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Very high ALT and worsening leg pain and weakness, could they be linked?

8 replies

MrsBxxx · 27/03/2026 17:31

Asking for my mum. She had a blood test recently that showed extremely high ALT levels (supposed to be 40ish, hers was 198). Doctor is investigating further however she has developed pains in her legs that are getting worse, to the point she is struggling to walk and says she feels on the brink of collapse when she stands. Can the two be linked? Doctor seems more interested in the liver issue but the legs are causing so much pain that we are worried about them. Does anyone have any similar experiences?

OP posts:
Westernstar · 27/03/2026 17:44

Hi, my mum had similar - and it turned out she had myositis (statin induced). It initially showed up on her liver tests - took about a year to get the answer. Her CK levels were ridiculously high. Was referred to a specialist neurologist and treated really effectively with steroids. Her high liver readings were caused by the liver processing the muscle wastage (or a simplified version of how it was explained) may be worth asking the question. Mum had little pain but became very weak

MajesticWhine · 27/03/2026 17:45

How old is your mum OP? Does she have any already known about health issues or recent illnesses?

MrsBxxx · 27/03/2026 18:04

MajesticWhine · 27/03/2026 17:45

How old is your mum OP? Does she have any already known about health issues or recent illnesses?

She's 65. She has history of a fatty liver, had her gallbladder removed and they were attached which I think caused issues. The doctor suspected hepatitis A as she went on a cruise around the middle east in February but nothing has developed from that.

OP posts:
MrsBxxx · 27/03/2026 18:05

@Westernstar thank you for this. I shall pass it on to her!

OP posts:
Westernstar · 27/03/2026 18:29

No worries worth an ask. Mum had private health cover and they were not great with this. Likely as she was seeing specialist who didn’t communicate well with each other. Had a liver biopsy before we understood what was happening. Once back in the NHS they were amazing. To be fair think it’s quite rare so maybe hard to diagnose.

MrsBxxx · 27/03/2026 18:38

Westernstar · 27/03/2026 18:29

No worries worth an ask. Mum had private health cover and they were not great with this. Likely as she was seeing specialist who didn’t communicate well with each other. Had a liver biopsy before we understood what was happening. Once back in the NHS they were amazing. To be fair think it’s quite rare so maybe hard to diagnose.

I've forwarded it to her and she's going to mention it to the doctor when she sees them next. Thanks again.

OP posts:
MrsBxxx · 02/04/2026 08:29

Westernstar · 27/03/2026 17:44

Hi, my mum had similar - and it turned out she had myositis (statin induced). It initially showed up on her liver tests - took about a year to get the answer. Her CK levels were ridiculously high. Was referred to a specialist neurologist and treated really effectively with steroids. Her high liver readings were caused by the liver processing the muscle wastage (or a simplified version of how it was explained) may be worth asking the question. Mum had little pain but became very weak

@Westernstar I just wanted to come on here to say the biggest thank you. As a result of your post, my mum mentioned it to the doctor who tested her CK levels and found that they were very high (he called her to tell her to get to hospital within 2 hours). She's now on her third day in hospital and they're doing lots of things to help her and determine that it is myositis (they think it is but aren't sure which type). I can't thank you enough! How's your mum doing now?

OP posts:
Westernstar · 02/04/2026 20:09

MrsBxxx · 02/04/2026 08:29

@Westernstar I just wanted to come on here to say the biggest thank you. As a result of your post, my mum mentioned it to the doctor who tested her CK levels and found that they were very high (he called her to tell her to get to hospital within 2 hours). She's now on her third day in hospital and they're doing lots of things to help her and determine that it is myositis (they think it is but aren't sure which type). I can't thank you enough! How's your mum doing now?

Oh wow. I am so glad it was useful, it’s such a weird illness.

Mum is doing so much better, she was so unwell was in a home for 8 weeks. She was treated with a huge dose of steroids but over a year tapered off and last month stopped them altogether. She is still a bit weak but she’s 80 this year and hasn’t been doing her physio as well as she should.

Lots of love to your mum, and hope they work out which type it is and get her feeling better.

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