Recovery - Vitamin D deficiency
Posted , 7 users are following.
Hi all,
I Would like to hear about other people's stages of recovery with vit D deficiency?
My sister has had 3yrs of issues gall bladder removal, acid reflux, IBS all resulting in her becoming less mobile and becoming bed bound she did manage to bounce back for a short period (6mths) then went all down hill again in Dec 2017 to the point of extreme pain in chest, torso, dizzyness, sickness, fevers, muscle weakness, heart palpitations which resulted in many A&E visits and short stay in hospital all was put down to the flu and nerve problems and body discontinuing as she had been bed bound.
Due to ongoing pain issues she is under pain clinic and they asked for a basic vitamin test by our GP which came back as her being deficient in Vit D levels 19, we had to wait a 1mth before treatment she was put on 40,000u 2x day for 14days and now is on 1000u 1x day 30days unsure what next,
I saw improvements by day 8 in walking, energy, siting up, pain looked more bearable but now she is on the 1000u a day the improvements have nearly disappeared she's been on the treatment now for 1mth.
Has anyone else experience this sort of improvement then it's dropped back, does it improve again?
Long term my sister has a long way to go but with the slight improvements we was hoping they stayed around a bit longer and maybe that Lady Luck was shiny on her for once.
Thanx for reading
Ruth
3 likes, 20 replies
Ruthie31
Posted
So a bit of an update,
When I left you last my sister had just had her bloods rechecked and they were reading 44, the doctors then sent out a letter to request another blood test for her levels again, we thought it was to check for more improvement etc.
But after 2wks trying to get the blood test done another doctor phones to say -
'no, all results are fine her levels have gone up, carry on with the maintenance dose, and that none of her symptoms were to do with Vit D, make her (sister) get up and about herself'....shocking and confusing as they wanted to re-check!
This is a bit of a let down as as she has lost most of the improvements she had made, we were hoping on the blood test showing us if her levels were improving or dropping
Any advice as I thought they like to get your levels up to 50-70 before they keep you on a maintenance dose?
We have also ordered a home Vit D test kit, god knows if they are any good to see if we can get an idea at her levels, has anyone else tried them?
Kind regards
Ruth
EileenH Ruthie31
Posted
If it is the home test kit fom City Labs in the midlands of England they also do NHS testing.
Sometimes it does take months for symptoms to improve - but to be honest, I'll just repeat what have I said before (not sure it it was here or another thread): low vit D comes as part of the clinical picture for a lot of autoimmune disorders. But it is only part - when the symptoms don't improve after a couple of months of being at an acceptable level - a rheumatology appointment is called for. If one GP won't do it - look for another who will.
Ruthie31 EileenH
Posted
Yeah this is city labs, I think when we know she's not dropping her levels we will have more confidence.
We definitely know the recovery will take awhile, I'm thinking hopefully around the 3mth mark we can see if there's any benefit from her treatment but we have seen some people say a year for full improvement!?
As for the rheumatologist I'm not sure we will get that, they don't seem really concerned at the GPs and as she's under the hospital already with pain clinic and gastro they won't step on there toes,!
But miracles can happen and we are trying to be pro active with getting her moving more to help build up the muscle wastage.
Ruth 🙂
emilywren Ruthie31
Posted
Hi, just wondering how your sister is? I'm just researching about vit D deficiency as have been diagnosed with it last Friday.