Recovery - Vitamin D deficiency

General health and lifestyle
1

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

2

Have they at least had the gumption to check what her levels are now? A friend had very low levels, was given high dose vit D over about 10 weeks, the symptoms resolved and the level was good - a few months later they returned and the level was down. A second course sorted it and now she takes 2,000IU/day I think.

My husband had a level of 7 and no symptoms (other than high BP which may or may not be the vit D level) and he was given 25,000IU once per week over 4 months. I discussed it with the GP - who said that it is now thought that a slightly lower supplementation over longer is more effective because it is absorbed better. Some people don't absorb it well from the gut anyway and some don't absorb large amounts.

The only way you can tell if someone is depleted is by measuring it - doctors can see through skin, even if they seem to think they can!

And another point - low vit D is a common finding in autoimmune disorders. Maybe the low level is not the cause but the symptom of the cause of the symptoms.

3

Thanx for the reply,

we weren't sure when she should have a retest for her levels as the GP only prescribed the meds over the phone and didn't mention a retest, I'm going to bring that up with her pain clinic nurse to see what she says and see if she can mention in her report back to the GP, as I have seen the normal is about 3mths but for people with medium/high dose over a longer period.

From reading other story's on here my sister dose was really high for a very short period, rather than prolong period you mentioned which too me looks like the better method, im not too sure most GPs know how to treat it, as with the autoimmune she was getting tested for the gastro linked ones before this all kicked off due to ongoing stomach problems which made her end up getting bed bound again because of pain then everything just snowballed to this, but as no tests were coming back positive a few above normal inflammation markers but not high they sort of dismissed most things,I think she does have issues with absorption and is on acid meds which cause problems with that also, but they don't ever seem to want to investigate the root cause, but maybe this vit D problem has come up the gastro docs might revisit the autoimmune theory again!

4

My vit d Was 20 and dr gave me 1000 a day, it worked but I also was on acid meds ppis and that is a factor for b12 d ficiency which I had. I had injections and still take 1000 mcg a day. I had horrible pain in my back, numness and weakness in my legs. Getting better after three years. But cant stop b12 because everything comes back. Hope your sister gets better. Did they check her b12?

5

Your sister's "tummy troubles" may well have led to a Vitamin B12 deficiency some of the symptoms of which are similar to those of low Vitamin D.

Ask her doctors to check her serum B12 and Folate levels as these help iron to make red blood cells.

6

The usual in the UK is 60,000iu per week for up to 10 weeks as a start and then check the vit D status - those doses she was on could have caused an upset stomach so are better avoided. If she has raised inflammatory markers (ESR/sed rate and CRP I'm assuming) then they really should be having a dig around. Some people have autoimmune disorders and never have a raised level of those two - but a lot of doctors either don't know or don't believe it.

Hope they sort something out - be persistent.

7

Hi Clive

She was suppose to have had the B12 checked as well but only the Vit D came back as anything wrong, so they say but you can never be too sure with our doctors, as smy sister is bed bound due to pain and muscle weakness we didn't have a face to face with the GP, we will have to get that checked to make sure!

Thanx for the reply.

8

they was suppose to check for B12 as well, the pain clinic wanted both checked, so we are hoping they did but as it was a phone call from the GP they only mentioned the Vit D!

Thanx for the reply!

9

Try to get hold of copies of the blood test results together with the ranges "from - to" and post them here.

10

Just a litttle update,

Finally got hold of a GP last week to ask about retesting my sisters bloods as she has gone backwards rather than forwards, which she had done today and they are checking her Vit D, magnesium, B12 and bone density.

When I asked about the dosing for the Vit D as I said it was very high for a short period and maybe she needs it more spread out to absorb it better, all I got told was that her dose was the national guidelines stated dose,

Hhmm...we will see what happens next, hopefully if her levels are still low they will rethink the short treatment and go for a longer one 🤞

Her pain clinic nurse can see a slight improvement as my sister was able to speak for this appointment rather then grimacing in pain, she has also pushed the GPs to ensure they retest her bloods after treatment!

11

Being of a sceptical nature - I'm not sure they are following national guidelines. The professional article on this site (which is used by the NHS so is reliable)

https://patient.info/doctor/vitamin-d-deficiency-including-osteomalacia-and-rickets-pro

says

Calciferol treatment, in a daily dose of 10,000 IU or a weekly dose of 60,000 IU, will lead to restoration of body stores of vitamin D over 8 to 12 weeks. A maintenance dose of 1,000-2,000 IU calciferol daily or 10,000 IU weekly is adequate. Combined calcium and vitamin D preparations should be avoided in the long term, as the calcium component is usually unnecessary.

which is what I have seen in all local guidelines in the past. I have never seen that high a dose for just 2 weeks. You might be interested to see the other things they are supposed to do - like checking calcium levels. 

I would be delighted to be proven wrong - but I can't access the NICE guidelines to see as I don't live in the UK. However, the Cumbria guidelines say:

Loading regimens for treatment of deficiency up to a total of approximately 300,000 IU given either as weekly or daily split doses. The exact regimen will depend on the local availability of vitamin D preparations but will include:

Dose Frequency Duration Total dose

50,000 IU Once weekly for 6 weeks Total dose 300,000 IU

20,000 IU Twice weekly for 7 weeks Total dose 280,000 IU

800 IU       Five a day for 10 weeks   Total dose 280,000 IU 

no mention of 40,000 2x daily for 2 weeks.

And then you check - in case the patient siffers from malabsorption which is a common cause of low vit D.

Ah well - looking forward to the continuation of your saga!

12

Yeah, I have looked on a few sites myself and have found the same which you've stated above, I did hint to them kindly about maybe a not so high dose for a longer period but they didn't really want to listen..

I have said to my sister maybe if they give her a high dose again like the 20,000 capsule, to just take one a day and spread it out ourselves from what I read it won't hurt her and we already know the 40,000 a day didn't help, I take it if her results are still too low they will give another course of treatment?!

I must admit I'm looking forward to seeing what her results come back as, I really can't see that they have improved by much if any, no doubt it will take 3-4wks to get the results again!

Il keep you updated on the results.

13

So we got my sisters blood test results today via the GP receptionist 🤔, she informed us all results were normal and when I questioned the Vit D result she said it was borderline.

This was not good enough, I had to prompt her that I want the figure for the Vit D if she can understand the readings that is, as if it's borderline surly there's a treatment plan from the Doctor she couldn't reply about treatment but she did say Vit D was reading 44, she also said a letter has just popped up on her screen that's being sent out about a blood test, that's about all I could get out of her!

So I take it they want a retest to see if she's maintaining her levels before they look at treatment?

she has only been taking Vit D for a month, I just hope and pray they want to get my sisters results higher than 44, as recovering is not going to happen if it's still low!

Sadly feeling really deflated now, hopefully the letter explains a bit more when it comes!☚ī¸

14

My husband's vit D level was 7 - and he felt fine. At 44 your sister shouldn't feel too bad BUT it sometimes takes a few months to feel really better.

But it is also possible the low vit D was just the symptom of something underlying - that is common. But patience for the moment.

15

Hi Ruthie,

Does your sister take a multivitamin? If she does than please have her b6 levels checked. I am vitamin d deficient and blamed my symptoms for it. But after 8 months of suffering and endless testing. I found out I have vitamin b6 toxicity. After stopping my multivitamin my symptoms started to improved.

16

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

17

Hi Taro

No she don't take any multivitamins, shes barely getting any vitiamins as she's had loads of problems with food and bad reflux so she's limited, the only thing she takes now is build up drinks that have low levels of vitamins what you would get from food!

Thanx for the info though.

18

Yeah I know your right patience is the key!!

and as she has had gastro problems for awhile and still under investigation for this we was hoping for the recheck bloods to prove if she's holding on to her levels and if not that it might hint to a problem else where!

It's so frustrating you read all different stories and see some people perfectly fine at really low levels and some people not, that you don't know if Vit D can really cause all the problems!!

19

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.

20

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 🙂