Newly Diagnosed: I was told i had... - British Liver Trust

British Liver Trust
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Newly Diagnosed

Mitmab
Mitmab

I was told i had cirrhosis of the liver after a fibroscan in November. I have since been sent for a MRI scan and more bloodtests but wont see a Dr till end of February. I have been googling to see what LSM 29.9 kPa with possible portal hypertension and a thrombocytopenia platelet of 118 means. I know it is not good but cant see what fits into what stage. I know you are not doctors but all these terms are new to me and it all gets so confusing the more I research

29 Replies
oldestnewest
Hidden
Hidden

Hey Mitmab. Firstly what was the cause of the cirrhosis?

Mitmab
Mitmab
in reply to Hidden

Hi, Mainly drinking too much wine plus a low immune system, and diabetic

briccolone
briccolone
in reply to Mitmab

Hi and welcome - it would be interesting in 6 months to redo that fibroscan once you’ve stopped drinking completely- you might be pleasantly surprised by the results.

Hidden
Hidden

Ok well LSM means liver stiffness median. It's a measurement given that tells how stiff your liver is. They then use that score to correlate it with a level of fibrosis or scarring. Sometime though the score can be skewed a bit if you have inflamation going on in your liver. Portal hypertension is what happens when the liver becomes stiff and pushes on the veins in the liver or when fibrous tissue blocks the veins up. The portal vein is the big vein that many of your organs dump blood into so that it can be sent to your liver to be cleaned and detoxed. The portal pressure can also cause your spleen to swell up a bit and that causes it to trap some of your platelets inside of it resulting in the thrombocytopenia. What also can happen is that the liver slows its production of the proteins involved in making platelets also resulting in thrombocytopenia. The good news is that you sound quite compensated. Meaning your liver is adjusting for the damage. The other good news is that with alcohol induced cirrhosis you can do what folks on here with other causes of cirrhosis unfortunately cannot do and that is remove the cause of the liver damage. It may take some time for the "dust to settle " meaning you may see things getting a tad worse before they get better. The reason for that is because keep in mind that like when you cut your hand and then put the knife down further damage is stopped but it will take time for the wound to clot scab and it will make a scar. Though the scar maybe looked at as worse no further scars will happen. Make sense? Also the liver does have the ability to remove scar tissue. If you stay off the alcohol and eat well. It is completely possible that a regression in the scarring and an increase in the liver function will happen. It WILL take time though!

I hope that helps.

Mitmab
Mitmab
in reply to Hidden

Thank you, that all makes sense, I am cutting down the alcohol and hope to be off within the next two weeks. Thank you for taking the time to reply.

Hidden
Hidden
in reply to Mitmab

No problem. I'm glad I could help. My liver disease is also alcohol induced and I cannot stress how much stopping it is imperative. At the stage your at literally every drop of the stuff will further the damage and you dont want to become decompensated as the things I mentioned will no longer be possible if it gets to far. If you need help stopping then please reach out and the folks here on the liver trust can give you alot of help getting into somewhere to detox and keep off of it. I wont lie and say I dont miss alcohol but death as a result was not a option for me. As a member once put it on here " I'd rather die with alcoholism than because of it". Always here to help but you have to be your number 1 ambassador of your own health.

Hidden
Hidden
in reply to Hidden

Spot on Phoenix!

Hidden
Hidden
in reply to Hidden

Brilliant replies Phoenix to Mitmab!

Hidden
Hidden
in reply to Mitmab

Hi and welcome here mitmab

Firstly an unusual tag. 😁. Brett11 has a post where he asked people to put the rationale behind their tags - have a look it’s quite entertaining 😁

Now what I say following is my view and is not advice in any way, because as everyone knows, I know nothing except my own experiences.

I tried to stop drinking by cutting back several times and each time was a complete failure. You, I’m sure, know the urge to just have another one, it won’t hurt 😑. But of course it did and I was soon back to the normal totally overindulgent me 😧. Until - the consultant said stop drinking or you know what. I did know what and I did - stop drinking 😁. I didn’t have any support except my wonderful wife who joined me in no alcohol 😁👍. I’m not saying don’t get help it’s just that I’m not that sort of person!

So maybe give up completely (not advice!)?

Another thing is - please oh please - don’t get het up about value this and value thst. It won’t help you at all but may well get you stressed out - honestly - I’ve seen it on here loads of times. Of course ask questions of the medical “experts” if you need to but the summary is all I went with (in fact I was never never given a single piece of numerical data until about 2 months before my TP.

Good luck!

Miles

🇧🇧

Mitmab
Mitmab
in reply to Hidden

Hi, Mitsy(mit) and Mabel(mab) are my two golden retrievers. I do plan to come off the drink but was told to reduce it rather than just stop as it might send my liver into shock to just stop. Thank you for you response

Hidden
Hidden
in reply to Mitmab

Ahh that’s nice mitmab. We used to have a labrador but since we live in a small house I was told NO. So we ended up with a cockapoo- don’t regret it at all but find myself slightly embarrassed going out walking with her as I’m 6’2” and she’s tiny 😁

No-one has ever told me about liver going into shock! A quick google (I know I shouldn’t but...) talks about hepatic shock but nothing from what I can see caused by giving up alcohol. As I know nothing I’m probably talking rubbish! Who gave you that advice, if I might ask?

Good luck

Milex

Mitmab
Mitmab
in reply to Hidden

the liver nurse who did the scan and my GP said the same

Hidden
Hidden
in reply to Mitmab

OK thanks well you live and learn. Good job I wasn’t told that otherwise I wouldn’t have successfully stopped by just stopping 😁

Miles

Roy1955
Roy1955
in reply to Mitmab

The "shock" is if your a full blown alcoholic and dependant on alcohol.

I was diagnosed with about the same scores as you and for the same reason (alcohol)

I insisted my Dr put me on an at home detox regime (librium tapered over 8 days) and that dealt with any potential "shock" withdrawal.

It takes a lot of work and resolve to quit but it's a life saver.

I am now 22 months on and all bloods are normal.

I am living with cirrhosis, not going to die because of it.

Hidden
Hidden
in reply to Roy1955

Perfectly put Roy and your last statement was exactly the point I was trying to get home with the quote :)

Roy1955
Roy1955
in reply to Hidden

Exactly!

Nobody knows what drink is going to turn a compensated liver into a decompensated one.

It might be the one sitting in front of a person that's cutting down right now.

Not worth it!

Hidden
Hidden
in reply to Hidden

Well written Miles! Wish my ex husband had access to this forum many many years ago who is no longer here due to the drink unfortunately !

I too wish Mitmab Good Luck and lots of Strength!

Slaines

Hidden
Hidden
in reply to Hidden

It really all depends on how the body reacts to withdrawal. Some people get mild to non noticeable symptoms from quitting alcohol cold turkey while others get what's known as the horrible " DT's" properly known as delirium tremens which is basically the shock they are referring to. Delirium Tremens can rarely cause coma and death but in alot of cases it causes hallucinogenic type effects similar to having scarlet fever while being on LSD. The sort of "there's bugs under my skin kinda stuff" and makes you quite sick. Noone knows if they will have the easy road or the hard one (or the middle one etc.) when detoxing until the are in fact detoxing so doctors will always recommend doing it the safe way. Again it doesnt happen to everyone but for those it does it's not a fun ride. I did not have that happen to me personnaly because I was detoxed by proxy while being in the hospital with alcoholic hepatitis but I have witnessed it happen to a couple people and they certainly seemed to want off that ride pronto.

Warrior1
Warrior1
in reply to Hidden

I've had DT's twice and similar to the gates of hell opening up. Alcohol addiction was so powerful that even having experienced it once, i relapsed, stopped only for it to happen again. I surely was close to death. I can't begin to explain the horror of what it was like, lasting whole days. The first time it happened, i thought stopping will be tough - sweats, muscle cramps etc - for a few days like previous times cold turkey, without too much happening. Then i didn't know/think about DT's and it was scary as hell. With grace/AA, i'll be sober 2 years in two days time. Somehow, i wonder now how the hell it all happened as the cravings disappear more every passing day. I helped alcoholics close to me, often for many years clearing different homes of bottles and swore that'll never happen to me. Somehow it did, many years later after a history of 'can take it/leave it/not bothered'. I was told 1 in 5 die from DT's by a doctor which would make it common enough. Prescribed librium preferably in a detox facility is the way to go. How i finally stopped. Liver damage from alcohol is reversible as we all know if not cirrhosis. I'm just a very happy person to have found a new life without it. Coffee, exercise if possible (walks), fruit/veg more of, and in truth, there's so much more to do in life without booze. Concerts, museums, photography as a hobby, walks if possible, meditation and if AA, meetings/12 steps etc. Just a question of reconditioning of lifestyle/activities/hobbies. Sobriety is so important in pulling back from the brink. For me, it's life or death. I know of so many people who picked up again and didn't make it. AA works for me. It's a real opportunity to avoid disaster to stop if these red flags are raised by doctors. It can mean a new life back to good health. A good gang on here for ARLD but so many also to respect who suffer from NARLD. That's a tough call.

Radnor
Radnor
in reply to Hidden

Thank you for such a clear explanation. There are so many potential add-ons to Liver damage, this and others are asked about on holiday insurance.

AltAstRaised
AltAstRaised
in reply to Hidden

Hi Phoenix...can you explain how it gets worse before better? My ALT/AST numbers went from 60/40 to 154/79 then back down to 54/41 over a 7 month period with no alcohol. Wonder if that could be sign of cirrhosis scars "healing"? Appreciate anything you can offer - I am new to all of this!

Hidden
Hidden
in reply to AltAstRaised

Worse before better meaning that when the insult is removed like alcohol by abstaining or hep c from being cured as examples, the liver will likely develop more scarring than it had at the time the insult was removed.

Remembering cirrhosis isnt the disease. It is a consequence of the healing process the liver endures from the disease. For example lets take alcoholic liver disease (I am aware that isnt your reason for liver disease judging by your alt/ast). If a person has raised liver enzymes which would equal that there is active inflammation and they quit drinking.. the liver enzymes will eventually fall into normal range but, it doesnt happen the minute one quits drinking. Even after a person quits drinking the liver still needs to heal that current damage and what ever new damage gets incurred while the liver enzymes are still elevated because the liver is still actively inflammed. So if a person was say in an F3 category of scar tissue when they quit drinking, they could possibly end up in the F4 (cirrhosis) category by the time all the damage is healed and the enzymes have settled. It all depends how much scar tissue accrues in that healing process. This is the "dust settling" stage. It could take a few weeks it could take over a year. Everyone is different. Some people will precieve this process as the liver disease progressing when in fact it is the "fall out" of the damage that was inflicted previously. Sort of the same way you dont get a scar on your skin immediatly after you remove the knife that cut you. The wound heals over time and a scar appears.

Once those embers burn out then we can say that the liver disease is no longer "active" and it should not progress further or become reactivated as long as the previous insult (or a new one) is not reintroduced. In this example we used alcoholic lover disease so it would be if the person starting to drink again.

When we say healing, we think healing from cirrhosis. To reiterate cirrhosis is the result of healing. The word to be used for when the healing is done and the possiblity that some of the scar tissue can fade from the liver is "regression". If or not cirrhosis can regress and to what degree it will is hugely dependent on the persons genetics and other biological factors. It has been proven that cirrhosis can regress to a precirrhotic stage when the insult is removed but this has been an over many years length process in all studies documented. However, the word regression is to not be used interchangeably with the word reversible. That is very key importance because currently Cirrhosis is NOT reversible, it has the potential to be regressive but not reversible. Early stages of liver disease like fatty change and F1-F2 are considered to be actually reversible but too much damage has been incurred by the time cirrhosis results for it to be reversible. In 2019 anyways. The future is always hopeful in that regard of course.

I hope this helps you inderstand a bit better what I meant in the previous messege.

AltAstRaised
AltAstRaised
in reply to Hidden

It was very helpful, Phoenix. Really appreciate the response. That was more detail than I have been able to get from any doctor so far. As I stated, I am new to this. My elevated enzymes were discovered during routine blood work in November, which led to many negative blood tests, to ultrasound/MRI/MRCP showing dilated bile ducts, but no observable obstruction. Going in for endoscopic ultrasound today...

Hidden
Hidden
in reply to AltAstRaised

Anytime glad to help!

Do you have any symptoms ? as these only appear usually in the later stages of advanced disease .

Mitmab
Mitmab
in reply to Countrywalks

I have pain in my upper right quadrant, very tired, sudden hot sweats, itchiness at times, scratches etc bleed a lot, also on antibiotics for a sudden gum infection that appeared, very swollen stomach and feel sick at times, these might not be related to liver but I don't know

Countrywalks
Countrywalks
in reply to Mitmab

Yes i think the upper quadrant pain is common i have that it can wake me up in the night .also get over heated and fast racing heart in the night .i think bleeding is maybe low platelets and infections are common due to low imune system .i get fungal rashes they keep coming back even if you treat them .tiredness is common if i go to the supermarket i come back totally exhauasted and go to bed to rest .judy

Hi Mitmab. I had upper right quadrant pain, fatigue, itchiness, mouth infections requiring antibiotics, nose bleeds, swollen legs and feet, I also bled easily. I had all of these for several years before transplant. I think that most of the things mentioned are common problems with a poorly liver. Wishing you all the best. Alf

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