Vitamin D

[acaverly]

I have been taking D 1000 everyday hoping my vitamin d will incre ase but my bloodwork I had a week ago says it is only 18 again. My calcium is still high too.

[MSer102]

You know for someone severely deficient in vitamin D taking 1000 mg per day is like spitting into the ocean. I'm surprised your neuro or other doctor hasn't already started you on a higher dose and figured out how to deal with the calcium.

Parathyroid.com says "Over 99.8% of all people who have a blood test that shows too much calcium will have a parathyroid problem." What are your doctors doing about that? There are a few other causes. What are your doctors doing about that?

[Cira]

Regarding dosage, I had the same basic thought as MSer, although I wouldn't have put it quite as colorfully. My level was 7.86 when it was tested & my neuro put me on 50,000 units/week for 8 weeks to get my levels up, followed by a maintenance dose of (I think) 2,000 units/day.

I'm also curious what they're doing about the high calcium levels. Increasing your vitamin D levels will have the effect of increasing your calcium...If they should start you on a higher dose of vitamin D, they're probably going to have to be careful about that - depending, of course, on how "high" those levels are.

In any case, I hope they get all of your levels where they need to be. Best of luck to you.

[SNOOPY]

Hi acaverly,

Are you using a D3 that is a soft gel? D3 is better absorbed in a soft gel. If taking a soft gel and if your D level is still low you may need to increase your D3.

About 2 years ago my D level was 16. I did quite a bit of research and started taking NOW brand D3 soft gel 5000iu. My D level, at last check, was 57. I have never taken prescription D. I have dropped down to 3000iu to see how I do.

Please discuss your calcium being high with your doctor for the best advice.

[JerryD]

So the doctors thought that 1000 iu's daily was sufficient...the first try. Everyone who is on this board and pays attention to this vitamin D story knows that 1000 iu's daily is like 'spitting in the ocean'. I don't know why the doctor doesn't know that.
I take at least 5000 iu's daily and my levels have gone from the mid 20's to around 50 ng/mL. Your doctor should be giving you the blood test pretty often. As you know, your levels are really low. I wouldn't begin any higher doses of anything unless my doctor was aware of the dose I was taking. But, I would be curious to know how the 50,000 iu dose is working. The only way to know is through regular blood testing.
Your thyroid and calcium problems could be related to the vitamin D deficiency, but I don't know. I am not a doctor. I would find and consult with a 'naturopath' or someone who is versed in vitamin supplements. And, of course, your regular doctor must be thinking of doing something for your calcium levels and your thyroid. Good luck

[acaverly]

I was on a higher dose when I was seeing a nuerologist about a year ago. At my follow up she said I do not need the 50,000 dose anymore. She said I do not have ms and then referred me to the neuero opthamologist for my eye issues. I just started with a new PCP and ordered bloodwork and I go back on the 19th. He will probably start me back on a higher dose. I go back to nuero opth. on the 30th.

[JerryD]

So you were 'cleared' of MS. That's fantastic!! Now you have to 'stabilize' your other levels. And I don't think bouncing from 50,000iu's to 1000iu's to whatever is the way to go. Do you? You need to find a dose of vitamin D3 that will keep you stabile. When you get the Rx dose from your doctor, is it 1 shot for 1 weeks worth of D ? After that you need to see the change in your numbers. Then you need to be on a maintenance dose daily. Good luck

[journeyman]

My levels.

On my first blood test my Neuro. found my D level in the 20's. He said he wanted me to be in the 50 to 75 range.

I am currently taking D-3, 2,000 u. four times a day. That puts me in the 68 range which makes us both happy. Since then I have had a noticeable increase in energy and mood.

He keeps track of my levels as he knows my fears. I read in this forum somewhere that a woman OD'd on her Vit. D. She was over a hundred. So we keep close watch on me.

Everybody is different and I know this all too well as I am a Ret. RRMS X five years Clinical Psychiatric / ED RN.C. Two years of Rebif. Now off.

Good luck and thanks so much for coming here. There is so much good advice and support here.
Dave Tampa, FL
"Journeyman" (currently in relapse with back and right leg spasticity. Rt. eye blind.)

[acaverly]

Yes but the nuero did clear me of ms but then the nuero opth. was looking at it again a few months ago an sent me for mri and LP. It seems like they have loked at everything else to rule them out.

[MSer102]

It seems like they have loked at everything else to rule them out.

But there's still the high calcium to deal with. As I said before Parathyroid.com says "Over 99.8% of all people who have a blood test that shows too much calcium will have a parathyroid problem." And by the way that's parathyroid not thyroid.

What are your doctors doing about that? Has your GP referred you to an endocrinologist? It sounds like that has to get taken care of before you know what to do about your vitamin D. So I guess they haven't ruled everything out yet.

[MMMMS]

My D level was 6, so the neuro gave me a prescription for 50,000 units in one pill to take once a week. Regular D tablets cause acid reflux, so I'm hoping this works.

Maybe your doc will consider the higher dose? I feel compelled to mention that no one should take 50,000 units on his own. There is so much unprofessional medical advice-giving on the Net, and I don't want to appear to be adding to it. I am no expert.

[laurasari]

I have a high calcium level and low vit D I take 50,000 units twice a month and we keep an eye on my calcium level which is usually around 11 though last one was 11.4 noone blinked. I have been checked and my parathyroid is to blame but not enough to worry. Good luck

[nosrepmodnar]

I just talked with my neuro last week as I wanted to up my input to 5000 and they told me to remain at 2000.
I did add magnesium which supposedly helps absorb the D.
I have been on the 50000iu weekly "super pill" in the past.

I also get about another 1000 in the calcium and multivitamin.

[acaverly]

Thanks for your replies. I am still waiting for my next appt. I will not increase vitamin d levels until I see my Doc.

[BigA]

Just wanted to add that I think MS can affect absorption or that one of the things you need to get MS is to not absorb it well. In any case, I've been on 10,000 per day and I've not yet reached 100, so I need more than the average person. Take it, get tested and adjust.