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Original poster

Could low vitamin D really have caused all this?

65 replies

riotlady · 05/02/2021 12:15

I know there's been a few threads on vitamin D, so apologies for another one!

I got my levels tested recently out of curiosity and found they were 16.9, which is quite deficient. I've been very unwell since last August, with severe fatigue, aches all over, especially in my fingers, headaches, nausea and vomiting (which has thankfully settled down a bit now). I've had lots of blood tests, a gastroscopy, and I've been referred to a clinic for a potential cfs/me diagnosis. It's had a massive impact on my life, I've been unable to complete my final placement for my degree so my graduation has been delayed. Now that I've read up on the symptoms of vitamin d deficiency, I'm wondering if it could be a significant factor in my symptoms? Has anyone had similar? I don't want to get my hopes up too much but I've basically been told by the doctors to get used to the fact that I'm now chronically ill, it would be amazing if there was something that could help.

OP posts:
GrumpyHoonMain · 05/02/2021 17:34

@riotlady

I know there's been a few threads on vitamin D, so apologies for another one!

I got my levels tested recently out of curiosity and found they were 16.9, which is quite deficient. I've been very unwell since last August, with severe fatigue, aches all over, especially in my fingers, headaches, nausea and vomiting (which has thankfully settled down a bit now). I've had lots of blood tests, a gastroscopy, and I've been referred to a clinic for a potential cfs/me diagnosis. It's had a massive impact on my life, I've been unable to complete my final placement for my degree so my graduation has been delayed. Now that I've read up on the symptoms of vitamin d deficiency, I'm wondering if it could be a significant factor in my symptoms? Has anyone had similar? I don't want to get my hopes up too much but I've basically been told by the doctors to get used to the fact that I'm now chronically ill, it would be amazing if there was something that could help.

Doubt it because India and Africa have the lower death rates (even taking into account reporting issues) despite people there having a lower level of vitamin d.
ThelmaNotLouise · 05/02/2021 17:36

@riotlady

Thanks everyone!

Thanks, @GailLondon I've ordered myself some 4000iu tablets which should hopefully help get my levels up. Even if it's not the sole cause of my issues (blood tests indicated I had a pretty strong infection around the time of onset so that's presumably contributed) I'm hoping it makes a little bit of difference at least

@GuyFawkesDay I think my gallbladder is probably ok, as I don't suffer any pain, just bouts of nausea and vomiting.

@cleanntidy I burn really easily and have tattoos so I've always been quite stringent about using sun cream, which blocks absorption I believe, so that's probably partly why my levels were low. Last summer I was working on a ward all day during the week and hanging out in the garden on the weekend- but we live in the North and it's a North facing garden so not full of sun!

You need to go to see your GP and get a prescription, OP. I had symptoms similar to yours, got tested and had a level of 23. My GP prescribed 200,000iu of Vit D to take in one weekend to get my levels up super-quick because of the damage the deficiency was doing to me. So it's great you've ordered your own supply, but it might not be anywhere near enough for what you need.
cleanntidy · 05/02/2021 17:53

GrumpyHoonMain - sorry I dont understand. What has this to do with death rates in India and Africa?

Original poster
riotlady · 05/02/2021 19:29

@GrumpyHoonMain do you mean death rates from coronavirus? I’m not sure that that’s relevant?

OP posts:
JengaJanga · 06/02/2021 01:28

@riotlady

Did your doctor not prescribe a high dose?

My doctor put my on 50,000 a week for 6 weeks now on 1600 a day....

Original poster
riotlady · 06/02/2021 08:28

[quote JengaJanga]@riotlady

Did your doctor not prescribe a high dose?

My doctor put my on 50,000 a week for 6 weeks now on 1600 a day....[/quote]
No, in all the blood tests I had done, my GP never did a vitamin D test. I sent away to have one at home.

OP posts:
Covidcorvid · 06/02/2021 08:31

Out of interest have you been tested for coeliac disease?

Coeliac disease can cause low vit d levels and could also explain the nausea and vomiting.

mumsiedarlingrevolta · 06/02/2021 08:32

DD (20) just had blood work for repeated chest infections which we suspect are from Covid bak in March.

Her Vitamin D very very low and she is on 1000 and day. She feels better already and it's only been a couple of weeks.

I think one of the problems is that a lot of the Vitamin D sold over the counter is 25 units (or however they measure it) and you really need 1000 a day to boost it so taking one 25 is not really touching it!

mumsiedarlingrevolta · 06/02/2021 08:33

*a day wish there was an edit button

Covidcorvid · 06/02/2021 08:34

DD’s first diagnosis was low vit d and supplements did help a bit.

But then she got a coeliac diagnosis as well. She still wasn’t right and after pushing for more investigation she was diagnosed as having fibromyalgia. So I do think don’t be fobbed off with it all being blamed on vit d if you think it’s something else. But yes, vit d can cause fatigue and aches.

DinosaurDiana · 06/02/2021 08:36

Have you had your iron levels checked ?
I had some of your symptoms and thought I had MS, turns out my ferritin levels were very low.

hamstersarse · 06/02/2021 08:38

There is no doubt Vit D plays a role in how ill you get with the virus.

There are decades of research about the relationship between low vit D and respiratory viruses....flu season itself is not a complete coincidence.

Other things that seem to be pertinent here:

BAME people literally because of the colour of their skin and the ability to produce vit D in the northern hemisphere is much reduced so are more often deficient

Obesity causes a reduction in production and absorption of vitamin D

No one in the uk can produce good levels of vit D in the winter, everyone needs to supplement

The guidelines on the amounts required by the NHS are way too low. It comes from a fear that too much can be harmful from a dodgy study since been categorically refuted. You need 4000 IU a day in the winter, which is the same as 30 mins in the sun.

Autumnchill · 06/02/2021 08:40

Mine was 27 when I got tested. I felt constantly tired, emotional and towards the end felt like I could drive my car into a tree. This was perhaps out of frustration that I felt so crap and didn't know why. Got prescription and almost instantly started to feel better. I take a daily vitamin now along with magnesium calcium and feel so much better.

I didn't realise how much it was affecting me

Labobo · 06/02/2021 08:41

Anecdotal, but the wife of a colleague was in a wheelchair with an undiagnosed severe fatigue, wasting illness. She was too ill to leave the house for years. Finally discovered Vut D deficiency and she recovered completely.

I had chronic fatigue and deep bone ache pains for a few years. I now take Vit D spray (not tablets - you must use the spray as the tablets don't absorb properly) along with Floradix iron tablets (again - choose floradix not normal iron tablets as they don't cause constipation) and Vit B complex.

If Vit D deficiency is your problem, you should start to feel significantly better within two to three days. It's so worth it. In total, it will cost you about £25 or less to buy all three.

AtLeastPretendToCare · 06/02/2021 08:44

If anyone wants to check their vitamin D levels I recommend these people who are an NHS lab. Recently had one done
www.vitamindtest.org.uk/

SinkGirl · 06/02/2021 08:52

I had shockingly low vitamin D. Think it was around 10 when first tested. I have diagnoses of ME and fibro (I don’t think it is those things but they don’t know what else it is). I can’t say that getting my levels up has been a cure but I haven’t been as fatigued or sore.

Folic acid made the biggest difference - again very deficient in folate, and GP gave me 5mg tablets IIRC. For the first week of taking it, it felt like I was on amphetamines or something. After a week or so it settled to normal energy levels and then sadly dropped again even though my level is top of the range. Very odd.

With vitamin D, 4,000iu per day wasn’t enough to get my level up. I ended up buying the Better4U vitamin D and K2 spray and was on 9,000iu per day (3 sprays) for several months until my level was good, and now I take 3,000iu per day every day (more in winter or if I’m feeling really crap). The k2 helps prevent issues with calcium from a higher dose. This has helped me much more than tablets and I make sure i take it every day and do notice the difference if I miss it.

Awrite · 06/02/2021 08:54

Not read the full thread but like you, my GP didn't test for vit D when I had a full bloods work up.

Anyway, I take a vit D + K spray for under the tongue. I'm convinced I don't absorb tablets properly. I also take an under the tongue disposable vit B12 tablet.

I got my vit D tested privately recently and it's 120. So, the sprays work.

Awrite · 06/02/2021 08:55

Dissolvable, not disposable.

oohmyback · 06/02/2021 08:55

Yes it could be vit D or B12. I have had supplements for both but unfortunately still ill Sad under investigation/elimination for fibromyalgia now

Original poster
riotlady · 06/02/2021 08:56

@Covidcorvid no coeliac, had a blood test and a gastroscopy

@DinosaurDiana yeah, low iron is what I thought it might be originally as I’ve been anaemia before abs felt like death but iron levels were fine :)

@Labobo that’s amazing! And it’s so cheap and easy to fix but doesn’t seem to be something gps will test as standard. I’ve literally had so many tests- liver function, kidney function, tumour markers, coeliac, full blood count, etc but never vitamin D

OP posts:
Thirdlifecrisis · 06/02/2021 08:57

I had similar symptoms with low vit d and was prescribed 40,000 iu per day (not a typo) for 2 weeks then 20,000 per week for a while. It took 2 weeks of the super high dose to feel better.

im5050 · 06/02/2021 08:59

It you have ever had any type of gastric surgery ulcers gallstones stomach problems you may not be able to absorb the tablet form of vitamins in some cases you might as well be taking smarties

You are better off taking the spray version of VItamin D which you can get from Amazon
Better You D3000 spray

im5050 · 06/02/2021 09:00

That applies to any vitamins - take the spray version of the vitamins if you can

Baileyscoffeeandcampfires · 06/02/2021 09:13

I've had very similar symptoms and gp is treating me for long covid .

Never had a positive test but worked the Cheltenham festival last March and was wiped out tired for a few days after.

Had severe aching since new year when Dh and ds both tested positive. I tested negative several times so didn't catch it from them.

Gp thinks exposure has caused an inflammatory flare up in the same way that a second exposure to chicken pox can trigger shingles

Jasperjosephjulian · 06/02/2021 09:27

Have they not done a bloods test before now? Before I was referred to CFS/ME clinic I had to have about 15 blood tests to rule out any other options!