Anyone with Liver Involvement

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Veteran Member

Date Joined Dec 2006
Total Posts : 708
   Posted 8/1/2007 10:44 PM (GMT -6)   
I talked to my PCP today who is referring me on to a Gastroenterologist as my lab results all point in the direction of something wrong with my liver.  Luckily, I talked to the PCP today and then call my GI doc and got an appointment with him for tomorrow morning so I don't have to wait a long time for answers.  Has anyone here ever had an elevated antimitochondrial blood test?  I'm still trying to figure out what it test for and what the results point to.  Mine was 5.8 and normal is 0.9 or lower.  What is antimitochondrial test?  My PCP suggested last week that the pain and fatigue I am having could be something related to the liver ducts call primary biliary cirrhosis (no I don't drink any type of alcohol).  I read up on this disease and it is serious - no cure - and if the bile ducts are too damaged it could mean liver transplant.  Needless to say I am freaking out and thinking the worst (can't help but look at the worst when you don't know what is going on).  So, yet another doctor now thrown into the circle.  Plus have a followup tomorrow after with the ENT for the thrush that we have been trying to treat for a month now.  On a side note, has anyone had thrush that just didn't seem to clear up for a long period of time?  Can this be autoimmune related like my body can't fight off the fungus that is causing the thrush?
Just needed to talk to someone about what is going on.  I have to my Mom and Dad and asked them to keep the above issues to themselves until we know what exactly is going on as I don't want to worry the rest of my family.  Just don't want all the phone calls that would surely come.  I know they would be supportive but I am sooo scared right now and just Mom and Dad I want for comfort and support.
So, any advice would be appreciated as to liver involvement and lupus related and this elevated antimitochondrial blood test and elevated alk phos and elevated WBC.
Diane (ocean1)
Muscle disorder 2007; Lupus Sept. 2006; IBS 2004; Chronic Hives 2002.
Medications:  Allegra and Zantac; Lunesta, and Ultram PRN.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 8/1/2007 11:47 PM (GMT -6)   
Hi Diane, bless your heart I am sure you are really worried right now. Yes Lupus can cause liver involvment but until you see this specialist and get some more work done try to take it easy. I've been hospitalized with pnemonia and for some reason it was causing my liver not to function properly. I do have a small cyst on my liver now but nothing for immediate concern. I'm finding a lot of doctors today send you off to see a specialist and the specialist finds absolutely nothing. I'm praying that will be the case for you. I'm glad your appt it tomorrow. That will be a big help. Try to hang in there and think possitive thoughts. Let us know how it goes
Thoughts and prayers are with you
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
When things are really dark look up. You can see the stars.

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 8/1/2007 11:56 PM (GMT -6)   
Hi Diane--
I have liver problems and they suspected anti-mitochondrial dna, but it came back normal. I have severe fatty liver that turns into cirrhosis usually in my family and we die young because of it. It is related to diabetes, in my case, which is an autoimmune disease. Autoimmune hepatitis is genetic I believe in some cases and is something that goes along with the various autoimmune diseases. Many people go undiagnosed, thinking the symptoms of fatigue are due to illness and elevated liver enzymes due to medication, and the symptoms are not so severe. And many people live to ripe old ages with really bad livers, not even knowing they had a problem.

Primary biliary cirrhosis, as you probably read, is scarring of the bile ducts. Its important to remember that the liver has a tremendous capacity for healing. There is also a difference between fibrosis, which is scarring that may heal, and cirrhosis. Liver disease tends to drag on for many many many years, slowly progressing in many cases and reversing in some. Did they say whether they think you have autoimmune hepatitis? Here is an article about PBC that is complicated but gives you a lot of info:

It seems PBC causes a lot of the markers for lupus to be abnormal, so it might be hard for them to tell without a scope of your bile ducts or something. Have they said anything about a biopsy of the liver or an ultrasound? These things will help them out to find out what is going on. There is treatment for PBC and autoimmune hepatitis and you might, with treatment, go through long periods of doing better. There are also surgical things they can do if there are lesions or other things contributing to the problem. Liver disease is usually slowly progressing and often the symptoms are not so bad or can be alleviated with medication.

I'm so sorry this is happening to you. I can only tell you that I understand and sympathise with how scared you are right now. I would wait to worry too much until they do more testing to see if there is a lesion that can be removed or other things that can be done first. You should talk with your hepatologist about your medicines too, and make sure that you have a good hepatologist, not just a gi doctor. You need a hepatologist, a doctor that specializes in livers. Borland-Groover is a research and medical clinic in Florida that specializes only in livers and some gi stuff. I see a hepatologist there. Because of your other problems and difficulties with diagnosis and your general health situation, you need to see someone really good at a good medical center that can coordinate with your rheumatologist and the hepatologist.

There is a great hepatitis forum here and many people there have PBC and can tell you all about it and what can be done. Try not to worry until they do more tests and find out exactly what is going on. Hopefully, it may not be as bad as they think now. Bloodwork can be taken many different ways depending on what the doctor is looking for.

I will pray for you and I'm glad you have mom and dad there to support you. It is scary, it sounds serious, but there is also a chance that the bloodwork is misinterpreted and they can't say for sure until they do biopsies or at least an ultrasound. Antimitochondial dna can be a sign of other things, and the markers for PBC are some of the ones they look at for lupus. You can see that in the article. And high liver enzymes can be signs of muscle damage, polymyositis or medicine problems or simple benign in some cases. I just don't want you to worry yourself too much until all the data is in. Also, there is a list of symptoms that indicate PBC. The only way they can really know is with a biopsy of the liver and scope of the bile ducts, and ultrasound and mri and stuff can help. Until this is done, its really just a guess.

Please let us know what they want to do next. I've had several biopsies of the liver, so I know something about that. And I understand the shock of finding out you have liver disease all the sudden. I hope that you don't have this problem on top of everything else. Please let us know. Sending good wishes and peaceful relaxing thoughts your way.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Regular Member

Date Joined Oct 2005
Total Posts : 251
   Posted 8/2/2007 10:10 AM (GMT -6)   
Great information Marji!

I'm sorry Diane. Sometimes this medical stuff is emotional torture...the not knowing....and's terrible. {{Hugs}}

I don't think I've had the test you are referring to, but my bloodwork in July came back with my AST & ALT high. I'm on methotrexate, so it could be that effecting my liver. I'm only on 15mgs (and for only a little over a year) and I don't drink. I go back the 21st for more labs. If it hasn't come down, I'll stop the methotrexate to see if that helps. Part of me wonders if the initial diagnosis of Lupus was correct, and that is what is causing this. All my labs for RA are negative. It is all such a guessing game.

I'll be thinking of you and update when you talk more with the docs.
Jeannie ~
   Mom to Ty (4 yrs old)
   and 3 Shelties
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 17.5mg (RA); Metanx 5mg (RA); Remicade (RA); Lunesta 2mg (as needed)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 8/2/2007 10:15 AM (GMT -6)   
Diane, I'm sorry you are going through this and I don't blame you for being scared. Anything that affects your organs is very scary. I'm really hoping the specialist finds that it's nothing severe and that it's something that can be treated. There was a time when my liver enzymes were elevated and my doctor told me about how lupus can affect the liver. Fortunately my enzymes returned to normal and I've had no problems since then.

Diane, you'll be in my thoughts and prayers. Please let us know what you find out.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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