Finally got my letter from the consult... - British Liver Trust

British Liver Trust
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Finally got my letter from the consultant.

Mummymoors85
Mummymoors85
19 Replies

Hello to all. I haven't been dignosed with anything. Why I'm not actually sure. So I've been coming back here for help and now I have alittle more info. 

I have episodes where I land up in hospital really sick about once a year. In this time my liver results are :

Alt 500

Alp 500

Bilirubin 40

I have massive headaches and then sepsis takes hold. After strong antibiotics and 2 weeks in hospital I come out rest at home. After a month everything settles and goes bk to normal. 

The gastroenterologist cannot justify a biopsy as on paper I'm currently well. 

Tho I currently itch all the time (to the point I make myself bleed) I'm now on steroids to try and control it! 

Can anyone else relate or help on what I should do? Have 2 little boys and can't afford another 2 weeks in hospital. I hate the not knowing but fear this is going to be the on going case for me. 

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RodeoJoe

Have you had an ultrasound? Are your blood test results currently as above? If so I would call that grounds to have a biopsy.

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Mummymoors85

Hi Ive had a ultrasound when poorly and the liver is swallow and I've had one while well and it's normal. Bloods are currently normal but they go up and down like a yo yo. 

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Bolly

That's a tricky one.  If they cant find anything clinical to treat, they cant treat.  If short courses of steroids help that might be the way to go.  Can you have your bloods monitored, say, monthly to spot the next elevation before it gets to be a problem.

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Mummymoors85
Mummymoors85
in reply to Bolly

Steroids is just to stop the itching just a short course. They can only justify have blood test every time I'm showing symptoms problem is the symptoms are flu like symptoms and that happens regularly. they will only do a biopsy if I go yellow again (and I really don't want to go that way again)

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Auds5

Hi Mummymoors85

I've been diagnosed with a Non-Alcoholic Autoimmune Liver Disease so have been used to getting bloods tested over a couple of years and seeing those blood rise each month.  Now Im not a Doctor or have any medical training, but to me the levels you mentioned are very high.  From my understanding the normal range for Bilirubin is 2-21 and for ALT's is 5-33.  As for the ALP you mentioned I'm not sure what the normal range is as my consultant never explained those to me.

You mentioned that you are seeing a Gastroenterologist and they wont justify a biopsy because you are currently well.  My suggestion would be to get your bloods monitored either fortnightly or monthly depending on what your GP agrees to.  The reason I suggest this is because thats what I had to do.  Then when the Consultant seen my rising bloods, other procedures were done which included a biopsy.  I was then referred to a Hepatologist who had the evidence of the high LFT's  and the other procedures and he gave me a diagnosis.

I too have experienced that awful itch which drives you crazy to distraction. My Family were so fed up watching me scratching until I bled. 

I hope my experience is of help to you so that you can move forward in getting some answers.

Auds5

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Mummymoors85
Mummymoors85
in reply to Auds5

Hi auds5 thank you for your reply. 

I feel like I'm being fobbed off to be honest. The dr said there is no point having the blood test done because really the next stage is the biopsy and if that is not going to be done till I get really sick again then I'm just going to have to wait! 

The consultant did say that when they reached the levels the liver actual shutdown at that point which is way I get sepsis. 

The only thing that has been put on my notes that anytime I have an infection antibiotics must be prescribed and ideally through a drip! (To make it fast acting I assume) 

But that's it. I do get poorly quite often but it's mainly viral but as it's the same symptoms I'm thinking is it going to get worse or not. 

It's all alittle rubbish really. 

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Auds5
Auds5
in reply to Mummymoors85

To me it does sound like your being fobbed off but don't let that put you off. Ask for a second opinion.  It took me 6 years from my first GP visit until diagnosis.  At times I felt like all my symptoms were in my head but thankfully my new GP reassured me that my bloods were not normal and something was wrong. 

I actually felt relieved to get a diagnosis - not because I have the disease but because I could finally say what was wrong with me. So I understand your frustration about not knowing.

Hang on in there,  keep asking and pushing for what the next procedure is. Pray you get answers soon.

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Mummymoors85
Mummymoors85
in reply to Auds5

That's exactly what I feel. 

Getting the yes your bloods are bad but hey there is no condition for it! 

To be fair my bloods have always been all over the place but been to young to worry now I'm older and have 2 boys to look after and as I get older u feel worse and the episodes are more frequent so something has got to be done! 

Problem with getting the bloods done is when I'm feeling poorly it takes nearly a week and by the time that happens I start to feel better so bloods are probably starting to return to normal  so I'm never going to get a true picture of what's going on. 

 

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Bolly

Perhaps they are looking at the wrong organ. Elevated ALT and elevated ALP levels can also indicate skeletal, muscle, bone and/or kidney problem.  Elevated Bilirubin can also indicate internal bleeding or bruising.

Bilirubin is excreted in the urine, so if your kidneys were not 100% I wonder if that would elevate the bilirubin?

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Catfishjumpin

I would find a second opinion. Those symptoms are dramatic and mean something. Personally, I would not be on steriods until I found out if I had liver disease. Best of luck.

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carmik

As I told the previous writer you need to see a hepatologist who deals totally with the liver.

We had a bad experience with a gastroenterologist.  Saw my hubby for 4 years and got nowhere. As soon as I demanded a hepatologist for a second opinion things moved.

Transplanted just over a year later!

Good luck

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Mummymoors85
Mummymoors85
in reply to carmik

We did have 3 at my hospital but they all left at once (which is why it took me 8 months for an appt) I think I will have to look at another hospital. Can I request that?? X 

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cazer

Think you have to demand some more tests it is unreasonable to leave you with no amswer.have they done antibody blood tests as this can maybe show  something.

Is ut a particular time of year that this flares up...maybe it would be worth keepomg a food/activity diary and see if theres a pattern...just a thought.do you have any other health issues?best wishes ca zer.

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cazer

The itch i get with pbc but my levels  were stableish until 6months ago higher than normal but still stable and i was having 3/6month blood test and ultrasound as routine.

Things like pancreatitus gallstones etc can also cause jaundice.

The more i think about it the more you have to demand a thorough investigation.this is just nnot acceptable...sepsis is serious and jaundice  so nag nag nag..keep going back to gp and say you have to know whats going on!!!

What they are telling you aboit the biopsy i dont think is right..i was under the impression that lots of conditions  that would show in a biopsy the changes would be permenant unless it was  caused by something that can be removed..e.g alcohol

So.assuming that is not the case then the argument that you can only have a biopsy when you symptoms are bad doesnt make any sense!!!

I would goggle biopsys and see if you can find out more.

One other thought if you have other probs e.g joint pain  then perhaps you could go to aphysio clinic...they can sometimes refer sideways  if they feel more investigations are needed.

Also write  a letter to your gp explain that you need answers and are left in limbo with small children

I wrote a letter for my mum and suprise after a year of being ignorred and phobbed off she git an almost immediate appt with orthopedic dept(prob with leg)

Time has come to be tough and demand your rights.know its hard but if it did turn out to be for instance pbc there are treatments you should have been having

Chin up.cazer

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Mummymoors85
Mummymoors85
in reply to cazer

Hi cazer. The ut is all year round has been like that over 4 years now. No rhyme or reason. Different times of the day. I don't think it's food as I have it every day but I finally got it through to the dr on Friday so sending me to have an allergy test but could take 6 months. But the consultant reckons it's the liver causing it. 

I had my gallbladder removed. Which the consultant thought this was the reason but after looking at the ultrasound that all looks normal. 

He did say that my liver is hypersensitive to my antibodies and sepsis. Which apparently is rare. But that's all he left me with 😕

Other than the itching and very tired all the time I'm otherwise well. I will try a letter see if this helps. Thank you. 

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cazer

Unfortunately  thimk the doc is still barking up the wrong tree.. for most of us   with pbc it is not allergies but autoimmune antibodies which are the cause of the damage  to the liver.allergies are a completely   different.

Im baffled as to what your gp and consult are up to!!!!certain antibodies can indicate different diseases so its not that hard for them to work out...if its non of these then he should b looking at different organs.

Sorry to keep on but demand to see a hepatologist..

Not a gastro.

What do you think bolly? You are usually a wealth of knowledge.otherwise ring the liver trust.cazer

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cazer

Try reading ama bloodwork posting

Very onformative

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Mummymoors85
Mummymoors85
in reply to cazer

What is ama bloodwork?? Sorry may be a silly question but not use to these abbreviations 😀

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cazer

Theres a posting on here called ama bloodwork.

Ama is anti mitochondrial antibodies they are one of the rogue antibodies which dont fight disease but fight our own bodies in this instance liver ducts this then eventually causes scarring.

If you google autoimmune diseases there are a lot e.g rheumatoid arthritus m.s etc etc

Hope this gives you a bit more info.cazer

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