Cirrhosis Support Group

Hello all,

I happened upon this group while researching for a friend awhile back that was diagnosed with PBC. Now I have some symptoms myself that have me quite worried. I am a 33 yo female with a history of alcohol abuse (mostly binge drinking for approx. 10 years with some periods of daily drinking). About 16 months ago, I became extremely fatigued, and this has not gone away. Several months after the fatigue, I became pregnant. I have not touched a drop of alcohol since then. This is where it gets tricky, since some of the physical signs of alcoholic cirrhosis are also seen in pregnancy. For me, however, they have worsened since I had my baby 3 months ago. I have more than 15 small spider angiomas, my arms hands, legs and feet are swollen, my skin is darker (like I have a tan), I have palmar erythema, petechiae and flushing and telangiectasias on my face. I also have white mottling of the skin on my arms, hands and abdomen.

I had a CBC and metabolic profile done 5 weeks and 12 weeks postpartum and there were no abnormalities. Normal platelets, LFTs were also normal, although protein and sodium were lower than previously.

My doctor will not entertain the idea of alcoholic liver disease, despite my concern and physical signs. Is it possible to have this disease without laboratory changes? My MCV was high prior to and during the pregnancy, but has now returned to normal. AST was always higher than ALT until postpartum. My serum ferritin seemed kind of high at 98 for a postpartum breastfeeding woman.

I'm overtaken by fear, as more and more signs are appearing, but my doctor is not helping me. Is this fear unwarranted?

Any advice would be appreciated as you are all experts in your own right. My friend was initially dismissed by her doctor as well and, while she is doing well currently, will forever be affected by her PBC diagnosis.

Thanks in advance

Hi Boden;

First off, Congratulations on the Baby!

Just what you need to worry about your health when you should be enjoying your bundle.

I'd see a different doctor. We had issues with my husbands unfortunatly it was almost too late. Find a Hepatologist/Gastro doctor in your area and have them do a check. My husbands was found by a CT scan and a blood test. Don't wait. If caught soon enough your liver can get better.

You found a good place to come to talk. Everyone here has knowledge and differing experiences that help.

Happy Thoughts!

Boden

Most of the symptoms you speak of, the telangiectasias, the spider angiomas and the white mottling of the skin, are all know to be caused during and after pregnacy, due to hormonal changes in your body, including high estrogen levels in your blood.

That's not to say that there is nothing going on with your liver, but based on your recent pregnacy and your good blood test results it is not likely to be your liver.

A second opinion from a professional will help you feel better.

I only speak as a Cirrhosis patient and based on what I have experienced or learned, I'm by no means a doctor do your research and do get a second opinion.

Good luck.

Sammy

boden

Yes all the signs you mention could be pregnancy related But usually do not get worse after 3 months. I would find a different Dr.

All of your symptoms can all also be alcohol related. Alcoholic Fatty Liver or even the more advanced Alcoholic Hepatitis produce similar symptoms as Cirrhosis.

The good news is that unlike your friends Liver Disease (PBC) Alcoholic Liver Disease can be stopped by removing the cause (alcohol) Even Patients with alcoholic cirrhosis can slow or even stop the progress of the disease avoiding the need for transplant.

Congratulations you have taken the most important step to help your self. Many of us have had to find new drs. over the years. It took me 3 times to find the right one.

Please check out our site http://mysickliver.weebly.com/

Keep copies of ALL test results so you can track your progress

Thanks, all, for your encouragement. I appreciate all of your thoughts and ideas. Unfortunately, I feel like I am being dismissed by doctors because I appear healthy, hold down a good job and manage to muster a smile when I go for an office visit. In addition to everything else I mentioned above, now I'm suffering from horrible tachycardia that comes and goes every day. It's nearly impossible to run errands or stand for any length of time as I get really lightheaded and my heart speeds up. Anyone have experience with this? Given my drinking history and symptoms of horrible fatigue, edema (now it's moved into my face as well), hyperpigmentation, spider angiomas and tachycardia issues taken together, it seems like it could likely be liver disease. If it were, would I necessarily have lower platelets? Or could they be normal at this point? Again, I haven't had any alcohol for over a year, so would labs be completely normal even if I've reached a stage where there's obvious edema? I'm not sure what to look for to reassure myself or, conversely, prove this is all liver related.

I'm incredibly confused and frustrated that a doctor will not take me seriously, yet I feel like I'm about to kick the bucket! Help!

I'm repeating a line from the above post. You have to remember that ALD is a liver disease.Although reversible it's still very hard on your body and affects more than your liver.

"All of your symptoms can all also be alcohol related. Alcoholic Fatty Liver or even the more advanced Alcoholic Hepatitis produce similar symptoms as Cirrhosis." Even a year later , it often takes a couple of years to see significant improvement. And many people feel worse for a while.

Your Dr probably realizes that you will improve with time.Low platelets are usually seen in even the very early stages of Cirrhosis, But all patients are different.Your edema can be from many different causes. Tachycardia is seldom a symptom of Cirrhosis. Unless you have "Cardiac Cirrhosis" or are in the later stages. Then there would be other symptoms.

Boden, I was jaundice at 3 weeks of pregnancy my Doctor was very upset I was sent all over the place and NO one could give me a reason all tests for hepatitis were negative but my liver labs were out of site that was 20 yrs ago! Finally gave me a diagnosis called drug induced hep. from nsaid drugs it took two years for the liver labs to get back down to normal with no medications. I was jaundice again and in liver failure in 2006 and was finally diagnosed properly with autoimmune hep which has now resulted in cirrhosis.

I believe you should seek another opinion from a gastrologist who deals with this, as far as the tackycardia it could be from anxiety as your body has been adjusting to so many changes just having a child (congrats) the liver is a mighty organ you just might be surprised at how well it will all turned out. Cheryl

Hello everyone!

It has been awhile and, unfortunately, my symptoms still remain. Just to recap, had a baby 13 months ago, so these persistent problems are not pregnancy related I continue to have swollen legs, feet, arms and hands (possibly generalized swelling as my face is swollen in the morning and eyelids remain swollen all day). Skin looks tan all over (no sun exposure), horrible fatigue, disturbed sleep, and more and more spider nevi. Now I'm seeing very visible veins on my abdomen and pelvis, including some around my belly button, which is very worrisome to me. I've had labs done several times throughout the past 8 months and everything is mostly in normal range. Yet I have almost all of the cutaneous signs of ALD and/or cirrhosis! My question for you experts is, is it possible to have portal hypertension with a platelet count around 250-260k? Platelets have moved around a bit, but have never been lower than 229k in the past 6 months. An echocardiogram also noted "abnormal pulmonary veins" - I have yet to get more information from my doctor regarding this. But again, could that be the result of portal hypertension? I'm scared an confused as so many of the clinical signs are there, I feel awful despite no alcohol for close to 2 years, but bloodwork looks good. The rational part of my brain says portal hypertension would show up as a decrease in platelets. But I'm no longer thinking rationally... As always, your honest wisdom is greatly appreciated!

I would be most interested in whatever feedback you get. I have been developing many of the same symptoms,. and like you - my platelets are well over 200K...and all liver functions are normal. I do have mild anemia (RBC about 3.8 whereas normal is 4.2 and higher). Interestingly and thankfully I do not have any significant fatigue. My varicosities and palmar eythema have gotten decidedly worse since I stopped drinking last year.

Pugspapa - If you wouldn't mind sharing, what is your diagnosis and what tests have you had done?