when I was first diagnosed with PBC my Vit D levels were low so had a high dose supplement which brought levels up to normal range. Bone density scan was OK.
With general vitamin supplement and cod liver oil in winter months I take 10 microg of Vit D.
I would be interested to hear how much anyone else takes
Many thx
Deb
When I was given a high dose due to deficiency I was told to take a maintenance dose afterwards, perhaps asking your prescriber what they would suggest is a way forward for you, we are all individual therefore our needs will vary.
Me personally after taking the high dose, I was told to take 25ug =(1000IU) this kept my levels stable and in the normal range for a long time .
However, I do get my levels checked twice a year in May and November ( which I was paying for) but last year in May my level was a little low again following the winter, so my consultant said double it to 2000IU (50ug) and she would check it again in the spring.
Have a look at the NHS web page, that’s a good place to start with what amounts are safe to take.
I use BetterYou D3000+K2 oral spray. Vit D need vit K to help with the uptake. A couple of squirts a day seems to keep me on track. I also get out in the sun in summer in long shorts and t-shirts to get some natural D in my system.
Yes I also had Vit D deficiency and take same as you 10ug which my GP said was fine but also take B12 and omega 3..I've had PBC since 2004 and my bloods are ok for someone who has PBC ..so see what your gp days and carry on with the D vits.
I was prescribed the high dose but told by a different doctor to take the D2+K as mentioned above. I've also read that Vitamin D and K need fat to be metabolized, so if it's in a tablet you might want to eat a bit of coconut oil with it or be sure to take it with a meal that includes some fat. Finally, if you take the Vitamin D at night before bed you may find it helps your sleep.
Hi
I had a low D vit result in 2019 which surprised me because I was already taking 5ug per day in a multi-vit tablet. My GP advised taking 10ug per day, which I have been doing ever since. However was tested again this Jan and my levels were still low so now taking 25ug in a stand alone tablet from Holland and Barrett plus the 5ug in the multi-vit.
This is an interesting article, although it doesn't recommend how much to take: pubmed.ncbi.nlm.nih.gov/366...
Low vitamin D concentrations and BMI are causal factors for primary biliary cholangitis
"In addition, we found that serum vitamin D levels had a protective effect on PBC after adjusting for BMI (OR 0.51; 95% CI=0.32-0.84; p=0.007). However, we failed to identify evidence supporting that genetic causal effect of smoking and alcohol intake were associated with PBC in European countries.
Conclusion: Our results enriched findings from previous epidemiology studies and provided evidence from MR that serum vitamin D concentrations and BMI were independent causal factors for PBC, suggesting that ensuing vitamin D sufficiency and healthy lifestyles might be a cost-effective measure for early intervention for PBC. "
Glad to see that these researchers saying their research says PBC not caused by smoking and drinking. They do find it's associated with being overweight and with low Vit D levels.
I have never smoked and stopped drinking alcohol at the age of 19. I was also positively skinny when I first tested positive for the AMA M2 antibody so have never been very happy with the picture previously painted of PBC people! The only factor affecting me has been low Vit D. I haven't been tested again since upping it to 30ug per day.
Vitamin d deficiency
Vitamin D Deficiency
PBC, vitamin d and nasal cell carcinoma
Any advice on bit d and k?
