Positive for Mitochondrial (M2) Antibodies

[chynablue]

I wanted to share my experience in case it helps.

2 years ago, I had routine blood work done so that I could refill my blood pressure medication and the doctor said my liver enzymes were high. He kind of brushed it off and recommended that we wait and test again in 6 months to see if they are still high.

A year and a half ago, I returned for blood work and my liver enzymes were still high. So, the doctor ordered an ultrasound of the liver and everything turned out fine. No problems.

1 year ago, I had to have a laparoscopic hysterectomy (I was in a lot of pain and had developed uterine fibroids). My pre-operative blood work showed my liver enzymes were elevated. The surgeon went ahead with the surgery, and she examined my liver while she was removing my uterus. She said it looked perfect.

I had been fatigued for years, but I thought it was due to my inflamed uterus. I was rather surprised to see that all my symptoms were relieved by the hysterectomy, all except for horrible fatigue. It is very difficult for me to maintain my weight and nearly impossible to lose weight.

About 6 months ago, I followed up with a new doctor as my liver enzymes have been high for a really long time now. And I still have the issue of fatigue. The new doctor ran my blood test results and said that the liver enzymes AST and ALT were high. She referred me to a Gastrointestinal specialist.

My specialist ran a huge blood panel on me and ordered an ultrasound. My liver enzymes AST (113, normal is <40) and ALT (170, normal is <32) were elevated, serum Ferritin (219, normal is <150) was elevated, and I tested positive for Mitochondrial (M2) Antibody (118.8, positive is anything over 24.9). My liver ultrasound showed fatty deposits consistent with fatty liver disease and spots, the largest of which is 1.3 cm on the right lobe. My specialist ordered an MRI and he wants to see me in the office as soon as the results are ready. He suspects fatty liver disease and possibly PBC. We will discuss whether or not to do a biopsy after we see the MRI results.

Now that I look back, I do have several symptoms that could be due to PBC or some kind of liver dysfunction: fatigue, itchy palms, sensitivity to gluten and other difficult-to-digest foods and sometimes vomiting right after eating them, swollen and tender abdomen, light colored stool, yellowing of the skin especially around the eyes (this comes and goes), xanthalasma cholesterol deposits under my eyes, sometimes trouble concentrating...

Any thoughts would be appreciated. A diagnosis has not been confirmed yet.

[Tigger858]

Hi chynablue, I had a similar experience, hysterectomy due to an abnormally large fibroid, my liver function test was described as "off" with no further investigation. Five years later I had awful fatigue and red blotchy, burning, itchy palms ( apparently a sign of liver problems) which had gone on for years. I had been to the doctor and asked for my thyroid to be checked. The result was normal, however, my thyroid enlarged until it was crushing my windpipe so it had to come out. It was only then, when the fatigue wasn't improving, that other tests were done resulting in the PBC diagnosis. It seems to take an extraordinary amount of time to be diagnosed. I'm sure it's down to most doctors lack of understanding of the condition. I hope you get a proper diagnosis soon. This page and the PBC Foundation have been invaluable. All the best 😊

[chynablue in reply to Tigger858]

Hi Tigger! Sorry to hear all the struggles you had to go through to get your diagnosis (((hugs))). But its nice to know others have gone through something similar. I'm so glad I found this site

[Rockie]

Hi there I have had MRI, Scan, Liver Biopsy, and the ERCP finally showed I am auto immune and have PBC, Have'nt gone for any more tests since then, except for the blood tests to see if the enzymes counts have dropped. There is no cure for FBC except liver transplant and at my age of nearly 75 its not an option.. I dont know for how long I might have had PBC before I was diagnosed with it. My thyroid auto immune was diagnosed years ago, and I am on 1.5mg Eltroxin daily. For me the ithing is Homeopath, that is under control. I take lots of stuff, but the Ursotan,to keep the bile thin I will have to drink forever.

[Rockie in reply to Rockie]

Sorry I dont know what happened I was trying to say for me the itching is the worst. In the beginning I had very loose stools, sometimes went to loo for 10 to 15 times a day, After I went to see a Homeopath she has that problem under control, for which I am very grateful. In South Africa we only get Ursotan, where overseas it is Ursodoil

[chynablue in reply to Rockie]

Hi Rockie, I'm glad to hear that some if your symptoms are under control. What homeopathic remedies are you using? I'm worried about the itching getting worse. Perhaps there is something I can do to prevent it?

[Rockie in reply to chynablue]

Sorry for the itching we dont really find a cure.I have tried every possible cream without perfumes or colourants, no joy. Drink lots of water and watch your diet, cut out gluten and fatty foods

[KarenLeslie in reply to Rockie]

Rockie- is ursotan a liquid? Is the dosage equivalent to ursodiol?

[Rockie in reply to KarenLeslie]

It is pills ( In South Africa they dont get that Ursodiol) so I would think it is close to being the same

[Hidden]

Hi chynablue, what are your liver enzymes Alp and Ggt. Those along with positive AMA are the ones that generally give a diagnosis for pbc. It's horrible when things drag along and you are not sure what you have. I hope you find out soon what is causing these problems.

[chynablue in reply to Hidden]

Hi iowcaro, Alp was normal. From what I've read on the internet, that might mean that there is no bile duct damage yet, but I'll see what the MRI shows. I'm not sure. I don't see Ggt on my blood test results. Maybe it goes by another name?

[GrittyReads]

I would contact the PBC Foundation - they host this site on 'Health Unlocked'.

There is a link to their site at the top of this page, and once on the site you can find an email link and phone numbers to talk to their trained advisors. They are really good and helpful and can tell you all you need to know, as well as helping to put your mind at rest: the site is also a mine of info and advice.

It sounds like PBC is possible, as abnormal liver function tests, for 6 months or more, plus the presence of AMAs (antimitochondrial antibodies) are the two most common diagnostic feature; although a biopsy can confirm absolutely. I'm surprised they didn't do the AMA test as soon as the liver function tests were suspect - but I guess it still shows how little some GPs know about all the varying liver etc condtions.

However, you should also be checked for other liver conditions, as there can be overlap in both symptoms (fatigue and itching) and some of the diagnostic criteria - not to be confused with symptoms. Also you should be checked for lots of other autoimmune condtions, as people with PBC often have other condtions. My GP was wonderful, and checked me for everything. If it is PBC the medication and treatment is now much better, an it doesn't have to be as serious as it used to be. Just make sure you are seeing a really good liver specialist, preferably one who deals with your specific conditions.

Good luck, and try to stay calm and keep enjoying life - fun, good diet, exercise and being stress-free are the best ways to treat all autoimmune conditions.

[chynablue in reply to GrittyReads]

Thanks, GrittyReads. I really like my new specialist. He seems much more knowledgeable and thorough than the other docs I've seen. I tested negative for some other conditions on my blood test, like hepatitis A, B, C and Autoimmune Hepatitis. My specialist said "We'll get to the bottom of this," so I think he will keep testing until he can confirm a diagnosis.

I am curious about other autoimmune diseases. I might make a separate post about it. I'll ask my specialist for advice on how to follow up on that.

Its good to know that treatment is now much better. Several sites gave a prognosis of 15 years until death or liver transplant. I'm 35

[jane1964 in reply to chynablue]

Hello I hope this will reassure you.I was 40 when I was diagnosed, at that time I had symptoms of fatigue and itching but normal blood tests, the doctor said you will die WITH this not of it and I should have a normal life expectancy.The blood tests went abnormal about 5 years later and I am now on Urso and blood tests are close to normal.I still have the fatigue which can be very bad I hope they will find something to help this soon!But while some patients do not do so well, I think Urso has changed prognosis a lot.It is a shock to be diagnosed so young and it did take a lot of getting used to but you do in time.I hope you get answers soon, be kind to yourself in the meantime.Good luck Jane.

[chynablue in reply to jane1964]

Oh, thank you, Jane. That does reassure me

[Rockie]

Those symptons are all the same as the ones I have and I have been diagnosed with Primary Biliary Cirrhosis,but only go for blood tests. Used to go every few months, but lately I am with a very good Homeopath who gives me natural stuff, and off course I must drink Ursotan (that is what they have in South Africa) but here drs are not very clued up regarding PBC. Please keep me posted re your condition