British Liver Trust
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Very High ALT for 20yrs WHY

No one seems able to establish why my daughter age 43 has has ALT of 80/90 for over 20 years

a special MRI scan has shown severe inflamation yet all other tests are clear

she has xanthoma low ferritin hashimotos

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It may be Autoimmune Hepatitis.

You need a gastroenerologIstanbul who specializes in the liver.

Don't allow your doctor to put you on Prenisone or any other corticosteroids steroid. the alternative medicine doesn't act quickly,but it's eventually effective.

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so what alternative treatments would you suggest

test for auto immune hepatitis has come back negative

whatever is going on i believe its causing major tiredness, joint and muscle pain /fibromyalgia

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Has she had calcium and parathyroid tested ?

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Hi. My ALT is the same only its been higher at some points. I would post on thyroid uk, liver and thyroid are linked. Is she being treated for Hashis? If so she could be under medicated. The symptoms you describe are all hashi's symptoms too. The liver, as all other organs, slows down if hypothyroid and can become congested. Gluten free diets can help. Also to consider Hashis is an autoimmune disorder so often linked to other autoimmune disorders. I am in the same boat as your daughter, fluctuating thyroid tests, elevated LFTs and I have a positive ANA. But nothing conclusive. There are others on thyroid uk more knowledgeable than me though. Post there, it's very enlightening! Good luck

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She is definitely well treated for Hashis is on NDT too

I am aware that untreated Hypothyroid patients often have high ALT,cholesterol,fibro

The doctor who did the special MRI scan which showed the inflamation said that together with the low ferritin and horrendous xanthomas something is very wrong

They have repeatedly suggested a liver biopsy but she has resisted because of bleeding risks and flaring the fibro hence why the special MRI scan at Oxford

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Yes I resisted a biopsy too especially as they don't always show AIH anyway. I too have fibro so sound very like your daughter even to ferritin being through the floor. Low ferritin will mean though her NDT may not be working to capacity. Is she supplementing that now? If so is she taking it four hours away from her NdT so it doesn't interfere with absorption? Sorry if I am teaching granny to suck eggs, you may already know all this!

If she is doing that then there are other things to try to reduce inflammation in the body.

Is she on a gluten free diet? Sugar free? I can definitely feel inflammation in my body if I eat too much sugar/bad stuff, my liver just can't deal with It, even to he point I know my LFTs are raised again usually shown with blood tests. I have Gilbert's syndrome too which is when bilirubin levels are high. Not supposed to be any symptoms but if you google people say they do experience fatigue etc. I am stuck like your daughter in that AIH not proved but my LFTs are okay at the moment. My specialist did say to me though sometimes things take a while to show in bloods. Not that that helps! If she is gluten/sugar free and well treated for Hashis then it could be her liver. I am not ruling that out for myself either but in the meantime have started on NDT, supplementing ferritin and trying to sort my diet out. Hope you find some answers soon MP x

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She needs to do the biopsy. The risks associated with biopsy are much less dangerous than the risks of continuing without diagnosis and treatment.

Has she discussed her concerns about possible biopsy side effects with the doctor? It might help if she knows the doctor's plan in the event that the has a flare or bleeding.

Lots of people on this forum have had biopsies. Perhaps they can share their experiences to make her feel better about it.

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most of her concerns are not being able to work for a few days bcos she is self employed

plus flaring her fibromyalgia

unless i can care for her and the kids theres no one to help

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Can you contact the British Liver Trust to see if there is some kind of support for people that need to leave their jobs for a few days or that need child care for a few days? I'm in the US, so I don't know what kind of assistance is available near you.

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when you are self employed in the UK theres zero help for anyone

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Has she been checked for PBC with a AMA blood test and checked for Sjogrens? The liver biopsy would really help, xanthomas are common in PBC.

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