Having retired on ill health 6 years ago and been diagnosed 18 yrs I always assume that the less energy I have, the worse my liver condition is becoming.......but the opposite seems to be happening. My liver function tests are best they have ever been despite me having extensive cirrhosis.
Read some interesting posts on pacing yourself and I've tried everything. Anybody got any magic supplements or tips......anything gratefully received 😊
Going to try coenzyme Q10 again now I know it's not done me any harm
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spoul
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I am very similar, near normal liver function tests but with cirrhosis.I have also found I was feeling much worse with tiredness in last year, (I also feel weaker).You have my sympathy it's so hard to live with.
I never know how I am going to be.I have no answer I am afraid.
I am experimenting with having my evening meal split into two, having a late evening snack.It's early days but it might be helping a bit , how I am varies so it's too soon to say.But if it helps it is only a bit.Best wishes Jane.
Did I read in the pbc compendium that there was little or no correlation between the severity of symptoms and liver health? So having more fatigue may not be any any indication of the liver condition getting worse. I myself wonder where the LFTs fit into the picture at all , mine go up and down and I was surprised all mine were normal this time apart from the ALP which had dropped from 259 to 204 but can never seem to get an explanation why this is.
I also have bad fatigue now, no magic tips though. It is said light exercise helps so I started to walk every day, in the mornings even then each day differs to how far I can go, the most I manage is a mile on a good day but sticking with it to see if it helps and getting in the fresh air must be good for mood if nothing else.
Yes your right it does say there's no correlation between the two. It's just I can't get my head around it and every time I crash I convince myself there's something more serious going on in my liver.
I'm able to do very little now even a morning shower can wipe me out for the day. I desperately want to get back to walking my dog but if I've got something else to do that morning I can't manage both.
Think I'm just feeling bit frustrated and sorry for myself at moment.......but thanks for listening 😊
I do know that feeling well Pacing yourself and positive attitude is alluding me big time at the moment. I stormed out the GP surgery again yesterday demanding a second opinion I was so frustrated with his flippant attitude, luckily I've calmed down a bit this morning. I will say i do prioritise on what makes me happiest these days and I leave the rest for another day. Take care.
I've read that there are 2 types of CoQ10; ubiquinone and ubiquinol. We have both forms in our bodies but when we actually come to use it, we convert ubiquinone form to ubiquinol. You can buy both forms but it can help more if you buy the ubiquinol form (as a liquid not solid), as apparently as we age, our ability to convert becomes less efficient. Also, the process of converting is more work for our bodies. It won't harm buying ubiquinone, just better if you can find ubiquinol.
I'm surprised to read about having good liver function tests along with cirrhosis. Guess I assumed that good blood results were an indication of liver health. Unfortunately, I don't have any remedy for your fatigue but I do sympathize with the frustration it brings about. Hope someone can deliver that magic bullet to ease the symptoms.
Apparently different cells in liver have different functions and the way it's been explained to me is that the important liver cells are working ok ATM x
Hi moepag, the only 'blood' levels that give indications of the liver's health, according to Dr. Howard Worman, are the serum bilirubin and the serum albumin.
I, like spoul, am now in Stage 4 (with advanced cirrhosis) and have the best LFTs since my diagnosis 28 years ago - luckily at the moment my bilirubin and albumin levels are still within 'normal' range.
Link to Dr. Howard Worman's answer to a patient's question
"Is it possible to be in stage 3 or 4 by the biopsy and have normal LFTs taking Actigall or URSO? Are the LFTs actual indicators of the disease progress?"
Have you been tested for vitamin D deficiency (not many of us get much sun!)? I was tested and found to be highly deficient and was given a strong dosage of Vitamin D tablets for 10 weeks. These tablets have changed my life and the energy I have now is truly amazing, plus no aches and pains.
Hi spoul, I am posting a link to the Mayo Clinic's information/warnings on Coenzyme Q10. As I have said in an earlier post (in this thread) I am Stage 4, with advanced cirrhosis and like you I have very little energy (I only have about 5 hours of vertical time each day, the rest of the time I'm horizontal). I asked my Hep. specialist about taking Q10 and he said "give it a try", well I did for almost a month but got so ill that I stopped taking it.
I tend not to read 'side affects' information before taking meds. etc. (don't want any psychosomatic cues), unless of course if I experience something strange, so after stopping the Q10 I began researching it. I found the Mayo Clinic's site the most informative.
Hi yes I'm not ignoring your earlier advice but my energy crash just coincided with a particularly busy few days and taking mitoQ which is a new coenzyme drug from New Zealand.
I had been taking normal coenzyme Q10 for the previous 2 months and felt fine. So when I changed to mitoQ wasn't sure if it was that or my busy period. I probably won't take the mitoQ again even tho it was very expensive.
Some fairly recent research in 2022 shows some benefits from taking 'SAM-e' in addition to Urso. This is the research. "Understanding fatigue in primary biliary cholangitis: From pathophysiology to treatment perspectives." Authors: Erica Nicola Lynch, Claudia Campani, Tommaso Innocenti, Gabriele Dragoni, Maria Rosa Biagini, Paolo Forte, Andrea Galli - published in World Journal of W J H Hepatology.
The relevant paragraph says: S-adenosyl-L-methionine, added to UDCA, can improve cholestasis in non-cirrhotic PBC patients, probably due to its hepatoprotective effects. In an open label clinical trial on 24 PBC patients, there was a significant improvement in fatigue, assessed with the PBC-40 questionnaire. Although causative mechanisms of fatigue in PBC are still unknown, therapeutic approaches have been sought to alleviate this debilitating symptom.
Critically, it's a small number of participants and it's a self reported measure of fatigue. That said, S-adenosyl-L-methionine or SAM-e is a supplement - found naturally in our bodies - with many functions. It is said also to help or possibly help with other ailments too and seems relatively inexpensive and easily available.
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Debilitating fatigue - dismissive dr
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