Need your opinions about my latest Dr. appointment.

[Jkf1]

Hi all, I just had a first appointment over the web with a Hepatologist, and I would like your opinion on what he had to say and if I should pursue something else.

I had previously been told that I have Nash, stage 2 fibrosis. My mother and her sister both died in their forties of liver cancer and they did not have a history of drinking, other than occasionally, socially.

My last test (Fibroscan) was 6 months ago which is the one that showed I had F2, although my blood work was normal. The doctor today said hes not too worried by those results and that he's happy to wait a year and a 1/2 to maybe see about more testing. He then asked if I was interested in weight loss surgery (I am not), as I am 65 pounds overweight and told me I should get a colonoscopy because I am 49 and they now recommend that people get them at age 45. At one point he playfully threw paper balls at the door to get his assistants attention.. in reviews of him I read he had a sense of humor.

I told him based on my knowledge and my family history that I would like testing done at least once a year, but he said my Fib4 score was below the cirrhosis mark and he's not concerned, and that he will just recheck my bloods in another year, and that I need to lose weight... Which I am constantly trying to do and I keep losing and regaining the same 25 pounds.

Because it takes so long to get into see a specialist, months ago I made an appointment with another specialist that is over an hour away, just in case I did not like the Dr. I just met with, but it would be a great hardship to get to as I am disabled and require transportation.

So, do you think this doctor I have just seen was on the mark with not wanting to test me again for quite some time ( It will be a total of at least a year and a 1/2) and who believes in the bloodwork results, (which I know don't always show the truth) or should I endure the hardship to see the other doctor? Thanks guys!!!

[MINTVCX]

Well I think doctors should not stop with first diagnosis taking into account your family history. NASH/NALD considering your weight is highly likely but it can be something more/addional that might damage your liver. I think always some other factors should be ruled out (Aih, alpha trypsin deficiency, Wilson disease etc.). Just to be sure even it is not likely.

[nash2 Partner]

Well, we can't really play doctor but if it were me I'd want to have increased focus on liver cancer monitoring given your family history. I'm assuming that your Fib-4 is below the cirrhosis indication but above the no liver disease threshold given your earlier Fibroscan. It is true that the doc has nothing that he can do for you except tell you to lose weight so from his point of view no additional testing is needed. That attitude does piss me off personally but it is the accepted practice. If you are interested there is an intermediate step you could take which is one of the modern blood tests. I'm using LIVERFASt to monitor my status. It is something you can order yourself, you would have a telehealth call with a hepatologist but the information is useful. Here is a link if that might be of interest.

fattyliverfoundation.org/li...

Wayne

[Jkf1 in reply to nash2]

As always Wayne, thanks so much.

[Drifters_Spark]

I can share my experience and can't recommend or question a doctor's opinion.

My mom had liver disease and she didn't drink. One brother and my father had colon cancer that spread to their liver, ultimately after years of courageous battles, they were overcome by cancer. My brother was cleared of all cancer after colon surgery. His colonoscopies were negative following his colon cancer and scans revealed no reoccurrence. Unfortunately, the polyps grew outside of his colon and were not detectable from either the colonoscopies or scans.

I was diagnosed with autoimmune deficiency hepatitis and late-stage cirrhosis. My Fibroscan score was 75 after the biopsy confirmed the auto-immune condition, fatty liver, and cirrhosis. I had no physical appearance symptoms of liver disease, all of my labs were normal, and my chief complaint was extreme fatigue and occasional pain in the liver area.

I have changed Hepatologists a few times because of similar situations and being advised I needed to lose weight, have stomach reduction, and there was nothing else they could really do and they said I didn't need to come in but once every six months. As you can imagine after receiving my diagnosis I wasn't satisfied with, "there's nothing we can do and we don't need to see you until six months from now."

My new Hepatologists understood my concerns, agreed to more frequent testing, referred to a Gastrointerlogists, agreed with the use of supplements known to aid the liver in toxin removal, anti-oxidants, supplements known to boost the immune system, and some supplements believed to have some anti-fibrotic benefits. I also took things up with my PCP who ordered special MRIs, additional labs on a quarterly basis or as needed.

I had to become my own advocate for my condition. I hated it too but it was my best alternative. My Firbroscan scores in the last six years have dropped as low as 11 from 75, which is the maximum score. I lost 60 lbs through diet, exercise, and frequent use of a Sauna. I kept the weight off and felt significantly better until Covid when the gym's closed. I gained some weight and assumed my scores would be up and they were slightly but my labs are still normal. I will have elevated LFTs when taking certain medications and infections mostly due to allergies. In the last two months I've lost much of the weight I gained during Covid, feel better, and my LFTs are normal. It's been my experience that LFTs are not a reliable method for diagnosing liver disease. Many others have had normal or slightly elevated LFTs only to find out after biopsies, Fibroscans, ultra-sounds, MRIs, etc., that they have liver disease. I do not state this to create an alarm rather just one thing that to my knowledge happens often and many doctors rely on LFTs in their treatment protocol or lack thereof.

Best of luck. Keep insisting that you are given the treatment and testing you deserve because peace of mind also plays a big role in managing stress which is critical when suffering from liver disease.

[MINTVCX in reply to Drifters_Spark]

So as I assemue you have both Aih and NASH/NALD diagnosed? Am I right? As I know Aih can be sometimes detected by the precence of specify antibodies (ANA, AMA etc.). Although Aih is rather rare disease it is a good idea to rule it out.

You are right liver has much reserve so it can be working ok even if it quite demaged.

[Jkf1 in reply to MINTVCX]

I have not been diagnosed with Aih, what is that?

[MINTVCX in reply to Jkf1]

It is Autoimmune Hepatitis (AIH) but this was the question to user who wrote about "autoimmune deficiency hepatitis". I mean Drifters_Spark.

[Jkf1 in reply to Drifters_Spark]

Thank you so much for sharing that,but is helpful!

[Alterity]

Given your family history and blood work doesn't always show anything, I would think they would want to do an MRI to see if you do have any nodules they need to watch. Ultra sounds on me don't show anything, they only way they see anything is an MRI, usually once a year. For a while they did them every 6 months then insurance had a fit. There is no cure of of right now so the only think you can do is lose weight which is sad. Hopefully within a year they will have a cure, but I'm sure only cirrhosis patients will get it. I would find a Dr. that will check you yearly just because of your family history. Tumors arrive out of nowhere in a bad liver. Good Luck. It sad how so many Dr. do not take this seriously, when it really is a silent killer.

[Jkf1 in reply to Alterity]

Thank you. I brought up MRI to the doctor and he said he didn't think my insurance would pay for it and I said, well they might. I know what you mean by having to be your own advocate I have already saved my own life when they sent me home from the emergency room 4 times when my gallbladder was turning gangrene. They treated me like I was a hypochondriac female. I demanded testing and what do you know, I had emergency surgery.

[Ilovejoe]

I was diagnosed with F2 and some F3 NASH and also PBC. I’ve had an ultrasound with elastrography three times already making that every six months.

[Lose4Life]

I just started here tonight, and your post is 2 months old; but, I hope you found a better Dr. I tell my Dr's right up front "if you are threatened by someone who questions and does as much research as possible, then I should walk out now and not waste your or my time!!" Any Dr. who 'plays' while your talking with him, isn't worth your time or money!!! I hope your doing well

[Jkf1 in reply to Lose4Life]

Thank you, I did get a new Dr. I am supposed to lose weight, but it has been a battle.