Whats gonna happen next?

Okay so last month i tested positive on my AMA levels. I was recently sent to a rheumatologist from my g.i dr and the rheumatologist ordered me to be checked for various of other autoimmune diseases. I got my results and i had No other ones. I did test positive for fibromyalgia. So now hes sending me back to my g.i dr because he doesn't deal with pbc? I really feel like everyone I'm seeing doesn't deal with pbc.. Im in the U.S btw. Im getting a little frustrated. The g.i dr told me i don't need a biopsy cause i had one in March when they removed my gallbladder.. But three rheumatologist says i do need one..im so confused. Im waiting to get an mri on my liver as well as ultrasound.. And xrays on my back due to severe back pain i don't know why I'm having that maybe from the fibromyalgia. Did anyone else go through this? Oh also my g.i dr said high AMA's don't mean i have pbc..but the rheumatologist says it does mean i have it..someone help?

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  • Hello nessarose714.

    All I can tell you is that back in early 2010 I started itching intensely and it was basically 24hrs a day. I had routine blood check due to it and by beginning November that year I was seen by a hepatologist in local hospital (I am in the UK). He said that day he was going to do some antibodies blood checks. He said my ultrasound I had in a few months prior to seeing him looked pretty much normal. I was still itching at the time. To my knowledge I have no other auto-immune conditions or really any other health issues currently. I only take urso for the PBC diagnosis I got in December 2010.

    My diagnosis went via symptons, bloods and then antibodies which were said to be found in a high titre (measure) of AMAs (for ANAs got a negative). I had no biopsy due to being diagnosed this way but I expect had there been any questionable doubt I would have been offered one. Usually a biopsy can give a diagnosis due to PBC causing cell changes throughout the liver.

    It has to be noted that it could be possible the delay or your negaitve result for being diagnosed with possible PBC could be due to having gallbladder removal as I believe that can alter the LFTs (liver function test) just afterwards. Other medications can alter the blood tests too.

    If you are currently asymptomatic (that is without any symptons) of PBC except questionable blood work then it might be a case your doctor wants to keep checking bloods and keeping an eye on you for any future changes.

    I believe in the US there is a support group for PBC known as PBCers org I believe. It might be worth your while contacting them via phone or email to ask what someone there thinks. I am in the UK and besides the PBC Foundations specifically for PBC there is also Liver North based in Newcastle, UK who do cover a lot on PBC (check out their website) plus there is also the British Liver Trust that has publications on various liver disorders, PBC being one of them.

  • Ok i do have some itching. It was worse a few months back. I still have it at night. I also have extreme fatigue i mean like extreme to where i explained to my family its likeso bad i was scared to go to sleep because i felt like i wouldn't wake. Other than that my lft levels are normal.

  • Hello again nessarose174.

    The one thing I've noticed over time since PBC diagnosis December 2010 is that due to broken sleeping during the night because of the itch (wasn't so bad last night but I couldn't sleep! Probably a case of got into the habit of not doing so expect not to!), I sometimes just nod off to sleep when watching a movie on tv if it has gone 10p.m. I know I will not sleep for long if I go to bed early so tend to go up around midnight.

    I don't think about it but know that when I do go to sleep these days there could be an earthquake and I doubt I'd wake up as I know these days if I get so tired due to broken sleep (as I don't seem to have the fatigue I did in 2010) I sleep deeply indeed. Then thinking a bit more after having children in the mid-1980s naturally you sleep light but it's been some years now since my youngest 'flew the nest' so maybe this is another eason that sleep can return to being deeper.

    I could never sleep whilst travelling (a lot by train years ago) but had children with me but I could never sleep on a coach/car either. Never really had experience of going places by car until I met my (2nd) husband and we got married in 2009 (I was a young widowed mother) but have found in the last 2yrs when we go away I find I cannot keep my eyes open after a certain time of travel and don't even know that I have gone to sleep.

  • Hi nessarose714

    We can all tell you about our own experiences on here but can I suggest that you look up any posts from people in America on here and contact one of them to get help on who your best contact would be for your area.

    Good luck

    Carol x

  • Hi Nessarose,

    I don't know how different things are in the US, but here in the UK I would always advise someone to see a hepatologist (liver specialist) about PBC (even better if you can find one who is a PBC specialist), rather than just a gastro.

    Just having AMAs is not strictly enough to diagnose PBC (according to the formal diagnostic guidelines). However, if you are itching and have fatigue, then they are 'symptoms' of PBC, so I would insist on seeing a liver specialist.

    Also, try not to worry. PBC does not have to be terrible, and Urso can help control it for most people, and there are new medicines just coming through. So relax, have fun, do things you like, and treat yourself - best way to fight all autoimmune conditions.

    Take care xx

  • I have to agree with others here. If you are confused by what you are hearing from your doctors, go see a hepatologist. (I always wonder why someone in a different specialty wouldn't strongly urge you to see someone who specializes in liver diseases) Working with him/her you should be able to quickly learn about the best route for diagnosis and treatment if needed. Just try to be patient, and make a list of questions for your appointments. Fortunately, we in the US can usually find and schedule appointments fairly easily and quickly.

  • Hi nessarose,

    I'm in the US and I worked in healthcare for 7 years. Maybe I can help answer some of your questions:

    "So now hes sending me back to my g.i dr because he doesn't deal with pbc?"

    There are two things going on here - diagnosis and treatment. The GI doctor sent you to the Rheumatologist to get some testing that will assist with diagnosis. Part of diagnosis is to rule out all other possible conditions, which is what the testing can help do. Treatment of PBC falls under the liver or gastroenterology specialty. Treatment will most likely include a prescription for Ursodiol, diet recommendations, imaging of the liver and bile ducts, and monitoring your blood work. The GI will do that, not the rheummy.

    "I really feel like everyone I'm seeing doesn't deal with pbc"

    That's OK. Rheumatologists don't generally treat liver diseases, but they can do great testing for antibodies. You are pretty much done with the Rheummy for now. GI docs have varying amounts of experience with liver diseases. Some GIs have several PBC patients, and some don't. Its a rare disease. If they don't have enough experience, they will refer you to a hepatologist or another GI that has more experience with PBC. It is a good idea to ask your GI how much experience they have with PBC patients, and whether you should see a specialist.

    "The g.i dr told me i don't need a biopsy cause i had one in March when they removed my gallbladder.. But three rheumatologist says i do need one"

    Did the rheumatologists know that you had a recent biopsy? If they didn't read your whole chart, they might have missed that in your history. I wouldn't worry about that because the GI doc is handling the diagnosis, not the rheummy's. If the biopsy is not necessary for him to make the diagnosis, then there might be no point in putting your through that procedure right now. A biopsy used to be a requirement when diagnosing PBC, but the diagnosis procedures have changed a bit - something that your GI would be more familiar with, not rheummy's.

    " my g.i dr said high AMA's don't mean i have pbc..but the rheumatologist says it does mean i have it"

    Your GI is right. Rheummy's go by the presence of antibodies, but your GI is the one who is more qualified to diagnose you. AMAs alone are not enough to diagnose you with PBC.

    So, the bottom line is that your GI is your main doctor. The Rheumatologists were only asked to do blood tests and send the report to the GI. They might be able to help you with fibromyalgia, but PBC doesn't really fall into their specialty. I appreciate that they are trying to answer your questions, but they are not as involved and familiar with your case as the GI is. I believe your GI is doing a very thorough job. Most docs would not take the extra precaution of sending you for specialty blood work like that. Its confusing, but you have us here on the forum and you appear to be in good hands so far with your GI.

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