Diagnosis Today

[chynablue]

I went to the Gastroenterologist today to follow up after my MRI. Here's a little history and the results of today's visit:

AST and ALT have been elevated for 2 years

Fatigue for many years

Bloodwork October 2015:

AST 113 (normal 0-40)

ALT 170 (normal 0-32)

Mitochondrial (M2) Antibody 118.8 (normal 0-20)

Alkaline Phoshatase 49 (normal 39-117)

Bilirubin .8 (normal 0-1.2)

Hepatitis negative

Actin (Smooth Muscle) Antibody negative

Antinuclear Antibodies (ANA) negative

TSH 4.97 (normal .45-4.5)

Ultrasound October 2015:

Fat deposits in liver

MRI November 2015:

Fat deposits in liver

Hepatic vasculature and biliary ducts normal

Small cyst in upper left kidney

All organs look normal otherwise

Diagnosis Today:

Fatty Liver Disease - imaging shows fatty deposits in liver and blood work shows chronic elevated AST and ALT, consistent with FLD

PBC - although blood work shows no elevation in Alkaline Phoshatase or Bilirubin and imaging shows no scarring or evidence of damage to bile ducts, AMAs are still positive for PBC. The doctor believes that we got lucky and caught it early, and is quite certain that I have PBC even though other diagnostic criteria is not (yet) consistent with PBC. He did not feel that a liver biopsy would be needed for a PBC diagnosis, but I am to discuss it with the hepatologist in 4 months.

Treatment Plans:

Fatty Liver Disease - the doctor said this is caused by alcohol and poor diet, but it is reversible. I am to avoid alcohol for 3 more months and have been referred to a nutritionist to assess my diet and help me lose weight (10-20 lbs loss would put me in the normal weight range). Bloodwork today including a repeat of liver function tests and a lipid panel. Follow up bloodwork in 3 months, then see hepatologist. Follow up MRI in 6 months.

PBC - starting Ursodiol tomorrow - 300mg three times per day. Hepatitis A and B vaccines ordered to further protect the liver. The doctor said do not take any additional vitamins or supplements without his approval. Bloodwork today including liver function, ALP, and Bilirubin. Follow up bloodwork in 3 months, then see hepatologist. Hepatologist will discuss possible liver biopsy and further studies. Follow up MRI in 6 months.

Osteo Check - Because PBC and osteoporosis often occur together, a bone density scan is scheduled for next week.

TSH Elevated - bloodwork today will test for TSH, T3 and T4. If abnormal, referral to thyroid specialist. The doctor said since I have PBC, he definitely wants to watch my thyroid closely. Especially since I have family history of hypothyroid, and my thyroid has slowed in the past in times of stress.

Kidney lesion - the doctor says it definitely looks benign, but they will check on it again during the follow up MRI in 6 months.

[dianekjs]

Excellent, very thorough synopsis and your doctor appears to be on his game. The only thing I don't see is the AMA value, although you say it's high. Glad he caught the thyroid- you will feel much less fatigued with TSH in the lower range of normal. Your plan of action sounds appropriate. Wishing you the best.

[Zelda5 in reply to dianekjs]

Hi dianekjs,

She mentined her AMA's as: Mitochondrial (M2) Antibody 118.8 (normal 0-20)

[chynablue in reply to Zelda5]

Thanks Jean. I had to Google AMA's to figure out that my blood test results had them listed as M2 Antibodies. Evidently there are several types of AMAs and AMA M2 is the one that is specific for PBC.

[Zelda5 in reply to chynablue]

I tested positive for AMA-M2 twice too, and like you I also have a fatty liver. My biopsy was negative for PBC but they couldn't exclude early stage PBC, because it can be focal and patchy. Is your liver enlarged and does it hurt in that area? If you don't mind me asking, why did they check you for AMA's in the first place?

[chynablue in reply to Zelda5]

Hi Jean, no, my liver is not enlarged and I do not have pain. I do have bloating and cramping after I eat sometimes, and sometimes it lasts for days, but the pain is not in the liver area. That could be due to a number of causes.

My general doctor referred me to a gastroenterologist because my liver enzymes AST and ALT were elevated for a long time. I also have fatigue and trouble losing weight. The gastroenterologist ran a blood panel to check for several things, and AMA M2 was one of the tests. His words to me were, "Don't worry. I will get to the bottom of this. We are going to run a huge blood panel on you and schedule you for an ultrasound."

If you had my doctor, I suspect he would go ahead and diagnose you with PBC. The way he explained it is that I don't meet all of the diagnostic criteria (elevated ALP and bilirubin, and/or damage to the bile ducts). But that doesn't mean I don't have PBC. It just means that we caught it early. He said AMA M2 is so specific for PBC that he believed very strongly that the diagnosis is correct.

The actual note in my chart (which he prints or emails to me after each appointment) says "No cholestasis based on labs makes positive AMA interesting".

My understanding is that he is taking a proactive stance on diagnosis; some doctors are more conservative and want to wait until there is evidence of damage to confirm the diagnosis. This allows me to go ahead and go on Urosdiol, which I started last night. I do not know if taking Ursodiol early will help me or if delaying the start of Ursodiol until diagnosis is confirmed will hurt anyone.

Does anyone know of any research regarding starting Ursodiol before PBC has damaged the liver vs starting Ursodiol after? Perhaps there is a link somewhere?

[Zelda5 in reply to chynablue]

I copied this from the hospital where I see my Dr at SLU liver center its a Dr., patient Q&A and it may in part answer your question, especially Dr.s response:

"I recently tested postive for AMA, 52.7 on a value scale of 0.00-0.20.0 units. My primary physician said it was signs of PBC. He did a liver panel and everything came back normal (TP: 7.7; ALB 4.5, ALP 69, AST 31, ALT 38, TBIL 0.6, DBIL 0.1, IBIL 0.5). He thought I still had PBC but that we caught it before there was any liver damage. I saw a GI doctor today and while he agreed I had a high AMA, he said he would not touch me (as far as a liver biopsy) because my liver enzymes are 100% normal. He wants to do my liver panel every 6 months to monitor for any increase in the enzymes. Could I have a false postive AMA or could the high AMA be a sign of something else? Should I be doing more before my enzymes increase? I don’t want to wait until I have liver damage and then say I have PBC when I have already tested postive but have no liver damage?

This all began with a rash I am unable to get rid of (July 2012). The rash began around a trauma to my leg which occurred in June 2012 but has since moved to include knees and hands. My other symptoms are: enlarge lymph node in my neck (it comes and goes), constipation (I’ve never been regular, maybe once a week); stress fracture that will not heal (since May 2012), lack of concentration, easily distracted (I can be in the middle of a sentence and completely forget the word I was getting ready to say).

“AMA is a very accurate testfor PBC. Studies have shown that among persons who test positive for AMA but have no signs of liver disease (i.e. they have normal liver enzymes), they will eventually develop more typical PBC. It is very appropriate to suggest monitoring of liver enzymes with a planned liver biopsy if and when they become elevated. A lot of time can pass while the liver is inflamed (evidenced by raised liver enzymes) without any liver damage (scarring) occurring and treatment can be started at an early stage before any actual liver damage has occurred” Dr. Adrian Di Besceglie

[chynablue in reply to Zelda5]

Oh perfect! That's exactly what I was wondering about! Thanks, Jean!

[dianekjs in reply to Zelda5]

Thanks, yes I caught that on a re-read - missed it the first time.

[chynablue in reply to dianekjs]

My doctor is awesome! He's very thorough and scientific in his approach. His personality matches mine, so communication is quick and easy. Thanks Diane

[Wendy29]

I'd be OTM with those results - NHS?

[chynablue in reply to Wendy29]

What's NHS?

I am very glad to have caught the PBC before ALP and Bilirubin were elevated. There seems to be no PBC-related damage as of yet.

[Hidden]

Did they do Ggt?

[chynablue in reply to Hidden]

No, I don't see Ggt. And I googled every item on the blood panel - none of them seem to be Ggt by a different name. I hope that's OK, and I'm not missing anything important. I will see the Hepatologist in 4 months so I'm sure she will test for anything missing.

[tinypixie]

Fantastic report and sounds like a good prognosis. Could you please tell me the name and location of your consultant?

Many thanks!

[chynablue in reply to tinypixie]

I'm in the US, but from what I've gathered a consultant is what I would call a specialist? His name is Dr. Sonenshine, a gastroenterologist in Atlanta, GA.

[teddybear7]

You have received a very good consultation. It puts mine to shame. Bloods = PBC

No MRI

No biopsy

Put on urso & seen for a chat once a year. Don't even take bloods.

Luckily my gp is on the ball & helps with my issues between appointments.

[chynablue in reply to teddybear7]

I am very lucky and thankful that I found such a great doctor. My previous doctors had a similar response - looks like your liver enzymes are elevated. are you an alcoholic? No? OK, well, see you in 6 months to see if it changed. Then in 6 months, the enzymes were still elevated, so he sent me for an ultrasound... mainly so that I could not sue him for medical neglect, failing to follow up and missing the diagnosis. Once I changed doctors, things started moving along.

[butterflyEi]

what a great doctor. It is good to read of a thorough investigation and follow up - it is rare and certainly the opposite of my experience.

[chynablue in reply to butterflyEi]

Print it out and bring it to your doctor. Ask them - why aren't you as thorough as this? Can I have a report like this, please? Or perhaps a referral to a doctor that can? I wonder if its a lack of education or a dysfunctional healthcare system because you deserve better! (((hugs)))

[butterflyEi in reply to chynablue]

That is a very good idea and such a clever solution which never occurred to me. Thank you.

[chynablue in reply to butterflyEi]

Sometimes we have to educate our doctors... or fire them! Keep us updated! Best wishes and I hope you get results

[PBCFoundation PBC Foundation]

Hello chynablue,

Thank you for your post. I will send you a private message with regards to this.

Best wishes

PBC Foundation

[momma_4]

I have systemic lupus and RA, 56 year old female. Never drank more than possibly 5 glasses of wine a year.AST & ALT blood work as been going up since March 2015, with the exception of one month during the Summer . The ALT has reached 277, the last 4 months it has been over 150 to 170. I've had ultra sounds, MRI 's, and C Scans. Ind seen monthly by my RA and often check on with my family Dr., for his opinions. I'm now off of most meds such as methotrexate, steroids, Celebrex, among several others. We are cutting my Actemera in half, hoping I can come off of it. In the U.S., my husband is making plans for another opinion at the Mayo Clinic

I taking milk thistle along with various vitamins and minerals. Do you have other suggestions? We are going to look into acupuncture and other ways to healing. Any suggestions will be appreciated. We have strong faith in God's healing . Sincerely,

[chynablue in reply to momma_4]

Are you seeing a liver specialist? The arthritis doctor is in a different specialty, and the family doctor is likely to only have general knowledge. The Mayo Clinic is very reputable with an extensive network of specialists, so that sounds like a good start.

My doctor advised against any vitamins, minerals, and supplements including milk thistle, and he wants me to eat as clean as possible at this time because anything else is just one more thing that my liver has to break down and process. But, everyone is different, and I'm not a doctor.

My mother and grandmother have issues with inflammatory and immune diseases. I have no proof, but I believe that stress is very very bad for these issues. If there is anything you can do to promote emotional, mental, and spiritual health, I think that is a good idea. I think the body can heal better when you are in a calm environment. I also have strong faith in God's healing

[Wass71]

I am currently taking part in a pbc trial the research Dr told me they suspect if they catch pbc early then it may never develop. The action of the disease is that it starts in the bile duct and the cells around it respond to that damage by starting an inflammatory response. Then like a domino effect the cells next to those respond and so on. If the damage doesn't occur at the initial bile duct it shouldn't develop. The reason this is difficult to prove is that for somen reason they don't understand some ama positive people never develop the disease. So its difficult to prove if the treatment has stopped it or if the person would never of developed it anyway!

Also not wishing to sound rude, but I don't think we should compare experiences about health care services between the UK and USA. We are so lucky to have an amazing free healthcare in the uk for all the bad stories you hear there are millions of good stories, just they don't write about them. I have had amazing treatment on the NHS, I've seen different consultants at different units. I've had every test you can think of and I've had it all for free. Maybe those posting from the US could tell us how much they have to pay for there consultations (Med insurance or whatever) I'm sure people would feel more grateful if they knew how much people who don't have free healthcare have to pay!!

Just wanted to defend the amazing NHS cause I for one am so glad we have it. A liver transplant cost s more than £30k. I don't have that sort of money, or money to buy private health insurance.

[chynablue in reply to Wass71]

My employer pays for my health insurance. My office visits are $50. My ursodiol is $20 a month. The ultrasound was $66. Blood work $40. MRI $238. Once I pay $1,000 out of my own pocket in a year, the cost goes down to 20% of these costs. If by some chance I get all the way to $3,000 out of pocket (like expensive surgery), then everything else that year is free. This is considered very good insurance and employer benefits in the US. Some have it better, a lot have it worse. I am very lucky.

That being said, its not about US vs UK. Everyone has obstacles to overcome when navigating any healthcare system. It could be the cost, that particular doctor, the clinic's policies, the healthcare system, lack of information and communication, etc. What is important is that we become our own advocates and not give up until we achieve the best health possible.

I think it's important to share our individual experiences, not so that one can be better than another, but so that we can see what is possible. Use it as a tool for our own obstacles.

[chynablue in reply to chynablue]

Update - the MRI charges were on 2 bills, the second of which just came in. Lets change that from $238 to $900 out of pocket. Insurance covered the rest.

[Wass71]

Thank you for sharing that information Chynablue. I am in complete agreement with everything you have said.

I just sometimes feel people don't realise how fortunate they are in the UK. That is why its so interesting to see what you guys pay. Of course not all employers will provide insurance, many people live in fear of I'll health because of the cost of accessing healthcare. I can't imagine how awful it must be to have the stress of illness and the worry of finding money to pay.

I wasn't suggesting it was a UK vs USA thing, more frustration about comments made where people were comparing!! It is just that we are not comparing level playing fields. When you pay you can have whatever tests you want, not necessarily what is clinically required. It is well reported that the US is an increasingly litigious society and therefore likely Dr practice in a much more defensive way, (You mentioned tests being done in case you sued - I'm sure that was tongue in cheek?). In your case they were obviously required tests given your results.

With regard to posters being impressed with the fullness of the original report ,if people want more detailed reports from their Dr they can contact a consultants secretary. They are more than happy to send scan, biopsy,blood reports. You just have to ask. They don't do it for every patient I think for two reasons, firstly cost and secondly some patients find the information daunting if they dont understand it and it can create more anxiety.

I think we should always remember there are always people in much worse situations when it comes to healthcare access. Be grateful for what we have. When things don't go right, go via the appropriate channels to instigate change. All NHS hospitals have a PALS department, if you feel unable to bring it up with the clinician or department. In most cases where people haven't received care they are happy with, its often a break down in communication or human error. Usually things which can be solved.

Anyway Chynablue, my main point was about your diagnosis and the information I found out from the research Dr. It sounds like you are in a good position, of course nobody knows, but with early treatment you might never go on to develop the liver damage caused by pbc. It seems entirely sensible to start urso, although they usually gauge its efficacy by a reduction in AlP, so that may be difficult to quantify in your case. The alt and ast are likely to be elevated due to the fatty liver and with the changes you have been encouraged to make hopefully that will improve.

I wish you well for the future.

[Rockie]

Looks as if your dr knows what he is doing. Good for you!! My liver biopsy did not confirm PBC only after they did ERCP they were positive that I have PBC, auto immume Thyroid and I was already on Eltroxin for Thyroid and then started with Ursotan. I believe the main purpose of Urso is to keep the bile thin in bile ducts.

[chynablue in reply to Rockie]

Thanks, Rockie! I never heard of ERCP. I just Googled it and read about it on the internet - interesting!

[cazz22]

Envious of your docs/specialists-mine are totally useless😞

[chynablue in reply to cazz22]

I'm sorry cazz22. My last doc was not much help, either. I hope you can find better care!

[Hidden]

Hi All,

It is very apparent that the thoroughness of Doctors is such a wide range. I am very fortunate that I have my bloods checked regularly by my GP. My GP contacted the specialist to ask for an earlier appointment as my results had increased and the latest even higher again. I see my specialist Tuesday coming instead of February.

I hope all those that don't have good doctors find better in the future, makes a big difference having a good one in your corner.

Wishing you all the best

Angela xxx

[chynablue in reply to Hidden]

Agreed! Good luck on Tuesday

[Bobbycat12]

Is there anywhere where we can talk about LFTs - ie Serum Alkaline phosphate level which for me is very high indeed as is Alanine aminotransferase level but I am still just being monitored

[chynablue in reply to Bobbycat12]

That sounds like a good topic. Perhaps you could start a post about it? I usually just search the internet to find out how I can read blood test results, but I know there are some great articles on the PBC Foundation website and the British Liver Trust website.

[Mrsbry12]

Hi I was diagnosis last Wednesday with early stages of pbc they traced it right back to 2010 when there were little traces of it. Now I am on ursofalk capsules 250grams two tables twice a day I am 40 years old at the moment. I work as a care assistant but only doing 17 hours a week.

[chynablue in reply to Mrsbry12]

I just started medication, too. Mine is called Ursodiol. It seems to be helping, but I'm not sure yet. Let us know how it goes so we can compare notes

[Mrsbry12 in reply to chynablue]

I will when I have my blood test . I got three months worth of tablets to try out.

[Mrsbry12 in reply to chynablue]

I have always being fatigue and tired all the time

[chynablue in reply to Mrsbry12]

Fatigue is the worst. The hardest part of all of this is the fatigue, I think.

[Chocolate11 in reply to chynablue]

Hi I get days when I feel so tired and not want to do anything. And just do my crochet.

[Mrsbry12]

Hi there sorry I have not been on here for a while.