I am in the process of trying to get a diagnosis. My AMA come back with a number of 5, the lab reference says "normal" is 0-20. My pcp and my endocrinologist both interpreted that as negative. But all the other AI diseases I was tested for (10 in total) the result simply said "negative". I have had intermittent itching for the past 11 months now, and debilitating fatigue/hypersomnia for the past 7. I am being successfully treated for mild OSA and still average 11-13 hrs. sleep per day, as much as 16 hrs. on a bad day. I can't walk for more than 30 minutes before my legs just basically stop working. Any type of physical movement exhausts me. I have pains in my central upper abdomen just below the sternum and occasionally upper right quadrant after eating. My liver enzymes 9 months ago only my ALT was slightly elevated, however both the ALP and the ALT had increased significantly from previous levels. I believe I am in the very early stages of the disease. What are your thoughts or experiences, is any level of AMA considered normal? Or does even a small level of AMA truly indicate possible disease? I'm tired of my doctor's treating me like I am a hypochondriac!
Good Morning. I hope this day finds you well and safe. I was reading your post and noticed you mentioned an endocrinologist. Are you dealing with thyroid issues? I am AMA negative, diagnosed after LFT's very high for over 4 years. After many rule out tests, I was given a biopsy. I am considered AMA Neg. PBC. It sounds like your team of doctors have been rather thorough in testing. I'm not a doctor, so what I am going to say is personal experience only. My fatigue levels were horrible and I used to have intermittent itching. I finally realized a few things about myself. First, my thyroid meds were not right for me. I needed an addition of T3 to compliment my T4. Then I realized that whenever I was anxious or stressed, I would itch. I used to have that upper right quadrant pain too. It subsided when I changed my diet to mostly plant based foods. I actually had to go on a few cleanses too. I have also suffered from depression in the past which manifested with the heavy fatigue and mobility issues when not treated. I hope you find the answers you are looking for. High LFT's can be a result of many things. Be happy all your test are negative. Be well
I have Hashimoto's by virtue of extremely high (near 2000) thyroid antibodies, but as of yet I have a perfectly functioning thyroid. My numbers haven't fluctuated in years. I think I'm just one of those lucky people who is in-tuned with my inner-workings. I have found a couple good doctors for my team. I'm working on the right GI and hopefully a referral to the liver clinic at the research hospital. I'm just patiently waiting out Covid 19 until they are allowed to see patients again. Tentatively May 19 .... fingers crossed
Don't let anyone let you think your symptoms are imagined. That happens to lots of women with autoimmune conditions, but you don't want to be either overly freaked out thinking you have something serious or worse, to be wrongly treated if you have something different that could be treated. I'm with Pinkcrush on the stress issue. It's very important to remain calm breathe, and live a healthy lifestyle. That will help you no matter what the problem may be. You don't meet the textbook criteria for diagnosis for PBC, which includes a certain pattern of significantly elevated AST, ALP and ALT + either elevated AMA or a biopsy or fibroscan finding. Perhaps you should find a hepatologist with experience in treating this disease. It may be that you have something else and they would have the awareness to point you in the right direction.
I'm next door in Arizona. I was just reading the symptoms of Hashimoto's. I'm sorry to hear you deal with this. I had a total thyroidectomy due to cancer in 2011. So hard to stay level on meds. Take care and write or private chat whenever. We are all in this madness together
You are on the track to seek a diagnosis. I truly hope you find a good Hepatologist from a research hospital. Does your insurance plan allow you to go direct without a referral?
My journey began with detection of mildly elevated LFTs during my annual physical last year. It led to a series of tests including bloods, ultrasound and MRI. Then my AMA came back positive. My Pri Care doctor called me and discussed seeing a gastroenterologist or hepa, or both, just to get reassurance and to get different opinions. I saw a Gastro from her clinic first. He is the ‘Liver expert’ there. He went through my test results and concluded that, since I have no symptoms, and my ALP is not elevated, I cannot get a diagnosis yet. He thinks that as my LFTs are hovering at the upper limits, they are not at an abnormal level. He also said that even if a biopsy shows PBC, he could not prescribe medicine because ‘drugs are marked to blood works and not biopsy’. He recommended that I continue to repeat bloods every three months to monitor for increasing trend, and not have to see him again in the meantime. I have done my research to be concerned about interpretation of tests results. What he said about my numbers being normal is wrong. My levels are definitely much higher than my normal levels from years ago. And not to trust a biopsy result?
Thankfully, I found myself a hepa at a research hospital who specializes in autoimmune diseases. The moment she walked out and listened to my concerns, she told me that, based on my test results and history, something was brewing, and she insisted on a biopsy to get an early diagnosis. She said that what I have read and understood about ULNs of lab results is correct, and she assured me that a biopsy would give me a diagnosis. She then expedited the biopsy and I was able to get pre-authorization from my insurance quickly. The biopsy procedure went very smoothly and comfortably. The results came back quite quickly which showed a very early stage of PBC with mild inflammation of the bile ducts. My hepa personally reviewed the biopsy slide with the pathology team. She put me on Ursodiol immediately and is so far very happy with my progress.
I know it is tough during this period to be dealing with a health issue. I cannot say for sure you have PBC but you can join the PBC foundation and read about the criteria for a diagnosis. You have symptoms, elevated LFTs and ALP, so looking at the criteria, I think your visit to a good hepatologist will be fruitful. Do prepare a list of questions to ask the doctor, and have someone accompany you to help take down notes. Please feel free to reach out If I can be of more help.
In the meantime, do stay safe and practice social distancing.
Thank you so much for sharing your experience. I can absolutely relate! The liver clinic actually has to accept me. They told me what tests to have done, and to have a referral sent to them. They are out of my network so I'll be happy if my insurance decides to pay for anything. I'm not counting on it, but I believe in getting the best care possible, regardless of insurance. Luckily, most of the lab work and testing can be done in network.
Yes...definitely go with a hepatologist. I had mildly elevated LFT’s on & off & I was seeing a primary care gastro who was monitoring. He was concerned after a while & told me I needed a liver biopsy. He recommended my current gastro who is also a hepatalogist to help diagnose me.
Now I only see the hepatologist every 3 months. This hepatologist is knowledgeable, readily answers my questions & is always accessible. So I am much calmer these days because of this.
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