Hi Everyone,
I recently increased my vit D levels up to 3000iu plus Adcal D3 per day and the result of my latest blood test came back as reading 89.
How high should our levels be with vit D as I thought mine was still on the low side?
Any answers gratefully appreciated.
Janet
x
Hi Janet,
Your levels should be between 150-225 so yes your levels are way too low.
My last blood test showed mine was 140 - thats pretty good and i still take 5000iu.
You need to up your intake. I know some people take really high levels on here - up to 20000.
Anyway, how are you feeling now Janet? any better?
Take Care
Teresa. x
l have been taking a high dose vitd3 for 3yrs now. My level, when first tested was 20 - after taking 20.000ius for 2yrs it was then tested at 43 - so l am now back to taking 20.000ius - as l did go down to 10.000ius for a while in the spring because it was sunny. l am waiting the results of another test. l do use a sun-bed for about 10mins twice a week. Our levels need to be 125/150nmg - The heavier you are - apparently - the more vitd3 you need. Well - l am 10st. so not exactly overweight for my height.
l have osteo-arthritis in hip/knee/ankle in my non-ms leg - so l am keen to get my levels as high as possible for pain relief.
l do take magnesium as well - l do not take calcium - as too much can cause problems. And you need plenty of vitd to help your body absorb/convert into calcium.
lf you google vitamind3uk - there is lots of info. Or just google vitamin d3 deficiency -
l take Healthy Origins Softgels - [which l get from amazon 360 10.000ius £15]
F.
Yes Teresa is right - my brain is not working too well this morning. 150/225 is the recommende level.
F.
Thanks Teresa and Frances for the information, I just have one more question can we just increase our dosage on our own back or do we have to consult with ms nurse/gp or neuro?
Thanks for asking how I’m feeling now Teresa, I have quickly come to terms with the fact that I have SPMS and realise I’ve just got to get on with it and not to worry as to what may or may not happen. I started today by going out with a friend and treated myself to some new clothes and then a lovely coffee and a good ole natter. I feel much better in myself. Naturally aches and pains still there, but hey, who hasn’t got some?
Take care both of you and thanks for replying.
Janet
x
Hello again Janet,
I didn’t tell my nurse/neuro or anyone i was taking vit d in the first place. I started with 1000iu and when i had my neuro appointment i asked him if i could have a blood test to check my levels.
I called my ms nurse for the results of the blood test to be told that my level was 140. As the level should be 150-225 i thought it a bit low so i got a little advice from people on here and i started 5000iu.
My nurse told me my levels were fine but it was my decision.
There is a lot of info out there about deficiency in vit d. The ms society do a publication and so do the ms trust.
If my levels were as low as yours Janet - i would be taking at least 5000iu - if not 10,000iu.
Some people i spoke to on here told me they take 5,000iu and 10,000iu on alternative days.
This is only my opinion but if you up your levels for a little while and then get your bloods checked again - you will be able to see if it has gone up. If they are still low - you will know you will need quite a high dose.
I am glad you are feeling a little more positive Janet. It must have come as a shock. As i get new symptoms i sometimes feel like i am being dx all over again,
As some people have said spms is only a label - i still have rrms but i have felt so ill in the last 18 months that i have hardly been out the house, and i have been told my ms is mild at the moment!
It doesn’t feel very mild! but to look at me you would never know i had ms. It is invisable to others but a battle sometimes to me.
Remember - the vitamin d is only my experience/opinion. I hope you get more replies so you can make an informed choice. Your ms nurse may be able to advise you as well.
Take Care
Teresa. x
Hello Teresa,
Thanks for your response and advice. I’m being sneaky as I get my vit D on prescription so I will have a chat with my gp and see if he/she will prescribe more for me. By the sound of things I am much to low in vit D and I do want all the help I can get. I will most certainly take your sound advice and thanks for troubling to respond.
I am truly sorry to hear you are going through a rough patch 18 months is a long time for it inhibit you and I wish I had a magic wand and it would be waved your way. I know how hard it is especially to motivate yourself when you’re feeling like you do, but just do what you can when you feel like it. All the other stuff can wait. I feel quite humble, after all your suffering you still have time to reply to my post. You are one strong lady.
Take good care of yourself.
Janet
x
Hi Janet.
It’s important to only look at the D3 test result because D2 doesn’t do the same thing but it is added to the D3 number to give an overall vitamin D level which might have been what you were quoted. In other words, is your D3 89 or your D3+D2 89?
It’s also important to know what units the numbers are in - there are two types: ng/ml and nmol/l. According to various websites, the optimum levels are supposedly 50-80 ng/ml = 125-200 nmol/l. If your D3 is 89 ng/ml then you’re fine, but if it’s nmol/l then you are low.
If I were you and the 89 was nmol/l then I’d start taking 5,000iu and get another test 4 weeks later. If that’s not enough, then there are higher doses available too. 5,000iu capsules are cheap and readily available (e.g. I get healthy origins from amazon for about £12 for 360).
Karen x
Hi Karen,
Thanks for your advice I will most certainly find out as at the moment I have no idea if it’s just D3 or D3+D2, have to ask my gp. When the test was done they just said it was for vit D.
Janet
x
Hello,
Had my vit D level tested a couple of months ago and it was only 22! Started 50,000 units weekly five weeks ago and I feel so much better; physical symptoms have not improved but my fatigue and general well being definately have. It’s a hard one to call, if the high dosage has made me feel better, as the condition changes for us all constantly. I have been advised to take this high dose for 6 to 8 weeks. Seeing my neuro in 2wks and will ask his advice then; lucky I have a good one, who has highlighted to PCT’s that it is not on, that they will not prescribe high dosages when there is a an acute defeciency.
Hope this helps.
Clare
Thanks Clare, Do you also take Adcal D3? My rheumy put me onto 3000iu but not my neuro so I intend asking my gp after what Karen has said as I really don’t feel that much better after adding the extra 3000iu to the Adcal D3. My head is spinning with it at the moment not knowing which way to go, have thought about ringing ms nurse for her advice.
Thank you for your imput I appreciate it.
Janet
x
Hi Janet,
No I don’t take Adcal D3. I do know that my neuro sought advice from a rheumy about my low levels.
Not surprised your head is in a spin; not feeling like your old self and having to digest and research all the information is hard work.
Hope you feel better soon.
Clare x
Hi Clare,
Thanks for your reply, I have decided to ring my ms nurse tomorrow and see if I can gain more info. Karen very kindly explained things, but to be honest my brain is so befuddled at the moment I couldn’t really take it in. I really do appreciate your input to my dilema. Many, many thanks.
Hope you are well and take care.
Janet
x
To convert your vitd3 levels from ng/ml to nmol/l - you multiply by 2.5
ie: 89ng/ml = 222nmols.
[Just to confuse you all the more]
Thanks Frances,
Now I can suss it out, the only problem is I don’t know if the blood test was for Vit D or Adcal D3 together or seperate.
When I see my nurse at gp’s on Wednesday I will try and find out.
Sorry for being such a dumbduck, and thanks as the way you’ve put it I shall be able to work it out.
Janet
x