Help please - confused : My fibroscan... - Living with Fatty...

Living with Fatty Liver and NASH

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Help please - confused

Newdeck profile image
8 Replies

My fibroscan scan was 15,5 (f4) and biopsy showed moderate to severe as well as early cirrhosis. This was in January. I am 55/female and was 162 pounds. I have limited sugar snd carbs, drank 2-3 cups of coffee, and walk 2-3 miles at least 4 days a week, sometimes 7. I am down to 136 pounds and am anxious to rescan in June. I have never felt sick and even had normal blood work snd normal endoscopy. I read on here where many have much better scores so this is really starting to worry me a lot! My doctor just put me on actos, even though my sugar levels are normal. I had been on 1000 mg of metformin daily and it apparently is bad for this. Supposedly the actos is good for fatty liver? I have been reading many many posts and I feel like my results are much worse than most on here and yet my doctor has not really given me an indication that this is severe?? He switched meds, told me to reduce carbs and sugar, and that I could reverse this? All along I thought I could possibly get this to go away, but it is not sounding like it on here? I feel like I need guidance as I am more confused every time I read posts. Help and advice is welcomed...

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Newdeck
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lecc profile image
lecc

Hi newdeck,

I am also new here and I understand the bit in which you say you are confused and needs help (trust me I know exactly what it feels like... not to mention that I am currently in a foreign country away from my family).

Before I start, allow me to stress that , as you are aware, most people in this forum (if not all) are not doctors, so we can only report from personal experience as a patient.

From what you have reported, it seems like you have compensated cirrhosis (you are functioning well).One option you can look into is having another fibroscan (not in the same place where you had your first one) or even simply having an ultrasound (in which F4 scarring should be visible)... The reason I am saying it is because in my limited experience as a patient, the fact that you are felling fine at F4 is odd...

If the second fibroscan does show F4 fibrosis, I believe improving your metabolic profile (reduce LDL, triglicerides, and glucose in your blood, reducing blood pressure, and increasing HDL cholesterol), combined with exercise and a liver-friendly diet might help you reduce the degree of Fibrosis. Also, always check with your doctor before taking any medication and make sure they understand your liver is not doing so well.

There is a really nice guy in this forum who successfully went from F4 to F3.

While F4 is a serious place to be, there are ways to manage it. And always talk to your doctor about your concerns!

lecc profile image
lecc in reply to lecc

Hm... i missed the part where you said you had a biopsy already.

It seems like you are indeed F4.

It is unlikely that it will completely go away, but you can work with your doctor to manage it.

I cant speak about the medication, but reducing carbs is something you hear all the time when discussing liver disease.

sophiaS1980 profile image
sophiaS1980 in reply to lecc

I agree, I don't think a person with stage 4 liver disease could be feeling so well, most have leg cramping, nausea, muscle wasting, itching and bruising from low platelets.

Gratefulhog profile image
Gratefulhog

Good morning! I'm a Type 2 diabetic, F2/S3. Metformin is not inherently bad for liver health, so I'm not certain why the doc chose to take you off it if (although there are other options with better results for the Type 2/Fatty Liver/NASH combination. I recently added Actos with a SGLTi (e.g., Januvia, Steglatro, etc). Research indicates a positive reduction in fat in the liver with this combination. My daily average blood glucose is 120 with a A1c of 6.3%. Regardless of your blood glucose control with medication it is still best for you to avoid processed foods and carbohydrates (simple) to reduce the impact on liver function.

RosaRugosa profile image
RosaRugosa

I have had severe Type 2 diabetes since I was young and have had cirrhosis for over a decade. I take metformin and find it really helps my blood sugar. I also was on Actos for a long time, but I have early osteoporosis and Actos raises the risk of bone fractures (I've had four fractures in the past five years.) So, I have stopped taking Actos for now and will discuss it with my liver specialist at our next visit.

Who is managing your liver problems? If you can get a liver sub-specialist, that would be best. However, there are very few of them. If you can't get someone who specializes in the liver, then a GastroIntestinal specialist with an interest in the liver is the next best type of physician.

For pople with cirrhosis, it's important to get regular liver ultrasounds. Cirrhosis is a risk factor for liver cancer, but it is very treatable if caught early. It is also important to get regular endoscopies (EGDs.) These check for weak spots (varices) in the blood vessels in the esophagus. I nearly died from ruptured varices about six years ago. Since then, my doctors have been careful to treat my varicies as they occur, and I haven't had any other ones rupture.

It's true that most people here have milder forms of liver illness. But, it sounds like your liver disease is milder than mine, and I've lived with it for over a decade, without it getting worse once I had proper treatment.

Forums for people with alcoholic cirrhosis often have a lot of people who are sicker than I am, but their circumstances are very different from mine, and I haven't found participating in such forums to be helpful.

Tea62 profile image
Tea62 in reply to RosaRugosa

Congrats on controlling your cirrhosis for over a decade. May I ask what lifestyle changes you have incorporated on a regular basis to achieve this level of success? Thanks in advance for your reply!

RosaRugosa profile image
RosaRugosa

Thanks, Tea62! I actually think my diabetes meds help more than any lifestyle changes. Also, immediate treatment for my bleeding varices clearly saved my life. (I nearly died in the ER.)

If I knew decades ago that I would get cirrhosis, I would have had bariatric surgery back when I was still healthy enough to tolerate it.

I'm not convinced that dietary changes make that much of a difference with NASH and with NASH-induced cirrhosis. But if you are still interested in my lifestyle, for decades before I got cirrhosis, my physicians and dieticians recommended a low-fat diet with lots of fruits and vegetables. I (or my mom, when I was little) generally followed this advice quite carefully. I now think this probably made my liver worse.

In the past 10-20 years, thinking about dietfor Type 2 diabetes has switched among most physicians, with many of them recommending the exact opposite -- a restricted carb diet instead of low-fat. (Dieticians I've seen still push low-fat.) I have been a vegetarian for 40 years, so keeping my carbs low is very hard. I do eat far fewer carbs than I used to, and am careful with fruits, almost all of which are high in fructose. (Fructose, even from unprocessed sources, is hard on the liver.)

As for exercise, I was pretty active *before* I got cirrhosis. But the cirrhosis has left me with such fatigue that I have been mostly unable to exercise since I dveloped the disease. I am currently staying in Florida and go to the pool a few times a week, which is helping me re-condition.

Now, the rest isn't what most people consider "lifestyle," but I don't drink, have been immunized for Hepatitis A and B, have been tested for Hepatitis C (negative) and never exceed half the recommended dose of Tylenol. (Which I take rarely.) I have also not touched aspirin or any other NSAIDs since I had my varices bleed -- NSAIDs have blood-thinning effects. I take Milk Thistle and have recently added some additional supplements.

Hope this helps, and I wish good health to you! I'd be happy to talk via phone or chat.

RosaRugosa

Troutwhisperer profile image
Troutwhisperer in reply to RosaRugosa

Thank you for sharing. I too have taken milk thistle for many years. I also have been taking phosphytidyl choline for many years. Started both supplements at the same time do to reading of a study where both supplements were being scrutinized. I also take vitamin E and EVOO as a supplement due to suggestion from Nash 2. Best Wishes!

Troutwhisperer

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