Vitamin/mineral deficiencies

[Finn2021]

Hi. I've had Pbc for 6 yrs now. Recently I've noticed that I am more fatigued than normal. I asked for my blood results over the last 10 yrs . I noticed a progressive decline in my ferritin levels over the last few yes. I had a vitamin b12 level done recently and it was just above the borderline/normal range. Not low enough to treat. Has anyone seen a link between vitamin b12 and iron levels and pbc? Thanks

[iagra]

I have PBC officially for 7 years, but, I think I have for over 10 years. My B12 sky high, I don't even have a number, as the lab doesn't test over the high limit. My iron is in the range, but, always closer to low limit. I think I'm getting more tired, because I'm getting older. PBC may not be responsible for it. But, who knows.

[DebatDG9]

Pernicious anaemia was the 1st of my ever growing list of autoimmune conditions to be diagnosed so B12 inj every 2 months and daily folate also iron cos of anaemia due to unidentified cause

[Finn2021 in reply to DebatDG9]

Hi. Thanks. How did you get diagnosed with pernicious anaemia if you don't mind me asking?

[DebatDG9 in reply to Finn2021]

Investigation of recurrent miscarriage.

[butterflyEi]

I was diagnosed with pernicious anaemia a few years ago and now receive regular B12 injections from my GP practice. I have since learned from Vitamin B12 Wake Up group on Facebook that co factors such as folic acid is also needed. They have a document in "Files" called Testing Information which you may find useful.

The Facebook Group is associated with theb12society.com

If your B12 is just above border line then I believe you will need to take this matter further with your doctor. Your profile does not show which country you are from, I am in the UK and it can be a battle unless you have a doctor who is more clued up about B12 deficiency.

[JubileePenny]

I was diagnosed with PBC about 15 years ago and have, to date, responded well to Urso. On one occasion, I expressed concern about taking some over the counter medication because it said that people with liver disease should not take it. My GP said, "You do not have liver disease!" I asked why I was taking the medication and she said, "So that you don't get it!"

I have had trouble with fatigue for a long time and my B12 was just 'low normal' when it was rarely tested. I did have abnormal levels several times, but doctors just said to eat better. A few years ago, I expressed concern to my GP (a different one) that when I am on a crowded bus, I feel urgently that I have to get off. She had my B12 tested and it came back 'no trace'. So I took a regular supplement (low dose) and went in every few months for shots. Then the pandemic came and doctors started doing appointments by phone. One of the doctors at my clinic said it is not necessary to get shots. Take a supplement. To make a long story short, I now take 1,000 to 1,500 mcgms per day. After about a year, my levels are well into normal. My GP said to get the sublingual type as it is absorbed more quickly and goes into the blood and not through the liver. I have also been taking 28 gms? of iron during that time . I take these supplements faithfully.

This has changed my life. I have always been 'a nap in the afternoon' type of person, but now I have energy all day.

Do not accept fatigue. It may not be directly connected to the PBC. You don't have to have pernicious anemia for it to be a problem. My blood cells are fine. What I have is poor absorption! Talk to your doctor about large doses of B12. My understanding is that it is not harmful.

Best wishes.

[Finn2021 in reply to JubileePenny]

This is amazing news! So happy for you. Thankyou for the information!! I think this is what I should do too! As i belive its poor absorption as well. I have a gluten intolerance too. Does the 28mgs of iron make you constipated though?

[Finn2021 in reply to Finn2021]

I forgot to ask do you buy the vit b12 and iron tablets or is it something your gp has been willing to prescribe? Thanks

[JubileePenny in reply to Finn2021]

Hello Finn

My doctor recommended a certain brand of iron, high dose, which I didn't tolerate well, so I went for the 28 mg. It is fine, but of course, it has taken longer to affect my levels.

I don't spend a lot on supplements. I just buy the grocery store variety. Here in Canada, the common brands are Webber and Jamieson. The important thing is to get the sublingual which dissolve under your tongue. You do not need a prescription for B12 here. I always tell my GP what I am doing. She is interested in test results, so when my levels are good, she approves.

[Finn2021 in reply to JubileePenny]

Thanks so much xx

[Finn2021 in reply to JubileePenny]

Would you be willing to share where you buy (if you buy) your b12 and iron supplements? Many thanks. Fiona.

[DebatDG9 in reply to JubileePenny]

Hi

I’d no idea there were sub-lingual preparations- why do we have to go through the rigmarole of having to go for injections if we can just take a supplement? Are they lots more expensive?