Vitamin d deficiency

[spoul]

Just interested how many of you take supplements for this. It's cropped up a couple times recently in unrelated posts and seems to have strong correlation to fatigue. Not sure why I've never been tested!

[Poppygayle]

Hi my friend I was put on Adcal-D3 1tab 2xdaily At the same time as being diagnosed with pbc due to low vitamin d levels it is combined with calcium .bloods checked regularly I'm surprised you haven't been tested as low bit d causes fatigue! X

[spoul in reply to Poppygayle]

Hello there send me some packaged sunshine back from your hols........that's what we're all short of. I'm going to request a test at hospital in 3 weeks.....see you soon x

[grace111 in reply to spoul]

iv been in the house for months at a time even when it was sunny so i still need vit d. love grace xoxo

[58goose in reply to Poppygayle]

I'm also on the same Adcal tablets as you but mine was due to having a bone scan done and it being decided that I needed extra calcium. I believe we need the vitamin D in order to absorb calcium. I still get bad fatigue days but not as often as I did in the early days of PBC as I'm now retired and can pace myself!

[Poppygayle in reply to 58goose]

Hi 58 goose may be I have got mixed up I too have had the dexa scans a few times now and take the Adcal d3 for calcium deficiency rather than vit d deficiency. I just assumed I was vit d deficient! Silly me .

[spoul in reply to Poppygayle]

You will be if you don't enjoy that sun in Spain haha xx

[chynablue]

I take Vitamin D supplements and get my levels checked often.

[ranrace]

I have been on vitamin d for the past 6 months. With some luck last week's blood test shows some improvement. Before it was so low it was almost a negative number. Normal is 40, I was at 3....... My sleep is better so I do feel better when I'm awake. Btw I get a ton of sun, between the garden, landscaping and mowing 4 acres, in North Carolina. But still stupid low on vit d and b12.

Have them check b12 also, many people with gi problems lack this one also.

[butterflyEi]

Hi spoul

I paid for a private test about a year ago (£25). I was deficient after a winter sunshine holiday. Since then I take DLux which is an oral spray which I use under the tongue every morning.

February this year I was tested for B12 and it came back deficient so have now been diagnosed with pernicious anaemia which was a bit of a shock! B12 is boosted by regular injections on the NHS but the time between injections is long so the symptoms tend to return.

I spoke to the doctor about other vitamins A E and K as I have recently started on cholestyramine which could mean that I am not getting the right vitamins from my diet.

I am not sure the NHS in general is interested in vitamins but the GP had no objection to my taking them for myself.

best wishes

[Jaxter]

Hi,

I was tested after asking about it when I noticed it mentioned previously in posts, it was low so I now take a tablet twice a day, My vitamin A and C levels were also checked but are ok. I was also tested at a time when I was spending more time out doors without a heavy sunblock so I should have been absorbing plenty.

Worth asking about, vitamin D is really important and helps us absorb vitamin C.

Jax

[teddybear7]

I asked for test and was deficient, so I'm on it .x

[Hidden]

I was tested due to bone pain, and fatigue, i was found to be deficient the number was something like (10). I was put on 20,000iu three times a week for 3 months, then down to 1000iu a day as a maintenance dose.

My numbers are now considered in the normal range but gastro said she'd like to see them at an optimum level not sure what that means. It did make a big difference, although I would get tested before you take any so you get the right dose.

I wish there were somewhere to get b12 checked privately my GP refused to rest it when I saw him about it, said I'd have to learn to live with it.

[Gioielli]

I take Calceous - Vit D and calcium- tablets twice a day and rarely suffer from fatigue.

[Rockie]

Spoul Hi. I take Vit D Supplement. We are suppose to take Vit A, D, E, K2. So many pills. Impossible to keep track of all we suppose we take.

[Brummi]

Hi spoul, I take Levothyroxine to help with this problem, I also take an iron tablet because of fatigue as well. Tiredness seems to be associated with this ailment..

[spoul in reply to Brummi]

Hi there yes I too am on thyroxine but I'm not anaemic 😊

[dollydaydreams]

I take adcal with D3 combined and also take an extra vid D3 i but from the chemist as i don't go out much, i was only tested for it when I went to the bone unit fro a dexa scan and found to have bad osteoporosis.

[spoul in reply to dollydaydreams]

Hi thanks for your reply. My bone scan is normal but I'm just clutching at straws wondering if anything can help my fatigue 😊

[Pat_H]

I've taken Vit D3 for years, long before I was diagnosed with PBC. I was never a sunbather and was aware of Britain's very low sunlight levels in winter. Possibly this is why I've never had the debilitating fatigue that many people with PBC have.

[liver-bird]

Hello - I was put on Calcium and Vit D tablets when diagnosed with osteoporosis 8 years ago. It was another 5 years before pbc was discovered. This year I was diagnosed with coeliac disease, another autoimmune which can also cause low vit D. My first autoimmune diagnosis was underactive thyroid about 12 years ago and treated with thyroxine.

The doctors have no idea how long I have had pbc or coeliac disease or in what order they came. Based on symptoms, I think the coeliac was first and the inflammation and malabsorption it caused may have lead to the other conditions.

I think my osteoporosis could have been avoided. To date I have broken 5 bones on separate occasions with all the pain and loss of confidence that goes with that.

On the positive side, despite having pbc my fatigue and itch is mild and I wonder whether this is because I have been taking Vitamin D. Also, now I am off gluten, I feel so much better my quality of life at present is greatly improved.

I am more and more convinced that people with one autoimmune condition should be regularly tested for others and for low levels of vits and mins.

My experience is that each condition was discovered separately and treated with no thought that there might be other conditions lurking when they are highly likely to be linked and one may have even caused another.

I hope this information may help someone else. With best wishes. Diane

[spoul in reply to liver-bird]

Thank you for your reply and like you say most people have more than one autoimmune disease.

My thyroid has been under active for 25 years and my Pbc 18 yrs but do hope I don't add any more to my collection. 😊

[alpha3]

When I asked, my consultant (gastrologist) said he doesn't test for Vit. D and that half of the country are proably deficient due to lack of sun in the UK. However, I requested a test and am being tested before my next appt. I do try and get outside as much as possible, so I'm interested in the result.

[spoul in reply to alpha3]

That's interesting thanks let me know how you get on. 😊

[jiacheetah in reply to alpha3]

I'm in Arizona where it's always sunny and still have a severe vitamin d deficiency due to hypothyroidism and PBC.

[DeeSree]

I take mega dose Vit D once a week but since it continues to be low I supplement myself with a chewable everyday too! Anxious to see if its improved and that won't happen until end of Nov.

[moepag]

I also take vitamin D after testing low. My other vitamin levels, A, K & E were in normal range. Also take levothyroxine for under active thyroid.

[ladyfrances1]

Every time I have blood tests I receive a letter from the hospital/consultant that my vit D is very low. I am on medication for this already at a high dose too. So yes there are a lot of us PBC sufferers with this problem. Good luck with everything, hope you soon get the tests you need.

[ginam]

I was tested back in 2008 and was deficient of Vitamin D. I was surprised because I drink a ton of milk. Must be a malabsorption thing with me. I regularly sun bathe and take supplements in the winter when there is less sunlight. The sun also helps with the itch and it is free.