To ask for your experiences of vitamin D deficiency

[chinesechicken]

I've been experiencing extreme tiredness for about 6 months now, i'm exhausted after a 10 hour sleep. I do work 3 x 12 hour shifts a week but even when i just had 2 weeks off on annual leave i felt the same.

I have terrible muscle and joint pains and have been under physio for my ankles for a couple of months, i find it hard to walk in the morning and i feel like i'm about 90 years old. I can't play the piano anymore properly.

I have a hot water bottle all the time, even now in the hot weather, i'm just so miserable.

I pestered the GP for blood tests, eventually she let me have them but she thinks I am tired as I have had 2 babies in the last 2 years. it's not that, i feel like i'm dying of tiredness sometimes it's ridiculous.

I thought it would be my thyroid, it turns out the only thing i have is a vitamin d deficiency.

She told me to take an over the counter dose of 400iu. it's been a month and i still feel horrendous. So I looked online and i've seen people in other countries on MUCH higher doses with a similar blood test result to me.

I've just gone and bought some 1000iu tablets... does this all sound like vitamin d deficiency? I've seen 3 GPs now and all of them are not taking me seriously. I'm considering going private but I don't have the money spare if I can help it really. My life is really miserable at the moment and I am exhausted and aching in my joints 24/7 and it's really getting me down, i'm 26.

My blood test results are as follows:

TSH: 1.16 mU/L

Serum free t4 level: 16 pmol/L

Total Vitamin D - 37.4nmol/L

Thank you if you got this far

Mine was 17.

Had 10,000iui for about 8 weeks, and have been on the d-lux 3000 spray since.

I get exhausted, foggy brain and pain in wrists, elbows and my knees when it's low.

Just been diagnosed with very low Vit D (17). Have started loading dose of 50,000 per week for 6 weeks. The. Will be on OTC Vit D to maintain. I got tested as I was complaining of low energy and general lack of 'oomph' and motivation (as so tired at end of day). Also been really irritable when tired. Some joint aches but difficult to say whether Vit D related . I have also had irregular heartbeat but am menopausal so could be hormones.

Just to add that my GP said that above 30 is 'ok not great' and well above 50 is healthy.

My Vit D defiency was found during blood tests for another reason.
My GP put me on 25,000 iu for a month & told me to take a maintenance dose of 1000 iu daily for the rest of my life.

I had all the symptoms you had.

Yep get the spray, it made a difference to me. I was having to nap several times a day.

I'm reading this and wondering if I have a vit D deficiency. I feel tired a lot of the time, but I struggle to sleep to matter how tired I am. I have back and hip pain, my hands are often sore, and sometimes my fingers and toes just go white.
I just feel lethargic and blah.
I wonder if I went to GP if they'd test or fob me off.

I was very poorly a few years ago with fatigue and crippling aches and pains. I was struggling to life my legs to go upstairs and couldn't get out of a chair without using my arms as my legs felt so weak. If I pressed with my finger anywhere on my body it felt like pressing on bruise, particularly painfully on my shins and my breastbone. I was 38 but felt 90.

I saw a Rheumatologist who diagnosed Fibromyalgia but that diagnosis didn't feel right to me. I saw a Consultant for another reason and asked her to test my Vit D as my Gp wouldn't. My test came back as 'undetectable' and was repeated with the same result. Unfortunately the Gp didn't know how to treat it properly so I was given Adcal tablets (a very low dose) for 6 months which didn't help at all. I eventually asked for something stronger and was given Fulthium D 800iu which did help over a long period of time.

I am now prescribed 3200iu capsules daily and my symptoms are gone.

sometimes my fingers and toes just go white.

That's a feature of a condition called Reynaud's Syndrome. You should take a photo when it happens again and show your Gp.

Have you had your iron levels checked?

What you described is similar to how I was feeling over the winter. I felt so run down and miserable. I took myself off to the GP thinking I was just depressed. My thyroid came back fine. I had low vitamin D, calcium and my iron levels were so low the nurse told me I should have had a blood transfusion . I honestly cannot say for certain what has helped most, but I feel a million times better. I'm currently taking low dose anti depressants, iron tablets, vit D and calcium. I was given a six week loading dose of Vit D and I think now the dose is 200.

If you're not seeing an improvement, get back on to the doctors. I kept ignoring my health problems since having children, put it all down to being a mum etc. It's only now I feel better I can see how ill I really was! I've also been referred onto the gynecologist because my anemia is probably down to heavy periods I've just put up with since having kids too. It's only cos my doctor was so conscientious, I've found all this stuff out!

I'm on 2000iu daily. I took more over the winter.

Any chance of seeing another GP?

On the print out of my last blood tests (I like to compare some things with previous ones due to a condition I have) it seemed to say that 75 was the normal level for Vit D and because mine was one point below they sent me a letter telling me to pick up a 3 month loading dose from the chemist.

50 is minimum
75 is healthy level

Thank you all so much! i'm just going to look up whether I can take a loading dose with this level. honestly I've tried the 3 GPs we have and they're all really blase about how I'm feeling.

It's so hard as I'm working shifts in the NHS and looking after 3 children when I get home and I can't stand to feel like this anymore.

I have read that I should take magnesium too, and I've just had an epsom salts bath and it has eased SO MUCH of my joint pain, amazing. I wish I knew about these before.

I have endometriosis as well so I've always felt fatigued but my God I am floored at the moment. I can hardly walk normally, my ankles are really bad.

I'm so glad you've all told me it's normal for vitamin d deficiency though because I kept fearing some awful illness with how bad i've felt.

Also - i just started the cambridge diet 3 days ago! I'm glad I found this out now or i'm guessing i would have ended up in a worse state if i hadn't read about the fatty foods.

Sorry not what you asked but did they test your iron? I am under active thyroid but also on and off anaemic. I find low iron way more tiring than low thyroxine. I haven't had had low vit D (yey!)

Yes they did and my hb is 138 so quite good really considering it was 70 after I gave birth a year ago. Sounds like you've had a rubbish time I hope you don't get vit d deficiency too!

I have endo, am usually anaemic if I don't supplement, and had low vit D. Felt like this.

I had also been TTC unsuccessfully for 4 years. Started taking very, very high doses of vit D as well as keeping up with my iron and daily multivits. Started feeling much better, and got a complete shocker of a positive pregnancy test. I'm convinced it's linked. It's likely I was deficient in vitamin D the whole time I was TTC

The correct levels should be over 50 something. Hence why she probably advised 400iu. It can make you feel absolutely rotten so it does sound like it.

I'm on 40,000 iu weekly for 2 months then monthly for 7 more.

I felt like I was dying, my levels were 12 or something. I was in constant agony and couldn't think straight, depressed and was starting to experience peripheral neuropathy problems.

After almost 4 weeks of treatment I feel 1000x times better.

Meant to add my doctor put me on 40,000 to start with three years ago. The 2000 daily is maintenance. It's that or risk skin cancer where I live.

Oh gosh I was diagnosed with this recently and have felt rotten. Just how you describe. I don’t think people realise just how much this deficiency affects a person both physically and mentally. Since the weather has improved, I’ve been feeling a lot better. Keep taking the supplements and get as much sunshine as possible as you don’t absorb much Vit d from foods - salmon is the best source however.

Hi OP, I'm currently having to take supplements for vit D as wel at 2000 daily. God the difference it makes!.

Can I ask, did they test for Vit B12 as well? This can cause similar symptoms and serious muscle pain and fatigue. If they didn't please go back and demand one just in case. It will be ok! xx

Hi chinesechicken, you poor thing, you've really been through it... .... I had the same symptoms, ended up with blood tests and they found a Vitamin D deficiency, but my doctor also thought there was something else, so referred me to rheumatology. Turns out it's psoriatic arthritis as well, and I am now being treated for that in conjunction. I'm v v lucky to have an excellent doctor and rheumatology consultant, so although things are v painful still, they are treating it and taking it step by step. Keep going, you will get there, but if it doesn't improve, pester them for further help. I wish you well...

What else did they test you for aside from the vitamin D? I started having similar symptoms over a year ago, I was low in vitamin D at 43, but they did extensive blood tests which picked up some other things which have ended up being diagnosed this week as a chronic genetic condition.
It was hard work to get them to take me seriously though, they just want to put any tiredness down to having young children.

I took a mega dose of 20,000 units at least daily for a month. The month afterwards I was pregnant after five years of unexplained infertility. So a sort of miracle!
I also spent the very first winter not been by ill. The last two winters I was so run down I was ill/fluey almost the whole time.
It is life changing and it’s a shame my doctor never checked for it. Will regularly ask for a top up dose and remember how important VitD is - it is actually a hormone more than a vitamin. Perhaps someone with medical skills can explain how it works. I just know it is magic, humans are made to be outdoor most of the time rather than indoors.
Also, (lay opinion) if you have more melanin in your skin than a Celtic native, you likely should be taking extra vitamin D because the melanin will deflect a lot of the sun (because it expects a super strong equatorial sun) and reduce your VitD production.
What about VitaminK? I must also be deficient in that.

I was diagnosed as vit d deficient too. Had such a bad immune system because of it and would not be able to shake colds and coughs. Was.prescribed the tablets and feel better now.