savinggrace

[savinggrace]

@ariel

 

Good to hear from you Ariel.  I think of you often.  I hope you are doing okay.

 

Big hug,

Grace

[savinggrace]

@Tom2020

 

Hi Tom,

 

I am so sorry for not responding sooner.  I somehow missed this post.  This whole vitamin D thing is so confusing.  My last calcitriol was measured in 2021 and was in the 72.5 pg/ml which was in range.  (the normal range).  At the same time my D3 was 20 ng/ml.    My doctor prescribed some absurd amount of D2 which I never took as there was something like 5000 IU's in it to be taken one capsule per week (I may have it wrong but it was a lot) and I couldn't titrate it.  I kind of gave up on supplements than and resigned myself to using the sun as much as I can for 7 months or so per year. 

 

I think I understand what you wrote above and I am very interested.  Calcitriol is prescribed in mcg. and can be titrated?  Blood levels rise and fall pretty rapidly though the side effects may linger?  Vitamin D and all its various forms/tests are very complicated and also very misunderstood by many medical practitioners so I do a lot of research and your post has piqued my curiosity about giving calcitriol a try (after testing again of course; that last test was 3 years ago; I don't understand why this test isn't used more often.)

 

So calcitriol is a script and comes in super small doses and can be titrated?  Is the prescription form called calcitriol?

 

Thank you for typing out all you did.  I really appreciate it.  I will be saving this post for future reference.

 

I hope you are finding success with your titration/dosing schedule...one that your body tolerates.

 

Grace

[Tom2020]

Hi @savinggrace

 

Not to worry about the slow reply. It's good to hear from you. Vitamin D is a confusing subject and little-known it seems. I recently posted an overview of what I know, which you might find helpful before reading below.

 

54 minutes ago, savinggrace said:

My last calcitriol was measured in 2021 and was in the 72.5 pg/ml which was in range.  (the normal range).  At the same time my D3 was 20 ng/ml.  

The usual test for vitamin D deficiency measures the storage form (Calcidefiol, also known as calcidiol, 25-hydroxycholecalciferol, or 25-hydroxyvitamin D3 (abbreviated 25(OH)D3)). Might that be what you had tested rather than D3?

Calcitriol (the active form) is also sometimes measured but it's not a good indicator of deficiency because the body works hard to maintain a normal level by topping it up as needed from the storage form. So even if you're deficient in the storage form you will not be deficient in the active form unless you've more or less completely run out of the storage form or your kidneys have trouble converting the storage form to the active form.

 

If your 20ng/ml was indeed the storage form then it makes sense that that is deficient while the active form was normal.

 

Why were you unable to titrate the D2?

 

1 hour ago, savinggrace said:

Calcitriol is prescribed in mcg. and can be titrated?  Blood levels rise and fall pretty rapidly though the side effects may linger? 

It comes as oral capsules (0.25 mcg; 0.5 mcg), or oral liquid (1 mcg/mL). It's prescription-only in the US under the brand names Rocaltrol and Calcijex.

 

Yes, blood levels rise and fall over a matter of a few hours. As for side effects I only know that I had them for about 4 days each time I raised my dose by 25mcg and they were very minor (mainly mild constipation and diarrhea).

 

I'm now taking 0.5mcg three times daily: when I get up, 6 hours later, and then before bed. That's not quite enough to have a normal blood level overnight but it's pretty good. Today I started D3 with a tiny dose of 30IU with no apparent effect (I'll see if I can sleep tonight!). With luck I'll find I'm not as reactive to D3 as I was two years ago and I'll be able to top up my levels with that and eventually stop the calcitriol.

 

You could try calcitriol like me, but if I were you I would first look into supplementing with Alfacalcidol because i) you take it once a day rather than (ideally) 4 times each 24 hours, and ii) it will build up your storage levels and you may be able to eventually stop taking it, whereas calcitriol isn't stored so you must keep taking it forever. The drawbacks of Alfacalcidol are that although it's licensed it's not actually available in Canada so it may not be available in the US, though I suspect it is. Also, it's possible (for all I know, as a non-expert) that you could react badly to Alfacalcidol but not the active form.

 

All the best,

Tom

 

 

[Tom2020]

Incidentally, there's no way to calculate equivalent doses of D3 and calicitriol, even though D3 is eventually converted into calcitriol.

[Tom2020]

Since you're getting vitamin D from the sun - I use a free android smartphone app called d-minder that I found quite revealing. You can enter your coordinates, a date and time and it will tell you the UV level. I was surprised to learn there was little or no UV for quite a while after sunrise and before sunset even when the sun is quite strong. It will also estimate how much D3 you've made each day if you enter information about how long you were in the sun and how much you were wearing. I think the numbers must be quite inaccurate but it might be useful, if you can get the app.

[Doctorsrcrap]

I've read people react badly to vitamin d because they don't take enough of their co factors? Is that correct?

[Tom2020]

On 7/27/2024 at 12:18 AM, Doctorsrcrap said:

I've read people react badly to vitamin d because they don't take enough of their co factors? Is that correct?

I searched for 15 minutes and couldn't find any better source than this: 

Quote

 

"Some researchers claim that fat-soluble vitamins work together and that it’s crucial to optimize your vitamin A and K intake while supplementing with vitamin D3 (43;2007, 44;2006).

 

This is especially important for vitamin K2, another fat-soluble vitamin that most people don’t get enough of (45;2010).

 

Magnesium — another important mineral often lacking in the modern diet — may also be important for vitamin D function (46;2013, 47;2013)."

 

 

Unfortunately, the studies cited a quite old now and the page says nothing about how much of each cofactor to take. Maybe you only need to supplement cofactors if you're deficient or if you're taking very large doses of vitamin D.

[Ariel]

Thinking of you and sending love @savinggrace