Pbc/Aih

[janine541]

Well been to doctor and having a course of vitamin d

Does this mean my Pbc/Aih is getting worse

[drewh]

Vitamin D deficiency is very common in the general population, and is thought to be a driver of the onset of a wide number of conditions including depression. It appears to be a special problem in PBC and other autoimmune disorders.

medicinenet.com/primary_bil...

There are a number of papers on the topic of the effect of low serum Vitamin D in PBC. A couple of authorities have suggested that the serum level of vitamin D is a 'plausible marker of advanced disease' such that the progression of PBC can reliably be estimated simply from the level of Vit D in the blood. Others have shown that cirrhosis in PBC is strongly associated with low vitamin D.

I had a blood vitamin D test nearly a fortnight ago as I have taken a daily, store bought, Vitamin D3 for several decades (PBC diagnosed this year) and there is an optimum level for humans which I thought maybe I was not achieving. In the light of the importance of Vit D3 in PCB I thought is was time to find out what level of D3 I actually had! After the test blood sample was taken I exchanged the daily vit D tab (1000IU) I had been taking to a stronger capsule of VitD 3 (2000IU) with Vit K2 because I suspected that my serum D was low. Although I have been making other changes to my diet (especially making an effort to trial exclusion of gluten from my diet to test the assertions from some that gluten is a prime causative agent in autoimmune diseases) within five days of changing to the D3/K2 caps I noticed that the fatigue and brain fog was improved and has remained so to date :-). The improvement is such that a 260miles drive on the 8th for a family event was abandoned because of the brain fog and fatigue (encephalopathy), but I now think the drive would be achievable again. However, the test result has shown that I had had just above the current clinically desired level of vit D (50 nanomoles/L) before I change to the current D3/K2. I will be discussing all this in more detail with the specialist. Maybe that level of Vit D was not enough to have an effect on PCB, and/or the K2 makes a difference. Hope that helps.

[GrittyReads]

I don't think it is necessarily getting worse. As drewh says, low Vit d is common in the UK and elsewhere, plus, a drop in Vit D is a cumulative effect, so it may have been coming slowly for a while. It is one of the side-effects of PBC, and could have been building for a while. It is often not spotted by GPs, so it is good that yours has been spotted, so do all you can to boost it (but not too much, take medical advice) and get out in the sun too. It's good you know so you can monitor it from now on.

Take care.

[janine541 in reply to GrittyReads]

Thank you

[Hidden]

I personally don't think the level of vitamin D is a marker of progression, it's common in PBC and many other conditions. I was diagnosed with low vitD when I started to get bone pain and it went back to normal quite quickly once I started treatment. Watching my blood results every six months I noticed it drops to just under normal in February, (British winter) but by the time I have bloods in August its back to normal.

[janine541]

Can i ask when you have joint pains. Have you little lumps on your knees

[Hidden in reply to janine541]

My knees seem to be fine, no bumps.