worried - repeat fibroscan from 6 mont... - British Liver Trust

British Liver Trust
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worried - repeat fibroscan from 6 months ago is worse!!

trythis2ok
trythis2ok

Hello folks, I'm very worried. I had a fibroscan done 6 months ago, and it was repeated just last week. The kPa went from 5.4 to 7.5, the Cap went from 328 to 306. My fibrosis score went from 1 to 2. I have lost weight, have been exercising more, trying to eat healthy, but it's hard with the nausea. My liver enzymes have returned to normal. They were elevated while I was in the hospital for atrial fibrillation, but have returned to normal. I just have this sick sense that I won't be around in 2020. I don't want to leave my little dogs, and I'm worried. I'm 68 years old, so guess we can't hang around forever. I was just surprised that my scan worsened when I have tried so hard to do what my liver doctor has told me to do. I do not drink at all now, but I am a carrier of hemachromatosis which can effect the liver big time. Does anyone had experience with perhaps the reversal of stage 2 fibrosis?? Any recommendations??

41 Replies
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Wow don't stress so much please!!

I am post transplant and my kpa score is 24 just Carry on eating healthy and exercising and it will over time reverse... Believe me you will still be around in 2020 as far as your liver is concerned anyway x

Thanks Jojokarak, It is felt that I have NASH, and from what I understand, stage 2 fibrosis with NASH is not reversible, and will only progress to Cirrhosis. Thanks for your encouragement. As mentioned, I was just so upset that I tried so hard over the last 6 months and for it to be worse!! Congrats on your transplant. I have been told I'm not a candidate due to my heart issues, and the hemachromatosis (iron overload). That why I got myself so wound up!!! Thanks so much for your encouragement. The problem is that I'm a retired nurse of 46+ years and I know just enough to scare the bejesus out of myself:))) Thanks again.

It's totally reversible it's a normal score in this day and age with the amount of shit people eat I would be over the moon with your score x

And I know a few people with your condition and it doesn't always lead to transplant I know they do transfusions (correct me if I am wrong)

Even with my score so high my consultants are not worried at the moment and I have given up worrying I just do everything I can now to prevent and reverse the damage x

Enjoy every day none of us know when our time is up and I am certainly not going to waste it xx 😘

Thanks!!! I don't know about transfusions. I'm not even a candidate for clinical trials because of the darn hemachromatosis!! thanks for your encouragement and support!!! I've been a mess over this, and I guess it's a matter of getting used to this diagnosis, too. UGH!!! Thanks again.

No worries I know it's shit when you're in no man's land and you don't know which way to turn, but things will work out x

And yes I know they can take blood out of you to remove the iron overload and then give you a transfusion with "normal" blood so it seems you are not even near that situation if it's not even been mentioned so I would take that as a positive as well 😁

Hi Jojo, the problem is that I'm on a blood thinner, so they can't take my blood. I'm often anemic. I'm kind of complicated, but yes, you are right. They can bring down ferritin levels by phlebotomies, but I can't do it. I have this pain in my left lower abdomen now that I haven't had. It's always something.

Do you take vemlidy ? Want to know if s good

I don't x

Hidden
Hidden
in reply to jojokarak

Nor me...

Hidden
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There are alot of things that influence kpa on fibroscans. Ive had my fibroscan scores fluctuate by 22kpa from one scan to the next downward. Just because it indicates an F2 doesnt mean you actually are F2.My cap score is S0 yet I have moderate fatty liver on ultrasound. Dont be surprised if it fluctuates back down on your next scan

trythis2ok
trythis2ok
in reply to Hidden

Thanks so much. I've been so worried. I didn't know about the fluctuation factor!!!

Hidden
Hidden
in reply to trythis2ok

The key to fibroscan score is when it stays constant over a period of time.

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Hi trythis

Apart from the nausea how do you feel? If not too bad just go out there (wherever there is) and enjoy life. You’re doing all the sensible things, and, as an ex nurse, you’ll know that stressing out about things will only make you feel worse!

Just take note please of what jojo and phoenix say and try not to think about things too much (yes I know it’s hard but I’ve been there - not exactly with your symptoms but with others). I wish doctors wouldn’t give data values for this and that. I went 4 years with no-one giving me ay numbers at all thank god. i’ve seen so many people on here stressing about this number and that number and it makes no difference to the outcome providing you do everything you can to look after yourself.

Anyway enough of me spouting on - good luck and enjoy yourself - and keep on looking after your dogs - I do 😁

Miles

🇧🇧

trythis2ok
trythis2ok
in reply to Hidden

God bless you!!! I do overthink things and as a nurse of 46+ years, I know just enough to scare the crap out of myself:)))) Thanks for your encouragement. I have to just settle myself down and enjoy my dogs, my parrots and my hedgehog!!!

Hidden
Hidden
in reply to trythis2ok

Goodo trythis

Does that nickname come from your nursing days? Just trytry this it’ll make you better 😁

Have you filled in the source of your nickname on Brett11s post dedicated to nickname origins? It’s fun and it’s typically Brett 😁

Miles

Ruthie2
Ruthie2
in reply to Hidden

Actually it does. Having been a psychiatric ER nurse with Hopkins, I had to come up with a lot of different ideas to help people decrease their anxiety, help with depression. I miss my patient's so much. It was difficult to retire, but I'm enjoying my 3 dogs, 3 parrots and my hedgehog. It's supposed to snow this weekend, so I can lounge in bed and not worry about getting out to scrape my car off of ice and snow.:))) One can get used to retirement real fast:)))))

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in reply to Ruthie2

Hi ruthie2 trythis2ok how come thename change? As a master of name changes I spot these things 😁. I think the hedgehog gave you away 😁

Milo

Ruthie2
Ruthie2
in reply to Hidden

Milo, I don't know how in the heck it got changed. In the US we had a health unlocked forum that I did not like as well and I was ruthie2 there. I would like to get my name changed back, For some reason, it got changed and I don't know how!!! I'm glad you figured it out!!! Hope you are well. I like the trythis2ok better. I'm getting another hedgehog that needs a home and then that is IT. no more pets!! But I don't have kids so they keep me busy. You would make a good detective!!! Good pick up!!! hehehe.

Hidden
Hidden
in reply to Ruthie2

Hi again 😁

Your ruthie profile stems from 2 years ago but your trythis profile from around 18 days ago. Did you use the same email address?

I expect someone like Trust1 could help you sort it out?

Miles

Ruthie2
Ruthie2
in reply to Hidden

Yes, I use the same email, but this is the Liver trust forum right?? I'll try to reach trust1. thanks, too funny!!! How are you feeling??

Hidden
Hidden
in reply to Ruthie2

Ruthie this is indeeed the liver forum. Ah yes you are a good detective too - or is that two😁. Lol.

Hopefully Trust1 will see her name mentioned...

I am incredibly well with respect to liver trasplant thank you. I hope you get some resolution on your issues soon!

Miles

Ruthie2
Ruthie2
in reply to Hidden

I changed it back. I just got my first iPhone and I am not computer savvy and I'm proud of myself. I did it myself!!! So I'm back to my trythis2ok:)))) Thanks for bringing it to my attention.

Ruthie2
Ruthie2
in reply to Hidden

Well, I thought I changed it back, but it's still coming up with the other name and I don't know if trust 1 got the message. I have quite a bit of abd pain and i'm seeing the liver/GI next week. that's new for me. I have NO appetite, but the remeron has really helped with that. I do have to exercise more but have to see my cardiologist to see when the TEE and cardio version will be done. That scares me. i used to assist with them and they do feel the shocks!! Butthey're quick. Well,, back to watching the Big bank theory with my dogs. The parrots are asleep and the hedgehog is grumpy tonight:)))

Hidden
Hidden
in reply to Ruthie2

Ruthie what time is it there? It’s 0445 here. Awake every hour tonight for some reason ☹️

I’m afraid I don’t understand a lot of the medical terminology you just put in your post, but it all sounds a nuisance ☹️.

PS how do you know a hedgehog is grumpy? 😁

Miles

Ruthie2
Ruthie2
in reply to Hidden

It's mostly cardiac stuff. The TEE is where they put a camera down your throat and are able to look all around the heart. They want to see if the blood clot in my heart has absorbed. If it has they will put the paddles on my chest and shock me (cardioversion) and see if they can shock my heart out of atrial fibrillation and back to normal sinus rhythm. They don't think it will work. My hedgehog "huffs" if he's grumpy. It funny, but he's not happy. They are nocturnal critters. hope all is well.

Hidden
Hidden
in reply to Ruthie2

Perhaps he’s huffing in sympathy Ruthie? 😁

Milo

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Hidden
in reply to Hidden

Miles is right. Though I myself do study alot of liver related stuff. (Partly because I just find it fascinating) you dont want to get caught up to much in number chasing. Especially when number fluctuations are very small. It can drive a person mad to see an Ast or Alt go up and down a few numbers and wonder what it means all the time. Some of these numbers an change on a test in the afternoon from a test done in the morning. Also some bloods take time to reflect liver status. Sometimes what you see on a blood test can be a reflection of a liver state of 2 months ago. If you were seeing huge number jumps than I can understand but if that happened your doctor would address it and even then huge number jumps dont always mean doom.

Ruthie2
Ruthie2
in reply to Hidden

Yeah, i think I have to get used to the fact that numbers do fluctuate. But, being a nurse I'm kind of lab oriented. But, since I'm retired now, I'll try to relax on that. All of your advice is so helpful!!

It seems strange that they repeated your fibroscan so soon after the first. It may be that your first one wasn’t that successful. Mine was only 75% successful, so they’re going to repeat it again a year on. So that could be why your results are different. Of course it could be something entirely different as well. Best of luck to you.

trythis2ok
trythis2ok
in reply to Julie8

Thanks so much. I think they want to keep an eye on it closer in that I have hemachromatosis, fatty liver, and falling platelets, increased ferritin levels and I think those factors increase the worsening of the liver. I'm complicated of course:)))

I have had similar experience with fibroscan showing deteriation, but my consultant doesn’t seem to be to bothered, am now awaiting result of biopsy. I actually don’t feel any different, so I just wonder how accurate the test is?

One other coincidence, is that I also have atrial fibrillation & take rivaroxaban20mg daily,what do you take?

Hello, thanks for your response. I think they are going to do a liver biopsy on me next. I was on Eliquis, but I found it was too expensive and my nose was bleeding quite a bit. I had to go off of it for awhile and damn if I didn't get a blood clot in my left atrium of my heart. I have to go for a TEE and they will try to cardiovert me after that if the clot has been absorbed. The cardiologist doesn't feel it will work as I had a mitral valve repair in 2003. I am not a candidate for an ablation. I don't feel my a fib at all, so it's not bothersome to me. I think he wants to control the rate. I am now on Warfarin 5 mg's daily. I have to have my INR checked every 10 days or so, but my warfarin is $4.80 versus over $100 for my Eliquis and that was with insurance. I have lower abdominal pain, and severe bouts of nausea from time to time. I don't have the nose bleeds with the warfarin like I did with Eliquis. Plus, as you probably know, there is no antidote for Eliquis, Pradaxa, etc. Warfarin has an antidote, Vitamin K. i.e. if you're ever in a car accident, or fall and hit your head on the other meds, you're somewhat screwed - no antidote. I hear that there is an MR elastography that can be done which is more accurate than the fibroscan. Good luck to you.

PS again like you I have never been a heavy drinker & nothing for some years.

Yeah, it's frustrating. there are so many causes of fatty liver and fibrosis. I did do my fair share of drinking in my 20's and 30's, but my doctor thinks that the fatty liver, hemachromatosis, have a lot to do with it. I see a hematologist as well. He monitors the hemachromatosis. And, of course, the liver can cause all sorts of problems, like cardiac issues which I have. JimmyJackson, how bad was the liver biopsy to have done. I'm sure I'll have to go off the blood thinner before they do it. That scares me as I've thrown 3 clots in my life time and still have a clot in my left atrium of my heart. I often think if it's worth getting a liver biopsy as I'm not a candidate for a liver transplant. Why stress me out further by this test. I don't know.

I had no problem with coming off blood thinner for 3 days & as for the biopsy it was painless, have had worse at the dentist. still await result tho

Great. That's good news to me. A friend of mine had a liver biopsy and said it was awful. i think a lot of it is the anticipation of it.

I know this threads a couple of weeks old but my opinion would be to consider if having a biopsy would make any differance to my treatment!

My nephrologist wants to do a liver biopsy next. My feeling is that a liver biopsy is nothing to be taken lightly at all. Then you have to hope that the small sample biopsied actually hits an area that shows damage so that you get good results from the biopsy. Furthermore, I know I am not a candidate for a liver transplant, so what is the biopsy really going to do for me?? Nothing. If you're young and have a relatively healthy body other than your liver then I believe a biopsy is almost required before they will even do a liver transplant. I may be wrong on that. Liver biopsies are not to be taken lightly at all, and if one does have it done, they better have someone who is very experienced at doing it. I'm hoping that within the next year or so some other non invasive test other than the MRE or fibroscan will become available.

Hi what medicine doctor gave u for the liver,?

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