[Bearygood]

I'm LOW! I am utterly shocked. I'll know more tomorrow when I speak to my endocrinologist but this was one of the results he left on my answering machine.

A brief history -- I started reading about Vitamin D3 shortly after I was dxed, way before information started to dominate the news. What I researched made sense to me and after I started taking it, the first doctor I saw and told was my endocrinologist. (Since D3 functions in the body as a hormone, it wasn't surprising that he was very knowledgeable.) He explained the importance of testing liver function if you're supplementing with this kind of dose. I had my first work-up probably after I'd been taking it for about 8 months. Results were within normal range and liver function was fine.

I asked him during my visit last week if my he thought my last test being within normal range definitely meant that I was low before I started taking it, to which he said yes. And now, fast forward a year, I'm low with THIS kind of dose!

I know there are a lot of posts about D3 but I decided to start a new thread to strongly encourage everyone to get your levels tested on a regular basis. You never know! I am doing pretty well MS-wise and I have often wondered if taking vitamin D3 is one of the reasons. No way of knowing for sure but I'm not going to stop to find out!

I've been in and out of town and crazed but I will visit again soon to share some other interesting things about my endocrinologist's visit MS-wise which might be interesting to the board.

Big s to everyone!

[coletaterbug]

Originally Posted by Bearygood

I'm LOW! I am utterly shocked. I'll know more tomorrow when I speak to my endocrinologist but this was one of the results he left on my answering machine.

A brief history -- I started reading about Vitamin D3 shortly after I was dxed, way before information started to dominate the news. What I researched made sense to me and after I started taking it, the first doctor I saw and told was my endocrinologist. (Since D3 functions in the body as a hormone, it wasn't surprising that he was very knowledgeable.) He explained the importance of testing liver function if you're supplementing with this kind of dose. I had my first work-up probably after I'd been taking it for about 8 months. Results were within normal range and liver function was fine.

I asked him during my visit last week if my he thought my last test being within normal range definitely meant that I was low before I started taking it, to which he said yes. And now, fast forward a year, I'm low with THIS kind of dose!

I know there are a lot of posts about D3 but I decided to start a new thread to strongly encourage everyone to get your levels tested on a regular basis. You never know! I am doing pretty well MS-wise and I have often wondered if taking vitamin D3 is one of the reasons. No way of knowing for sure but I'm not going to stop to find out!

I've been in and out of town and crazed but I will visit again soon to share some other interesting things about my endocrinologist's visit MS-wise which might be interesting to the board.

Big s to everyone!

My Ms doctor called about 3 months ago and told me my vitamin D was low.He said it was 16 and that normal is within 50 to 100. So I have to take 5,000 IU of vitamin d once a week. But have been doing a lot better since taking it.I haven't had a relapse in 3 mths I am in one right now.

[Bearygood]

Originally Posted by coletaterbug

My Ms doctor called about 3 months ago and told me my vitamin D was low.He said it was 16 and that normal is within 50 to 100. So I have to take 5,000 IU of vitamin d once a week. But have been doing a lot better since taking it.I haven't had a relapse in 3 mths I am in one right now.

Well, good for your MS doctor to test it! It doesn't seem like it's always done as a matter of course (at least when I was dxed 2 years ago). My MS doctor never mentioned it but then again, he also never ran a B12 test.

I think you mean 50,000 IUs, not 5,000, correct? It's not unusual for doctors to prescribe D by prescription in a 50,000 IU weekly dose for patients who are really deficient. I asked my endocrinologist about this last year and he explained that for some reason, that one high weekly dose doesn't present the same potential danger as the daily dosing in amounts like I was taking -- has to do with the build-up as opposed to that one megadose. But still, liver function should always be tested when taking D supplements.

[Dejibo]

no matter what I do, I cant seem to keep my D levels up to normal standards.

[SallyC]

Sheesh, I don't think I ever had my D levels tested....B12 but not D....I just take a one a day multivitamin. Hmmmmmm.

[Natalie8]

When I was diagnosed my Vitamin D level was at 17. This was 18 months ago. I have managed to get it up to 46 now after doing the 50,000 a week for awhile, taking a break for several months, and then starting on daily supplements. The neurologist who runs my clinic likes to see all MS patients in the 60s-80s range. I have been taking 3,000 a day and may bump up to 4,000 a day. I would like to get it higher!

[NurseNancy]

i'm going to ask about this at my annual PE soon.
i was 24 and they wanted it at 30. i started 800IU/day and have been on that for a while. the level came up (i can't remember to what) but i'd like to keep it that way. and the recommendation of 60-80; i'll need to ask about that.

thanks for the info.

[RedPenguins]

In February, my D level was at 6!! The docs at Hopkins put me on 10 days of 50,000IU of D and then once weekly dose. It's been a few weeks now. I am going to try to get re-tested tomorrow.

I heard that people who did a HiCy type procedure in Chicago and not at Hopkins, they use Vit D shots post treatment as opposed to using copaxone, as I'm currently doing.

I also inject 1 gram of B12 2x a week. I do notice a difference with this.

I guess I didn't learn my ABCs too well.... They're not cooperating with me. Ho Hum.

~Keri

[DM]

Wow, what timing w/this thread, BG! I went out to the Univ of Iowa to the Osteoporosis/Bone disease clinic and the Dr did a Vit D study on me. I found out that I was very low on Vit D, so she put me of Ergocalciterol. It is a little green gel type pill that has 50,000 iu's of D. I will take one pill a week for 12 wks, then one pill every other wk until I see her next.

She said that low Vit D can cause all types of sx's etc. I also do the Boniva IV every 3 months for my Osteo.

I'm glad you started this thread~ I think Vit D deficency is a big problem out there for women.

[barb02]

I am going to ask to be retested for this the next time I go to the doctor's. They told me last year that my level was normal.