I've had high GGT and ALT for the past few years but my last set of tests now show high AST and APL too and slightly high ferritin too. My previous imaging tests and the liver biopsy showed healthy liver, no PBC, no autoimmune hepatitis. There doesn't seem to be a link between lupus activity and the enzymes.
Have you experienced high liver enzymes due to lupus? My hepatologist and my rheumatologist can't agree whether mine are caused by lupus, they both seem to think that they aren't.
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Purpletop
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Alcohol question first, Purpletop..... do you drink alcohol?
Second question - high ferritin would seem to indicate iron overload: is there anything in your diet that might cause this?
Third - AST - is that the same as AlkPhos?
Fourth - What drugs you taking?
Tricky one, I agree and I don't have any answers. I drink red wine (a bottle a week) - and would hate to have to give it up, but I know its a possibility if there is nothing else and my liver starts to go! Not saying yours is alcohol - just how I'd feel!
1. Stopped alcohol last year, now 2-3 glasses of wine per MONTH, if that.
2. No idea about the iron in diet, I've never had this problem before but I've changed my diet to antiinflammatory, so I will check.
3. AST - aspartate amino transferase - different to ALP
4. Plaquenil only.
Am at my wits' end with these levels. I'm worried about liver disease and that lupus is attacking my liver and it isn't yet visible. That by the time it becomes visible, it is too late.
I'm curious to see if someone else has this problem!
Purpletop....i have fatty liver after starting my anti inflammatory diet. Go figure. Thought i was healing my liver with this diet, and now find my liver has fatty cysts all over it. I can feel them. My hematologist seemed to think it was no big deal. There is a decent amount of iron in a lot of the vegetables I eat. Plus my mom died from complications of colitis and her liver going. She is the one I believe I got this disease from. The doctors probably found she was anemic because of lupus doing that from time to time and gave her iron pills. She got iron build up in the liver. Stupid doctor killed her. She was 48.
I read somewhere that taking blood out of the body, would alleviate too much iron in the blood. Question is why does this happen in the body? And, it seems the medieval days of blood letting might have been the right thing to do.
Upsetting..because now I dont know what the heck to eat anymore. I think I am done fighting this...
I have exactly the same high levels. I was told by haematologist and rheumatologist that high ferritin levels would suggest inflammation. Out of interest what was your level? Mine was 460 (ferritin). I don't drink alcohol but always get asked!
Purpletop I had high levels two years ago like you was asked about alcohol consumption needless to say it wasn't alcoholic that brought up the levels but the cholesterol pill I was taking. My gp changed me from Crestor to Liptor and within a few months my results were coming down. Had them done two weeks ago and they are within normal range. So look at the side effects of all the meds your on maybe if could be one of those that's causing the problem.
Copdber, I wish it was that simple. The tests were high prior to my taking Plaquenil and they remain high after it. I take no other meds at the moment other than the odd Ibuprofen here and there.
My hepatologist is convinced that I have sphincter of Oddi disorder (the sphincter between the bile ducts plus pancreas and the duodenum. If it doesn't work properly it backs bile up into the liver, hence the elevated levels of enzymes) but I'
To check that I have to have a procedure that is not without risks. And I'm not really convinced it isn't the lupus, this is why I'm asking it here. But it doesn't seem to be something very common, so I am inclined to think my hepatologist might have a point.
I don't know what to think, it is sad when the trust in the medical profession is so eroded that one feels more able to diagnose than rely on a doctor.
My Alt regularly goes up into the 70's, with or without meds. No where near as high as yours, though. I've never had the other tests you mention, that I know of. I've often wondered if this is why I can't tolerate alcohol since my lupus symptoms started. But obviously you & Maggie still can, so that knocks my theory on the head.
I don't pretend to know much at all about this subject. It sounds like you have done all the research you can, & as with so many other lupus related subjects, are drawing a blank. It just goes to show how much research is yet needed into lupus.
I have had a look in my Lupus Book, by Daniel J Wallace. I find this invaluable for looking up all those weird & wonderful signs & symptoms that occur for us. He covers auto-immune hepatitis well, but also says that raised liver function tests can be a sign of active lupus.
Thank you, I do too, it is frustrating to have something wrong with you and not know what. As for alcohol tolerance, liver disease is silent until is quite advanced, our livers are amazing things regenerating all the time as much as they are allowed to. So you wouldn't feel an intolerance to alcohol, plus the GGT level shows strain on the liver due to alcohol, not your ALT. I hope you're having a good Easter xx
Are you following a special diet for fatty liver? I've just ordered 2 books off Amazon on liver health and liver detox diet. I'm worried about autoimmune hepatitis too. The liver biopsy didn't show it but biopsy is taken from a tiny area, it is possible to miss it apparently. It is so hard to prove a negative, isn't it? Your ferritin is on the high side but lupies tend to have high iron, spk to your doctor for some iron reducing pills.
To be honest I don't actually follow a special diet but I do tend to watch what I eat if that makes sense. I was actually tested for Haemachromotis due to high ferritin but that came back clear. Its monitored quite regularly but I still get the 'call' saying dr would like to see you!.
Hope you get some reassuring answers from your drs soon.
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