Confused and Afraid

[Kruzader]

Hi all, I’ve been lurking a while and have found this community and the FLF site to be a valuable source of information. As my journey continues I wanted to share my experience and diagnosis (or lack of) and perhaps hope that the collective expertise of the community can help we with questions to ask and to direct my treatment pathway. All advice and input is very gratefully received. I’ll try and keep it brief.

I’m a 50 year old, white male from the UK. I’m a big lad, 6’5” and 290 lbs. A couple of side notes. I have CSID (congenital sucrose imolamaltase deficiency) which means I can’t digest sucrose and some starches. It’s doesn’t cause daily issues but I wonder if it may play a part in this situation. I have also had high BP since my late teens. I have taken a variety of medications for this over the years. 5 years ago I suffered a heart attack and had 2 stents fitted. I thought I was fit, gym, running and lifting. I guess not! I have been a moderate to heavy social drinker since 30’s.

Approximately 3 years ago I noticed an occasional right sided discomfort and pressure, particularly when I leant forward. 12 months ago I experienced a 24 hour period of more severe pain on the right side of abdomen that felt like a tearing sensation. I went to the GP and had a bunch of tests. My annual blood tests had always shown normal liver function result, as did these latest tests. She also checked ferritin which came back slightly raised at 450. I also had an abdominal ultrasound which was normal.

Skip forward, I had a specific liver, kidney and spleen ultrasound which was totally normal size, liver not particularly fatty was the immediate feedback. Referred, for Fibroscan. The technician had a really hard job doing the scan, finally he got readings and completed the process. He wouldn’t disclosure the results and said I’d get a letter. I saw the screen though and googled when I got home. 75kpa. The fear set in. I haven’t drunk a drop of alcohol since the scan. Consultant said results were contradictory and that the only way forward was a biopsy. This was done on Thursday. Consultant had a really hard job imaging the liver. The process took 45 mins and he said that his experience reinforced the fibroscan result, he said he was confused too. I present as completely well!

And there you have it, I have little or no symptoms of liver disease other than some random, occasional, and not severe abdominal discomfort, normal bloods (e.g. platelets 225 to 275), my scores on all methods are very low risk for fibrosis/cirrhosis, yet it appears my liver is severely damaged.

Now anxiously waiting the call with results of biopsy, wondering what the future holds and how on Earth this all happened.

Sorry it was so long, and thanks for listening.

[nash2 Partner]

Well Kruzader

You are certainly a strange mix. We, of course, can't diagnose anything though there may be someone here with similar issues though you are certainly rare. Conceptually it wouldn't seems like CSID would be a challenge for digestive management but not directly a liver issue though I suppose there could be other enzyme issues that haven't been identified yet. A kph of 75 is hard to imagine. Seems like a probable test failure. Might it have been 7.5 instead? Our general diet recommendations might be useful for you as we avoid the things with sugar but we emphasize omega 9 fatty acids as the key energy source that is easiest on the liver. The biopsy will probably give you enough information to better understand your situation but waiting is hard.

fattyliverfoundation.org/li...

Wayne

[Kruzader in reply to nash2]

Hi Wayne, thanks for the reply and taking an interest.

It was definitely 75kpa, saw it with my own eyes (but didn’t understand what it meant at that point) and the letter I got confirmed the result. The operator said that the scan showed stiffness but didn’t elaborate further at the time. It was the comments of the consultant radiologist that struggled to image my liver for the biopsy that freaked me, he said that it indicated the fibroscan was correct. Until then I had assumed it was an error! As you say the biopsy results should reveal much more.

Only other thing of note is I am Heterozygous for p.C282Y, so a carrier for Haemochromatosis, I don’t think this is likely to be an issue but have read it can be a factor in some people.

Ever since my heart attack I have been very anxious about my health and the not knowing or understanding is driving me mad.

Thanks again, Paul

[Kruzader in reply to nash2]

Also, I’ve been following the diet advice, including the olive oil, omega 3 and Vitamin E. I get plenty of fibre and take resistant starch supplement.

One other strange thing, I can’t stomach the thought of eating red meat, I used to love a steak but have gone right off which I find odd.

[nash2 Partner in reply to Kruzader]

Well, the iron issue could be contributing. Your doc will want to understand your iron stores as the liver can deposit iron. I have that issue somewhat and give blood once a year to prevent accumulation. The good news, in an odd way, is that if that is a valid Fibroscan your liver is doing much better than most people would be and in the end it is function that matters. Perhaps your liver isn't uniform. I would try to get an MRI Liver MultiScan. The software is made by Perspectum Diagnostics. It looks at the entire liver and is liver specific. A standard MRI isn't nearly as good.

Wayne

[Kruzader in reply to nash2]

I’ve looked into that scan and it is available on the NHS so will be discussing at my appointment if appropriate. Thanks again Wayne.

[Amethyst91]

I’m in a slightly similar boat. I’ve been seeing a dr since May this year and all tests are great only showing mild fatty enlarged liver but my pain is awful. It’s only th right side of my body, URQ, right shoulder, right low back, right hip, right side of neck , right back side of shoulder. It literally feels like my liver is trying to push itself out of my body. Due to all my tests being ok and me not having any obvious signs or symptoms of cirrhosis, all my drs think I’m pretty much crazy. I finally escalated my issues to a major transplant hospital in the US and got a fibroscan there, that dr only orderd to pretty much shut me up. I’m a very small female and the PA did say it was difficult to get a clear picture while she did the exam but she was able to do it and my score was very good for the most part being a 3.8 kpa and 246 cap score still showing some fatty liver. They said I should be very pleased with that and sent me with instructions to keep dieting and I’ll be better. My gastroenterologist ordered a fibroscan a while back that I just did on Friday at his office. Now this tome the technician had a horrible tome reading me and I felt like she kept getting my ribs and every image I saw from this one was way over 18kpa so I can imagine when the dr reads it to me it’s going to look really bad. I’m obviously sry nervous but from what I’ve read, it’s very hard to do a fibroscan and the technician needs to be pretty experienced. Also it’s pretty easy to get a false positive due to bone and inflammation, apparently a false negative is pretty difficult to get compared to the other. I think if the technician struggled it’s a good chance that the score isn’t that bad but I would go for a biopsy if offered to be sure. If they offer me one due to that test I will jump on it. Also having hemochromatosis is something that has the possibility to cause some damage so getting better testing would probably be a good idea just to make sure it is what they think or not. The struggle trying to get to the bottom of liver problems when your tests look good is just insane , but keep fighting. I’ve been on this journey for 7 months and I very much know something is wrong but trying to dig it up might take Avery long time. Depending what your dr says maybe you can retake it or try another imaging option that isn’t a biopsy but definitely try to convince them to do more testing.

[Kruzader in reply to Amethyst91]

Thank you, I hope you find the answers you are looking for too. I’ll update when I find out more.

[Alterity]

Join the club. I had no signs of liver disease in 2001. Never felt anything wrong, blood work great. I went in for gastric by pass and when they opened me up they said I had the worst liver they had ever seen. Being a Gastric by pass surgeon he had seen a lot. He aborted the surgery, sewed me up and said I believe you have a new disease called Nash. I then was referred to a specialist who said I had 6 years to live unless they find a cure for this new unknown disease. Fast forward. I have had many scans, ultra sounds and MRI that say different things, but my biopsy's always say NASH, with Cirrhosis. My 2018 MRI with elasticity (which cost $15,000) showed I was going into stage 4 Fibrosis. That was a little scary so I got back on my diet, only to change jobs and move to gain over 1/2 of it back. Stress and eating wrong does flare mine up and I have what I call crashing days, where you are so tired you can't put on foot IN front of the other. Swelling of the liver and sometimes flu like symptoms which usually last 24 to 48 hours. I say I have a dead cell in my battery and we all know that enough dead cells in your battery, your battery is gone. I'm back on my diet and I am also now on the trial research pill. I do feel a lot better, but I too did not know I was sick 19 years ago. Just try to keep stress out of your life (impossible) and eat better and only an occasional drink ( might have wine once or twice a month which the doctor told me wine actually might help) I wish we could educate more people about this silent killer because there are now 1 out of 4 people with this deadly disease and don't know it, no symptoms at all. Good luck, don't give up, stay positive but I would say I'm not a doctor, but you are probably one of us even though it's not consistent, mine wasn't either. Like I said, this is a silent killer, some people which die of heart attacks actually died of NASH, their liver shut down causing the heart attack, but if they didn't know they had a liver problem, they didn't do a autopsy so there fore they died of a heart attack, because they had heart problems which probably came from the liver in the first place. I would continue living my life, be positive as if you do have a liver disease. It can't hurt to live clean, it might make all your system function better.

[Kruzader in reply to Alterity]

Thank you. Well given that you are replying to me 19 years on I’ll take that as somewhat encouraging. It is a very complex and variable disease it would seem. Did they ever tell you what had caused your liver to be in such a state all that time ago? Thanks again. Paul.

[Alterity]

The surgeon didn't know. He asked me if I had taken a lot of Tylenol, because that is known to cause it, but I later read some doctors reports from when my gallbladder had been taken out in 1983 and it said I had fat around my liver. So I'm roughly going on 40 years of fatty liver to Nash. I'm 64 years old, meaning I had it when I was in my 20's. I have been over weight all my life. So I believe it was the fat, the Tylenol probably helped, as did the drinking in my 30's and early 40's. I only ask for meds that don't go through my liver now. I stay away from red meat, maybe once a month if that and tried to handle stress better. I get lots of rest especially if I'm hurting or exhausted. Sometimes just going to bed helps. I had back surgery and both hips replaced 5 years ago all within a year. I crashed a lot, my heart went haywire and it was a crazy time, but I'm back living again, New job, New home, new life and feeling so much better. 19 years ago at 283 and now 199, hoping to be 179 by Christmas. My goal is 140 by summer and hopefully with this little white pill be almost cured. Good Luck.

[Kruzader in reply to Alterity]

Wow! Thanks for the info. That’s quite the journey. I’m hoping I’ll know more and will update the thread as and when. All the best for the future.

[Ednoral]

I would be confused too. Certainly you are not of the run-of-the-mill liver disease type. Liver disease does go unnoticed for years until Boom! one day after a test you are told you have liver disease. I was told I had NAFLD about 10 yrs ago and that was it. Wasn't even told to change my diet, etc. Well 6 mths ago I was not told I have NASH. Now, that scared me. So, I've changed my diet, stopped all alcohol and trying to exercise more. I have to admit I am feeling better for it. I'm seeing a hepatologist at the end of this month and want to get a fibroscan, to see how damaged my liver is. We have to treat our liver with respect and do what is right for it to recover because it can be recovered if it is not cirrhosis (scarring). Best of luck on your journey. Come back and let us know how you are doing from time to time. There is a lot of information on the internet about liver disease and also some good videos and lectures on Youtube.

God Bless!

[Kruzader]

Hi all, I promised I would report back, so here I am!

After 5 weeks, I finally got my biopsy result. In summary it says that my result is consistent with non-specific, minor changes and minimal to minor fibrosis, with no evidence of chronic liver disease or cirrhosis. After months of having this hanging over me, to say I am relived is a massive understatement. Today is exactly 4 months since my fibroscan. I’ve been discharged from hepatology.

I am left with a bunch of unanswered questions about my health which I need to start again with. Not least, why I gained >30kg in 12 months 20 years ago that I’ve never been able to shift. I’m going to have cortisol checked, for Cushing’s disease, but I guess that’s another forum.

Anyway, thanks all, I wish you all the very best with your own journeys and hope you find answers and a road to good health.

[Zebracornmummy]

Hi thereJust to say we are a family with CSID, my youngest daughter has it severely, my oldest daughter and I have it mildly.

Just wanted to say you are not alone!

We are very familiar with it so if you need any help on that front, please shout. I have also had a pain on my right side...towards bottom lung/liver and rt shoulder pain and no idea why, gets worse when i sit forward, ie when i drive. all tests seem to come back normal.

[Threefour in reply to Zebracornmummy]

I also have CSID and pain in my lower right abdomen. Also worse when I sit for long periods of time.

[Schnauzerguy]

Welcome, and sounds like you’re on the journey, and a familiar one at that. It also sounds like you’re starting to make changes and figure out which ones work for you.