Sensible Advice from 1200km

Good morning good people of this forum, just lately I have been feeling sick, sometimes between meals but always about halfway through, now this rang alarm bells as this is how I felt leading up to my transplant in 2014, and some time after, we were living in St Jacques South of France at the time, I was being looked after by the exceptional Liver team at the Archet2 Hospital, Nice, about a month before this sick feeling restarted my UK Liver consultant saw fit to put me onto Atorvastatin for high cholesterol, now I have never had high cholesterol I queried the decision and was told its 'Just incase' Monday I tried to get an appointment with the Consultant, as you all know this has to be arranged through the Doc's I managed to get an urgent appointment for Friday 1st Feb, Well I thought bugger this and e mailed my Surgeon in France, we exchange e mails as we become very good friends, he is an Italian working in France, with a wicked sense of humour!!! He is also the French Team Leader, (Can you imagine me e mailing the head of the UK Liver transplant section?) His advise after the pleasantries? STOP find out why your on them and CHANGE your diet its usually an adverse effect involving Lipids get a blood test done and send me the results, (I have possibly lost something in translation) as from the first time we met it appears your Liver team are again trying to kill you!!

So my friends, what I am saying is please do not take what you are told as the proper way forwards, ask questions and do your own research, BUT dont go from healthy curiosity to death in three clicks of the Mouse!!!!!!!

March the 14th this year will be my 5th year with the use of a Donor Liver, when ever your anniversary comes round have special thoughts for your Donors family, as you celebrate they are sad.

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It makes no sense to prescribe Lipitor (Atorvastatin) to someone who has no history of high cholesterol & has had a liver transplant because a drug like Lipitor can have very unpleasant side effects including raising liver enzymes. The surgeon in France who gave you the advice to stop & find out why you are on it & get a blood test done and send him the result gave you good advice.

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Hello, yes he is an exceptional chap, I have always got on well with him and we do exchange more than the occasional e mail, I trust what he tells me without question, when I first saw him in France he was horrified at the amount and combination of Drugs I was on, with his help I was weaned off the excessive steroids and diuretics, with the comment 'we will let whats left of your liver cope with its job without having the added strain of totally over the top doses of drugs you cannot possible need'

But since being back in the UK in 2016 ive been pushed around different people as with the attitude, you should of stayed in France I appear to be an unwanted burden, not a good feeling at any time.

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This is a common misconception of once again treating the symptom and not looking at the cause. I have been down the exact same road as Jumbot. I too started to develop over-production of cholesterol. And, like you my GP put me on Atorvastatin. To me, this was just another tablet my post transplant liver was having to process and deal with. I then went on to discover for myself that the anti-rejection medication, Prograf (Tacrolimus) can cause increased levels of cholesterol. I am now 27-months post transplant and have spoken of this at my last 6-monthly checkup at the Liver clinic. Here the liver specialist has agreed with me, and has reduced my daily intake of Prograf. I am now taking 3mg a day. 2mg in the morning and one at night.

I am still awaiting to see what the overall impact of this reduction is. It should also be noticed that in post transplant patients – the medications used to prevent rejection can alter the way hepatocytes handle sugars and drive overproduction and release of glucose into the blood. Also patients with diabetic risks before transplant are more likely to experience it after transplant.

In my case, I suspect that post transplant my liver had become insulin resistant, now it could well be the Prograf causing the over production of glucose.

My logic here is that every tablet we have to take on a daily basis has to pass through the liver. We know the these drugs in themselves, can be quit harmless, but I suspect that taken them all at once as a cocktail, could cause other unspoken of side effects. I am presently taking two types of medication for Diabetes control. My theory is, that more harm can be caused long term by trying to treat these other symptoms and side effects individually, rather then finding the cause.

In my case, I am hoping that by reducing the amount of Tacrolimus I take will in turn reduce the need for other treatments. Which in turn can not only be more healthy for me, but also less of a burden upon our health service.

Good Luck, Richard

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Richard64, very well put, why is it the common man 'us' can see beyond just handing out meds rather than look for the cause? Very frightening, I stopped the statin last evening and today 36 hours since the last tablet taken the sickness is just in the back ground and I have eaten a meal without thinking is this going to come back. NAIL HEAD HIT I DO THINK

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Sadly our cultures expect there to be a pill for everything. For some, a visit to the Doctor, and to come away without a prescription, only means that the doctor is a quack, or has made a mistake.

I now have become more interested in understand my own body. I, like a lot of people go in search of answers from Dr Google. But even then, care needs to be taken. I personally wish that GP's and some doctors were more open and forthcoming when communicating with patients. I fear some just think, "There's no point me trying to explain, you wouldn't understand". So, people tend to go elsewhere looking for answers. You wouldn't believe the amount of people who publish their latest results and scores on here searching for answers and advice. For many this is a scary time.

There should certainly (in my opinion) more information readily available.

Good luck to you.

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Hello unfortunately I have become accustomed to the attitude of Doctors and patients in France, what ever tests you are sent for if the results are available immediately, you are told on the day, you are also given a copy on a DVD disc of MRI and other similar results, they go out of their way to ensure you understand what they think is best and the path forward, coming back to the UK and everything becomes a closely guarded secret, with little chance to talk through any problems, I have offered the results I have, ( I now suffer from severe Osteoporosis due to over prescribed steroids) to the bone crunchers but they refuse, one perticular Doc wanted me to go for a second lot of images as the first I had done in the UK were terrible, I insisted he looked at the dvd I had with me, done by the French he was in awe of the quality, I felt quite smug that he could of saved a lot of time and money by using the dvd I had in the first place, another example of the Doc does not know best,

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Once again, I totally agree with you. Many Many years ago when I was young and hansom, I went over to Lyon and stayed with a lady friend. I spent three weeks there. Before any grownup stuff took place she insisted on having an AIDS test on both of us. (AIDS was still in it's infancy back then). This was treated as being a most natural thing for adults to do. So, we both went to the clinic and I was surprised by the amount of like minded people who were there waiting to be tested it was all perfectly normal. My lady friend paid for the tests and the results came back in just three days.

The UK sadly seems to be stuck in the past when it comes to these sort of issues.

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The Surgeon in France is struggling to keep the transplant program going, (He is actually a Professor but hides his title) and as the French love their wine he has plenty of customers!! He says when he has to meet the management staff of the Hospital to literally plead for more money he is faces with in excess of 25 people, all with their fingers in the trough, the head honcho of the Nice Hospitals, his personal secretary, under managers who he can hire and fire due to HIS mistakes, and their entourage of secretaries and researchers, all NON Medical, he is in the sticky stuff at the moment as when asked where does he think he could make savings he politely told the head Honcho to look around at his staff, managers taking a wage and doing nothing but waste money seems to be Universal throughout the world.