Could low vitamin D really have caused all this?

[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.

Am I right in thinking that you can't absorb vitamin D without a nutrient dense diet of k2, D3 and calcium?
So it's not just about being outside regularly it's also ensuring you're eating right too?

My vitamin D level was at 12 a few years ago. My symptoms were severe exhaustion, aches and pains, depression. I felt like a frail 80 yr old and I was only in my 30s! I thought I had MS and/or serious depression...

I was given a high daily dose for a month (20,000 iu) and then prescribed a maintenance dose of 3000 iu (I actually take 4000iu as I work indoors all day, and double that dose Dec-Feb when we get so little light).

I started feeling immeasurably better after 6 weeks of taking Vit D, and now wouldn’t be without it (about 7 years later). It’s had such a positive effect on my physical health and mental well-being.

I have been diagnosed with fibro (a diagnosis I am not completely convinced about) and my vitamin D levels were on the low side. I started taking a Vitamin D spray last year, and when I was tested in August last year, my level was 69, so classed as ‘adequate’. My rheumatologist has recommended testing levels again so will see what a lockdown winter has done for my level.

I have noticed no real improvement with my symptoms (fatigue, weakness, aching hands, brain fog) but I don’t know if my vitamin D level should be better than ‘adequate’ to feel the benefits.

@SinkGirl I last had my folate levels tested a couple of years ago as part of a Medichecks thyroid function test and my level was just outside the lower end of normal. Because it’s a private test, it’s never been picked up, and I do wonder if it could be contributing to my symptoms. I also suspect I have mild anaemia but because I am in ‘normal range’ nothing gets mentioned. I have tried gentle iron tablets, Spatone, Floradix, but nothing makes a difference.

@Jasperjosephjulian

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!

Yes, loads, but not vitamin d!

@AtLeastPretendToCare thanks for that link, I might get mine retested just out of interest, I suspect it's still on the low side.

Please tell your GP that your vitamin D test came back as deficient. Ask for high dose supplements. They can prescibe calcifidiocol which can be used by the body immediately, unlike supplements, which get processed.
Ask your GP why he/she didn't test for it. They need to be called out for this. I saw an instruction to GPs telling them not to test for vitamin D unless absolutely necessary. It's the biggest scandal. A nation of people low or deficient during a pandemic.
Yes, your symptoms can absolutely be due to vitamin D deficiency, but you'll often find there are co-factors which muddy the picture, such as low ferritin/menopause/metabolic disorder/body inflammation causing autoimmune responses. Get your vitamin D levels up to optimum and go from there.

Also OP, can I ask if you have been taking vitamin D supplements during winter for years, and this still happened? Or have you never taken any?
I'm one of the people who bang on about vitamin D on the other threads. I see threads about various illnesses and low moods and literally want to shout 'Take your f**king vitamin D!!' It's cheap and easy.
People with liver/kidney conditions should check with their doctor before taking high strength though.
I also use BetterYou spray with K2. 3000iu per day, but I'll test again soon to see how my levels are.

These are what I was given
https://www.weldricks.co.uk/products/huxd3-capsules-20000iu-colecaliferol-pack-of-30

@DianaT1969 I had body inflammation causing autoimmune responses and was treated for autoimmune for two years. My Vit D was very low but my ANA was positive. I also had inflammation response in my blood for a year. Vit D is back to normal and I take 4000 iu a day. I recently had blood tests back and everything is very good as I take regular supplements.

I am still diagnosed with fibromyalgia and chronic fatigue. They believe I was misdiagnosed with autoimmune.

Another thing that happened to me when my Vit D was very low was hair loss. I lost half my hair, it was falling out in clumps. I also put on an awful amount of weight, even though I was barely eating anything. Now everything is normal, my hair has grown back and my weight is normal.

I was tested for thyroid as well. I had to be very, very persistent even though I was writhing around in agony and could barely move. My Dr treated me like a malingerer and told me that women do lose their hair as they get older and weight gain is normal (five stone overweight). I changed Drs.

@DianaT1969 no I’ve never taken a supplement other than a general multivitamin sometimes. We did nutrition as part of home ec when I was at school and were told you got vitamin d from oily fish, eggs etc so assumed that was alright until I started looking into it recently

[quote QueenPawPaws]These are what I was given
[[https://www.weldricks.co.uk/products/huxd3-capsules-20000iu-colecaliferol-pack-of-30]][/quote]
I was given those as well, two doses of 100,000 iu.

I went to the doctors with extreme fatigue, aches all over my body, it was a real attempt to walk around and brain fog too. They did a blood test and my vitamin D level was 12 so very deficient. I was prescribed high strength vit D which did help and I now take 1000iu tablets daily but I still experience the above symptoms just to a lesser degree. I also have a B12 deficiency which I have 12 weekly injections for but I suspect I may have fibromyalgia too. It is very confusing and anecdotally it seems there is a link between fibromyalgia, low vitamin D and B12 levels.

@poopyzbrite4 - that's interesting what you say about weight gain when vitamin D deficient. Several doctors on YouTube/in their blogs say that due to the connection between insulin resistance and vitamin D deficiency that it's virtually impossible to lose weight while deficient. I also fell into the category of weight gain despite not eating much throughout my 40s. Also pretty active. I only managed to lose weight with low carb and intermittent fasting, but it was slow.
I use sunblock all the time and only took a multivitamin all year round. I found out I was deficient in vitamin D through a private online blood test at the start of the pandemic. I'm hopeful weight maintenance will be easier now.

[quote DianaT1969]@poopyzbrite4 - that's interesting what you say about weight gain when vitamin D deficient. Several doctors on YouTube/in their blogs say that due to the connection between insulin resistance and vitamin D deficiency that it's virtually impossible to lose weight while deficient. I also fell into the category of weight gain despite not eating much throughout my 40s. Also pretty active. I only managed to lose weight with low carb and intermittent fasting, but it was slow.
I use sunblock all the time and only took a multivitamin all year round. I found out I was deficient in vitamin D through a private online blood test at the start of the pandemic. I'm hopeful weight maintenance will be easier now.[/quote]
You don't often see it in the symptoms. Hair loss is there but weight gain is not. It's because it has a knock on effect on your hormones. I could not lose weight and everything I ate just added weight on. It was awful. The weight gain made the inflammation worse. I stopped menstruating as well! It was a complete storm of symptoms and my Dr wouldn't take me seriously. I had this massive belly.

Once my Vit D was back on track, I could lose weight and maintain weight loss. I saw a nutritionist, had acupuncture, took supplements like Vit D, multi vitamin and B12.

I'm still in pain and have chronic fatigue but my body is no longer deficient in essential vitamins.

Yes, you're right. Weight gain isn't a symptom of vitamin D deficiency, but potentially a knock-on effect. It makes sense when you remember that vitamin D is actually a hormone.