Trying to solve a mystery: For 12 years now I have had... - NRAS

NRAS
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Trying to solve a mystery

Rheumagal
Rheumagal

For 12 years now I have had fluctuations in my liver enzymes with no currently known cause. I recently went in for blood work and my enzymes were quite elevated. I have had numerous ultrasounds that come back normal. The following week the blood work was back to normal. Anyone experience this? Is it autoimmune related??

Things to know:

I am not on any meds right now and haven’t been for 6 months.

I am not taking any supplements

I do not drink not even a little

They have ruled out every known issue such as hepatitis, fatty liver etc.

I will be seeing my Rheumatologist in a week to discuss with her.

Thanks everyone.

11 Replies
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Could it be a liver problem called PCB,i ask as my friend has it.I AM NOT SAYING THATS WHAT YOU HAVE. Look into it and ask.xxxxx

Hi,

I have experienced the same, have they tested you for alpha 1 Antitrypsin Deficiency? I’m a carrier and it can cause elevated liver enzymes. It’s genetic and they found mine as similar to you, they couldn’t work out why liver enzymes were slightly elevated. Hope this helps.

Might be a daft thing to say but could it be dietary? Maybe your liver enzymes fluctuate because of what you’ve eaten. Do you take any pain meds because that’ll do it every time. Sorry not much help.

Rheumagal
Rheumagal
in reply to Leics

Thanks for the reply. We thought of that but I have been a vegetarian for years. I don’t eat gluten or sugars or dairy. I have a very clean diet. It really is a mystery.

Thanks for your thoughts!

Yes. I have liver issues related to the disease. My enzymes are controlled with azathioprine, and steroids once in a while when needed. Took forever for them to figure it out. Even a biopsy came back normal. This problem actually began 13 years before diagnosis of RA for me. I hope they figure it out for you.

Rheumagal
Rheumagal
in reply to dbestdeb

Did they ever diagnose it?

dbestdeb
dbestdeb
in reply to Rheumagal

No. It’s not autoimmune hepatitis or any other kind. Seems that my immune system just doesn’t like my liver. I try to limit carbs and don’t drink alcohol or take Tylenol, trying to help it as much as I can. They know it is autoimmune related because they can manipulate the enzymes with suppressants and steroids. Until they figured that out, I was scanned and poked and send for every test known to man every year. It was a relief when they figured that much out.

Rheumagal
Rheumagal
in reply to dbestdeb

I can imagine it would be a relief. I’m so exhausted from nonstop tests etc. I have more coming up next week 😕 they will scan my gallbladder and liver with a HIDA test.

Hopefully they can get to a satisfactory conclusion soon!

Thanks for your help.

I hope so too! I had that test too after they did a liver biopsy and my gallbladder was unhappy about it. I ended up having to let them remove it. My body just doesn’t like interference and always seems to over react. I can’t even get a flu shot without getting deathly ill from it.

Good luck!

Just had a liver scan x I know how your feeling 🙈 second one x I swear it’s the meds as I don’t drink and eat a healthy diet x Bonus is RA is behaving x but looks like it’s ruining my liver x Came of MTX because of this x now I’m the same on Sulpha and Hydrox x gets me so fed up 🤷‍♀️ Now I’m due to go in for full hysterectomy as I have a 5inch cyst on my ovary 😩 please please give us all a break from this misery 💕

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