Havealittletalk's Blog

November 18, 2009

High ALP + High GGT + High IgM + AMA = PBC

So how did I end up getting diagnosed with primary biliary cirrhosis (PBC) three years ago? It wasn’t easy, believe me.

Stop 1: Family doctor, July 2006

My complaint was that I was more tired than usual. The previous year I had had iron deficiency anemia due to female problems :( leading to a D&C. So anemia was what I expected as this year’s verdict as well.

Wrong. My family doctor, Dr. Cindy McAdams, paid close attention to my lab work (in another post I will explain why I think that worth mentioning. Suffice it to say, I have had doctors who haven’t).

My serum alkaline phosphatase (alk phos or ALP) was 410 (normal is 25-153), AST 74 and ALT 91 (0-40 norm).

Explain.

These are liver enzymes. Abnormal  AST and ALT are linked to a number of conditions and frequently occur in connection with the use or misuse of scores of medications. A mild to moderate elevstion, like I had, is seen in PBC, but is not a crucial bit of information.

Markedly elevated alkaline phosphatase is, and a score of 410 when 153 is top normal is not good. From MedicineNet:

Abnormally high blood levels of alkaline phosphatase may indicate disease in bone or liver, bile duct obstruction, or certain malignancies. The enzyme is often elevated in the leukemic cells in chronic myelogenous leukemia.

A repeat of the bloodwork with additional tests added yielded more bad marks, including a 68 Westergren sedimentation rate (upper norm of 20) and low platelets and white blood count, and I was packed off to a haematologist (specialist in blood disorders).

Stop 2: Hematologist, August 2006

This stop proved useful to rule some things out. The hematologist started with an ultrasound, and that revealed a much enlarged spleen — and enlarged lymph nodes. Things had taken a grim turn indeed, and a CAT scan was ordered to establish whether there was activity in these enlarged lymph nodes. Now I am not a medico, but I know what activity in the lymph nodes could have indicated: cancer.

I was lucky, however, and not sorry to be sent along from that office; the hematology and oncology units were housed together, and it was a place I didn’t want to belong.

I did leave with some new findings:

  • Markedly elevated GGT (585 when normal is 7-32). GGT stands for gamma-glutamyl transferase. High ALP with normal GGT means that the trouble is a bone disease; high ALP and high GGT narrow it down to bile ducts or liver.
  • Immunoglobulin IgM was 810 (norm 40-230). This is what I found out: “Increased serum immunoglobulin concentrations occur due to polyclonal or oligoclonal immunoglobulin proliferation in hepatic disease (hepatitis, liver cirrhosis), connective tissue diseases…”

Stop 3: Rheumatologist, September 2006

I had enough findings to make lupus or rheumatoid arthritis a possible if not exclusive diagnosis, and so I visited the rheumatologist and left behind who knows how many vials of my blood. My ALP was now 481, and other bad marks were added to my lengthening list:

  • Actin (Smooth Muscle) Antibody of 115 units when norm is 0-19. Enter a new possible diagnosis: autoimmune hepatitis.
  • Presence of antimitochondrial antibodies (AMA), and “between 95 and 98% of patients with primary biliary cirrhosis (PBC) have autoantibodies (antibodies to self) in their blood that react with the inner lining of mitochondria.”

Stops 4 & 5: Gastroenterologists, October to November 2006

At this point I should have seen a hepatologist, a specialist in liver diseases, but since there isn’t one locally, a gastroenterologist was the fallback.

Two stops here because the first GI I visited ordered his own bloodwork, gave me an appointment date two weeks later, and when I arrived, he was not. Yes, I know emergencies happen. But when his staff offered to reschedule me in the new year, his first available appointment since he would be out of the country in December, I said no way, just give me my records and I’ll find someone else. They told me to hold on a minute, and came back with the news that another doctor in the practice would see me in an hour.

His approach was to pursue the possibility of autoimmune hepatitis (AIH). We were pretty much down to two choices: that or PBC. And 7 of 10 people with AIH go into remission after 3 years’ treatment. People with PBC don’t.

So the plan was to give me prednisone, and if I responded to this steroid, it was likely I had AIH. If not, then we were left with PBC.

So I took prednisone for 6 weeks.

Maybe you’ve seen it in old British movies: back when that country still had capital punishment, if the judge was going to announce a sentence of hanging,  he entered the court he wearing something like a black piece of cloth atop his white wig. GI2 may as well have been wearing one of those when he came into the examining room. My scores were worse.

Then he did the best thing and the dumbest thing he could.

The best was that he set me up an appointment with a hepatologist at the University of Alabama in Birmingham Medical School. The dumbest was he simply stopped the prednisone.

When you’ve taken 40 mg of prednisone daily for 6 weeks, it is not a good idea to go cold turkey, to abruptly entirely withdraw it. I spent the next month practicing being dead.

Stop 6: Hepatologist, December 2006

I first visited the hepatologist the week before Christmas. All the puzzle pieces were ready to put into place:

An elevation of the aminotransferases alanine aminotransferase (ALT) and aspartate aminotransferase (AST) may be identified in most patients with primary biliary cirrhosis, but significant elevations of the alkaline phosphatase (ALP), g -glutamyl transpeptidase (GGTP), and immunoglobulin levels (mainly immunoglobulin M [IgM]) are usually the most prominent findings….AMAs can be found in 90-95% of patients with primary biliary cirrhosis, and they have a specificity of 98% for this disease.

  • Elevated ALP √
  • Elevated GGT √
  • Elevated IgM √
  • Elevated ALT √
  • Elevated AST √
  • Presence of AMA √
  • The hepatologist started me on 1000 mg of Urso Forte a day.

    January 2007

    A month later my ALP, which at its highest was 481, had returned to the upper limit of normal (on this lab’s scale [they vary]): 117.

    November 2009

    My ALP is still 117. Just how meaningful this is remains to be seen.

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    35 Comments »

    1. Hi Wow I ahve just started down your road. ALP 286, GGT, 413, AST 77, ALT 98 Bilirubin, Albumin, Glucose and CBC all very good. Going for all the HAV HBV HCv AMA etc on Wednesday with a scan too. Was diagnosed as NASH 10 yrs ago but they think this was wrong it may be PBC or the scerolising one or autoimmune hep as I had juvenile R.A. How are you getting on now?

      Comment by Tweedy5 — January 16, 2010 @ 6:08 pm

    2. I’m feeling fine. My bloodwork shows all liver enzymes are in normal range, and an endoscopy showed no varices.

      I can only hope that this can be maintained for a long, long time.

      Comment by havealittletalk — January 16, 2010 @ 6:41 pm

    3. Just found your blog when searching for info re: my kiddo and her blood work, including HIGH ALP.

      Liver/biliary issues have been ruled out, looking at a potential “bone disease” or “bone disorder” depending on which person uses which word.

      Anyway, just wanted to say hi and hope things are going better for you.

      Take care,
      SuperHipChick (aka SHC)

      Comment by superhipchick — February 8, 2010 @ 6:30 pm

    4. Hi again Week 4 of investigation
      Ultrasound normal
      no AMA or iG thingy back yet
      ALP 311 GGT 323 ALT 91 AST 74
      Albumin /Globulin normal
      Blood count normal
      C reactive protein normal
      Hope to get AMA etc back on Friday then I guess it’s MRI looking like PBC or possibly Coeliac disease as have dairrhea too. Hope you are keeping well :-)

      Comment by Tweedy5 — February 13, 2010 @ 7:45 pm

    5. Here we go GGT 504 ALP444 ALT 216 AST 136 pos for dsDNA and ANA but not AMA so leaning towaards autoimmune hep but Dr still thinks it could be PBC or PSC but neg IgM and IgA

      Will let you know. Going for biopsy. How are you?

      Comment by Tweedy5 — March 12, 2010 @ 9:05 pm

    6. It’s weird to watch the numbers go up in just a month’s time, isn’t it? That happened with me the month I was on steroids as a test to see if I had autoimmue hepatitis (if steroid worked, then that would have been the diagnosis — sort of backward reasoning, but…). In reterospect it would have been uch better for lots of reason to have gone on the Urso Forte to see if it worked, and not only because it would have!
      One annoying thing about this illness is that fatigue is one of the main symptoms, so every time I feel worn out I find myself wondering, is this it? Am I always going to be like this or worse? But then I’ll have an energetic day and think, no, I’m just getting old…

      Comment by havealittletalk — March 15, 2010 @ 1:41 pm

    7. Well visiting the surgeon on Tuesday to arrange the biopsy. I will keep you posted … just wish we could get an answer, hope I don’t have to take the steroids!! Take care

      Comment by Tweedy5 — March 18, 2010 @ 1:53 am

    8. gghdhy

      Comment by gbhbgn — March 29, 2010 @ 7:11 am

    9. Hi

      Biopsy says inflammation and mild fibrosis, diagnosis Lupus with Auto immune hep. We will see!!!!!!! Seeing the Rheumatologist in the next couple of weeks. ALP, GGT etc all still up, pretty sore but not too tired. Hope you are well. Take care.

      Comment by Tweedy5 — April 9, 2010 @ 8:04 pm

    10. Ah yes, lupus — one of the possibilities ruled out for me. Lupus AND Auto-immune hepatitis — surely that would be unusual.
      The only thing that seems certain from people I’ve heard from since starting to write about this is no one has had an “it’s no big deal” diagnosis with these elevations. …
      I’m just fine, nevertheless, thanks for asking. Stay in touch (or start your own blog!).

      Comment by havealittletalk — April 12, 2010 @ 9:25 pm

    11. Apparently autoimmune hep can go along with Lupus but my gastro hasn’t ruled out his fav. PBC … I think he’s a bit disappointed he can’t get a definitive diagnosis of PBC. I’m still oopen minded as they all seem to overlap. Thanks for keeping in touch.

      Cheers J

      Comment by Tweedy5 — April 14, 2010 @ 12:10 am

    12. Why doesn’t he start you on a course of ursidol [Urso forte] and see what happens? I’ve found it a side-effect free drug and I think that is generally true.

      My GI put me on a large dose of steroids to see if I responded to see if it was auto-immune hep, and steroids have lots of side effects — especially when stopped.

      When I told my hepatologist about this, he said it would have made more sense to do a trial of Urso and see if I responded — which I did, and pretty quickly, too.

      Comment by havealittletalk — April 14, 2010 @ 10:17 am

    13. Will suggest Urso to him when I go back and see what he says. Thanks for the advice and support :-)

      Comment by Tweedy5 — April 14, 2010 @ 11:27 pm

    14. hi, came across this blog as i searched for my bf who has ggt 400, alt 94, alp 305, c reative protein 62. This is not the first time this has happened, its like the 6th!! They think its autoimmune hep but when they did the biopsy he was already on steroids so the result was inconclusive. His liver function were over 1000 last xmas so this isnt too bad but we are tired of waiting and doctors who just dont know. We’re from gibraltar. We’re hoping to go to the uk for another biopsy and hopefully get a diagnosis. THis is all too much and we r all about to crack. Great to have found this blog, get to meet ppl with same issues and let out a lil steam!!! Hope ur all well and that results come back positive. keep in touch xx

      Comment by melanie — September 8, 2010 @ 6:10 am

    15. Dear Melanie,
      I fully understand your frustration at not knowing what is going on. I think that not knowing — not knowing what you have, not knowing what to expect — is harder to deal with than the condition itself.

      May I suggest that if you can get to the UK that you contact the Liver Research Group at Newcastle University? http://www.ncl.ac.uk/biomedicine/research/groups/liver.htm
      Newcastle has done some of the pioneering research on PBC, and continues to do so.

      My personal inclination is to go to medical school/research programs, although I am in the US so my experience may be different. But the doctors I’ve had who are involved in teaching/research/clinical care have been far more up-to-date on treatments and much better diagnosticians than ones in private practice.

      Good luck!

      Comment by havealittletalk — September 8, 2010 @ 8:23 am

    16. I have just been diagnose with high ALP and GGT readings(171/238). Will be admitted to hospital tomorrow 12 September. What treatment can I expect and what must I be on the lookout for. I am very nervous. Please help. All replies to my e-mail please

      Comment by Carl Venter — September 11, 2010 @ 12:21 am

    17. How is high ALP and GGT treated in general?

      Comment by carlv — September 12, 2010 @ 2:13 am

    18. I am very grateful for reading your experience. My PBC was diagnosed quite differently then most. I suddenly ran 104 fever for a day, next day I was fine, next day 103+, next day I was fine. No other symptoms but high fever and freezing where I could not get warm. This was so unusual I decided I should go to the Dr and have them check it out. They ran blood work and my liver functions were very high. Next thing was a round of ultra sounds and X-rays which all came back normal. My PCP was stumped on what could be wrong and my liver functions were slowly returning to normal as I became mildly jaundice. Due to another health issue I have a Gastroenterologist that I see every few years and he happens to be a specialist in Liver Diseases and lucky for me he is one of the top GI’s in the country so off to his office I went armed with all of my tests results. He immediately ordered more blood tests and diagnosed me with PBC. He swears I am in the early stages but lately I have been having lots of symptoms. I went back to see him a few days ago and he called for more blood work and isn’t happy to hear that my liver aches 80% of the time and it is swollen. I have other symptoms as well, itching, I bruise easily, fatigue I cannot believe and I am very depressed. I sleep 8 – 9 hours a night and really have to work to make myself do anything. I am tolerating the Urso and he has started me on anti-itch meds since I started tearing the skin open on my wrists and lower arms. Interesting disease this is…it behaves so differently in each of us. Thank you for sharing your story and allowing me to share mine. I hope the lab results come back ok with this latest round. He hasn’t put me through a biopsy yet but somehow I think that is in the cards soon…ugh!

      Comment by Tess — September 30, 2010 @ 9:06 pm

    19. I am glad you have a GI who is up on things, and you are certainly right: everyone’s story is different. There are many variations of the onset of the illness, and that, coupled with how little experience most doctors have with recognizing and treating PBC, results in a complicated and oftentimes — usually — frustrating experience. I sympathize with you. It is so depressing to be tired all the time and being tired all the time is so depressing.

      Comment by havealittletalk — October 1, 2010 @ 9:03 am

    20. Hello,

      Looks like we are all in similar boats. I have been having issues with elevated levels of ALP with the latest numbers around 300 (AST/ALT/GGT also up but not quite as much). The weird thing is that all of the tests other than the blood tests have come back clean. Ultrasound showed no obstructions, MRCP showed that my biliary tree was fine, liver biopsy came back normal… it’s just that those silly liver function tests keep on being off. I am starting to get frustrated with this because they have been elevated for over a year and a half now and we still don’t know what it is because all of the next step tests come back clean.

      Very confused about what’s going on with me but hope that it’s not PSC or PBC or cancer.

      Comment by cseteg@yahoo.ca — January 5, 2011 @ 2:45 am

    21. If it is PBS, I don’t think the ultrasound is going to show anything. A biopsy would only if you already had developed cirrhosis and if the samples taken happened to have been from a part of the liver that was cirrhotic. I’m not familiar with the biliary tree test you mention. The only thing I can think of to suggest is that you ake certain you have been tested (bloodwork) for antimitochondrial antibodies since:

      Presence of antimitochondrial antibodies (AMA), and “between 95 and 98% of patients with primary biliary cirrhosis (PBC) have autoantibodies (antibodies to self) in their blood that react with the inner lining of mitochondria.”

      Good luck!

      Comment by havealittletalk — January 5, 2011 @ 10:40 am

    22. hello,

      my 17 year old son has an ALP level of 409. Four blood tests later and still high. Bone scan and live ultrasound normal.
      What does this mean. They are sending him to OHSU now to see a specialist. I am scared.

      Comment by diane loflin — March 21, 2011 @ 1:01 pm

    23. Dear Diane,
      As a parent I can empathize with you; I too would be scared. I’m far from qualified even to guess what the OHSU specialists will find, but going to a major teaching and research center is a very good choice.

      I’ll be surprised if he has what I do — primary biliary cirrhosis — one because he is a guy, and two because he is a teen. That said, there are other liver and biliary conditions associated with high ALP, but I really have only paid attention to info about my own.

      I’d be encouraged by the normal bone scan in particular and the ultrasound too. I hope that you don’t have too long to wait for the appointment — it’s the not-knowing that wears you down — and I wish you and your son all the best.

      Comment by havealittletalk — March 21, 2011 @ 2:28 pm

    24. Hello,

      I just wanted to share some information about my condition for the benefits of others.

      I’m a 24 year old male and I’ve had four or five blood tests within a period of six months, starting from August of last year. These tests have showed my ALP to be fluctuating between 180 to 256 (last blood work showed 200; the ones that showed 200 or less were done in the same lab, while the one with 258 was done in a different lab). Since my ALT, AST, and GGT were always normal, I was diagnosed with Gilbert’s Syndrome because my indirect bilirubin was always high. Also, I’ve had two abdominal ultrasounds with a period of 4 months between them, both came out negative.

      Still, I’m confused why should my ALP remain high? Though this study (1999) says: “a familial increase in serum alkaline phosphatase levels has been reported in persons with Gilbert syndrome.”

      I’ve posted a detailed history and symptoms with complete blood test results here:

      http://gilbertsweb.yuku.com/sreply/7087/Please-List-your-symptoms-and-details-

      Comment by Qatada — March 31, 2011 @ 3:34 pm

    25. Thank you for this — something totally new to me. I appreciate your taking the time to write, and best of luck!

      Comment by havealittletalk — March 31, 2011 @ 8:08 pm

    26. I am grateful for your input on this. You seem very well informed by all the research I have done myself, and yours seems to match mine. I have been diagnosed w/ PBC about 6 yrs ago now. The biopsy last yr said it was in stage two, and had close to normal levels then, but the past year they have elevated and stayed that way – alk phos 268 to 304, ALT 76, AST 55, Bili 1.5 and GGT 130. What I would like to know is how often I am supposed to get a biopsy, which I guess would be gauged by the bloodwork. I want to know how fast it is progressing and how much time I have. Everyone is different but I would think if the Dr would look at all your history and stats they could come up w/ an approximation. If the levels never go back to normal, then obviously there is damage being done constantly, but how quick? I have heard a normal biopsy time is every 5 years, but if your bloodwork is constantly high I would think it would be more often. What do you think?

      Comment by Lisa Minnick — May 9, 2011 @ 3:54 pm

    27. There is an Updated Natural History Model for Primary Biliary Cirrhosis — updated for 1994, that is — from the Mayo Clinic where you put in some of your test results and age and it spits out an Estimated Probability of Survival (%) for up to 24 months. But I don’t know if it is still used, and the most important thing to remember is it was devised before Urso Forte and other treatments. From what I’ve read lately, the biggest factor in prognosis is response to Urso. I’ve never had a biopsy because the approach the doctors I’ve seen take is that it wouldn’t affect how they treated or otherwise monitored my “progress” and that the biopsy of as large of an organ as the liver is an iffy proposition since a limited number of samples are taken. Instead, one thing they do in addtion to major bloodwork is an annual endoscopy to look for varicies in the esophagus. If these are developing, they can be banded before they cause a massive bleed. Also, I figure that this gives them some staging info too since developing portal hypertension means the disease has gotten worse. It seems I read somewhere that the bloodwork numbers themselves are not exactly great indicators of staqe of illness. After all, on Urso your bloodwork could normalize, but that hardly means you are normal: you’ll never be normal again. My bloodwork looks pretty good, a little, but only a little less good this year than last. But that doesn’t mean I won’t be having another endoscopy in the fall, which makes me think that the bloodwork alone isn’t altogether trustworthy. Nothing seems to be. There are too few of us with the disease who have been followed for too short of a time and too little is really known about the disease and about what Urso is and isn’t really capable of doing in the long run to have any certainty about anything — in my opinion. And remember, that’s all I have to offer — I was an English major, for heaven’s sake! Good luck and stay in touch.

      Comment by havealittletalk — May 10, 2011 @ 9:24 pm

    28. Hello everyone, thanks for all your input. I am at the VERY beginning of all this. I’ve had two bloodwork-ups and an ultrasound. My AST went from 128 to 249 in four weeks time. ALT from 150 to 365 in the same amt. of time. GGT is at 211. ALK PHOS is high at 146. Cholesterol is also high at 242. I’ve never had a weight problem, but chose to shed 20 lbs. over a 11 month period through a weight loss center. I took a daily pill of Phentermine. I stopped that with the first results of bloodwork. I don’t have the ultrasound results, but I have an appt. w/a gasteroenterologist soon. No symptoms at all. I have only been a nightly drinker for the past couple years only. Course, I quit drinking entirely after the first test result a couple months ago.

      Comment by Jean — January 6, 2012 @ 7:04 pm

    29. Thanks for all your information. I was diagnosed in December 2011, almost stage three PBC. I started URSO two months ago and my Gamma GT and Akaline P. numbers are half! I am in normal range of Gamma GT now which is amazing as I was up to over 200 and my AP was over 400 and now 182. I have also read however that this does not mean that you are getting better but I still hope that it is somehow encouraging.

      Comment by debbe — May 23, 2012 @ 11:13 pm

    30. I just learned that my bloodwork from last October came back with a high AMA M2. My doctor didn’t see fit to tell me or to investigate. I recently asked for my lab work and saw the results. I asked for a second opinion and that doctor referred me to a GI doctor in the area. My liver enzymes all came back normal as of this July but I have osteoporosis and thyroid issues which seem to go hand in hand with PBC. The GI won’t start me on Urso without a liver biopsy. I have an appointment at the Mayo clinic in Jax. FL in October. I’m not comfortable letting just any doc do a liver biopsy. I would love to learn that I don’t have PBC but I’ve read that a high AMA M2 is pretty much definitive. I’m stunned, scared, and wish I didn’t have to wait until mid October.
      Thanks for listening and for sharing your story.

      Comment by Helene — September 4, 2012 @ 10:38 pm

    31. By the way–I’m an English major too!

      Comment by Helene — September 4, 2012 @ 10:39 pm

    32. I was diagnosed 5 years ago after seeing my GP for what I thought was depression. Blood results showed high alp, ast and ggt. I was then referred to Gastroenterologist who said I also have a positive AMA. He told me I have PBC. Since then I had good weeks and occasional bad days. Referred on to Hapatologist who advised biopsy, which staged me at 3. By now itching in palms of my hands and soles of my feet uncontrollable, I am now on Rifampicin and Atarax plus the usual meds which are not working efficiently. My liver is very enlarged,mdown to the umbilicus and across to the right side down towards my hipbone. After a few months of waiting for an appointment at the QE in Birmingham, I am now on the liver transplant list

      Comment by Tina perry — December 22, 2012 @ 9:46 am

    33. This is the second blog, of your site I read through.
      But yet I personally enjoy this 1, “High ALP + High GGT
      + High IgM + AMA = PBC | Havealittletalk’s Blog” the very best. Regards ,Katrin

      Comment by http://tinyurl.com/nextcull36389 — January 31, 2013 @ 5:26 am

    34. Today my 42 year old wife has an Alp of 550, GGT of 130, Ast of 43, Alt of 43. She had the Gastric sleeve 12 months ago and has lost almost 100 pounds. Her Liver biopsy 12 months ago showed only mild inflammation with no cirrhosis and was diagnosed with fatty liver. Tested negative for Lupus I’m assuming using an ANA screen. 12 months ago her Alp was 390, Ast 68, Alt of 56. Her Ast and Alt both dropped with weight loss but her Alp stating going up a few months ago.
      Went see a GI two weeks ago and now she has tested Positive for an ANA and AMA screen with the above mentioned numbers. He said the blood work did not match the Liver biopsy so she is repeating the Liver biopsy in a few days.
      anyone think this could be related to the Gastric sleeve surgery?

      Comment by Vick — August 28, 2013 @ 10:32 am

    35. Amazing! Its genuinely awesome piece of writing, I have
      got much clear idea concerning from this paragraph.

      Comment by web page — October 11, 2013 @ 2:23 pm


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