I had a long consultation with my doctor this morning and we talked about the blood tests done on 15 September. I don't have a copy of all the results, because there were so many of them. However, the liver function test results were as follows:
Albumin: 48 g/l (normal range: 30-50);
Total Bilirubin: 7 umol/l (0-21);
Gamma GT: 70 U/L (8-61) (had been 121);
AST: 23 U/L (0-40) (had been 96);
ALK Phos: 84 U/L (30-130).
He showed me the results from the full blood count and clotting test and everything was normal.
I asked him why there was no ALT figure. He said it is not routinely part of the LFT and is only requested if serious liver disease is suspected. Apparently, I have never had it tested. I was disappointed that I don't have any ALT numbers to go on, because I know that it is liver-specific.
I told him I was very concerned because of the bouts of heavy drinking, the medications I'm on, the symptoms I've been having, and the fatty liver diagnosis from the ultrasound. I also said I was worried that the liver enzymes were reducing because the liver wasn't functioning and so wasn't able to produce any.
He told me several times that I do not have cirrhosis or advanced liver disease. He said that, if I had advanced liver disease and enzymes like AST and GGT were not being leaked into the blood any more, other tests such as albumin , bilirubin, clotting, platelets, etc, would be abnormal, whereas they are completely normal. He is a friendly doctor, but was really quite adamant.
He thought the hair changes were hormonal, and did mention checking my thyroid function, but then we moved onto something else and so that didn't happen.
I guess I should feel reassured, but I still just don't feel well and still find it hard to believe that "just" a fatty liver would be the cause of this.
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GavBelfast
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Yes, I know, Mister X, but I was merely relaying worries to the doctor because I'd read about people having cirrhosis but normal liver function tests. I prefaced it by saying "I'm sure you think I'm crazy", but he was understanding and explained things to me very well - as you had previously done - so thanks for that.
He also gave me a print-out of liver function tests going back years (I've had these done for a long time because I've taken a statin for a long time). Even then, while my drinking was moderate, the values were all over the place (though within normal ranges - which I guess is why there are ranges to account for all sorts of different reasons for fluctuations).
I just wish we hadn't gone off the subject again when he raised the issue of getting my thyroid function checked (this was after we were talking about the hair thinning). My mother and sister have both had thyroid issues, and it could explain some of my symptoms. It's not something that I would be worried about as it's easily fixed, but if it does need to be fixed it could help help to make me feel a lot better.
Sorry I wasn't trying to be abrupt - just to the point.
"Even then, while my drinking was moderate, the values were all over the place (though within normal ranges - which I guess is why there are ranges to account for all sorts of different reasons for fluctuations)."
Good thing they were fluctuating. The only time they don't is when you're dead - and then you'd be the last person to know. It's a working system so the values should and do vary.
I didn't think you were being abrupt, don't worry about that.
Interestingly, the Albumin and Bilirubin values have been inside normal ranges in every single test result that I saw. I've also taken heart from the clotting tests and platelets numbers being right in the middle of normal ranges because I was really worried about the bruises that appeared suddenly a few weeks ago
I do just wish that I knew what the AST was to complete the picture, but that's just not possible.
Anyway, I'm sure I'll still worry about this for a while - it's my nature - but I certainly feel better about it all than I have done for a few weeks.
Oh, and thanks, Mister X, for your time, reassurances and explanations (so far!) over recent weeks.
Not a problem, hope it helped and more importantly I'm very pleased about your results.
My best guess would be that the increase in AST was a direct result of the effect of the alcohol on cells throughout your body - especially muscles - rather than an indicator of liver cell damage and especially in the context of weight loss.
The other numbers are very good indeed and indicative of good liver performance so regardless of the AST blip it looks like you're good to get on with the rest of your life.
In isolation they wouldn't tell you all that much - and in combination with all the other information you have - which is much more important - ALT wouldn't tell you all that much anyway since the rest of the numbers are overwhelmingly good.
"Its not something that I would be worried about as its easily fixed"
Err Gavin thyroid disease can be incredibly difficult to fix, sadly for many people the replacement hormone med doesnt work and the medical profession are generally not interested.
I think you should have your thyroid checked. Mine was super high at one point and I felt horrible. I was really surprised at how much your thyroid gland can affect your body and mind. Congrats on having a healthy liver.
Yes, well, the doctor actually raised this and pondered if it had been checked, but we then started talking about something else and never got back to it again. My mother and sister both have thyroid issues, so it would be no surprise (though obviously it doesn't have anything to do with the excessive drinking).
I suppose I need to see if I feel better over the next week or two and, if I don't, I'll go back and get it checked-out. I'm sure my doctor's surgery is fed-up looking at me, but thank goodness for the "free" NHS!
Just to let you know, I had bloods taken to test thyroid function on 25 September. I spoke to my GP yesterday and he said the tests came back normal. I also had prolactin levels checked and these were also normal.
Thanks for your advice and concern, but it seems it has been / is all down to the liver. I had more bloods taken yesterday to check for iron and copper overload, Hepatitis and some other things (I had 6 vials of blood taken - the nurse taking the blood said that, if I keep on going, I will need a transfusion!!!).
I felt so unwell (weak, dizzy, no appetite, muscle and joint aches) on Monday that, in the early evening, I called the out-of-hours GP and told him how I was feeling and the background. He said I should go to hospital.
So, I went to the hospital and provided blood and urine samples and the doctor gave me a physical examination. He said he couldn't feel the liver (he said that's as it should be). Later, he told me that all the samples tested normal (complete blood count, liver function tests, lactate), including for diabetes, anaemia, etc, but he could see that I wasn't well.
He alarmed me a bit when he said there is "maybe a touch of hepatitis"(?), but didn't pursue the point, and neither did I. He said I should see my GP again as soon as possible, and come back to the hospital if I felt worse.
I am still losing weight. I got my hair cut yesterday, and my regular barber commented on how much thinner my hair seemed. I'm also concerned that, despite the weight loss, I seem to have more obvious 'breasts' and they feel like more than fat.
I still have this worry (or just don't understand how it would work) that my liver function tests have returned to normal (or near normal in the case of a GGT of 70) because my liver is badly damaged (and I do mean damaged - not inflamed) and does not have enough functioning cells left to leak into the bloodstream. I have read plenty of stuff about people with cirrhosis who have normal liver function tests.
I know this is all self-inflicted, but I just feel like I am in limbo. I feel unwell and continue to have no appetite/lose weight, but, because a physical exam and all blood tests are now normal, doctors aren't concerned.
"I still have this worry (or just don't understand how it would work) that my liver function tests have returned to normal (or near normal in the case of a GGT of 70) because my liver is badly damaged (and I do mean damaged - not inflamed) and does not have enough functioning cells left to leak into the bloodstream"
Sorry to hear this.
I can't say I can understand how you can be in a position where you have so few working liver cells that there's no leakage of enzymes into the bloodstream , but they're still managing to process bilirubin, keep your liver a normal size, not show up on an ultrasound, produce blood clotting factors, proteins, albumin etc etc....
All without any jaundice, ascites, oedema etc etc.
So if not liver cells doing this work then what is? Actually don't answer that.
Here's your situation. You are getting advice from trained medical professionals that you don't like based on your google research and how you're feeling. That's your prerogative. You are then asking the medically untrained on this forum for observations on your opinions on the answers you are getting. The most you can reasonably expect is that if you ask a question that rings a bell with someone that they will say "ask your doctors about......." They have said that and you have asked and been answered.
....that does not mean you are going persuade someone to come out and say well not only is black now white but you should ignore your doctors who say it isn't and demand they agree that it is.
Hopefully in all of this you're not missing something that is not liver related and can be fixed nor exacerbating your fatty liver issues.
Sorry if that sounds a bit blunt, but from the liver point of view here I can't see what help I can be although I certainly don't mind the chatting.
Logically and this may sound blunt - you now only have one thing left to do, liverwise that is;
Decide from your research what the doctors need to do and then persuade them to do it.
Thanks, Mister X - and I'm obviously glad that you don't mind chatting.
I do think I need to get my thyroid checked, but my doctor won't treat that as urgent.
I don't have diabetes, and my kidneys were fine on the ultrasound and their function has been OK in blood tests, so not sure why I've had a little blood in the urine. I have had discomfort in the whole pubic/pelvic region for a while now, but the doctor in the hospital checked that out on Monday evening.
So, I'm at a loss. I know my anxiety is not helping, and I know there's some guilt about how much alcohol I was self-medicating with at times over the past 5-6 months and it must have been very hard on the liver - well, we know it was from the LFTs during and soon after such binges, and from the ultrasound.
It's coming up to 4 weeks now since the drinking stopped. If I started to feel better again, got my appetite back, better energy, wasn't losing any more hair, etc, it would reassure me a lot. In the meantime, I'm just waiting.
As you have mentioned it to us I presume you told the hospital you had blood in your urine? Did they test a urine sample a d find blood in it while you were in hospital having the other tests?
No, there was no blood in the urine or any infection in the sample I provided at the hospital. I haven't noticed any sine, either, though I do still feel considerable discomfort in the whole pelvic region.
Well thats good news. I expect there is no blood in your stools either. If there was I would think it more likely to be haemorrhoids than anything more sinister. I remember a poster on the Hep C forum I used to moderate who was panicking they had blood in their stools and then they remembered the raspberries they had eaten before
This general 'ill' feeling - like flu, but without the cough and runny nose - continues and I'm now having mild diarrhoea (and worried that I am passing small red blood clots) and also have some small red blotches that look like burns, but which blanch when I press on them, on my thumb and beside my navel. I am also worried about 'breast' tissue.
I have made an appointment to see a GP tomorrow - I couldn't get to see my regular one.
I know my anxiety is probably making my situation worse, and I am hyper-sensitive to every twinge or anything that looks a bit different, but I can't go on like this.
I saw the GP this morning and told her how I was feeling and continuing symptoms (thinner hair density, tiredness, weakness, dizziness, lack of appetite and weight loss, aching bones, muscles and joints).
We talked about the liver again and she again said that, apart from fatty liver, I do not have liver disease. She said that just wouldn't be the case with liver enzymes quickly returning to normal and all other aspects of the liver function tests, full blood count and clotting tests being normal, including a platelet reading of 387,000.
She also examined my chest and said the 'breasts' seemed to be just fat.
It turns out that my thyroid function was checked last November, and was normal, but she said it would be worthwhile to check it again and also my prolactin levels (not entirely sure why).
I still can't get it out of my head that my liver enzymes have never really been that high, even during or just after the peak of my drinking. Last week, my regular doctor told me that he had seen GammaGT values over 1,000 in a few patients, whereas the highest mine has been is 121. I'm sure my doctor told me what he did to reassure me, but, instead, it's what got me thinking that those with GGT readings in the hundreds or even over 1,000 had plenty of healthy liver tissue to be inflammed and leak lots of enzymes into their bloodstreams, whereas my liver was/is already compromised and that's why, at its peak, I only recorded 121.
If I'm being stupid or irrational or downright crazy, just say so!
You'll have gathered that I don't tend to just be told something and accept it. So, even when medical professionals tell me "you don't have cirrhosis" and not much else, I find it hard to accept.
As you have gathered, I have always been one to question things and have an over-analytical mind, and that's what's happened here.
However, I had not started to feel unwell in August, I would probably not have joined this forum. It honestly didn't occur to me that "only" several months of drinking could cause me liver problems. Also, I never thought about the added danger that prescribed medications could be having.
So, that's why me not understanding or rationalising this issue of only modest GGT elevations being better than much higher elevations is troubling me. I just have it my head that, despite really heavy alcohol intake for the previous week (last week in July), my GGT was "only" 121 a few days later. I'd have thought it should have been in the many hundreds, hence my concern that the liver has few functioning cells left to leak enzymes that would measure into the hundreds as it would if all or most of it was still functioning properly. So, Mister X, can you explain the science? It would be good of you if you could.
Finally, in case I forgot to mention it, the GP arranged blood tests for checking thyroid function and lactate levels, too.
I really don't know where to start. I'm almost lost for words - which trust me is very rare...
"So, even when medical professionals tell me "you don't have cirrhosis" and not much else, I find it hard to accept."
Apparently.
But "....and not much else" is completely disingenuous. How many times have you seen doctors in the last few weeks? How many posts and replies have there been? You should read your posts - you set out their explanations quite well.
In a nutshell - the answer is very very very simple.
THERE IS NO EVIDENCE that you have cirrhosis.
THERE IS NO EVIDENCE that you have ANY fibrosis.
THERE IS EVIDENCE that you have/(possibly had by now) fatty liver.
"As you have gathered, I have always been one to question things and have an over-analytical mind, "
The trouble is that you're not being analytical at all. You're randomly mashing facts together to try to fit a conclusion you've jumped to.
An example of what you're calling analysis.....(You might benefit from re-reading the posts).
You WERE concerned that your HIGH AST reading and HIGH GGT readings meant you had cirrhosis. Fair enough - unlikely, but go and ask your doctor everyone said. You did. doctor said all was fine.
THEN suddenly
You were concerned that your NORMAL AST and REDUCED GGT indicated so few working liver cells that these enzymes were no longer being released into the liver.
Are you suggesting that IN THE COMPLETE ABSENCE OF ANY SYMPTOMS OR COMPLICATIONS of end-stage liver disease that your liver crossed from a compensated state to a late decompensated state of cirrhosis without any explanation in your mind for the COMPLETELY NORMAL functioning of said liver as evidenced by NORMAL BLOOD CHEMISTRY and COMPLETE ABSENCE OF COMPLICATIONS?
And does this mean that you're now taking the position that everybody with normal blood chemistry and lack of typical liver symptoms and complications but who otherwise feels unwell may have cirrhosis?
Everybody? Seriously?
Additionally have you noticed you have now focussed on GGT and have more or less stopped mentioning AST now that it's normal.
Re: GGT.
Isolated rises in GGT are not significant. GGT in an amino acid used in various processes throughout the body. GGT levels often rise. It is not an enzyme that is useful as a single lone accurate marker of exactly how much alcohol you've had. This article is quite useful to explain the diagnostic irrelevance of a raised GGT.
In your case, very simple. The GGT was in line with your other blood test results. All of which indicate - as several doctors have told you that you do not have cirrhosis.
Anyway, as I mentioned in a previous post I don't think I'm really helping you much - and this is much less chat than you looking for openings in your own mind to keep the notion alive in your head.
One thing though, Everybody can have issues with their doctors and not all doctors are perfect - which is why a forum like this can be helpful to compare performance. From everything YOU have said you're being really unfair to your doctors who have already spent a great deal of time explaining properly and honestly to you what the evidence is telling them.
The bottom line as I said before is for you to decide what it is you want done next and then persuade the doctors to do it.
Although it still beats me what difference it will make to you though given that there are no treatment options.
Hope you don't mind my being direct. I don't mean to be unkind but this poor well deceased horse has been well and truly flogged.
Thank you, Mister X, for your long and thoughtful reply and the link. I hope you are enjoying the rugby - hopefully Wales can make the opportunities to attack a bit more for the rest of the match. (I'm an Ulsterman, but try as far as I can to be neutral when England are playing!) Owen Farrell's selection looks to have been vindicated so far.
I really do appreciate your patience with me and have kept asking questions and having things running through my head because I have never had a problem like this before.
I was taught to have a questioning mind and it's always tended to be over-analytical - that, of course, does not mean the analysis has always been true, correct or rational in the first place!
I DO keep trying to draw on the plusses of my situation: good blood tests (the doctor in the hospital on Monday said everything was normal); medical opinion, based on the blood tests, that it's not cirrhosis; no liver felt during physical examination (doctor said this is how it should be); ultrasound didn't show anything wrong with common bile duct, portal vein, gall bladder or spleen, or liver apart from it being fatty; no abdominal swelling or fluids; no pale or black stools; no dark urine; no oedema; no bleeding (though I keep fearing it); no bruises currently; no red palms; no yellow skin or eyes; no red palms; no white finger or toe nails; able to walk 7 miles yesterday with little difficulty.
Then, there are the negatives: tiredness; slight weakness; pain in joints, muscles and bones - not relieved by simple painkillers; poor appetite and continuing slow weight loss; thinner head, facial and body hair; small red marks (like burns) on parts of my body (this is a new thing); oily skin and sweat. I didn't have any of this two months ago.
No one wants to have a condition, but, if the thyroid function test shows something not right, it would explain a lot, and could be fixed (with trial and error) - not long to wait to see.
First of all, my thyroid function and prelactin levels - bloods were taken last Friday - were normal.
Then, we talked about my visit to A&E when I felt very unwell the Monday before last (nine days ago). She showed me all the full blood count and liver function tests were now normal, including:
AFP: 77 (30-130);
AST: 34 (0-40);
GGT: 54 (8-61);
Albumin: 50 (35-50);
Bilirubin: 6 (0-21).
He said these reflected the absence of inflammation and my liver recovering. I again floated my worry about enzymes never being that high being indicative of the liver already not working very well, but said to him to tell me it was "nonsense" if it was, so he said it was "nonsense"!
He said the doctor in the hospital had, however, written a lengthy report because he could see I was feeling unwell and suggested several other blood tests to the GP - that's after he had said to me about "maybe a touch of hepatitis". So, I had six vials of blood taken this afternoon for further tests including Hepatitis, iron and copper levels, and some of other that I could not make out.
I asked my doctor how I would know that the fat was reducing in my liver. He said that should be happening now and they would just measure it with regular liver function tests (assuming the new tests were negative, which he said he was sure they would be).
I also asked him how, if my liver was so fatty, the radiologist could see under the fat to see if there was anything worse wrong. He said that the fat infiltrates the liver, rather than surrounding it in fat, so that should not happen.
The good news is that I've actually put-on five pounds in weight in the last 7-10 days, reflecting a better appetite.
So, it was a generally productive afternoon at the doc's.
Gavin.
Oh dear 😘😘😘😘 dear mr X is going to bop me over the head 😅😅😅 but !!!!!
My hubby said for 9 years he was ill - and we had him all labelled as a 'hypochondriac' he went to GPs for anything and everything because he kept saying 'I KNOW MY OWN BODY AND SOMETHING ISNT RIGHT' - in the end he was correct !!!!! So if we had to do it all over again (and I was a practicing Reg Nurse back then) as far as 'livers' are concerned - the only thing I would of demanded would have been an 'endoscopy' (camera down throat thing) - despite deranged liver tests its wasn't until he eventually had an endoscopy that we knew how poorly he was !!!!!! As it showed 'portal gastropathy and oesophageal varices' as well as cirrhosis !!!!!
Perhaps saying to yourself 'right I am going to ask for endoscopy and if that comes back normal then everything is ok and I am going to forget about liver disease' might give you some relief 😘😘😘😘😘😘 good luck Hun xxxx
The whole point of this place is to share views - mine aren't worth any more than yours.
One thing though, you refer to "deranged liver tests" in respect of Rob.
Gav's liver tests have been completely consistent with various doctors diagnoses. He drank enough to put himself in hospital and at this time and shortly after he had a slight blip in his AST and GGT levels - which is completely consistent with alcohol abuse.
The blood enzyme levels normalised once he stopped drinking and have stayed normal since. It's been about 7 weeks since he stopped drinking and a few here suggested that it would take about 6 weeks to start to get over the alcohol and withdrawal - which is about now. Gavin's concerns started (here anyway) about a week after his last drink.
Personally I can't see how an endoscopy will help him given that there's no evidence at all of any liver problem. His blood results are actually very good.
Also and more importantly I can't imagine his doctor ordering an endoscopy - unless of course he wants to get his own back on Gavin - I can't say I enjoyed mine (I'd prefer to have both liver biopsies back to back and watch Man Utd winning the league at the same time! Which is saying something).
Anyway, certainly something for Gavin to consider especially if there are parallels between Rob's symptoms and Gavin's.
Cheers,
PS
If you haven't read Gav's entire story I've added the links below in order only because while I may be coming across a bit firmly in this thread it's based on the prior discussion.
Sorry - only read the last few (that will teach me) 😋😋 just found it strange how similar everything sounded - blood in urine/being tested for haemachromatosis etc - rob didn't drink though and we discovered he had hep c !!!!!
Following many scans/blood tests etc prior to being offered treatment - cirrhosis wasn't even mentioned 😥😥 Rob told one of the Hep C nurses he had a bit of 'acid/heartburn' type pain in tum - so they said they would do endoscopy to rule out an ulcer !!!!!! Thats how we found out about cirrhosis etc xx
I am not suggesting that gav has same - just coincidental - I know how easy it is to 'diagnose from Google' - just wanted to say that sometimes - despite being told everything's ok (like my Rob was) if you feel something isn't quite right then persevere - in Robs case - I got his GP notes and found 9yrs worth of abnormal LFTs 😢😢 - if I had been given the actual blood test results after each test - I would have spotted it before it got to cirrhosis !!!!! We were told bloods were 'normal for this patient' when they weren't 😡😡😡😡
Just as I was getting over my panicking and hyperchondria!
When I last saw my regular doctor a week ago, she showed me that all my blood tests - liver function and full blood count - had returned to normal.
I also had an ever more comprehensive liver panel done, and this showed that even the missing ALT figure had returned to normal (43) as had the GGT (44). The AST was now only 21.
My appetite and energy levels are basically back to normal, and the pains and aches have lessened. The only thing that's still slightly amiss is the apparently thinner hair distribution on my head, face and body.
I'm trying to move on from this, but would still say I'm sensitive to every twinge I feel or slight thing that looks different on my body. I had some small red marks on differnet places that appeared last week, but the GP gave me cream for them, and they've gone away.
When I asked the doctor what to do about the fatty liver or how I knew it would be going, he just said stopping the heavy drinking is the cure and the fat will already be disappearing. I just need to make sure I don't substitute excessive alcohol for excessive sweets and insufficient exercise!
Just in case the latest EASL advice from earlier in 2015 ... easl.eu/discover/news/new-s... ......isnt enough to convince that diet and exercise is what the medics agree is "what to do about fatty liver", here is a link to a recent US paper from the AASLD (the US equivalent of EASL)
The thing is, I could have had this "fatty liver" for years - much as I felt my alcohol intake was mainly moderate it, in conjunction with a statin taken for about 15 years, and other mds taken more recently, could all have been doing damage.
That said, since I stopped drinking heavily six weeks ago, the abnormal liver enzymes have returned to normal, the rest that were normal have stayed normal, my appetite is back, I've more energy and have put weight back on again.
In fact, the only thing thta still seems a bit different is that my hair density on my head, face and body seems less than it did 2-3 months ago.
Anyway, I've stopped panicking and largely accepted that my body/liver has recovered/is recovering,and I don't want to go there again!
Do you think its worth researching how to come off statins by changing your diet? Or have they said its genetic and unlikely you will ever come off them. Wouldnt it be great to get rid of a medication that you have taken for so long.
Well, Bolly, I don't think they seemed to be doing me any harm for perhaps 15 years, so I think I;ll leave them be. My cholesterol, etc, isn't even brilliant on them, so would probably be worse without them.
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