Feeling lost

I don't understand all the abbreviations everyone uses yet. I know what ama, is. And I know what Lft's are, but I don't know what a lot more are yet. I know I will learn. I am feeling unwell today. Every time I get up I feel like I am going to pass out. I have posted before I was diagnosed with pbc, in November. I deal a lot with the itching and tiredness. I have a busy life and this fatigue really stops me ìn my tracks. Anyone have any ideas how to deal with the side effects of PBC?

11 Replies

  • So sorry you're having a hard time and feeling unwell. Are you on Urso? In addition to regularly taking your Urso, if you haven't already had your vitamin D level checked you should get that done asap. If it comes back low, aim to raise it to the upper part of the normal range through supplementation. You may also want to have your vitamin B12 level checked, as a low level can really drag you down. I assume your thyroid levels have been checked, but if not that's another thing to keep an eye on. Last but not least, how's your diet? Proper nutrition can make a huge difference in how you feel and in how well you're supporting your immune system. No alcohol, very little sugar, eliminate processed foods and eat only real, whole, preferably organic foods. Lots of veggies; smaller amounts of meat. Some of us find we do much better eliminating gluten and/or dairy, so that's another area you could experiment with. A good probiotic daily is also recommended. I hope some of these suggestions prove helpful to you and that you start to feel better soon. Please keep us posted on your progress. Take care. 😊

  • I was diagnosed with pbc 2010, and i too suffer from severe tiredness, i tried vitamin B12 it seems to help me, also doing 30 minute cardio to boost my energy. ....

  • If you feel like passing out on getting up, you need to have this checked out by your doctor this could be something unrelated to PBC.

  • Ask your Dr to check your vit D levels its helped with my pass out feelings

  • I sympathise with your not understanding all the abbreviations that are used – see my post


    There are some useful tips in some of the 30 replies I received, the most helpful being to always use the full term when first mentioned in a post, and thereafter the abbreviated/acronymic form. If everybody did this, then the information would flow much more quickly!

  • Hello krazy-girl.

    I usually add what the LFTs are and the AMAs. Me neither regarding certain ones that are quite new to me but might not be if they were spelled out. I know that urso can sometimes be known as UDCA and from what I have read on here seems that it is more used in America but I think the term 'urso' seems to be more widely used now.

    Me too am an itcher. I used to itch all the time back in 2010 pre-diagnosis but slowly over time after starting on urso Dec 2010 it started to shift and 5yrs on it seems confined to night. I do get a bit prickly during the day at times depending on what I am doing (I find I cannot sit for long periods of time, feel it then so remain active most of the day). I try to rise early morning if I can and drag myself out of bed as I find if I stay in bed even over an hour I find that I somehow struggle to sleep when I go to bed at midnight. I have found if I go earlier though I could sleep it isn't very long and then it proves a night where I am awake for most of it so to me defeats the aim.

    I have found I feel better if I rise earlier and have a warm bath. Seems to open up all those pores and appears to hydrate the facial skin so I look awake. Being Sunday had a bath earlier this morning and sometimes just after getting dressed after bathing I can feel prickly but today I feel like I am normal. I find since PBC struck I cannot sit about reading a book and I always used to love reading when I could do. I take a book to the bath with me and also in the morning whilst bath running I make breakfast and a drink and grab some urso and have all that once I am in the bath. Once of a day I'd have thought it a crazy idea but for me it seems to be the wakening boost for the day.

    I experience tiredness later in the afternoon usually if I have had not such a good night of sleeping as during the night if I can't sleep I then feel the itch and spend a lot of time fidgeting, popping to the loo (think this has now become habit as the short walk and movement stop the itch temporarily).

    I altered my urso routine a few weeks ago and it seems to be better than the previous one. I had not taken in 3 times in the day before and decided to take 300mgs with breakfast, then 150mgs around 3p.m. and then I take the final 150mgs around 9p.m. Seems to be working for me somehow and though it might be mind over matter so-to-speak I would say the itch has improved further of a night since.

  • Hi Krazy-girl

    I believe that the feeling of passing out could be due to stress and worrying over PBC. I found that through reading all the blogs/advice on this site has helped me to understand that PBC is not fully understood by the medical professionals and that worrying can be more of an issue that the condition itself. Many sufferers have got on with their everyday lives, keeping busy, etc. and any symptoms subside.

    Try to relax and the only advice I can say which has worked for me is to use low-fat foods, eat veggies & fruit, drink plenty of water (I drink Aloe Vera juice twice a day); cut back on sugar intake and you will notice the difference in how your body adjusts to a healthier way of eating.


  • Thanks Krazy girl and Yummybear, I'm going to try the Aloe Vera juice. Reading contributions to this site has really helped me tremendously. I was diagnosed with PBC 12 years ago but had to look after my ailing husband who died 3 years past. I've felt so bereft and terribly isolated since. Feeling lost sounds very familiar and as individuals we all have difficulties with life as well as with this illness. I've found that Doctors (GP's) know little about PBC and related teatments. I'm due to see my GP in 5 weeks and find that I now have to make a case to get prescribed Questran - they're more likely to take you off a medication than prescribe another! Then again that may be because I'm over 70! I'm certainly not the type to ask for a medicine unless I really need it! I hope you feel better soon.

  • I'm over 70 as well but what is Questran? My CBC is low as well and the doctors are considering a transfusion. However they seem confused about what to do and haven't been in touch with me. Its exasperating

  • Hi, sorry I should have been more specific. Questran is prescribed for pruritis (itching) associated with PBC, although I'm not sure if it can be prescribed if you're already taking Ursodeoxycholic medicine. My LFTs are pretty normal so I don't need Urso any longer. I have stopped taking Simvastatin because of unpleasant side effects and as Questran can be taken to lower cholesterol, I thought I might ask for it instead as it would also help the troublesome itching. Can I suggest that you ask for at least a telephone appointment with your Doctor to clarify your treatment plan I have found through experience that we older folk have to shout a lot louder to be heard nowadays! In my opinion, ageism is becoming a problem within our over- stretched NHS - my husband died 3 years ago and Im still very angry about the very poor standard of care he received both in the Care Home and Hospital and the GP couldn't wait to take him off medication that was giving him a reasonable quality of life! I still haven't got over it all. Best wishes

  • I don't know what they all stand for either but I know what good blood results are. Mine are coming down. I must Google all the abbreviations. I live in Ireland. Not much sun. We don't process vit d well so I am thinking of doing a sunbed session again. Did one before Christmas and it helped my tiredness. Obviously you need only do a short few minutes and need to know how many suits you or you will burn but I think it might help. Stress doesn't help itching. Massage helps with joint and muscle pain. That's really all I know. Best wishes. Michelle

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