Out of Options For Liver Treatment? - British Liver Trust

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Out of Options For Liver Treatment?

LeiL profile image
LeiL
9 Replies

Just returned from Fibroscan appointment and my liver stiffening is headed in the wrong direction. Over the last year I’ve lost 60 lbs and my liver enzymes have all normalized during the last 12 months. My BMI is now 21. However, I’ve had RUQ pain that the Drs told me couldn’t be my liver, and my LFT are great. I also have had an increase in cholesterol and my TSH increased despite my weight loss. I had to beg for this Fibroscan because they said they knew it would be better. Liver Stiffness increased from 6.6 to 7.0. My CAP score decreased from 257 to 231.

Anyone else experience this?

Besides pain, my symptoms included runny nose when consuming food, itchy neck, slight pain at the ankles, and baby kicks in the liver,

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LeiL
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9 Replies

You are far too anxious about your liver health. The slight increase in your FibroScan score isn't necessarily significant because FibroScans aren't as precise as you assume. Your score of 7.0 is at the upper end of F1 so you have very little if any fibrosis. Your lower CAP score reflects your weight loss and means that you have less fat in your liver. Your normal blood test result means that you don't have NAFLD and the fat in your liver is benign. Stop worrying-your liver is healthy!

Many physical ailments have an emotional component resulting in psychosomatic symptoms. The itchy neck, runny nose, ankle pain and 'baby kicks' when eating almost certainly reflect your excessive, unhealthy level of anxiety and overactive imagination. None of the symptoms you described have any connection to your liver. Livers don't give off 'baby kicks' when a person eats!

Keep on living healthily but stop worrying excessively about your health and constantly looking for symptoms that confirm your worries.

LeiL profile image
LeiL in reply to

Thank you I welcome all replies and perspectives. I wish it was just anxiety although I certainly do have that. I’ve had a liver biopsy confirming NASH in 2014. My liver enzymes only became normal in the last 12 months when I began a strict dieting regimen. Before that AST and ALT was in the hundreds. In 2017 my Fibroscan was 4.3 ; 2019- 6.6. Weight loss helps many people with NASH, apparently I’m not one of them. I’m also hypothyroid, had that removed because of hyperthyroidism which I now view as a mistake and a cause of the weight gain. I’m also insulin resistance although I’m not a diabetic brought on by thyroid medication. I’m classed as metabolic syndrome. I engage in a form of exercise for an hour each day and try to eat 1200 calories a day which is hard for me with the abdomen pain which commences when I eat. I don’t drink alcohol.

In the last 5 months I’ve developed high cholesterol and high blood pressure. High cholesterol (215) and for me any number over 175 and not the 200 used for most people. Tenderness in the liver area, GERD (first time) and definitely pain in the abdomen that sphincter of ODDI was considered. Sudden food intolerances and malabsorption of my thyroid medication that necessitated a change to a liquid form. Currently on antibiotics for SIBO. I also have about 4 liver cysts, kidney cysts, spleen cysts, and unfortunately pancreatic cysts. I now lose weight if I eat one calorie less a day and have been cautioned by my gastro to try to stabilize my weight. I was told despite not having a thyroid my body wants to stay in the hyperthyroid state and they are constantly adjusting my medication dosage. However, if it gets over 1.0 I develop excess cholesterol and high blood pressure issues.

I thought that keeping the weight off and reducing my thyroid medication would help....it didn’t.

AyrshireK profile image
AyrshireK in reply to LeiL

Hey it is not all doom and gloom - a massive bright side is that although yes your fibroscan has risen a bit it still hasn't gotten any worse by jumping up the fibrosis scale - the small rise since 2019 can totally be put down to the location of the 10 readings taken across your liver - kPa is an average score of the readings so it's probably hit a slightly more fibrotic bit to rise it the tiny amount and so you are still in the F1 category.

Fat has decreased significantly which is great.

Liver numbers normal so no inflammation which is brilliant - you obviously had inflammation with your fatty liver at your biopsy (which is hepatitis) - NASH if far more aggressive and faster moving and by definition NASH is Non-alcohol related steatohepatitis means your liver is inflamed - with normal blood results then your liver isn't currently inflamed so probably no NASH.

Don't give up, the rise in fibroscan is pretty insignificant as you haven't got more damage you are still in F1 and not soaring up the scale towards F4.

You arn't out of time or anywhere near it, keep up the good work with diet and exercise and perhaps doctors need to more get a grip of your thyroid and cholesterol issues. Your liver isn't looking too horrendous at all.

Katie

LeiL profile image
LeiL in reply to AyrshireK

Thank you Katie. Really need the encouragement.

in reply to LeiL

I wouldn't worry about cholesterol. If you are desperate to lower it then check out Dr John McDougall's website. A lot sick people including people with problems like yours have benefited from following his wellness program.

Your BMI of 21 means that you can ease up on dieting. Eating 1200 calories a day with a BMI of 21 is not healthy. You'll wind up skin & bone and sicker than ever. Your liver enzymes now being normal means that your liver is not inflamed. Your lifestyle changes have resulted in your liver settling down and hopefully the increasing stiffness you mentioned reversing itself. I wouldn't get another FibroScan for at least a year or two and focus on following a healthy lifestyle.

You need to ease off the 'organ recital' i.e. constantly focusing on your health problems. Unless your cysts are malignant why worry about them? The insulin resistance may resolve itself if you continue to eat healthy & get regular exercise. Your blood pressure may resolve if you continue to follow a healthy lifestyle & lower your stress levels. If it doesn't then medication can lower it. The body can tolerate moderately high blood pressure. My BP was incredibly high (malignant hypertension) for over a year resulting in bouts of hypertensive encephalopathy and two minor strokes before my condition was diagnosed.

My liver is producing amyloids an abnormal protein that it sends out to my heart, kidneys & other organs. My autonomic nervous system is damaged and my blood pressure skyrockets unless I take medication and avoid prolonged stress. My condition will kill me in the next few years, maybe sooner, however despite my problems I exercise daily on a treadmill, meditate and I try to stay positive despite knowing that my exit point is approaching.

Life would be unbearable if I focused solely on what's wrong. I start each day by listening to an audio tape of Jon Kabat Zin who gets me to relax. You can find him on YouTube. I keep busy & I follow my interests. Today I did 45 minutes on my treadmill. Exercising daily has reduced stress and the severity of some of my symptoms because my body works better.

If you can relax & stop worrying your body may reward you by healing itself. The picture you paint is one of someone constantly focused on monitoring his/her body looking for things that are wrong and seeing doctors who give you pills to fix one problem and the pills create new problems.

LeiL profile image
LeiL in reply to

Actually other than Thyroid medication which I must have, I take no medication, not even for my cholesterol. I am prescribed a 14 day regimen of antibiotics for the SIBO which are my first antibiotics in 10 years. I walk three miles everyday and do Yoga three times a week. I also really big on acupuncture but unable to use at this time, plus the center I was using just announced that they are permanently closing.

I agree that I need to focus less on my health but I do monitor it.

LeiL profile image
LeiL in reply to

My cholesterol report just came and my total cholesterol and LDL went up 60 points. However , can’t blame it on the thyroid medication this time.

LeiL profile image
LeiL in reply to

Edward,

I sorry to hear about your condition. My brother in law died from amyloidosis at age 50. He was only diagnosed 90 days before his death....the Drs only gave him 10 days from diagnosis. I hope that there is some treatment to lessen the effect or even a cure in the works.

in reply to

Edward, thank you for such a supportive and inspirational reply.

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