Advice needed for very confused newbie.

[Orchardroad]

Hello I have recently been diagnosed with Decompensated ALD. I also have a very rare auto immune disease called Addisons. I have not drank for nine months. From my research DALD is stage 3 and pretty serious. So why do I not have any symptoms as in jaundice, itching, water retention, nausea, diarheea, etc etc. I have read some people do not get these but I would have thought at stage 3 different. I am taking Vitb strong and that lactose thing. I have not had biopsy or scans. I have not been referred to 'specialists'. When I see my go (a diamond with Addisons) it's never mentioned. Any advice would be great. Quite happy to answer any questions that may help.

[AyrshireK]

Who has diagnosed you with decompensated alcohol related liver disease & how have they come to that conclusion? Some symptoms of early liver disease co-incide with those of Addison's.

The very nature of the liver being decompensated is that it is struggling with the major jobs that the liver has to do and therefore you do get symptoms. Stage 3 & Stage 4 (decompensated) cirrhosis is designated as such because at Stage 3 Cirrhosis you would anticipate Ascites +/- Varices. Stage 4 cirrhosis is reached when there is Bleeding +/- Ascites.

Some doctors do confuse the issue by interchanging the terms fibrosis and cirrhosis too. There are 4 stages to fibrosis (F0-F4). The very last one stage 4 being termed cirrhosis then cirrhosis is split into 4 stage. Stage 1 & 2 are compensated (the liver is coping with it's major jobs), stage 3 & 4 are the decompensated states.

If you have a diagnosis of cirrhosis at minimum you should be having an ultrasound scan every 6 months and monitoring blood tests including one called AFP (Alpha Feto-protein) which is a tumour marker. Ideally you should be under the care of either a gastroenterologist to monitor your liver or ideally a hepatologist.

If someone is telling you that you have cirrhosis then you need to be under hospital care for monitoring. Please ask your GP for referral as your situation sounds very unusual to say the least.

All the best, Katie

[Orchardroad in reply to AyrshireK]

Thanks for the speedy reply. I was told in hospital after suffering an AD crisis with chest, bladder infection and sepsis and pneumonia. All common with AD I also had slurred speech, near non existent go and disorientation. I know I had bloods taken. I've also found out that there is an auto immune liver disease? I have not had anything not even a letter but I also have it in black and white in my discharge notes. Am at my wits end as I know someone would not diagnose this Willy nilly.

[Orchardroad in reply to Orchardroad]

Oh and I was diagnosed seven months ago.

[AyrshireK in reply to Orchardroad]

Can you type exactly what is says regarding cirrhosis on your discharge note? Just so we know what they have actually said.

You say you stopped drinking 9 months ago but were diagnosed 7 months ago - were you drinking a huge amount & what caused you to stop?

Were you having symptoms of liver issues - the ones listed above are common with Addison's according to NHS website.

Addison's disease can be difficult to detect at first because early symptoms are similar to those of many other health conditions.

Initial symptoms of Addison's disease can include:

lack of energy or motivation (fatigue)

abnormal drowsiness or tiredness (lethargy)

muscle weakness

low mood (mild depression) or irritability

loss of appetite and unintentional weight loss

the need to urinate frequently

increased thirst

craving salty foods

Dehydration can also be an early sign of Addison's disease. It's caused by lack of the hormone aldosterone in your body, which is used to regulate the balance of salt and water.

Later symptoms

Further symptoms of Addison's disease tend to develop gradually over months or years. However, additional stress, caused by another illness or an accident, for example, may cause your symptoms to suddenly get worse.

You may go on to develop:

low blood pressure when you stand up, which can cause dizziness and fainting

nausea (feeling sick)

vomiting (being sick)

diarrhoea

abdominal, joint or back pain

muscle cramps

chronic exhaustion, which may cause depression

brownish discolouration of the skin, lips and gums (hyperpigmentation), particularly in the creases on your palms, on scars or on pressure points, such as your knuckles or knees

a lack of interest in sex (reduced libido), particularly in women

Some women may also have irregular periods or miss some periods completely. Children with Addison's disease may go through puberty later than usual.

Some people with Addison's disease also develop low blood sugar (hypoglycaemia). This can cause symptoms such as difficulty concentrating, confusion, anxiety and even unconsciousness (particularly in children).

Have you asked your GP about this diagnosis? If you have a good relationship with GP they should be able to discuss this with you in proper detail.

Katie

[Orchardroad in reply to AyrshireK]

Right here goes. Stopped drinking because AD. Went through a period of five plus years heavily drinking white wine because of traumatic experiences ( no excuse) so didn't really want AD overlooked (the irony) no probs stopping at all. Yes pretty much all the early symptoms except mood, diarea, thirst, cramp, skin colour, cramp. Biggest was fatigue and s!eeplessness. I believe I may have had it years as I was in a situation of prolonged mental stress. Now on steroids time critical but doing their job. Just recently started getting low blood sugar.

[Orchardroad in reply to Orchardroad]

Decompensated critical alcoholic liver disease it says

[AyrshireK in reply to Orchardroad]

I would discuss the cirrhosis diagnosis with your doctor. A scan should be able to confirm whether yes or no you have it. Symptoms are very much a cross over with Addison's but cirrhosis leads to other stuff which is potentially life threatening like variceal bleeds etc.

BLT page on Cirrhosis will tell you more. britishlivertrust.org.uk/li... You'll see where there is overlap in symptoms.

Ask your doctor - if you are in the UK then NICE guidelines stipulate you should have 6 monthly scans to check your liver. Therefore if indeed you do have cirrhosis then you are overdue an ultrasound and having not had one to make diagnosis I would certainly want it clarified. A diagnosis of alcohol related cirrhosis can go on to affect travel insurances and life insurances and stuff and i'd definitely want the status clarified.

Katie

[Bootandall in reply to AyrshireK]

I know there are differences between here in the states and the UK, but do you know if that is for all cirrhosis, independent of cause? I was diagnosed with Hepatitis C after a medical exam for life insurance, and couldn't get it. Then I was told after achieving SVR < 12 I was considered cured, but would always have antibodies to the virus, and while that would probably require documentation, I could then be insured. It never occurred to me to ask about cirrhosis, as I didn't know I had it until I was evaluated for treatment 14 years later. I'm also worried that I will be eliminated for consideration for employment through a pre-employment physical, I'm trying for a position in local government.

[taylor40plus in reply to AyrshireK]

I agree with Katie, I had biopsy, liver cirrhosis, now i have check ups after 6 months, scan in few weeks, also i have been giver injections to control the diabetes

[Kristian]

Hi Orchardroad,

I think I may have a bit of an possible answer for you. Having read your responses to Ayrshirek aswell as your original post, it is possible that your "decompensated liver disease" diagnosis was an acute event as opposed to having "decompensated liver cirrhosis". The first is basically where your liver suffers a severe insult or injury which puts it in a state where it struggles to work for a period of time. Basically an acute liver injury. Having Sepsis can do that as can other things including I would imagine alcohol. Basically it's a short event. "Decompensated liver cirrhosis" on the other hand is generally the end point of usually many years of chronic liver disease. So, yes you could have had signs of decompensated disease during your hospital stay, but may not have cirrhosis. It's probably the case that you do have some cirrhosis, that is a guess though, but given that you are generally asymptomatic your liver may be working reasonably well. Just a thought. It is though worth asking that question the next time you see your specialist or GP. I'm sure they'll be happy to explain better than I can. The good think is though that you say you've laid off the alcohol. That is probably wise. If you do have some chronic liver disease in addition to your addison's then no point causing more damage if you can help it. Hope that opens up some possibilities of an explanation for you.

[Orchardroad in reply to Kristian]

Thank you Ayrshirek and Kristian. I started composing this last night in response to Ayreshirek's post.

I am a white 59yr old female, UK based. You are right the overlap is disturbingly close. From the NOT list. Early symptoms lack of appetite, weight/muscle loss and disturbed sleep. All Addison traits. The sleep is commonly caused by low cortisone.

Later symptoms falling over and breathlessness I get low blood pressure and have COPD.

Red flags none.

My long and short term memory are razor sharp and I still complete daily crossword, suduko, word games and quizzes even at hospital. My recall is frequently praised.

So now back to the crux. I am certain no scan etc was done unless it was in the first 24hrs when I was out of it. If this was/is the case surely there must be some patient care management in place whereby someone would say you've been diagnosed with this and we found it doing that?

After removing the 'cause' does the liver continue to degenerate with scarring and fibrosis? I worry that all of a sudden I will have them and not sure how I could cope I am not doing that well now.

My gp has been fantastic with Addisons constantly trying new things and swapping notes etc. Nothing for DALD do you think she thinks it's a lost cause in that nothing can be done? If so, why is she fighting my corner so hard with Addisons doesn't make sense.

It would be unrealistic of me to think there is no damage. My weight has gradually risen from 7 stone to 9 11 stone not far off my target of 10.5 stone which is my norm. I am 5ft 3.

The only other thing is I remember my mother talking about having yellow jaundice before I came along. As a family years later we were emigrating to Australia and at the eleventh hour she was refused entry.

There you have it. Me in a rather large nutshell.

[Kristian in reply to Orchardroad]

It actually sounds like your GP is right on the ball with things, which is great. I'm no expert on alcohol related liver disease, but as in most cases, if you remove what's causing the insult then you remove what's causing the damage. Hence any further damage can be prevented. So if you've stopped drinking then there is no reason why cirrhosis, if you have any, would progress any further. So there is plenty of hope. From the sounds of everything it looks like you most probably had an acute reaction to something, whether it be your addison's, alcohol or something else that gave your liver a bit of a kicking. It is though worth exploring further with your gp to see if further testing would be useful to just confirm whether or not you do actually have any cirrhosis. But, if your blood test results are reasonably ok and you feel ok, then the chances are you'll probably be ok. Even if there is some cirrhosis, it's doesn't necessarily mean it's going to do you any long term harm, especially if whatever caused it is no longer present.

[Orchardroad in reply to Kristian]

Thanks Kristian. I originally came in this site to get dietary tips/advice but so glad I posted this. I live alone and have not told family yet. I wanted to get all the facts so I can answer their questions coincidentally and accurately to save them the searches and worry.

[Orchardroad in reply to Orchardroad]

Confid entl y😄

[Kristian in reply to Orchardroad]

Haha, good job you didn't ask me for dietary advice. I usually recommend jaffa cakes and mini cheddars before bed, lol. So probably not the best person to ask 😂😂😂

[Orchardroad in reply to Kristian]

High five mini cheddars!

[mncold]

HI Orchardroad,

You have gotten a lot of really good advice from others on here.

I'll just add my 2 cents.

I'm not sure of your timeline for all that is going on.

It seems to me that 7 months ago you were diagnosed with Addison's, you quit drinking at that time, then you recently had an acute bout of Addison's and one of the reports said you have ALD.

You really like your GP and her treatment of your Addison's, but are concerned because she doesn't seem to be worried about Liver Disease.

If you really like your GP - can you have a sit down with her and find out why she does not seem concerned about liver disease?

It could be possible that your episode of Addison's influenced other tests and from what I gather alcohol is often the first choice when liver disease rears it's head. My husband has cirrhosis, most probably caused by alcohol - and in his case probable. We live in the US.

I think your best course of action is to talk with your GP and take all the questions you have in a notebook so you can write down her answers and have a record to look over later for any other questions that may come up.

I can offer what my husband's doctors tend to tell him when he is concerned about something going on - they say they need to work on the medical issue that is most urgent first - not something he [or anyone] enjoys hearing.

If it was my husband, I would call the doctor that he likes, and make sure that he understands what and why the doctor is doing what they are doing and why other tests or a referral to specialist is not being made.

Best wises,

Mary

p.s. hope this isn't too rambling, just got back from a visit with my m-i-l.