Follow up to my Question about low Vitamin D levels c... - NRAS

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Follow up to my Question about low Vitamin D levels causing my legs to seize up.........

petalnumber2 profile image
15 Replies

I had the blood test and today I received a letter from Rheumy Doc telling me that the results show vitamin D insufficiency of 31.1 nmol/L Though I've done a bit of digging and delving recently, it's not easy to understand what are acceptable levels in the body, what is low and what is high ?

Anyway, perhaps my legs will have a bit of "get up and go" in them in a couple of weeks once I get some tablets inside me. Perhaps my tiredness will improve too, now that would be great...... Bring on the sunshine, carefully does it though.

On a more serious note, evidence does show that certain groups of people are at risk of having insufficient vitamin D levels and I do believe that some research is taking place into Juvenile RA. But, as my Rheumy Doc mentioned "some of the drugs we take are very strong, MTX to name just one, and these drugs can destroy some of the good things like vitamins in our bodies. So if in doubt, check it out ! June xx

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15 Replies
Beaches2 profile image
Beaches2

Hi June

I have been supplementing with vit d3 for a few weeks now. I have had an under active thyroid for many years now so also look at the thyroid uk site. It is a very informative site and I have been shocked by how little I actually know about thyroid problems...... (I was diagnosed before the days of Internet/forums ) . If you type vitamin d into search box there you will find loads of interesting info and discussion around it. Xx

julie_warwick profile image
julie_warwick

I have low vit D too , mine was in the low 30s and has gone up slightly since taking supplement prescribed but not much , I think they said it should be in the 50s , might be wrong , I got the impression that steroids can be to blame , my drug addled and sleep deprived brain forgot the details the minute I left , must write things down !!

petalnumber2 profile image
petalnumber2 in reply tojulie_warwick

Hello Julie, how well I recognise your last comment, I'm just terrible at remembering small and important things and have to write everything down too. I suppose our brains could be a bit addled by the drugs we take, but in my case I think my age has got a lot to do with it. Thanks for sharing your experience, I'm sure I'll feel a lot better once I get going with the Vit D supplements. June xx

Rustysaddle profile image
Rustysaddle

M daughter was 20nmol and we supplemented d3 @ 8000iu a day for quite a few months now 106nmol. Vitamin d council have a great site lots of research

petalnumber2 profile image
petalnumber2 in reply toRustysaddle

Thank you, I've had a look at Vitamin D Council and was a bit enlightened.

Dotty7 profile image
Dotty7

I'm pretty sure that below 50 is considered low.

Dotty x

Poshcards profile image
Poshcards

I am on vit. D supplements for life now, my levels went very low to below 10. I was told it should be over 50 to be ok

petalnumber2 profile image
petalnumber2 in reply toPoshcards

Well at least I have a better understanding that 50 is an acceptable level of Vit D as that seems to be the general info. xx

MarshaM profile image
MarshaM

Below is the information supplied with my Vit D test results. The GI Dr said my level (34) is fine. The Rheumy said to push it up to 80. I've been pretty low 12 and 18 in the past.

Deficiency < 20

Insufficiency 20-29

Sufficiency 30-100

Toxicity > 100

Recent literature suggests the above classifications.

This assay quantitatively measures 25-OH Vitamin D which

includes the metabolites 25-hydroxy Vitamin D2 and

25-hydroxy Vitamin D3.

tallgal profile image
tallgal

I don't know what my vit D levels are but when I had light therapy last year because my psoriasis had got so bad not only did my skin improve but my joints did too.My doctor says there is no evidence that joints are improved by vit D and wouldn't send me for any more. I realise that too much can cause skin cancer but the doses were very short and weak and I'd rather take that risk and be vigilant than powerful drugs. I'm contemplating buying a sun lamp but don't know where to get good advice on the kind needed.

petalnumber2 profile image
petalnumber2 in reply totallgal

Hello tallgal, my RA doc told me that a low Vitamin D count in the body does affect the muscles, tendons as well as bones. That certainly described the lack of strength and energy I have been experiencing, plus a general ache in my calf muscles. Yes, I realise too that overdoing Vit D medication can be dangerous which is probably why my RA doc has asked for regular blood tests.

Hi petalnumber2

I did a search and came up with a site that lists the various levels of vitamin D, in the same units as your results, in relation to health:

ods.od.nih.gov/factsheets/V...

Hope this helps

Regards

Beverley (NRAS Helpline)

petalnumber2 profile image
petalnumber2 in reply to

Thank you Beverley, every little helps and I believe we are all better informed by sharing our concerns and helping each other to find some answers. Some of us are better at searching for info than others. June xx

petalnumber2 profile image
petalnumber2 in reply topetalnumber2

I found the factsheet which you suggested very interesting and informative, I now have better knowledge of the foods which contain Vitamin D and how it is absorbed in the body. I have an appointment with my GP on Monday morning, so at least I have a better platform with which to converse with him.Than you once again Beverley. June xx

tallgal profile image
tallgal in reply to

Thanks for that web site Beverly-NRSA. It is interesting. I'm going to ask for my Vit D levels to be checked . I am a coeliac and suspect that a lot of my troubles come from poor absorption. I take 5000IU vit. D so if my levels are low that will prove I am not absorbing properly.

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