Is biopsy worth the risk?

[Amethyst91]

I finally got a dr to approve a liver biopsy due to him thinking possible autoimmune hepatitis. They have been put off with biopsy due to the risks and my enzymes not being over 100 for too long. I am worried there is really something more than fatty liver but I don’t want to do unnecessary damage to myself. If this is autoimmune hepatitis I’d like to know earlier than later so I can hopefully prevent further damage. Would anyone like to share biopsy stories and opinions? Is it worth it or should I wait for things to get worse?

[cammeag]

Biopsy’s are fine. Like any surgical procedure, they are only as good as the person carrying them out. Knowledge is power! Isn’t that the saying. Never avoid knowing everything, only then are you in a position to plan the best way forward. Hope all goes well

[Amethyst91 in reply to cammeag]

Thank you. I hope your are doing well since last time we spoke. I do believe knowledge is power and even if this is not reversible I’d like to know as much about my condition and how to properly care for myself for best outcome. My drs are hesitant because of the risks but I feel like I’ve read so many things on here where ppl managed pretty well with a biopsy. I know it’s not ideal and I’m not really about the needle thing but if it can help give me answers then I’m willing to do it. Have you had one before and how long is recovery usually?

[cammeag in reply to Amethyst91]

Hi Anethyst, I’m a leaky roof, I cannot remember our last conversation.If the doctors are worried about the biopsy causing problems, is it because of the blood?

Have they ever said you can never have one?

When I was really sick I know I could not have one due to the risks, so maybe it is the same situation for you. I do know complications can come from them but on the whole most people who have them are not quite as far along the road as we are.

Can you remind me of everything that you are suffering with? If you like you can be in myself.

Again, I truly hope you keep going and you are okay, take care.

[Amethyst91 in reply to cammeag]

To be honest I’m still in the beginning of this mess. They say my blood work looks good and I think they are honestly just trying to avoid it as my imaging is not very obvious as to what’s going on with me. I’ve had and enlarged liver diagnosed in May and even my diets and lifestyle change hasn’t helped anything. If this does detect something I believe it might be a form of early autoimmune type condition or very small scaring caused by my old lifestyle (drinking way too much). I do have a couple autoimmune conditions so having a liver one isn’t too far off though I’m hoping that and cirrhosis are not the case. I do know my symptoms are caused by the liver and something is going on with it. I know if worse than fatty liver I have no hope of fixing it but maybe the more I know about my condition then the more I can teach myself how to care for myself as I’m still very young and want to keep going for at least another 30 years. They only have mild evidence of liver disturbance and that’s why they are not pushing for a biopsy as far as they have told me. So with that I am nervous about pushing for something and having it go all wrong but at the same time I’m not improving and I’m feeling myself get worse with each passing month. Mostly fatigue, yellow pale stools, itching, mild skin rashes, nausea, constipation, indigestion a lot but mostly the upper right quadrant pain from my liver growing and pushing on my skeletal structure.

I will also admit I do have a tendency to panic which was probably our last conversation and I apologize. I know you have been recovering for a while and hope it’s getting better.

[cammeag in reply to Amethyst91]

😂 and that last text I meant to say you can PM me but it came out as you can be in myself😱 The moral of that is never use voice recognition😉.

Those different symptoms you mentioned can be the start of liver disease so I would never rule that out. But if things were really bad you would start to gain fluid, your eyes would go a little yellow and your appetite practically vanishes. The liver is such a little fickle creature that we could have 100 things wrong with us and it would still keep plodding on.

I know it is easy to say, but worrying and overthinking do exacerbate our problems though I would never say your imagining your problems, I know your not.

I can never blame anyone for what happened to me except myself but...... The doctors I saw prior to liver failure never tried to explain exactly what they thought was wrong with me and why. They just prescribed me vitamins and told me to watch my drinking. Even when I came out of hospital after liver failure he prescribed me drugs that nearly led me to suicide.

My present Dr really does know all about liver problems and she takes the time to sit me down and explain to me what is happening and where I can make it better. Most importantly, she shows me respect and treats me as a grown up. Maybe it is time to sit down with your doctor and really try to hammer home all your problems, write them down if you have to, but the point is to get them to understand what you really want from them and if they cannot give you that then tell them you need to look for another doctor.

There is nothing worse than being talked to like a two-year-old and so many of them do although my current doctor is an exception. I am so very sorry but I do not have any solutions really, except to do what I said with the doctor. Maybe someone on here will explain it better... After all, the alcohol has probably shrunk my brain to the size of a tennis ball😋.

[Amethyst91 in reply to cammeag]

I do very much so believe I’m at the beginning or hopefully at most the beginning of liver issues. I’m hoping if I can get a better picture of it and understand it then I’ll be able to really take this on and hopefully get myself to a good point. As of now I have no scarring they can see on imaging but I definitely feel my liver is congested and if I can have that proof then maybe I’ll get other drs to stop trying to prescribe me things that will harm me or put me through procedures that will cause problems. They already killed my thyroid because they thought that was my problem because all them said it couldn’t possibly be my liver. That procedure was a mistake and now I will have life long consequences. Another dr thinks it’s my gallbladder and thinks I can have it removed but I truly believe it’s my liver. I sadly have the poor alcohol history to prove that. I think I will continue with a biopsy though I am scared of both a complication or going through it and then missing it still. Obviously if they find nothing I will be happy and hopeful that I can fix this but if there’s more damage then I need to know. They just don’t feel it’s necessary and they all talk to me like I’m a child. I felt my body change 5 yrs ago when they told me I had Ibs c because they couldn’t find anything and every year I checked on my liver to be sure it wasn’t my liver but I honestly think it’s been my liver this whole time but it’s just not easy to detect.

[Healthnut22]

Glad you were able to get in to see a doctor. Were you able to discuss the MRI results with them and see what they thought of the portal vein issue? Obviously you still haven’t gotten to the bottom of things yet, but try to take comfort in the fact that the doctors haven’t seen anything that concerns them tremendously. That is hopefully a good sign that whatever it is can be treated, reversed, etc.

[Amethyst91 in reply to Healthnut22]

He hasn’t gone over it with me but his office called me after my appointment with my gastro this morning and I guess they both agreed to give me this procedure, most likely to shut me up. I really hope it goes well and it does allow me to shut up and fix this but I feel like I’m right on this one and they are very under thinking it.

[Hidden]

Hi Ametgyst91I had liver biopsy 7 years ago and although it ain’t a trip to the park it was all done very professionally and I was looked after extremely well. The chances of one going wrong are very slim but it is classed as invasive , they wouldn’t just do one without the need for it. If they want you to have it, then have it, you will be most probably out the same day. Have the doctors put you on any medication for AIH? Sometimes AIH can be diagnosed with bloods, the change with immune suppressants and the necessary scans .

[Amethyst91 in reply to Hidden]

Thank you.

No one has started me due to it being very weak potential positives. If I have anything I feel like I’m catching it in the beginning or at least I hope beginning if that’s the case. So many things come out somewhat ok that if it weren’t for my symptoms I wouldn’t be chasing this so hard. Although my enlargement is still worrisome without the symptoms. I’m told by a couple drs that I could just be a very symptomatic person with fatty liver while majorly don’t have symptoms until it’s very late stage. Whatever this is I know o need to be on top of it.

I hope your condition is ok and at least being well managed, I know liver problems usually just fall into manageable most of the time. Did they find what they needed to with that biopsy? They have also warned me about possibly not getting the right samples after doing all that work.

[Hidden in reply to Amethyst91]

I was diagnosed at the time with PBC then later I was diagnosed with AIH as well. If your bloods are not bad and scans not showing then I would go with what doctors are advising. If it is causing you great anxiety then maybe for peace of mind push for biopsy.

[Blackcat26]

Good morning, I’m sorry you’re going through all this it’s awful. I just read your post and thought I’ve got to show my support. I’m recently diagnosed with PBC after years of investigation (and they thought I had fatty liver too) and including 2 biopsy’s. You’re awake throughout, it’s a painful in your right shoulder after the procedure and you stay in for the day while they monitor you. After at home just take it easy for a few days but I didn’t have any affects from the biopsy. I would say though the reason I had 2 biopsy’s is the first one they didn’t take a big enough sample. The second biopsy he took two pieces as I was happy for him to make sure they got enough. A sample looks like a piece of saffron if you imagine it’s a little red thin piece. Having the biopsy lead to my diagnosis and now I’m on tablets stopping my liver progressing further and in my opinion I think the biopsy risk was far more minimal (Altho still has risks) than the risk of leaving me undiagnosed and my liver getting worse. It is such a scary thing we’re all going through and you’ll make the right decision for you. I wish you all the best and stay safe

[Amethyst91]

Thank you. I’ve had suspicions of it since I started all this back in May but most drs ignore it due to the lab work still being technically under the positive mark. My SMA was 9 in August then I got a repeat with another test they did and it moved to 14 while the cutoff on the lab report I have says 19 and they if it’s under then why worry. My worry is that my TPO for thyroiditis was 34 and the cut was 35 in 2019 so I was told this year that hashimotos had been ruled out already so I had hyperthyroidism and if I wanted to treat it then radioiodine was the thing I needed. I asked about retesting and they said no need. I saw a rheumatologist for another reason after the treatment who ran the TPO as just part of his test and this October it came back at 270 which I pretty high and definitely positive for hashimotos that I was supposed to not have. So now my body took unnecessary radiation and I will live with that forever. I guess that’s why I’m not trusting those SMAs changing in the months I had them done. Also had mitochondrial antibodies tested with the SMAs and the mitochondrial ones came back <20.0 which is negative but kinda in the line negative as the report reads 0.0-20.0 negative, 20.1-24.9 equivocal, and >24.9 positive. So still negative but I’m just not completely convinced after what I’ve already seen happen to me. I hope I’m wrong and the drs are right but best way to be sure is to do the test.

Thank you all so much for sharing your experiences with me. I feel like the drs keep talking it up to be scary in an attempt to make me feel like I don’t need it but I’d rather know than unknowingly damage myself more since I’m not getting better under current recommendations and guidance.

[Partner20 in reply to Amethyst91]

I do hope you are receiving medication now that you are hypothyroid following RAI. Many people have TPO antibodies in the hundreds and thousands, but it does not signify anything other than you have Hashimoto's or Graves. However, you will always have antibodies and the condition that is causing them. Hyperthyroidism does not rely on antibody testing, neither does hypothyroidism, it just gives a fuller picture. As you are hypo, I trust you are getting regular tsh, FT4 and FT3 checks, to ensure the dosage of your meds is correct. Hypothyroidism has many symptoms in common with other conditions, so it is important that your levels are optimal, to rule out hypo as the cause. If a liver biopsy will give you peace of mind, and the doctors will gain useful information from it, although it is not the most pleasant of procedures, and not always definitive, then do what you think is best for you. Hope all goes well.

[Amethyst91 in reply to Partner20]

Yes i have been getting my levels checked ever since and in October they went from still being on the hyper side shooting across to hypo. I think my Tsh went from just slightly out of range on the hyper side all they to 30.800 in three weeks. I’m definitely now suffering from more issues but the one I went in for never got resolved as far as liver goes. My current meds are 100 of the levo and twice a day I take 5mcg of t3 to keep the insane body arthritis like pain away. My constipation is awful no matter how strong a laxative I take so I’m definitely struggling with the new hypo but my liver pains continue and are definitely my biggest concern since there’s help for the thyroid but not much help for liver.

[Partner20 in reply to Amethyst91]

Glad that your thyroid levels are being monitored.🙂 You are one of the fortunate ones to get T3 prescribed, so many of your symptoms could have been due to previous low FT3, I assume. Body pains can be horrendous, hopefully your vitamin and mineral levels are good, as both hypothyroidism and liver issues can impair them. Yes, liver issues can be complicated, as there sometimes seems to be no scan or test that can give a definitive answer. Worrying, too, can cause stress which impacts on both general health and the thyroid. It's easy to say don't worry, though, as that can be hard to do! My partner had a liver biopsy a few months ago, when three samples were taken, all from suspicious-looking areas, but they provided no answers. All his tests are now being run again by a new consultant, with results sent to KCH in London for evaluation as he is an odd case!! Let's hope that you will get some answers to put your mind at rest.

[Frananncru]

Good morning , I was strongly advised by my consultant to have a liver biopsy , having been diagnosed with NASH ,I was told that liver biopsy is the “Gold Standard “ for proper diagnosis and staging .The procedure it’s self was uncomfortable but over quickly. Was allowed home after 4 or 5 hours and was back to normal after 48 hours.I went on to have endoscopy to see if I had developed any oesophageal varices (which I now know I have) .I’m on no real treatment , just a single medication Carvidalol to reduce the pressure in the oesophageal varices to try to minimise the risk of them bleeding .

I guess no two patients are the same ,I am confident in the consultant and his team , and have been made to feel involved and not pressured during the decision process.

I was diagnosed last year , I have to have annual bloods and ultrasound scan ,along with possible further endoscopy every 2-3 years .

It goes without saying I have not had any alcohol since the suggestion of liver disease was given almost 2 years ago , I try to eat well , take moderate exercise . Hopefully I can slow any deterioration down .

We are all on our own journeys but it helps to know that through this group it’s clear we are not on our own .

Merry Christmas

[hells456]

Repeated bloodwork, ultrasound and MRI hasn't reassured you, so if a biopsy is what you need go ahead, the risks and discomfort are there but are minimal.

[Kristian]

Biopsies are fine. I've had a few. Yes there are risks, but they are very very small. Not something I'd particularly fret about.

[Hidden]

I can see our forum members are sharing their experienes. I have added a link to our information on liver biopsy.

britishlivertrust.org.uk/in...

Trust9

[AmericanDemocrat]

Hi, Amethyst - If your doctors have agreed to give you a liver biopsy, I would not pass up that opportunity. As you know, it is often hard to get biopsy approval, so your doctors obviously feel okay about it. I had a biopsy two years ago, and to my surprise and delight, my original Dx of Stage 4 liver disease (cirrhosis) was downgraded to Stage 1-2 (very mild fibrosis). I think knowledge is power and as you mentioned, your future care in all areas of health should be adjusted if it is AI. Plus, I think it can often help us change behaviors if we know exactly what we are dealing with. Good luck and I hope all goes well for you!