Still not listening

Been for my 6 month check-why bother.although I weigh 13 stone(overweight for sure) my docs refuse to give me anymore than450 mg of urso as it has got my blood results in normal range.ive asked continually to increase it but this time I took Pbc Roberts e mail to me and bare facts mag(didn't go down too well).i was told by gastro it was proven taking more urso than you need actively damages the liver!really?i also asked about a scan as I have nodules on my liver(and have just lost a cousin to liver cancer) and was told there wasn't anything to worry about as any cancer would show up on my blood results.i give up.feel like there's no point going every 6 months.its always you are fine the 450 mg of urso are doing the trick go away and come back in6 months.the leg pains the liver ache are due to something else and will clear up in time

This is the second gastro I've seen at this hospital.they all say the same

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  • It is so frustrating, because other people, including doctors do not know what we go through. I know listen to my body. There is'nt a body lotion I have'nt tried, no perfume, no colourants ( for the itching. Nothing helps as it is from inside. Ursotan is to thin the bile. For my loose stools, luckily I no longer have it, I use homeopathic medication and eat no GLUTEN, or fatty foods,found it to be poison for me. Your diet is very important. It is just everyday you feel different. Unfortunately this is a rare condition and I think they dont research on it enough. They cannot explain why one gets it, but it is auto immune. Mine started with thyroid, underactive, and I battled to pick up weight. Now, thanks to my own research and homeopath I weigh 59kg. That was my weight since I got married 49 years ago.

  • I'm so sorry you're feeling so frustrated. But I understand. After 40 years of lupus and RA I was diagnosed with PBC 5 years ago. There were times, many of them, when I would see my doctor and leave his office thinking it was a waste of time because I still had the same physical problems but he was not doing anything different. Now I have such horrible fatigue because of the PBC and nothing will be changed because the urso has brought my levels to normal.

    But I believe there are other things beside medications. That has been true for lupus and RA and I'm going to look for any that will help this fatigue.

  • I read on another site recently that we really need to be seen by a hepatologist. I am not sure how this works if you are in the UK. I have not seen a specialist in more than 5 years (the last one I saw was rude and arrogant so I have never pushed to go back to the hospital) however the GP reacts to any information that I put before her. I showed her the leaflet from the Ursofalk box which has a chart that shows weight to dose ratio and she followed that guidance. I have also given her the new leaflet from the PBC Foundation. It seems that in my case that whilst I remain relatively well and when I do complain of other things like the itch it is within her knowledge base to help me. I deal with my own dry eyes and when I get my "funny head" a sort of spinning I rest more and wait for that episode to pass. As to the odd sensation in my legs I just put up with it, I am trying to do more exercise within the bounds of the fatigue and follow the Foundation's lead on that recommendation.

    I hope you find a way through the mire. Best wishes

  • I understand your frustration. I'm a similar weight to you half stone lighter maybe and I take 1000mgs daily. I was on 1250 when I was a bit heavier with no ill effects. You know you can change consultants if not happy with your care, might be worth enquiring about

    Take care 😊

  • If your GP is sympathetic, ask to be referred to someone else - maybe in another hospital - preferably (as Butterfly has said) a hepatologist. I recently saw one of the leading PBC specialists. It involved going up to Birmingham from the SW, as I did not want to go back to the consultant who had given me a diagnosis that does not 'formally' exist.

    [Nb long story: I do not - formally /officially - have PBC, as I only test +ve for AMAs, but liver tests always perfect and no symptoms. So, after seeing the 'top man' I'm now back to, not having PBC and I just have to have liver tests every year, and tell insurers - etc. - that I just have AMAs ... So, if my GP will do this for me, and I don't really have PBC, then you should get to see a consultant who knows more of PBC].

    I didn't have to go private, my GP just referred me - it is your right. It was also interesting as the consultant wants to do a scan - just to check, as I have not had a proper one for quite a while. So again, if he's doing that for me, then you - who do actually have PBC - should get better care.

    I hope you get sorted, soon.

  • Yes, I asked my GP to refer me to QE Hospital Birmingham earlier this year and I live in Suffolk. So pleased I made that decision and I now see Dr Gideon Hirschfield, one of the best consultant hepatologists in the UK who specialises in PBC. He immediately upped my dose of urso and arranged for a fibroscan. I'm back to see him Monday for my results. My experience of the QE Hospital is that it is ultra efficient and my appontments have been on time with no delays. Very impressed and relieved as I'm now getting the best possible care. If the disease does progress into something more problematic or serious then I'm already being treated by a Hepatology centre of excellence. If you can travel, then its well worth the 334 miles round trip for peace of mind.

  • Hello cazz22.

    Thinking about your posting, it could well be that because your bloods are now within a normal range a doctor is unreluctant to 'rock the boat' so-to-speak. Might be that the doctor will continue to monitor you for any changes and then in that event start to give you an increase in the urso.

    I have read that certain changes in blood work can be a pointer for things like cancer and I think it's one that is in the full blood count. But I cannot say for certain as I am no doctor obviously.

    I haven't got normal blood results, haven't since starting urso back in Dec 2010 although they have come down over time. I weighed around 8 pounds heavier in the year I started itching (2010) and have dropped slightly but I put that down to the fact that with itching during the night I am more than likely bruning off additional calories that way now. I don't think much about calories, just take a brief note of fat content more than anything as I've never really had a diet high in fat pre-itching and since and not had a frequent diet consisting on fast fried foods.

    I did read on the site's newsletter that PBC patients are recommended to have between 13 and 15mgs per kg body weight but since I was diagnosed I've not been on this, I was started on 10mgs and that is what my supposed current dose is but given I know my own weight better (I've never been weighed since I was diagnosed but then again nor have I had my blood pressure taken much since either and I am now 51), I would state I am on around 12mgs per kg body weight as a more true picture.

    The only thing you can do is if you are not happy with who you are seeing in hospital then ask to see another doctor for his/her opinion. Doctors and their opinions can vary greatly from one to another and we all know how curious doctors can be and how some have one idea with regards to how to treat a patient and it can vary with another.

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