Frightened-Need Advice-Liver Disease and Transjugular Liver Biopsy

[Odie81]

I am in awe of this site and the wealth of information that is shared. I am from the states and have found nothing like the British Liver Trust. Thanks for all your posts and for all your efforts!

I have battled pain under my right/left ribs since my gallbladder was removed in 1992. I had an ERCP which put me in the hospital for 11 days with severe pancreatitis. There were no definite findings. It was suggested that my bile ducts might be too long and causing the problem. I had a variety of other scans/bloodwork over the years but nothing definite. I was later diagnosed with GERD and tried various meds. I am presently taking Dexilant. I continued to battle and deal with the pain the best I could for years while living life in the classroom with my students. I am a teacher and dearly love my job. However, due to my health, I am taking early retirement. I cry daily as I do not want to leave the job that I dearly love. I am discouraged and disheartened as I fight for wellness. I have changed my diet and am working on losing weight. However, I do get frustrated because at times that is the first things doctors bring up before they LISTEN to your story. As a teacher I gave 110% and truly cared. At times, I do not feel they are listening or taking me seriously.

I was diagnosed with AFIB, blockage, and small vessel disease about four years ago. However, they have not been able to replicate the AFIB on other tests, but I still take Eliquis. I also have diabetes and was recently put on a pump (Omnipod) and a Dexcom.

In October of 2020, I went to Mayo Clinic to try to find answers. I saw a variety of doctors (cardiologist, endocrinologist, internal medicine, GI, allergy, bariatric, etc.) over the course of ten days. I had a heart cath which showed 60% blockage. I ended up coming home because navigating the billing process and CPT codes were a bit overwhelming. They did not mention anything regarding my liver while I was there being evaluated.

In 2018, I visited the doc that did the ERCP for another opinion for the pain under my ribs. He referred me to a liver specialist that indicated I had fatty liver disease. He told me to diet and lose weight. At the time I was 6'3" and weighed 310 lbs. I am now 281 pounds and working on losing the weight. I think I have shrunk an inch. Due to other health conditions and the pandemic, I did not return to the liver doctor until a few weeks ago due to feeling unwell.

When I went a few weeks ago to see him again, a student examined me and then shared with the doctor. I shared the following symptoms with the student...

The pain is a lot of pressure under both ribs (liver/spleen areas) and under my right armpit and shoulder. It feels like balloons inflating under my ribs. I have itching, severe neuropathy in my feet and hands which also relates to diabetes, although recently much worse in my feet. I also struggle with pressure in my neck and head. At times, I have trouble concentrating and feel very lightheaded. I fear I am having a stroke at times. My vision fluctuates with dry watery eyes. I am also struggling to exercise due the pain/pressure. I cannot lie on either side due to the pressure and pain possibly relating to my liver and spleen. I sleep on my back which is not my favorite position. I have chest discomfort and nausea. I tire easily and have a lot of fatigue.

The doctor came in with the student and told me it was not my liver. I explained I was concerned and that my internist suggested having a fibrascan. The doctor said, "Let's do it." I felt he was not taking me seriously. He went with me for the scan and his facial expression changed during it. He told the student that it was indicating a 4 which is the highest score. He told me that I would need a transjugular liver biopsy and promptly left with the student. I was an emotional mess. The nurse came out to the waiting room while I was fighting back tears. She took me in a room and tried to comfort me and calm my fears. We discussed that the test indicated the possibility of cirrhosis. I was in shock. I was also frustrated that the doctor did not examine me or take time to talk with me regarding the results.

Bloodwork was also ordered, and all was normal except for the following:

wbc 11.8 (high) (My WBC has been elevated since April of 2020.)

Absolute Neutrophil 8.8 (high)

PT 14.9 (high)

INR 1.30 (high)

Total Protein SerPl QN 8.1 (high)

AST (SGOT)14 U/L (low)

LYMPHOCYTE #1.9 K/mm3 (highlighted in red with no explanation)

MONOCYTE #0.8 K/mm3 (highlighted in red with no explanation)

NEUTROPHIL#8.7 K/mm3 (highlighted in red with no explanation)

I am supposed to have a transjugular biopsy next Wed., 1/19/22 and am very scared. It sounds like a terrible procedure. I wonder if there are other less invasive tests and is it necessary. I also fear the worst, cirrhosis, or cancer. I truly do not feel well. Any advice or suggestions would be greatly appreciated. You are all truly treasures as you touch lives with each post. Thank you to the British Trust staff for all your amazing work.

[MINTVCX]

Hi. My guessing is your doctors have ordered liver biopsy to confirm/rule out F4 diagnosis which fibroscan result suggested. Maybe they would like to have it also because your LFT are almost normal (only INR is not) which does not exclude F4 but is less common. I think biopsy can also show the reason of your liver damage (besides your obesity as I undestand).

There are also some more specific tests that can tell more about fibrosis level from blood but as you will have biopsy I think they would not be ordered. I mean fibrotest or ELF.

Please trust your doctors and if they say you need biopsy it is the best for your case. But sadly poor comunication with them and lack of talking to you about your medical situation should not take place. But we unfortunetly do not live in ideal world... Good luck and stay positive.

[Odie81 in reply to MINTVCX]

Thank you for your reply and advice. I am having terrible anxiety regarding the biopsy. It is also very expensive, $28,000 if insurance denies and $18,000 with insurance. My copay would be about $3000. I just want to make sure it is necessary at this point. I had three abdominal CT scans in the spring due to abdominal pain and a stone/poop ball in my appendix. It was determined that the pain was from Ozempic due to backed up stool. Nothing major was indicated regarding the liver. One scan stated it was enlarged and others did not.

[Odie81 in reply to Odie81]

Wondering if I should get a second opinion before I have the biopsy???

[MINTVCX in reply to Odie81]

Unfortunetly CT scans do not always detect cirrhosis. Maybe can you have some second opinion about biopsy? Some other good hepatologist? I think it would be a good idea.

The key question is if the result of biopsy can have more advantages (treatment etc.) than possible risk for health (invasive procedure). But this should be considered by you and your doctors only.

[Odie81 in reply to MINTVCX]

I will check into a second opinion tomorrow. I have to travel 70 miles to see a liver doc. I imagine I will have to move the biopsy because it will take awhile to get on for an appointment. I do not think it is an emergency. The pain and pressure scares me. I truly thank you for your responses.

[pushthrough]

Hello Odieim I’m from the states as well and was diagnosed with cirrhosis at Mayo at 38. I’m assuming they want to do a biopsy because of your size. Btw, if your BMI is 30% that can and does throw off the fibroscan. If you are able to fit in an MRI machine you can have an mri with elastography. They could diagnose you that way and also see if there is cancer. Cirrhosis isn’t really a death sentence. I thought it was but you will hear from others on here it’s really not. You just have to change your lifestyle. That includes seeing a dietician, follow strict meal plans, esxercise and not drinking alcohol at all. They believe my liver damage was caused by alcohol. I wish you the best and this place is awesome! Feel free to send me a message.

[Odie81 in reply to pushthrough]

Thank you for your response. I appreciate your kind words and info. Mayo did not look at my liver. My heart was the focal point of the visit. I have been doing cardiac rehab for over a year trying to build up my stamina. I wonder now if some of my chest pain and fatigue is from my liver. I do believe my liver and spleen are swollen. I have had spells for over a year in which I will have spasms under my ribs while doing dishes or other activities. I try to adjust my body to stop them. This also happens if I try to sleep on either side. I wondered if there was an alternative to the biopsy. It frightens me. I am having a lot of anxiety while feeling terrible. Thank you for responding.

[pushthrough]

In all honesty most liver specialists refuse to do biopsies including Mayo. I asked for one. I would ask for the MRE as an alternative. try not to worry too much.

[Odie81 in reply to pushthrough]

Will do. Wish I could go back to Mayo. It is a 9 hour drive. It was challenging due to cpt codes. Thanks again for sharing. I imagine it will take awhile to get into another doc. It took 5 months to get in the one that wants to order the biopsy. It is hard not to worry. I am struggling with pain and not feeling well. The pressure in my head and inability to concentrate at times scares me. The mind can go to the worse case scenario such as cancer or cirrhosis. Truly appreciate you!

[pushthrough]

Hello again Odie. If it makes you feel any better liver biopsies were the best and most common way to diagnose exactly how bad the cirrhosis is and also what caused it. Now they try to use other testing to avoid the biopsies. If your hepatologist wanted to do a biopsy after that fibroscan I'm sure he/she had a reason to want to do it. Sometimes they do it to find out whats causing it if they can't figure it out through your history, and other testing ruled out causes. If you ever drank a lot for an extended period of time you should tell him. I'm sure they tested for Hep A, B, C and autoimmune disorders? There are several things that could cause liver damage and they may want to know what it is so they can address it. Mine was pretty straight forward. I drank a lot of alcohol, I stopped drinking, the cause of the damage was removed. Now I just focus on keeping my liver happy.

Have you had a colonoscpy and endoscopy recently? Typically they will find varices with cirrhosis but not always. They found a few in me when performing that test. That's actually when I was referred to Mayo. Please keep us posted on what you find out.

[Odie81 in reply to pushthrough]

My dad and brothers were heavy drinkers. I decided at a very early age I would not go down that path. I am not sure what they have tested me for regarding my liver, some bloodwork, CTs, and fibrascan recently. The decision to do the biopsy was made without any discussion as a result of the fibrascan. As I reflect on it, it makes me very uncomfortable. As a teacher, I always LISTENED and gave my all for my students and families. I have them a voice in their educational experience. I feel like that does not always happen in healthcare in the US. You have very little time to talk with the doc or you are informed that is not my area and you are referred to another doc. The docs rarely work together and know what the other is doing. That is what I loved about Mayo. It was truly a team approach. Just wished they were more helpful with billing and CPT codes. It was a bit overwhelming for the patient and made it difficult to focus on wellness. I am concerned about my liver, spleen, pancreas, and other organs that could cause my pain/problems. The biopsy sounds invasive and wonder if other test should come first. I am very discouraged. Thanks for your reply.

[pushthrough in reply to Odie81]

Odie, I completely understand what you mean by not having having a voice when seeing a physician. This is where you HAVE to become your own advocate. Personally I would not let some specialist willy nilly just biopsy my liver when I know there are other tests that can be performed. The only place I would have agreed to that in the beginning is the Mayo Clinic and even then I would be hesitant.

Here is the process I went through with some detours (ER). Routine blood work elevated enzymes -> ultra sound enlarged liver discovered -> Fibro blood test ordered found to be consistent with f4 -> MRI discovered portal hypertension -> waited for my INR to go down so I don't bleed so much then the Gastro doc did colonscopy and endoscopy varices discovered -> sent to Mayo Clinic to hepatologist MRI with Elastography (MRE) ordered and they found a partly cirrhotic liver, and other things less important -> Repeat MRI no cancer the scarring did not regress, blood tests mostly normal, fibroscan, 18.7 kpa dietician, then specialist at Mayo said you have compensated cirrhosis meld 8. I asked for a biopsy and she said no, it's clear you have it. Then I asked several more questions. Basically she said I can expect to have a rather normal life as long as I follow the diet, excercise and never drink again.

Being in the states you know how insurance is. Typically they won't just let you go get an MRI unless they do a ultrasound first. They have to follow the protocol to be covered. That might be why you would have to pay so much for that biopsy. They could view it as exploratory but it depends on how it's coded. They could have had high confidence that I had F4 from just the blood test, MRI with Elastography, and Fibroscan. Of course the gastro doctor discovering the varices is the only reason my insurance covered being seen at the Mayo Clinic.

I have to drive 1.5 hrs to Mayo every 6 months to be monitored for HCC. For me it's a short drive to be seen by some of the best even though her bedside manner is not up to par.

[Odie81 in reply to pushthrough]

You amaze me. Wish I was closer to Mayo. I called about a second opinion with a doc in Bloomington, IN. They can see me on Monday due to elective procedures canceled due to COVID. The pressure under my left rib and stomach discomfort has been consuming today. Just feel so unwell. You have had quite the journey. Thanks for sharing. I have complained and tried to get answers for years. I am limited due to my health now and scared. I feel like things are going downhill quickly. Thanks again.

[Odie81 in reply to pushthrough]

I sent a message to the nurse regarding the MRE vs the biopsy. I received the following response.

It is not any more accurate than FibroScan for most indications based on extensive experience at Mayo Clinic where we have done them for more than 10 years. An MR elastography will not be able to determine if NASH is resent. It is absolutely not the same thing.

I am going to another GI doc on Monday for a second opinion. I appreciate your responses. I am having terrible anxiety.

[Odie81 in reply to pushthrough]

This is what I found on the Mayo website. If you have liver fibrosis, MRE can help gauge the severity of your liver disease, guide treatment decisions and determine how well you will respond to treatment.

The traditional test for liver fibrosis uses a needle to extract a sample (biopsy) of liver tissue. An MRE scan offers several advantages:

It's noninvasive and generally safer and more comfortable than biopsy is.

It assesses the entire liver, not just the portion of liver tissue that is biopsied or imaged by other noninvasive tests.

It can detect fibrosis at an earlier stage than can other imaging methods.

It is effective in people who are obese.

It can help predict the risk of certain liver complications, including fluid accumulation in the abdomen (ascites).

[Odie81]

Thanks everyone for your replies.

[pushthrough]

Hello Odie, it looks like they might be trying to see if NASH is responsible your liver scarring. I don't know much about NASH and whether doctors can find out if NASH is the cause of liver disease or not using another method. Yes, the MRE can certainly tell a specialist how severe the damage is to your liver a long with a lot of other things. I know not every facility offers them but hopefully you can find one. Let us know how everything goes.

Best Wishes!

[Odie81 in reply to pushthrough]

Will do. Looking forward to a second opinion on Monday. Thanks tons!