36yo and NAFLD for at least 15 years with no know reason(?)

[MatthewBrog]

Hi!

Hopefully this is a place where I won't look like a weirdo so...

I'm 36 and I'm fighting against chronic fatigue, brain fog etc. for some years now. Actually I've always felt tired for a decade but I always thought I just needed more sleep. Until I wished I could sleep but couldn't sleep much anymore.

I have Terry's nails for at least 15 years, I had to look at pictures of myself in the 2000's to check for how long I have that. A photograph is attached by the way. Edit: photo removed as requested by a user below.

I also have a big liver (around 7in / 18cm) whereas I'm very thin and I NEVER drink alcohol (simply because I'm ill if I drink some, which I guess is linked to my liver/NAFLD).

I searched for a couple of years for what could be my problem but my blood is "ok". And I did a lot of blood tests. So no hypothyroid, the liver enzymes look ok, my blood sugar is fine, etc.

But despite the fact figures are ok on paper, my liver is still very large, I am never hungry, always tired and my nails are awful... whereas I'm very thin I repeat and eat VERY clean (lots of vegetables, low carbs, fresh food only, etc.).

So NAFLD looks like the stuff I have but my doctor(s) are telling me it's nothing to be concerned about (my blood is fine so...). And even if there was something to care about, NAFLD looks like something we still don't understand in 2021.

I also have permanent tinnitus, an idiopathic nerve issue at the leg no-one can understand etc.

ANYWAY,

I'm posting here to know if people here have ever been able to "heal" from something similar to what I have. And of course if so, how they did it.

I'm planning on increasing sport although I'm doing sport 2-3 a week already, for 30min to 2 hours (running and road bike mostly).

Cheers.

[Yarkis]

I'm not sure whats wrong with your nails. They look fine to me. Have you had an ultrasound? NAFLD seems odd for someone with no fat like yourself. From what I've read it's most common in obese people. A Hepatitis strain would seem more likely to me. I'm not a doctor though and that's just my two cents. Sounds like you're taking the right steps though. You may want to have your thyroid screened as well. Also causes chronic fatigue.

[MatthewBrog in reply to Yarkis]

Hi, those nails are called Terry’s nails, typical of a liver issue. It’s defined by the white area.

Hepatitis, well I have checked HVB, I have antibodies against it but not the active ones (immunoglobulin G).

I had the hepatitis B vaccine so sounds normal.

[AyrshireK]

When my hubby was diagnosed with cirrhosis as a non-drinker his consultant had to run all sorts of tests and did say even someone built like a racing snake as my husband was could still have NAFLD. However, have you had a biopsy of the liver to check for other non alcohol related conditions? In my hubbies case his ended up being auto immune hepatitis related though an unusual presentation because his only came to light once he had cirrhosis and had never had typical AIH presentation before hand.

There are all sorts of other genetic and auto immune conditions. Also, it's possible that your condition is more progressed than they are saying. Have you had a recent scan of your liver?

Fatigue and sleep disruption are common with liver disease but you need to fuel your body appropriately and if your condition has progressed further than NAFLD then you may need to readjust your diet to actually include more carbohydrates and protein - carbohydrates for fuel as a damaged liver can no longer store and release food based energy and instead turns to your muscles for fuel.

I'd be pursuing a full work up to get an accurate picture of the current state of your liver - a fibroscan, an ELF (Enhanced Liver Fibrosis Test) and even perhaps a liver biopsy.

I personally feel there could be a part of the jigsaw missing in your diagnosis. Do you see a hepatologist?

Katie

[MatthewBrog in reply to AyrshireK]

Hi, I have several scans of my liver and every time I was told it’s big but there’s nothing to worry about...

As my blood is fine regarding liver enzymes no one believes my liver is a real issue. I guess they think I eat a lot of sugar or some fat. I’m thin near skinny, looking pretty good actually. A lot of friends would love to be unable to gain weight like me, I feel like they don’t get how hard it is for me to eat whereas I LOVE food. But my body just can’t handle large meals anymore

I eat according to standard meal times... il never hungry, always feeling a bit full / nauseous.

It’s very interesting what you say about carbs because I have always thought I should avoid them to make sure they don’t feed my liver even more. I’m realizing eating even more carbs might be a solution to feel more energized.

I guess I should see a real specialist and ask for a biopsy but I was told it’s not a « light » surgery.

Si you know if a biopsy will check everything or should I ask my doctor about focusing on specific tests?

Thanks!

[AyrshireK in reply to MatthewBrog]

Maybe ask for an ELF test to see if you do actually have a worsening of your liver condition, it should highlight whether there is fibrosis now and not just fatty build up. Have you had a Fibroscan? It takes a series of measurements and can work out a kPa score which tells you the degree of any fibrosis present and a CAP score which indicates what amount of fatty change is in the liver tissue. You can have normal bloods even with advanced liver disease so with the fact you have some symptoms that might indicate more than just fatty liver i'd be pushing for these other tests - they probably won't do a biopsy as it's very invasive but the fibroscan and the ELF test which is a set of blood tests would be better indicators than just a standard set of LFT's.

Katie

[MatthewBrog in reply to AyrshireK]

Great info, thanks. I’m calling a specialist tomorrow morning for an appointment.

[Hidden]

Hello,

I am glad to see your fellow forum users are being helpful. Please could I gently remind you that the Community guidleines ask that users do not post any photos or results as no one is medicvally qualified to interpret.

Thanks

regards

[MatthewBrog in reply to Hidden]

Hi! I removed the picture.

[Hidden]

Thank you