Vitamin D deficiency

[DaysLikeThese123]

For the past year I have felt awful: constant tingling/buzzing/sensory issues in my legs, achy, feeling sick, dizziness, including some movements issues and fatigue lately too, my gait is off and, clinical muscle weakness, muscle twitching and stiff muscles. I also have bladder issues, which are needing to go a lot at night and constipation.

I have had a clear MRI of brain and spine, every blood test under the sun - all very normal and b12 very good (actually quite high).

I have recently (finally) had vit D tested and it's 22mnol/L, which is quite low.

I am at a stage where I can't work due to fatigue, sickness and weakness. I have 2 DCs to, I am late 20s, healthy weight, used to be active, don't smoke or drink. Yet feel terrible.

Could low Vit D be the cause of all my symptoms?

Has anyone else had vit D deficient and felt awful too?

I have been prescribed 25micrograms/mcg (1000UI) to take once a day.

How long will this take to make me feel better? What are your experiences?

I would appreciate any advice. I see my Neurologist again in a few months and I would like to know if vit d problems are a major culprit in all this.

yes, it could be. but have your thyroid and vit b12 also be tested?
your dosis is rather low, that's for mainenance not to bring levels up. you would need at least double that.

B12 and folate interact. Have you had your folate tested? Also there are two types of B12; and of your headline measure is okay but you have those kind of symptoms you really need the second test (which measures usable B12 - I’m going to have to look up the term, back in a bit.)

Here (the serum test);

www.thyroiduk.org.uk/tuk/testing/Active-B12.html

Hi blue I've had some thyroid test done by GP and it was normal.

I also had B12 done and it was 700+ so high within range

Hi OP. I think muscle weakness and aching is very classic vit d, as is tiredness/fatigue. A quick Google shows lots of people with tingling issues and low vit d. I have low vit d and am a bit tingly. Also going to get b12 checked.

Hi battle thanks will have a look!

Is that a test available on NHS?

1000 iu is really low dosage, yes. Should be more like 4000iu, shouldn't it? I'm taking 20,000 once a week, but when I was pregnant with low and plummeting levels, I took 4000iu.

Thanks everyone, some things to discuss with GP. I have a very lovely GP so I will see what he says

It is if you can attend the London hospital in person (and get your GP to fill in the form). Otherwise I remember them being surprisingly cheap by post.

I didn’t actually use them in the end (finally talked a GP into running a full set of tests and got my answer from those tests, but a friend used them and was happy.)

Think I might up my dose! My neurologist is the one who discovered the Vit D issue and he got someone in my practice to prescribe it, so I don't think the person who prescribed it knew my actual vit d level

I’ve just been diagnosed with vitamin D deficiency. I’ve been told to take vitamin D 2,000 iu a day, get a SAD lamp, eat vitamin D rich foods and go out in the sunshine more.

I went to the GP because:

1. I have felt permanently exhausted for the last 18 months - I was as tired when I got up, as I was at bedtime! I can only walk for half an hour!
2. I used to ache all over - like flu was starting, except it rarely did
3. I have had flu every year for the last 5 years, despite flu jabs
4. I have depression

I believe it takes months of taking the tablets before feeling better! (I had the full range of blood tests.)

You’ve got a better neuro than many, then too.

Thanks Battle I'm in Scotland and a bit far from London, but I will definitely look into what options there are

Hi, have they checked your magnesium levels too?

Your dose seems very low compared to what I was prescribed - 6000 iu/day for 4 months then 1000iu/day for 2 months.

Have a look www.vitamindcouncil.org

Sounds like good advise Guilin

I haven't seen anyone since vit d deficiency was found, just been taking the dose I was given

My Vit D levels were 37, so higher than yours, and I felt absolutely dire, with a lot of the symptoms you describe. I've just had 2 months of a loading dose Vit D (much much higher than they've given you!) , and am now on daily maintenance which is at least 1,000 a day. That's after the 2 months of loading dose.

Part of the problem is that other countries have decided 100 is ideal level, UK for some reason still says 50 is enough - so if you lived elsewhere you would be seen as even more severely deficient.

There are v useful threads on here if you do a search.

And while it does take a while to feel better, after a few weeks the difference is bloody amazing. Energy! Good luck

They were classic symptoms a relative had.
While you are waiting to see the doc, you can make a few dietary changes too: eggs and oily fish as these contain vitamin d and will be absorbed a little better than supplelements.
I’d also get some sunshine while you can. You can just wear some lower SPF if you are worried about skin cancer.

Hi fraidknot

I don't think they've done magnesium yet, but my Neurologist said it needs to checked too and then said something about how my bodies metabolising calcium. I unsure what he said exactly but I think it's on the cards.

Last winter I literally thought I was dying of something. I had tests for everything, all were fine except I had Vit D levels so low they couldn't get a reading apparently. I stated supplementing but got slack over the summer and it happened again this winter as well.

I must go back and get retested as maybe I'll just need to supplement forever? Although I have recently started working outdoors and I'm hoping that will help.

I hope you feel better soon - hopefully this weather is helping - it really is shocking how awful it can make you feel

Hi abel

ha ha yes I understand the 'dying' feeling

I have been out in the sun loads recently so I hope it's helping (I have a slight tan now)

I have just been found to be vit d deficient and am on 20000iu 3 x week but couldn't tell you what my blood levels were. Mine is secondary to gallstones and have had major tiredness (like a wave). The supplements have helped a little.

Excuse endless typos, I was on my phone!

Your dose is to low as 800iu is the recommended for everyone you need to take more then 1000iu to see an increase. I was prescribed 10,000iu a day for two weeks as a loading dose then told to carry on with a minimum of 1,000iu. I normally take 3,000iu and yes I felt like death. I've never felt so run down before.

Note if you don't take magnesium with vitamin D you will get a lot of muscle pain. So ideally you take both. Apparently vitamin D helps you absorb magnesium. So if your low in one you'll be low in both, but it's very hard to tests accurately for magnesium defiancey.

My vit d is at 12.5 and I have the exhaustion, joint pain but none of your other symptoms. I am adding this as I wonder if you might have something else going on too...Hopefully not. Good luck.