Liver: Hello, just wondering, does... - Scleroderma & Ray...

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Liver

mimimacn profile image
8 Replies

Hello, just wondering, does anyone with Raynaud's and Limited Scleroderma have elevated Gamma GT readings in blood tests? Mine are always high. Doctors always ask if you are a drinker (usually they mean a heavy drinker), which I'm not. I barely drink any alcohol, only if I go to a restaurant (not often) I might have a beer or a glass of red wine with my meal.

I've been told, after a Fibroscan, that I may have a "fatty" liver, so diet related.

Thanks for any comments.

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mimimacn
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8 Replies
OldTed60 profile image
OldTed60

hi there. Yes I did have a raised GGT and also ALT for years prior to being diagnosed with systemic sclerosis. However at this stage I was obese/ very overweight, diagnosed only with seronegative Sjögren’s and had not fully recovered from gallbladder surgery a few years earlier and liver hadn’t liked a few years on methotrexate for RA 12 years ago.

Like you I have never been much of a drinker but at that stage was teetotal. I was found to have fatty liver and told to lose weight and and my rheumatologist said my raised CRP should be ignored because it was just due to the liver enlargement not my autoimmune diseases. I tried to lose weight but suffered severe gastritis and used to eat just to appease the awful gnawing pain which I now know was actually early stage Gastroparesis.

Since then I’ve developed severe GI involvement of scleroderma and now carry a high positive SSc antibody. I’ve lost around 35 kilos unintentionally due to Gastroparesis, CIPO and SIBO and my liver bloods are now entirely normal range as is my CRP. I’m fairly sure I no longer have fatty liver as wasn’t picked up or mentioned in a liver CT report following a bad fall on right side ribs a year ago. So I think perhaps my former rheumatologist was correct about my CRP as well although I recall this annoyed me at the time. Despite the severe scleroderma gut, I think I’m actually healthier now than I was prior to starting Mycophenolate 4 years ago.

mimimacn profile image
mimimacn in reply toOldTed60

Thank you so much for taking the time to reply to my query. You've certainly had a lot of issues, but I'm glad to hear that you feel healthier now. In my case I've never had an issue with weight, always on the "skinny" side growing up. I usually weigh around 8 + 1/2 stone these days. I'm due to see a new Rhumatologist soon as my previous one has retired, a pity, as he had a special interest in Scleroderma. I was in hospital recently for various tests related to my heart (I was told it was genetic). Never a dull moment!! While I was there they did all sorts of blood tests and found another issue with my liver apart from raised GT levels, so they've recommended that I see a Hepatologist. So am now waiting for an appointment.

OldTed60 profile image
OldTed60 in reply tomimimacn

Oh dear well I'm glad you've moved beyond the "are you a drinker?" stage to being taken seriously now at least. There are autoimmune liver diseases - one is PBC. I know this is quite commonly linked to Sjogren's but I'm sure it can be linked to scleroderma too as it's one big nasty autoimmune family really. Maybe have a look at autoimmune liver diseases. I've no idea if scleroderma can affect the liver of itself but obviously lots of the drugs we take can impact on our livers too. Best of luck.

mimimacn profile image
mimimacn in reply toOldTed60

Thanks again for your reply. I hadn't heard of PBC, I'll certainly look it up. Will talk to the Rhumatologist too, whenever I get an appointment! You're right about the drugs and side effects. Can be nasty sometimes. Best of luck to you too.

mimimacn profile image
mimimacn in reply toOldTed60

Many thanks for your reply. You're right about the drugs, they all have side effects, but hard to know which ones are affecting the liver. I'll talk again soon to the Rheumatologist.

ApusApus profile image
ApusApus

Thats interesting, I have also been told I have high cholesterol and fatty liver, it was checked when I reported sever itching for months. I am intolerant to alcohol and haven't drunk for over 10 years. I have been a vegan for over 30 years and can't really explain why I should have these things unless it's familiar hypercholestrolemia or connected to the systemic sclerosis?

mimimacn profile image
mimimacn in reply toApusApus

Thank you for taking the time to reply. Yes, I'm personally convinced that our liver issues are related to Scleroderma, but can't prove it. Doctors aren't sure either from what I can see. They usually ask you again if you drink. The fatty liver could be related to diet, you're vegan so you should have an advantage, it's probably a better diet overall. So keep up the good work. Best of luck with your health in the future. Take care.

mimimacn profile image
mimimacn in reply toApusApus

A lot of it is a mystery still, part of the frustration with these autoimmune diseases. I thing Science still has a lot to discover!

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