New to Hep and scared

Hi Marburg,

I am sorry that you are not well and are feeling scared. I agree with you, liver disease is really scary.
Please take a few moments to read the hepatitis resources folder at the top of the posts. There is much information there about all types of liver disease. Reading through will help you develop a list of questions for your upcoming appointment. Write out your questions and leave space between so you can write down the answers from your doctor. Don't leave your appt until you get all your answers! If there is a trusted loved one that can go to the appt with you, that would be helpful. Having the second set of ears...or maybe they can write down the answers for you.

I am sure that one of our moderators will be along soon to welcome you to Healing Well. Or one of the members that has knowledge of hep c.

In the meantime, keep reading through the posts. Keep coming back and let us know how you are doing.

Emma

Hi again Marburg,

I should also have mentioned that the more information you can share with us, such as your age, what your symptoms are...are you experiencing fatigue (this is pretty typical with liver disease)? Any swelling of the belly (ascites) or legs (edema)? Any mental confusion (HE)? It is important to discontinue any and all alcohol. Get yourself into a program if you need assistance. Also important to avoid salt and red meat. Salt, as you most likely already know causes the body to retain fluid, and the red meat is very hard for the liver to digest. Keep an eye on the color and volume of output of your urine. Many times severe liver disease and kidney issues go hand in hand. Dark cola colored urine is a bad sign. Eat plenty of fresh fruits and veggies. Don't take any over the counter medication or herbals or vitamin supplements unless you check with your doctor first.

I am sure that you will find the members here to be warm and helpful.

Take care.

Emma

Marburg, hello and welcome to the forum. However, I am not sure why you are confused or afraid. Your ALT is nearly normal and your AST is normal. INR is 1.2 when high normal is 1.1. Your Alk-phos is normal and your AFP is low. You do not have hep C.

I didn't check your other labs, but you seem to be okay as it pertains to the liver. Why are you seeing a hepatologist?

Hugs,
Connie

Well, you do have fatty liver and possibly AIH. There are additional tests you should take to rule out AIH. Dany, one of this forum's moderators, has AIH and is very well educated about liver disease. I'll send her a note about your posts. AIHer/Ann is also a good source of info. The good news is that with the proper medication and care, you can live a normal life.

Hugs,
Connie

You're very welcome. Using the Search feature in the blue line above, if you type in Dany or AIHer, it will bring up all their posts about AIH and fatty liver.

Hugs,
Connie

Hi Marburg

Sorry for the delay in posting - I am in UK so in a different time zone!

It seems to me that the tests rule out viral things like Hep b or C but could indicate an autoimmune liver disease. In addition you say you have been told you have fatty liver disease.

On fatty liver disease, as your hep has probably explained, the most common type causes some liver function tests to increase but can respond to weight loss etc. In a very very small number of people it is a different type that can lead eventually to cirrhosis and possible transplant. Only a biopsy can tell which it is - so my guess is that is why your hep mentioned a biopsy.

The fact that your liver function test are normal is good. That means there is little or no active inflammation going on. So you should be pleased at that.

The antibody tests suggests there may be an autoimmune process going on in your liver but there is no definitive test for these so diagnosis depends on an experienced hep piecing together lots of different results and symptoms etc to arrive at a diagnosis. Again a biopsy may be suggested as that will provide some of that information. Is your diabetes type 1? Having another autoimmune disease or having a relative with one is another piece of information that feeds into the diagnosis.

There are basically 3 different types of autoimmune liver disease depending on whether the autoimmune process is attacking the liver, the large bile duct or the small bile ducts. The 3 different diseases are autoimmune hepatitis (AIH), primary biliary cirrhosis (PBC) and primary sclerosing cholangitis (PSC). But to complicate matters further there are big overlaps between the diseases and someone with AIH may have some results more common in PBC or PSC and so on. Again that is why an experienced hep is needed to try and unravel it all.

The good news is that they can all be controlled with medication - AIH more so than the others - but there is no reason why any should cause big issues long term.

I confess I have never seen a smooth muscle antibody result expressed like that - normally I have seen it shown as a ratio. When it is shown as a ratio then below 1:20 is normal, above 1:160 is very suggestive of AIH and in between sort of points to AIH but not as strongly. But as your results state it is indicative of AIH then I guess it is. Dany may know more - sometimes different countries show results in different ways. The mitochondrial antibody suggests there may be a PBC element or overlap I think. Again Dany may know more.

With AIH the normal treatment is steroids and then immunosuppressants so the steroids can be reduced. But with normal liver function tests many doctors would delay treatment until they are sure of a diagnosis - and even then a policy of watchful waiting may be best.

People with AIH do very well - even if there is cirrhosis - which is what I have. Medication can halt the progression, you are monitored for complications and there is no reason why it should ever get worse. If it is either of the other 2 types of autoimmune liver disease then the usual treatment is a bile salt called ursodeoxycholic acid - usually shortened to urso which really helps with symptoms. If there is an overlap of two different diseases then the doc may decide to treat just the main one or both. There is usually limited impact on normal activities although sometimes it can be hard to get the balance of meds right initially.

So my advice would be to listen to what your doc says and not to be surprised if he suggests more tests including a biopsy. He is just collecting the information he needs to decide what the most likely diagnosis is and the best way forward. He may decide to just monitor you further for now. If he does suggest steroid treatment now then do ask about the possibility of having budesonide rather than prednisolone. It is a steroid that is absorbed by the liver and small intestine so there is much less getting out into the rest of your system -and so side effects are generally much reduced.

I realise that I have thrown a lot of information at you and you are pretty worried anyway. Please take comfort from your normal liver function tests and the fact that autoimmune liver diseases are controllable.

Ann

Post Edited By Moderator (hep93) : 4/19/2013 1:00:54 PM (GMT-6)

Marburg, congratulations on your weight loss! Keep it up!

Your cousin will die sooner rather than later if he continues to drink...and it won't be a pleasant death. Such a shame.

At least you won't die from your disease if treated properly. Keep your sodium very low, as it causes fluid retention.

Hugs,
Connie

Thank you both Connie and Ann,

I will do that. Right now I seem to have reached a plateau on weight loss but hope to see more weight lost soon.

I see my hep/gastro doc in about a week and a half and will post what he says.

Thank you again so much for the support.

Mar

Thanks Dany,

I double checked the lab results and have copied them directly from the report.

Actin (Smooth Muscle) Antibody
33 High Units 0 − 19 03
Negative 0 − 19
Weak positive 20 − 30
Moderate to strong positive >30

Mitochondrial (M2) Antibody 5.5 Units 0.0 − 20.0 03
Negative 0.0 − 20.0
Equivocal 20.1 − 24.9
Positive >24.9

My hematologist is treating me for iron deficiency anemia as my iron/ferritin levels were very low last year. I just came out of anemia at the end of Jan but still have low platelets and large cell sizes so she is continuing treatment for anemia until at least May and then may have a bone marrow biopsy done.

My hep doc will most likely talk about biposy again. He brought it up the last time but said we could wait awhile.

Honestly, I don't know how I will be able to pay for all these. My insurance isn't the best and have high out of pocket copays. So money is worrisome also.

I am so glad this forum is so friendly and helpful.

Thanks
Mar

You're welcome Ann.

I didn't know there was a difference. I don't really understand the tests.


Mar

You need to look at any food that is in a can, frozen or in a box. Most of these contain sodium. Bread is often salty. Remember to look at portion sizes, for example, most bread portions are for a single slice. Most portion sizes given are less than what many people eat at a single sitting.

You're diabetic, so I'll bet you look for sugar and carbs very carefully. Try the same thing with sodium. Going out to eat is a guarantee of massive quantities of salt.

Post Edited (**David**) : 4/18/2013 7:39:17 PM (GMT-6)

2,000 milligrams is the outside limit for people with no problems with salt intake. Try cutting yours down to 1,,000 milligrams. Many nutritionists think that 2,000 milligrams is too high for normal people.