When I had my liver transplant back in 2016. I secretly promised my donor that I would look after this gift of life, and never knowingly cause it any damage.
So here I am, almost eight years later, and I've now been diagnosed with having MASLD (Metabolic Dysfunction-Associated Steatotic Liver Disease) the new name for NAFLD. This news was a devastating blow as I felt I had broken my promise. I was also made to feel that it was all my fault, for eating the wrong food, and too many sweet things.
I’ve since found out that this condition is becoming increasingly common in post-liver transplant patients, after five or more years. Especially those who had become insulin-resistant diabetics, pre-transplant. It would appear that the tacrolimus anti-rejection medication alters the way the Hepatocytes in the liver process sugars. This in turn can lead to a buildup of stored glucose which is later turned into fatty acids. Tacrolimus can also bring about Hyperlipemia which is also known as high cholesterol or lipid disorder. this is a condition where there are abnormally high levels of lipids, like cholesterol and triglycerides, in the blood.
Another additional problem I’ve found is as many of you will know, our bodies need glucose as a food source for our organs and muscles. With the liver being the body's sugar factory, there is a hormone in the liver called the FGF21. This hormone turns off sugar cravings, but once again the tacrolimus may interfere with the FGF21 and cause it to be switched off, so a person can experience unusual sugar cravings. Which in turn drives the diabetes haywire.
Far more research into this is urgently required, so all that hard work by all concerned doesn't get undone.
At least I now know, that I’m not to blame for my MASLD and that it’s more likely to be a chemically induced response.
It would be interesting to see if others have also experienced this condition post-transplant.
Oh dear so sorry for your diagnosis how did you find this out was it a blood test or were you feeling ill? I've not seen my consultant for a couple ov years but I've got an appointment beginning of Oct should i mention this to him? Should i be worried about this can you die from it?as i had my transplant same yr as you and I've got a very sweet tooth take care pat
Many thanks for replying. My ALT blood reads had been high for some time, so the consultant decided to carryout an ultrasound. This showed up fatty deposits on the liver.
Alanine transaminase (ALT) is an enzyme that's mainly found in your liver. High levels of ALT in your blood may indicate damage or injury to your liver.
While it was easy to blame this on a poor diet, I deduced that this wasn't the case as post liver transplant I'd lost my appetite. I only eat one meal a day and that's in the evening and I don't touch junk food. My diet is pretty good, although I had suffered with sugar cravings in the evening.
From what I understand, it is rare for the fatty liver to progress to a worse state, i.e. liver fibrosis or cirrhosis. The following maybe of interest: ncbi.nlm.nih.gov/pmc/articl...
I had my liver transplant at the QE Birmingham. After every routine checkup, we are able to monitor our blood reads on the "My Health" channel on their website. When I noticed these high readings I brought it to the attension of the transplant coordinators. Although little information was given to me by the consultant, I had a discussion about this with two eminent hepatologists from the Royal Free and Leeds who both agreed that NAFLD is becoming increasingly common post liver transplant. However, I feel there needs to be more research into this.
I would wait and see how your next set of blood tests are. It should be noted that those people who were diabetic pre-transplant and who are still being treated are at a greater risk of developing this condition.
Hi. The MyHealth channel on the QE web site sounds interesting and very useful. I don't suppose you do, but do you know of any plans for other TX centres to take it up? e.g. Leeds
Hi Richard, Well .. what a very interesting post .I'm sorry to hear of your diagnosis but that was great that you noticed your ALT rising in the myuhb health portal, I always check mine each time I've had bloods taken at QE ,I always like to check on any significant changes
Hi, I had my transplant 7 years ago due to NASH cirrhosis, had a biopsy in 2022 as part of my hernia repair, as they have sight of liver they take a biopsy, results came back as mildly fatty liver, but my 'new' liver was moderately fatty when it was transplanted but in a better condition than my native liver. It's never been followed up. I've just started insulin as gliclazide wasn't working anymore. My LFTs are always normal, but they always were pre transplant. Hilary x
Sorry to hear you have NAFLD again, just to clarify you have been eating too much sugar/sweet things or is this what the team have said is the cause of your NAFLD since they are not always right.
I'm not good at reading between the lines and I don't go in for sugar coating things, I hate when my medical team don't give me the full story and try and gloss over the negatives.
I presume you have been monitoring your blood sugar levels for your diabetes? I just want to know whether the sugar cravings you have experienced are because of your blood sugar levels dropping too low and then your eating sweet things to increase your blood sugar levels, I have found that my blood sugar readings are no longer that accurate since my transplant, it's almost looks like my diabetes is cured on paper when they do my avg, but day to day there is a lot of fluctuation.
My transplant team have been trying to wean me off Tacrolimus and replace it with Mycophenolate, got it down to 3 mg per day, 2 in the morning 1 in the evening and 500mg Mycophenolate twice per day, when they tried to drop it further and increase Mycophenolate to 750 I started to become slow and confused, unable to drive so they switched it back.
Am curious to know what dosage of Tacrolimus you are on?
Hello Fides, I have always believed that if you can understand why certain things happen, it can give a person a form of mental acceptance and closure. It’s when we don’t know, that the query is left hanging in the air, and can turn into a worry and encourage people to turn to Google which can ultimately cause anxiety and fear.
I appear to have developed a sweet tooth following my liver transplant.
For years I used to laugh this off.
If ever you have to go up to the QE Birmingham by train you’ll need to travel from Birmingham New Street to Redditch. Two stops down the line is the University. If you were to stay on this train for a further two stops, you’d arrive at Bournville, which as everyone knows is the home of Cadbury’s. I knew that my liver donor was a local man, and so I told myself that he probably was Cadbury work and I got my sweet tooth from him.
But seriously, my diabetes was treated as being both type 1 and 2, as my old liver had become insulin-resistant. I was on insulin injections pre-transplant, and I’m now treated as having type 2 diabetes, which is managed by the use of three different types of medication.
My tacrolimus dosage is just 1mg twice a day. I have known some people to be able to reverse their diabetes and beat it completely. However, my liver transplant was due to alcohol abuse, and there’s always a risk of damaging the pancreas which in turn produces a poorer quality of insulin.
It is believed that insulin is the signal that tells the liver to stop dumping sugar (glucose) into the blood system. If that message doesn’t get through, then there becomes too much sugar in the body.
I am now looking into the use of another drug called, “Semaglutide”. Also known as Wegovy. However, I need to find out how safe it is for post-liver transplant patients as I would never take anything that hadn’t been approved by a hepatologist consultant.
Thank you for explaining that to me, it helps to hear what others go through to be aware of problems down the road. Just sorry to hear you now have liver problems again. Just to clarify you are on 2 tac per day and no Mycophenolate?
Hi Richard, I’m nearly 5 years post tx and my last GP bloods put me into the T2 diabetes range. I have not gone to see the diabetic nurse specialist, yet as I’m waiting on my next hepatology appointment and I know they will give me the support and advice I need. had it in the back of my mind, I was now a higher risk of diabetes, however did not have it pre-tx. Very interesting as I too have been working hard to eat well, get fitter and look after my gift 🤔
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