.org/blog/2...ronal-exhaustion-chronic-fatigue-syndrome-pt/

https://www.healthrising.org/blog/2...ral-ways-raise-bdnf-chronic-fatigue-syndrome/

BDNF and diet
https://www.healthrising.org/blog/2...ral-ways-raise-bdnf-chronic-fatigue-syndrome/

BDNF and sunshine
https://www.ncbi.nlm.nih.gov/m/pubmed/23133609/

It seems that my vitamin D3 level has not risen up as much as was expected. I am dissappointed. I lack energy. My guess is that I would also need serotonin and BDNF with it. But...I have been having this new higher dosage of vitamin 3D for only four months and I know it takes atleast from half a year to a year to stabilase the system with injections. So far my doctor thinks I may have problems to convert D3 to D1,25 OR my mitochondrios are not working as they should. My bet is the latter. Now summer begins in Finland, so my vitamin levels will be measured at the end of July when they are in their peak and again in October. If they are low in October, I wil build a narrow band UVB lighting and start to use it.

What comes to dopamine levels, I have a gene mutation in COMT 472, which causes my body to have an excess of dopamine and noradrenaline (norepinefrine).

I just wish it didn't take so much time to figure out what is wrong and what could help.

 

[Blazer95]

My Calcitriol (1,25) was 54ng/L but my Califerol (25-OH) only 27.

Since the normal Median value of Calcitriol is usually arround 40ngL it does Look kinda high to me.