I have chronic severe daily nausea with many other chronic issues such as burning urination. I am in so much pain on a regular basis that I am unable to participate in normal life activities. My Aunt was recently diagnosed with PBC which got me wondering about myself. I am only 24 and have had an elevated ALP level ranging from 150 to 163 (top reference rang of 115) on 4 separate tests over the last year and a half. The other LFT numbers have been normal. I also had a severe case of pruritus a few years ago that came on suddenly for no apparent reason, but thankfully went away after a few months. I asked my GP to do the AMA test and an igm test after researching PBC for my Aunt. My AMA level was 24.3 which fell into the equivocal range. Negative less than 20 and positive greater than 24.9. I have read that in PBC, the Igm level is almost always elevated and my level was actually in the very bottom of the normal range. I would appreciate any comments about my situation. Has anyone first had an AMA level in the equivocal range and still ended up being diagnosed with PBC. Can you have PBC without an elevetated Igm level? Am I too young to have PBC?
Equivocal AMA: I have chronic severe daily... - PBC Foundation
Equivocal AMA
Usually pbc occurs to women older than you are.
Elevated Alk Phos might either be liver or bone issues. The alkaline phosphatase test (ALP) is used to help detect liver disease or bone disorders. In conditions affecting the liver, damaged liver cells release increased amounts of ALP into the blood. ... If one or more of them are obstructed, for example by a tumor, then blood levels of ALP will often be high.
Your doctor needs to investigate why the Alk phos is so elevated. Maybe you can go to a Hepatologist who is a GI specifically focuses on the liver to answer your questions.
My ALP test last week came back was short of 500 last test was Sept it was 360 my bones are aching like crazy my biopsy is wed I'll wait on those results but I have a feeling I have both PBC and bone issues all the hep tests are negative thank God lupus lime gout RA all negative so not sure why my results came in so high but I do know the week I took the tests I was itching like crazy at night I think that's an indication when we get flare ups
Are you on urso yet? That should bring your alk phos down if you are a responder to the meds.
Also did your doctor check your Vitamin D levels? Lack of D can cause bone aches.
I was lacking D & my hepatologist prescribed mega doses of D (10,000 iu's or something like that) which I took for 2 weeks to bring it back up. Then to maintain the D levels, I take over the counter D3 2,000 iu's daily. It's fine now. We test for that quarterly.
Also one of the first things my hepatologist told me was that bone density issues are more prevalent due to pbc. So he ordered a bone density test to set up a base line for comparisons. I recently had another done & I am losing some bone mass. So also taking daily calcium supplements.
Good Luck with your biopsy. You will be in my thoughts on Wed. 😊 Sending good vibes.
Hopefully it will give you some answers so that your doctor can plan a course of action to help you.
Thank you so much!!
Yes my vitamin D was 19 my primary doctor prescribed 50000 which I started this week I take 1 a week for 12 weeks then 1 a month last test in Sept it was my B12 that was low and they gave me B12 shots in Sept my vitamin d was 30 .. weird it dropped so much.I'm not on URSO yet but I'm sure i will be after the biopsy. Also my Bun was high that's a new one it's been fine my RDW and MPV high also the sedimentation rate was still high and the CRP was still high . I guess will wait until the biopsy comes back which I won't know anything until the 19th that's when the doctor set up the appointment with me after the biopsy on wed. Happy New year !!
Dwaffle16,
I'm sorry to hear of all the health issues you're having. You poor thing. You're so young. ❤
To answer your question, usually there are 2 criteria needed to confirm a PBC diagnosis. Elevated liver function tests (LFT's) and a positive AMA-M2. It sounds like you have both of those. 😔 I was told a AMA-M2 over 1 was considered positive.
You need to be referred to a hepatologist (liver specialist) in order to get a more reliable diagnosis. A fibroscan or a biopsy may be needed as well depending on where you live.
The symptoms you describe sound very much like what others with PBC experience. I have an elevated Alk Phos (ALP) and a positive AMA-M2 only. All my other levels are normal except my AST (LFT) which just recently came back "below" normal. I've been diagnosed with PBC for over a year now.
Do what it takes to see a hepatologist as soon as you can. The medication for PBC (Ursodiol) really slows the progression of this "already slow" disease down. If you are indeed diagnosed with PBC then the sooner you get started on it the better.
Join the PBC foundation above. They can send you more information about this auto immune disease that may answer other questions you may have too.
You'll find lots of support here on this site. There are others around your age and a bit older that have PBC. It's rare, but not unheard of to get PBC at such a young age.
You're not alone. Read all you can here on this forum. Others will chime in soon and offer their advice and share their experience with you. In the meantime, try to take good care of yourself. Try not to stress. I know it's hard. Take a deep breath and know that there is help. ❤
Stella
Thank you so much for your reply and advice. I will definitely follow up with a hepatologist. I have been trying to find out what is wrong with me for the last eight years and have been to dozens of doctors. If it does turn out to be PBC, I will just be relieved to finally find an answer. And I forgot to mention something I found very disturbing. I had the results of my AMA test in my hand on a piece of paper when my GP called. He told me my test was negative!!! I just thought that was incorrect to call an equivocal result negative. I have never before joined any group like this and am totally new to this process. Thanks again.
Always get a copy of all your test results & have them handy. When you see the hepatologist, give him a history of your medical issues along with key items flagged abnormal in your tests. This will help the doctor better evaluate your case.
Before I saw the hepatologist, my primary care doctor send my blood results to the hep doctor & also discussed my case with him before my appointment. That way hepatologist has the full picture.
Good Luck!
Would recommend you see a hepatologist
My first AMA test in 2014 was negative, then 2016, came back like yours , then 6 months later, came back positive at 1:240, then came back in February 2017 at 1:1,286, then about three weeks ago, it came back 1:640. It changes.
I was diagnosed with PBC (likely stage 1) in Feb at UCLA Hepatology. My AST and ALT have come back doubled normal range since 2014. My ALP has never been higher than 130. Now, my ALP is 78, after being on Ursodiol since Feb. I should note I also had a fatty liver from 2014 to earlier this year. I corrected it with diet.
I’ve never had a biopsy, just diagnosed by the elevated numbers, high ALP, AST, ALT, GGT, IgM, and AMA.
With an elevated ALP and low positive AMA, to me it seems indicative of the beginnings of PBC. Also, your family history is concerning. Go to a hepatologist soon, get evaluated and if urso is recommended, start it, it will help and prolong life. You’ll be ok, hang in there!
Dwaffle16: I am so sorry you suffer with the urinary pain. Among other autoimmune diseases, I also have Interstitial Cystitis. That is when the immune system attacks the lining of the bladder. It can be very painful and mimic a UTI. After many years of having Rimso bladder irrigations for the I.C. I discovered an inexpensive antidote. All those years I didn't know the treatments are not at all good for my liver, but my Urologist retired and I quit having them. Whenever I have bladder discomfort or an I.C. flare, I use D-Mannose Powder by NOW (brand) and I buy it at the local Vitamin Shoppe. I drink 1/2 level tsp. of the powder in 4-6 oz. of water. It is clear and slightly sweetish, but perfectly safe for diabetics, or anyone for that matter. I believe you can also buy it in pill or capsule form. I will use it according to directions for a day or two, that's all it takes. Many have said it is a lifesaver and will cure a UTI. D-Manose may be helpful for you with your urinary pain and certainly worth a try. Best Wishes.
I have had burning urination my whole life and it burns for hours after. It often keeps me up all night which makes any normal living impossible. Some doctors have called my condition IC. I have not tried D-mannose powder. I am going to order it right now and try it. Thanks!
I hope it helps. I did make one slight mistake as it calls for 1 tsp. and I was thinking it is 1/2 tsp. Just follow the directions on the bottle. It won't cure I.C., but will make life a whole lot better. I also like to drink a hot cup of organic corn silk tea near bedtime, when I can remember. It is not only relaxing, but helps to keep a clean, healthy bladder. Both of these items also help immensely with kidney stones. You probably already know you should always drink lots of water. Good luck.
I am very sorry to hear you aren't feeling well. One can distinguish the origin of a high alk phos through the alk phos isoenzymes test. This will determine if a high alk phos is attributable to bone or liver. I have run high LFTs since early as my 20's, as well. I worked in a hospital lab so it was easy for me to get my blood tested regularly. However, I didn't get diagnosed with PBC until nearly 30 years later when my AMA came back positive. My diagnosis was confirmed by both a liver sonogram and a liver biopsy. I think you may be in the very early stages of PBC, and I was also probably in that stage in my early 20's too, but I just didn't know it. Your family history and your borderline lab test results would indicate that's a strong possibility. As far as your chronic severe daily nausea and burning urination are concerned, this may or may not be attributable to PBS, another autoimmune disease or something else entirely. You really need to see a specialist familiar with PBC to resolve your health issues so you won't have to keep guessing. I wish you the best of luck and please report back when you find out more about your condition.
Thanks. I will get to a specialist and post what I am told. I made a list of calls to make on Tuesday after the holiday. I am a bit confused over whether to go to a gastroenterologist or a hepatologist?
Dwaffle16...gastro or hep dr will be your call. Some of us see GI’s, some see hepatologist. My GI is very well trained & knowledgeable in the liver field. Best of luck to you.
I was diagnosed by a GI and I continue to go to him for monitoring and Ursodiol prescriptions. I think most GI's have training in liver disease diagnosis and management. So far so good, so I'm satisfied. Good luck to you!
Ditto👍
Not my GI, liver is not his specialty. So he referred me to another GI who is a hepatologist.
But I still go to my GI because he is also my primary care physician. I see him for my annual physical & other general issues. And I see my hepatologist for the PBC.
How does the sonogram help with diagnosing PBC?
Does it?
Ultrasound was done just to get pictures of my surrounding organs, not to make diagnosis. Diagnosis was made on AMA M2 & ALP. then I had fibroscan. My GI doesn’t like to be invasive on something already disturbed unless he sees necessary. I have no reason to question what he feels best. Why would I want a tiny speck of my liver removed when that tiny speck won’t tell the overall condition of my liver?
Excuse me...not just for surrounding organs. Liver & surrounding organs, as well as the aorta.
In my case both my GI & hepatologist wanted a biopsy to diagnose. My sonogram was normal. GI had that done prior to referral to hepatologist & biopsy.
An ultrasound was the first test I had done when my GP suspected something was amiss. She neglected to fill me in on what she thought I might have. I remember the tech performing the test kept making comments about how dense my liver was. Later, when the radiologic report was produced, I remember reading something about scarring in my ducts but it was so long ago I can't remember the specifics. That was how I learned something was wrong with my liver, without knowing what it was yet. It was quite scary and alarming at the time. I think being in the dark is the worst.
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