Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Scottietottie on December 10, 2019, 04:56:08 PM

Title: Vit D .... or lack thereof
Post by: Scottietottie on December 10, 2019, 04:56:08 PM
Hi  :)

I've been trying to persuade my GP to let me have a Vitamin D blood test for the best part of a year. we are under-tested for it here in the UK. He finally relented after finding my husband needs supplements and we eat pretty well the same things.

So - the range at the lab here is 50 - 150. Mine came back at 16.5. Just a tad low - I say sarcastically. I thought I was having a flare as everything is aching. I now think it may be Vit D deficiency.

I was told to phone the surgery. I did. I said I didn't want to waste time with an appointment but the receptionist said I couldnt just get a prescription. Getting hard to get appointments here right now . Compromised and am getting a 'telephone appointment' next Monday. Meanwhile I went and bout a supplement but I think I probably need a higher dose to get back into normal range.

This time of year with short days and long dark nights it's worth thinking about!

Take care - Scottie  :)
Title: Re: Vit D .... or lack thereof
Post by: susanep on December 10, 2019, 08:52:37 PM
Yes, You do need the higher dose. I have been taking 2,000 over the counter, and just had mine tested, and it was low. They put me on the high dose taking one per week for a few months.
I sure hope you are able to get it. It's frustrating knowing you need something, and have a hard time getting it.

susanep
Title: Re: Vit D .... or lack thereof
Post by: jazzlover on December 10, 2019, 09:14:30 PM
Many of us who are chronically ill have low Vit D levels. Keep after them!!

Also consider taking Vit K2 to make sure the calcium stays in your bones, not your blood stream.
Title: Re: Vit D .... or lack thereof
Post by: irish on December 10, 2019, 10:21:25 PM
Good for you Scottie. Yes, at that level you will need a pill. I don't remember my level but I think it was like 13 or so and it took literally years to get up to 30. When I hit 30 my NP told me "finally" that is better but to keep on it. I can't remember how many years I have been on it but I want to say 10 years or so and I am at 43 I think. Long way from a good dose, but much better than it was.

When I started on the D my doc put me on like 50,000 IU once a week for either 2 or 3 weeks and then on 5000 IU for several weeks and have been on 2000 IU every day ever since. The pus is on in the states as due to air pollution it seems like we don't get the full effect of the sounds rays like we used to. Cpould be....but I would bet our processed food diet has a lot to do with it also.There are so many things that the D helps but I can't remember them all tonite. Sure hope you feel better. I guess it is also possible to have low D from chronic disease also. That sounds good, at least. ;D Take care. irish
Title: Re: Vit D .... or lack thereof
Post by: Maria3667 on December 13, 2019, 02:02:34 AM
Hi Scottie,

I was also diagnosed with low D3 last spring after I asked for a blood test due to 'frozen shoulder'. My level was 33 nmol (should be at least 50 nmol).

So I started supplementing with 400 IU (10 mcg) my body didn't react well to this high dosage (severe dry eye pain and insomnia). Eventually I managed to tolerate just 100 IU (2,5 mcg) and within 6 months my levels jumped to above normal and drove down my TSH to almost unmeasurable levels.

I think there's an interaction between thyroid levels and D3 (both are hormones).

Good luck on your 'journey'!

Title: Re: Vit D .... or lack thereof
Post by: Deb 27 on December 13, 2019, 09:45:31 AM
I am sorry you had such a hard time getting a simple Vitamin D run. I was unaware of Vit D deficiencies years ago until I had one run on me. It was very low, like 9. I have to take 5,000 units a day and it came back up to 29. Some doctors want it higher than that. You can buy Vitamin D over the counter. I get mine from Amazon and it's a Whole Foods product, 365 brand. Good luck. I think you'll feel a lot better over time when your levels get back up. I know it has really helped me with the aches and pains.