Can anyone help me. I want to change consultant as I feel I am not getting the right care. I live in Peterborough so if anyone knows of good consultants please can you let me know. I'm at my wits end I have cirrhosis of the liver with a fibroscan score of 68.1 also have portal hypertension and enlarged spleen. That is all I know of my condition nobody has explained anything except don't drink alcohol I am blue in the face telling her I don't drink any alcohol and haven't for years and when I did it was once in a blue moon as I had a young family and working full time.
Thanks for listening x
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l13d
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How far from Peterborough are you prepared to travel, and looking at your other thread do you want a hepatologist who specialises in PBC which is what people on your other thread thought might be your diagnosis?
Hi there, sounds to me that you need to seek the advice of your hepatologist at P, borough. If they don't believe your not drinking then offer them a urine sample or blood to check. If your having blood tests then they will know anyway what's in your blood. I would want answers,straight answers. Where was your last hospital before P, borough. I've been at same hospital for year's so I couldn't recommend any consultant.But get the answers that you need.Its a serious illness.
Good luck. You outline your symptoms - your fibroscan is certainly high - mine is 'only' 27. Similarly I have portal hypertension (with NASH cirrhosis) , and an enlarged spleen. I opted many years ago to go to Kings in London, as at least i can get there on the train. My GP just referred me without question (I had been under the care of the local district genera l hospital until then). However protocols for referring do alter over time . I should think Addenbrookes is accessible for you distance wise- but not by public transport. ? I agree 100% about the labeling - I am tee-total yet people assume that I drink or engage in other un-safe practices. (And i have always worked in a medical environment until retirement, so they should know better) . I find that I immediately go on the defensive and say that I do not drink alcohol (even many years ago, before my diagnosis I would have no more than a bottle of wine a month!). And none since about 1995. Getting back to your original query, you need to be looking at hospitals with dedicated hepatology departments - they are the experts.
Sorry for taking so long to thank you all for your help and advice.
I did have a word with my gp two days before my hospital appointment so we agreed that I should keep the appointment. Well I went fully prepared as to what I wanted to say but I was blindsided and I saw another person in stead which throw me.
Anyway I have another appointment next month . But in the meantime I have asked for my blood test results. Again I thought this was a simple request but no I've been given the wrong results, I've phoned the secretary and asked again for the results . No problem she say will send you them in the post and true to her word I received a letter from a consultant telling me there was no significant change since my last tests and they will see me on my next visit. Well I was back on the phone and told them they had got it all wrong I didn't want an opinion I wanted the actual results. So I wait with bated breath to see want I will receive through the post.
With a Fibroscan of 68 my guess is your blood test results will not be in normal range and if you have never seen your test results before they may be a bit scary.
Do you have any previous copies to compare these latest with? (Assuming you get paper copies).
The doctors will be able to see previous results for comparison, so my guess is they are looking not for 'normal' range results but stable results compared to previous. Which is what they mean by no significant change.
Thanks belly , yes I've managed to prize a couple out of my consultant, this is why she fell out with me. Thought I was questioning her judgment. I always get the run around when asking for them. My results liver test result are just within range either way . Some a little high. My gtt was 460 and another few where high ( I haven't got the papers in front of me)
I just want them so I am able to see any difference for myself.
Fingers crossed you get copies of the results sent to you. Yes GGT is very high, my lab's 'normal' range is 5-40 iu/L. I forget, have you been offered a biopsy to try and find the cause? Obviously alcohol is ruled out; have they ruled out viral hepatitis, autoimmune variants such as AIH, PBC, PSC, drug induced hepatitis (by that I mean prescribed meds taken long term such as certain antbiotics), NASH, NAFLD, Gallstones, Budd Chiari, Haemochromatosis, Gilberts, Wilsons.
Hi bolly, I haven't as yet got my results. Ill give it till Wednesday then I'm back on the phone. They haven't ruled out alcohol in fact I don't think that my consultant believes me when I tell her about my alcohol history. I haven't been prescribed any medication regarding my liver except vitamin d and iron tablets
Is the doctor basing the diagnosis on blood tests and medical history alone? I'm not sure how they can do that accurately, as there are many reasons why someones blood tests and liver function tests are out of normal range. I'm not clear why the doctors in your case are not testing for other forms of liver disease (ie all those ones I listed above will most likely have deranged blood results) I would expect them to rule out other causes of liver inflammation, such as viral, autoimmune etc etc, if the patient is clear they dont have a history of heavy alcohol use. A liver biopsy can diagnose different type of liver disease, including ALD, but it may be they are reluctant to do a biospy with your having such a high Fibroscan score, I dont know.
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