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

Ladies ask for, and consider, your iron stores please (called ferritin). All related. They should be between 15-150. Mine were 5 with all the same symptoms as above. I now take massive amounts of iron twice a day and will need to for another year

I was deficient 2 years ago and felt shocking. I was also given the loading dose but after doing a lot of reading I now take 5,000 iu every other day to keep my levels up (unless I get loads of sun during the summer, when I drop it a bit). I also take k2 and a magnesium supplement (just because I’m not a bath person, so Epsom salts aren’t a good way for me to get my magnesium)

I’d recommend having a look at the Vitamin D Council website. Loads of great information, although worth mentioning with it being an American site, there are not many references to UK research (or certainly there weren’t when I was reading it). I found there was very little UK research around at the time, which may explain your GP’s lack of knowledge. Although you’d have thought they’d have caught on by now that this is not just a fad! I was glad that someone was investing in it at the time!

Oh and also, it takes about 3 months to get your levels back up so don’t be too disheartened if you don’t feel miraculously better even with a loading dose. My doctor only prescribed me an 8 weeks loading dose so I bought some off Amazon that were 10,000 it and took them every day for another month before I was retested to a satisfactory level (think I ended up just over 100).

This is everything they tested me for. I'm sure they were meant to do b12 but I haven't seen it on this sheet. You're all being so lovely! Thank you.

If I take a loading dose that I just do myself... Am I OK to take between. 5000 and 1000iu of just normal vitamin d I can buy? I just bought some vitabiotics ultra vitamin d 1000iu from tesco. Can I just take a few of those?

About a couple of years ago, there was a long thread on here about vitamin D deficiency. I had some of the symptoms, so paid for a test (as it generally wasn't a standard test done by GPs at that time).

The test was done by an NHS hospital biochemistry department, so I reckoned it was worth the £25. The test result included the following guide, in nmol/L, which might be useful for others:

Less than 15: Severe deficiency
15 - 30: Deficiency
30.1 - 50: Insufficiency
Greater than 50: Adequate.
It also said:
Total vitamin D levels above 220 nmol/L are considered 'High' and increase the risk of vitamin D toxicity.

What I inferred from that is that somewhere in the middle of 50 to 200 is appropriate.

My first result was 59.8, so only just above the minimum level of 'adequate'. I then started taking OTC vit D daily, 2,000iu in winter, 1,000iu in summer (though I wasn't getting out and about much). The last test I had done in Feb 2017 was 133, which I think is an appropriate level.

I was seeing my GP late last year and had printed out my vit D results for him, in case they were relevant. He barely looked at them, but oh-so-kindly told me that they don't intervene unless the results are below 50. So, not that much different from your GP's view, OP, of it being 'on trend'.

(What's worse is that this GP says on his profile on the Practice website that his specialist interest is homeopathy!)

Your post is timely because DH has just been diagnosed with Vit D deficiency. He has anxiety and was convinced by Dr Google he had MS. He had/has pins and needles and numbness in his limbs, and extreme fatigue. The GP has prescribed 20,000 ug of Iron per week, going down to 1,000 after four weeks, then he needs a blood test in four months. His level on the previous blood test was 4. Yes, 4. He should have been in hospital. If it isn't going up he will need more tests.

He's a postman, out in all weathers, which makes this diagnosis more remarkable.

At your level I’d go with 10,000 a day, with the k2 and magnesium too. You can just take lots of 1,000 iu tablets but it will be an expensive way of doing it If I were you,I would buy some of the larger dose tablets from Amazon (I’ve not been able to find any high dose in the shops), and save the 1,000 for when your levels have normalised.

400iu is recommended for people without a deficiency. You need a much higher loading dose for a few months to bring your levels up.

I had similar symptoms to you and thought I must have something seriously wrong with me.

My vitamin D level was below 10 and I was prescribed 40,000iu vitamin d3 (d2 is next to useless) taken once a week for 12 weeks with 1000iu on the other days. After 2 weeks I was feeling noticeably better in the couple of days after taking the loading dose. By the end of the 12 weeks my levels were 142. I was taking a standard 400iu dose every day but rapidly started feeling exhausted again despite being out in the summer sun every day so I upped it and started feeling better.

Now I take 5000iu vitamin d3 every other day in the winter and a 1000iu vitamin d3/calcium/vitamin K every day. I get mine from the bulk powders website, you can buy from them through amazon but the have better deals on their own website.

If your Vit B12 is low, injections are the most effective way to get your levels up. I take 1000mcg a day (the Jarrows ones that dissolve under your tongue) and I really feel it if I miss a few days.

My Vit D level was 34 nmol/L and I'm on a 20,000 iu capsule 3 times a week.
So I'm getting 60,000 iu a week, you've increased from what your doc suggested and you're still only getting 7,000 iu a week.
I agree with PP that you need a much higher dose.

I've been taking it for about 6 weeks now and realised the other day that I haven't dozed off on the sofa for over a week now and am generally much less achey, so it seems to be helping

Good luck

OP - I can highly recommend ‘Viridian’ Vit D - comes in liquid and capsule form and is excellent quality. I take 4000 daily and feel SO much better

As a person with a rather complicated thyroid issue, your TSH looks ok to me. Anything above 2, with symptoms and I would worry.

The main culprits for vitamin deficiency are b13, d and iron for tiredness.

I would massively increase your vitamin d to the levels others on this thread have been prescribed for 10 weeks.

I would also take a strong vitamin b complex alongside it.

If you don't feel any different in 10 weeks I would go back to your GP.

I find vitamin d and vitamin b12 the most important for the symptoms you describe xx

He has anxiety and was convinced by Dr Google he had MS.

I was convinced I had MS too and eventually I was given an Mri to rule it out. My Gp and Rheumatologist wouldn't do a Vit D test, but they gave me and Mri. As I said upthread, my Vit D levels were undetectable by the time I was tested.

Your GP is a muppet. Anyway, i had similar results and was prescribed 20,000 units daily for a fortnight then 1000 per day afterwards. I started feeling better after a few weeks. Then i got pregnant and felt worse again!

Make sure you are getting plenty of vit C and calcium in your diet, the vit d deficiency means you will have been leaching calcium from your bones

I couldn't get over constant chest infections etc.
After many gp visits this wonderful doctors did some blood work.
My level was 18 average it's 50.
I got on prescription 50,000 ug a week for 6 weeks.
I am a new woman. No more tiredness, hair loss or chest infections.
I am so grateful I meet the right doctor she was amazing.
Also check B12 and Iron. Best of luck.

I would also take magnesium (we use a oil of magnesium spray) as lack of it can cause tiredness and some studies show 90% of us are lacking in it if what I read was correct.
It made us all itch to start with which is a sign we are deficient apparently and DS and I have both had the leg aches too which can be a sign of lack of magnesium too

I was really surprised to be given a vit d shortage diagnosis from GP, I had been very tired with achey limbs. I had a three month perscription of high dose vit and have taken over the counter dose since. I feel so much better but it does take a couple of months to sort out.

Btw for those who are unaware pregnancy and breastfeeding massively deplete your vit d, nhs guidelines actually say all pregnant and breastfeeding ladies should be taking supplements, except no midwives seem to tell you this, 2 pregnancies close together and you will almost certainly by deficient

www.nhs.uk/conditions/pregnancy-and-baby/vitamins-minerals-supplements-pregnant/#vitamin-d-in-pregnancy

Yes to all those symptoms, you need a Much higher dose, see if you can get a different GP to prescribe or purchase your own.
Get them to retest you after a while.
You will probably needcto keep taking a maintenance dose, also B12 supplements will help and yes, epsom salt baths will help with pain in short term.

Regarding supplement dosage, I have read that bmi is a factor. That someone in the obese range should be subscribed 3 times more than someone in a healthy bmi range. Presumably an overweight bmi would require more. I'm not an expert, just read this, but in case it is of help. [slopes off to check dose on calcium/bone supplement]

My youngest is 10yo. I heard about the vitamin D supplements recommended for preggos, from many channels, at least 5 years before he was born.

Maybe I'm just unusually well-informed.

You jeed to get your level to about 125 to be optimal. Softgels with no fillers. I take 20,000 iu per day along with vit k to move calcium to bones and teeth and also magnesium to keep it there.

Have you had your b12 checked?
Excellent support groups on facebook for both

Also, don't take any b12 supplements before testing. It will give a false high and you'll never get the treatment you need

I've just looked online and seen I can have active b12 testing done by post with a finger prick test, would that be ok to do? I really struggle getting in to our GP.

I would start taking a mixed B vitamin with B12. make sure it's Methylcobalamin version not the Cyanocobalamin kind which is found in cheaper formulas. And you are taking vitamin D3 right? that's the only kind that will work. I had good luck using both these bought from Amazon when I had low D levels discovered after a bout of shingles! My mother was also found to have low D levels and the doctor prescribed her high dose kind 2 x a week and it did not help her at all.