Fatigue, dizzy, wrist pain, high Colestrol however Liver test are fine?

Can you still have the above symptoms evan though your liver functions or not high?

I was diagnosed with PBC 9 years ago, and the only symptom I had was the wrist and leg pains. I had some bloods done over and over again and they found the AMA antibody.

The past year I have been really tired.

I work full time and a mum to a 3 yr old.

I get in from work and all I want to do sometimes is sleep. At weekend after playing with my daughter for a few hrs I have to go and lay down as I feel sick with the tiredness.

I have spoken to my doctors, they have done plenty of bloods and informed me all are fine.

She is making out I am depressed, but I don't think I am. I am always a very happy smiley person and still am, but when I'm tired I just want to be quiet.

Sorry for going on I am just trying to explain how I feel.

What I would like to know is can I still be fatigue because of PBC evan though my liver functions are ok?

I'm not on any medication, and my Colestrol jumped to 6.2, 3 months ago. I am back for another check next week. I also go dizzy quite a lot, sometimes when I stand up to quick but also when I am walking.

Thank you in advance xx

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  • Hello Fudger126.

    Well I think it would be a bit difficult in answering part of your question as don't actually know what a normal range liver function (LFT) is for someone with PBC. I have had decreasing LFTs now sine starting urso Dec 2010 and I did have cause to ask later last year as my LFTs have now been deemed as fine though still abnormal on a LFT check. Apparently there is a normal range scale for someone with PBC.

    Are you taking urso at all? As far as I can understand, urso is given to someone with PBC who is symptomatic, that is has symptons of PBC and also has abnormal LFTs.

    Cholesterol can check a bit high in PBC due to the fact bile acts like a detergent on fats to break them down. Urso is a form of bile acid and thus it helps in dealing with fat.

    Have you tried cutting down drastically on any fat intake but remember you will still need to have a little fat in the diet as it is needed for the absorption of certain vitamins, D is one (that is needed for bone health).

    Dizziness can be due to a low sugar level. Please make sure you are eating as healthily as you possibly can now you have PBC. I thought I was prior to diagnose but since the first abnormal LFT in early 2010 I altered even more. I think eating healthily can boost the system and also be of great help to how we feel day-to-day with PBC. I was fatigued during 2010 but within a year of taking urso and altering my life somewhat, I loss this altogether and I do not suffer from fatigue any longer. I do often start to flag a bit later afternoon but that is due to having the itch at night and often waking during the night because of it, has a knock-on effect that lack of sleep the following day.

    As for a doctor making out someone is depressed, that seems the norm these days but I think a lot of us would be hard-pressed to say that we haven't had bouts of depression since being diagnosed with PBC. 2010 and also 2011 for me were not good times, I felt like I was in some black hole as the itch is something that is constantly there and does sometimes become pretty unbearable. Having something like PBC now is with us every single day. I have found in the last 3 yrs it has been the doctors who have caused me to feel depressed, not the PBC as such!

    I don't seem to have got on an even keel with the routine of PBC to the doctors as yet. In May this year with a change of doctors' surgery I thought that I had cracked it, the doctor gave me a plan, now 6 monthly bloods and I was getting 90 days of the urso so it would just mean 4 trips to surgery annually but then Sept., the recalling of the urso 300mgs meant that I had to speak to a GP and he questioned the 90 days of urso I had been getting since Feb 2011 (I pay for the urso). This then caused me some hassle and it was only this wk when I needed to ask for a repeat as he only gave me 84 days Sept., that I had to make an appt to go in surgery to see him to have a chat about the urso and the fact 28 days would make the PBC even more prominent in my life as I only tend to think about it at night when I itch. Silly things like this all add up to making someone feel down at times.

    Hope I have helped in some way but as we all know if you are in any doubt seek medical advice.

  • Thanks Peridot, I do eat healthy as I am on a diet constantly ha, I eat plenty for fruit and veg daily and eat mainly fish and Chicken, very rarely red meat.

    I just wanted to see if I could be tired due to PBC evan if my Lft's are normal?

    Take care x

  • Hello again. Unfortunately yes it does seem that feeling tired and fatigued can be due to PBC. I actually think the AMAs have a lot to do with it as the mitochondria cells are known as energy cells and if they are under attack due to the antibodies we are producing in PBC then I think that could be maybe what causes the fatigue of PBC.

    I've not been rechecked with regards to the AMA but back in later 2010 I was checked to see if I had PBC as at the time I had slowly continuously climbing LFTs, itching and back then fatigue (but I was working flat out in a full-time job that extended far beyond the 37hrs a week it was supposed to be), these AMAs were put down on the results to the GP from hospital consultant, "high titre of AMAs" to give diagnosis.

    For all I know now, it might just be a case that due to me not feeling the fatigue any longer, the AMAs have reduced considerably or I'm not producing any currently as that can be the case with the AMAs, sometimes there are none in blood testing.

    I think the whole thing with the PBC is it is such a bizarre thing to have. Some of us have the itch, others don't, some have fatigue but not itch and some have both symptons. The itch is also said to be a sympton of PBC yet it is no bearing on how the PBC actually is progressing (if at all as it can become dormant in some cases).

  • I have found this to be the case many times over the last 12yrs times am feeling wretched the bloods are "stable" and times I feel grand bloods are "off the scale!!" You just have to learn to listen to your body if you feel wiped out rest, I find even a power nap of about 40mins (i.e. 40winks ) really helps rejuvenate me so can keep going rest of day. Re the joint pains try some heat or cold therapies if you dont want to take tablets though am sure if very painful your dr could prescribe something for you. Hope you get reprieve soon. Bfn.

  • Thanks littlemo for your reply. It's hard to nap in day as I have a full time job and a 3 year old, however at weekends I get to sometimes. It gets that bad that I feel I am going to be sick, and I know if I don't lie down then I would be. With the pains I do that what u say, I have a red hit bath.

    I have spoken to my doctors about how tired I am but they say because my bloods are ok it's nothing to do with the PBC. I know now that there is nothing I can take for it, so whilst I'm going through this low feeling I just need to rest.

    Take care and thanks again xx

  • I am on Urso ask your doctor to send you to specialist who deals with this complaint also join the PBC foundation found online to get feedback from others

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