Anemic again

Hi all,

My PBC diagnosis came from a process which was started because it was discovered I was severely anemic. I had exxtra iron, levels improved, I have taken ursofalk over a year now and I am a lot better. Then two months ago I started feeling exhausted again. Now my iron levels are down and a new investigation is under way. Anyone else anemic? Why does this keep happening? I am sooo tired all the time. It is really boring!


5 Replies

  • Hi Jojowen, my mother and I both have PBC and were dignosed more or less at the same time although she had it longer than me. Like you she always anaemic, sometimes more than others and has to have Iron injections when very low. She has been investigated many times but they cannot find any reason why. I don't have any problem with my Iron levels, I have extremely low levels of Vitamin D and that's even taking a huge dosage everyday and spending my summers in sunny Spain. So I believe that it is part of the PBC. The liver doesn't do its job properly and doesn't absorbed the vitamins from the food.

    Good luck with your investigation. xx

  • Thank you! It really helps to know that someone else has similar experiences. My doctors seem to think there has to be another reason, they are adamant it is not the PBC. I would be happy if they'd just give me regular iron infusions, but of course it is good they are excluding other possible causes. I am glad it is being monitored but I wish it would be easier to pin down what is what. I think you are right, the liver is not doing what it should and that causes different kinds of trouble. Hope summer will help with your vit D.

    Thank you for replying!


  • Hi. I also have low vitamen D and I live in the Canary Islands! My vitamins

    are nearly all at the wrong levels. I agree with you that our livers are not allowing the food yo be properly absorbed. Enjoy Spain!

  • Hi jojowen ,I suffer from iron deficiency aniemia and have to take iron tablets on and off they don't know why it keeps dropping only that my blood cells are tiny for what ever reason .Tiredness is also a part of Pbc the best advice I can give you for this is to learn to listen to your body don't over do things prepare in advance what your going to do sleep when you need to ,I usually have an hour or so in mid afternoon this keeps me going into the evening .hope this helps x

  • Hi, sorry to hear your blood cells are tiny. I think they said mine were too, tiny and pale. I am glad I' ve managed to go from 80 to a 132 on the first iron infusions I had, now I am down to 100 but some days, when I have rested a lot, I can feel a little more energetic. It helps to be off work and to be able to do everything in my own pace.

    Thank you for replying!


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