Vitamin D deficiency

[Finallybreathe]

I have been diagnosed with vitamin D deficiency which is 29nmol. I have symptoms such as tingling, twitching (all over body), some weakness in both arms and legs, achy joints & fatigue which is annoying.

Is anyone going through this and have similar symptoms to me? Worried it could be a neurological illness in disguise! I have taken 2 tablets so far (20,000 tablet 2x a week) and I think I feel a tiny bit better? Not sure if it’s in my head.

Thanks

Wow
You have a good GP
20 years of pain, tiredness and loosing my hair and I was constantly fobbed off by various gps with
“what do you expect you’ve got kids”
”oo, mines falling out too”
’” I’m only interested in you if you’re losing weight” ( she was doing cancer research)

Finally in an over the phone consultation not with my gps during covid I was found to be b12 deficient.
I’ve been on high dose supplements / spray for a while and my hair doesn’t seem to have got worse.
Although I have been using Regaine as well

I would be interested if your vitamin d or Calcium levels might be causing hair loss if you can come back and let me / MN know please as my GP surgery thinks they’ve done all they need to do now despite causing my nerve damage so aren’t bothered to test anymore.

🙏

Yes, me. I had an MRI due to suspected stroke because of the the tingling and a severe numbness in limbs episode, was referred to neurology who gave me the all clear, but I was worried I had MS. I was exhausted, had the numbness, pins and needles tingling, eye twitch, aching joints and muscles. All my blood tests came back clear, then I requested a vit D check which came back low.

I discovered that our reference range is different to other countries too, because most people are deficient here it's not taken as seriously and omitted from most general blood tests.

This was early September, I asked why I would be low when I eat a lot of fish and worked outside all summer and been abroad and the GP said it is probably because we had such a cloudy summer which is true.

Anyway, I'm typing all this detail because 3 months after supplements most of those chronic symptoms have gone. In hindsight I had other symptoms, dry skin, poor wound healing, I became prone to sunburn for the first time in my life, low mood. I've been taking drops because they are more easily absorbed, and I've been urging everyone who doesn't feel great to take it because everyone in the UK is advised to take it through winter anyway and I do think it has helped me.

If anybody is interested there is some really good information on this on utube... have a look at Dr John campbell

Hi, I was really hoping the Vit D would stop the hair loss but it hasn't happened yet. Hopefully my Vit D level has gone up from 22. Maybe it will just take time. The GP tested for various other things - coeliac, B12, can't remember what else but thyroid is stable/within range (I'm on 25mcg a day) although one of the tests flagged up I'm pre-diabetes. I am under a lot of stress though - maybe that is the reason for the hair loss.

I'm having the Vit D and calcium blood tests on Monday. Results probably a week after that. GP had advised to get Vit D for 800-1,000 units a day (after the 6,400/day prescription ran out) but depending on the test results I might increase that. As soon as the hair loss stops and I think the cause has been Vit D I will let you know - even if in a few months' time. It's horrible. Every time I wash or comb my hair clumps come out. Good luck.

I have poor wound healing too - I picked the side of my thumb about a year ago and it is a big callus now (sticking out about a third of a cm from my thumb). I was hoping an increase in Vit D would heal it but no sign of that so far. I will always take a Vit D supplement now, knowing what I know.

Thankyou @KarlaKK
that would be really useful.

No problem. I hope you see some improvement. Will let you know if I do.

This has really hacked me off. Mine was low, meant I couldn't have an infusion. Consultant only offered me a pill weekly for 6 weeks, colecaliferol 50,000 IU.
And I'd previously been denied anything.
Now I'm reading this I'm even more narked.

I take hux 20,000 capsules had to do a loading dose of one per day for 15 days then one a month, does seem to be working as I'm not as achy or fatigued.

Also to add it has helped with hair thinning as it's started to grow again.

I went and paid for a Vitamin D test and high dose injection (£50). They told me that despite the supplements I had been taking every day for six months, my levels were extremely low and I’d have to take them for another 3 years straight to build to the normal level. The booster injection put me to immediately sufficient levels and I was literally bouncing off the walls the next day. Cannot recommend enough and will do it every 6 months.

That isn’t too low, thankfully and pleased you are feeling better.

I would be happy to have that result. I have MS and really struggle with vit d levels, common in MS patients, very hard to get into a lower normal range. I have a couple of sunshine holiday in winter, and take supplements.

That is interesting. I'll look into that.

I went for my blood test today under the impression they were going to do calcium and Vit D to see if my Vit D levels were up. I'd said this on the phone when booking the appointment. The phlebotomist said the form only said to check for calcium levels. I said I want to know what my Vit D level is now after 6 weeks of 6,400 daily so I know whether to day more than the 800-1,000 the Dr said for me to go on after the 6 weeks at 6,400. It's no point taking only 1,000 if my level is still below 50. It's such hard work getting them to understand. I want to boost my level quickly, not plod along at 45 or whatever. I'm reading mixed reports about how long it takes to get over 50. Even then I'd rather it was higher. So now I have to wait to see if they got the duty Dr to agree for Vit D to be tested from the sample of blood I gave or if I have to book another appointment. Receptionist was snotty but I think I need to know the high dose has worked or if I need to continue on a high dose. Is that being unreasonable? I was trying to save having to take another appointment. I know the NHS is underfunded and things aren't great but this is a waste of my time and theirs if they haven't got the duty Dr to sign off the Vit D being tested again before the sample went off to the lab. I can do without the receptionist making me feel a nuisance too. And my hair is still falling out.

You are not being unreasonable at all!

Thanks Munchyseeds. I think we need to take a bit of responsibility for our health but we can't do that if we don't have all the facts. If I know what my Vit D level is I can decide what dose to take to boost it more as long as it doesn't affect the calcium. It feels the surgery has done an incomplete job not testing to see how much the Vit D has worked, especially as I think it is linked to my hair falling out, which hasn't stopped.

That's interesting , I'll have a look into that. Didn't know there was a vit d injection, but I'd be quite happy to pay for that.

Just googled
I see they are vegetarian
Might give them a go!
thanks

@GrapefruitFrog thanks for that too.
Id love to have a day or two of bouncing off the walls

I'm sorry this has taken so long but there was a bit of a mix-up at the Drs and when I went for a blood test they only tested calcium to see if the high-dose Vit D had affected it. It took me ages to book another Vit D blood test - had to have the Drs approval - but I've just had the results.

My Vit D level has gone up from 22 to 102 nmol/L and my hair has stopped falling out pretty much, so I think it was due to the low Vit D.

I wasn't feeling well - tired, weakness, sore joints (particularly the fingers). Paid for a private blood test and found that my level was just under the minimum at 48.

I've been taking a Seven Seas supplement.

I was losing hair as well.

Shall add that my calcium was dead on the bottom line of 'normal'.

Forgot to say that I'd already started taking the Seven Seas supplements before I paid for my test. I'd actually thought that my iron levels were the problem. They were all at the low end of normal and my B12 was bang in the middle. (Kellog's Cornflakes for the win?)

My mum had severe osteoporosis, so I'm glad that I paid for the test. It was 90 quid.

That’s really interesting
So now I’m going to keep focused on Vit D.
It’s also interesting your levels went up by 80 in 2 months ( part high dose ). I know everyone is different but it does give an idea to work from.
Thanks for coming back it’s much appreciated

It really is worth keeping an eye on these things. I think going forward I'm going to get a good supplement that covers a few things. I also won't miss taking Vit D from now on.

Would your Dr not agree to it? £90 is expensive! Worth it though.