What were your symptoms

[Lucycalifornia]

Hello everyone. I am a 35 year old female who has been suffering from very loose stools yellow for 4 months. My legs swell and my feet ache and my hands ache did any of you have these symptoms. My store was tested for fat it was negative no parasites. I had a positive A&A 8 years ago with a low titer I have not been tested for PBC I'm having a hard time even getting my doctor to order liver enzymes I have been requesting a abdominal ultrasound for 4 months. Feeling frustrated

[butterflyEi]

Hi Lucycalifornia

I see you posted a little while ago and no one as yet with experience of this has posted so thought I would jump in with no experience of yellow stools.

I am guessing that as your handle has california in it that you are from the USA. Are you in a town where you can see a different doctor? I think a gastroenterologist would be better placed to diagnose your condition and for a diagnosis of PBC a hepatologist is the specialist who should have the knowledge to help you.

The main symptoms for PBC are fatigue and itching however it is becoming more recognised that brain fog also plays a part in symptoms. Once PBC has been diagnosed then usually the sufferer will be placed on Ursodeoxycholic acid as the first line of defense in slowing down the disease. Some people have a negative response to URSO which causes indigestion and/or diarrhoea.

I have copied the link for two web sites which you may not have looked at in the hope that it might give you some more information.

nhs.uk/Conditions/Diarrhoea...

healthline.com/health/diges...

best wishes

[GrittyReads]

Hi Lucy,

Like butterfly I'm not too sure how you will be fixed in the US for going to another Medic, but if you tested positive for AMAs, you should automatically - immediately - be given a follow-up test to check how your liver function enzymes are ... and that should be checked every year.

It was found that I have AMAs in 1992, and I was rigorously tested for all things autoimmune and all things liver - even though my liver enzymes were fine. When they found nothing wrong, it was suggested that I am just one of those people who have AMAs, but, I was told I should have the liver function tests every year. About 12 years later, I 'forgot' when I moved area, and didn't do it for a few years, but when I remembered I was made to go through the whole detailed testing again by my GPs , and am now back to annual liver check, as I still have perfect liver function tests and no signs of PBC. So on the positive side, I am just one of those people who have AMAs, and may never get PBC.

So, your Medic is already being (8-years worth!) of extremely remiss, if not culpable, so I think you need to see someone else and be thoroughly checked out for all things liver, and autoimmune. As Butterfly says, the main symptoms of PBC are itching and fatigue, and also general joint and muscle ache is now acknowledged, as well as the brain fog, so if none of these are apparent that's all good. However, although I don't have personal experience, I know that yellow and pale stools are symptoms of bile and/or gall bladder issues, so it does need checking. It can be a symptom of PBC, but may be other issues, so it still needs checking. Ideally you may need to see a liver specialist, although I've noted that in the Us Gastros often seem to deal with PBC. Personally if it is PBC I would try to find an actual PBC specialist, as my local 'liver' person in my new area was incorrect in some of what he said.

So, try to see another Medic to get a thorough blood, liver and autoimmune check. You could also talk to the 'PBC Foundation' advisors - logo-link to the website at the top of this page, where you will find phone and email contact details. Also, I'm sure there is a US Liver/PBC society where you could get similar detailed advice. However, the 'PBC F' website is packed full of up-to-the-minute info. and it's worth reading around on there (and on here) to get as much knowledge as possible. Many medics never treat PBC, and know very little about it, so - sadly - we often have to become out own best experts.

I hope this helps, and that you get some advice. Come back on here anytime - tho' week days are better as this site is bit quiet at weekends.

Take care, Gritty

[Shulsey]

They are right, you need to see a GI DR who is educated with this disease. Surely out in California you have some very good Dr's, possibly a heptologist from a university hospital. Im from the U.S., Southern Indiana, so I know there are great doctors around you. You just need to ask for a referral from your current family physician or do a search for a GI Dr near you. He/she can do what tests need done. Then usually they will refer you to a heptologist, someone who specializes in liver & digestive issues. With the brain fog issues, that for me, did not start until I entered that last stage of PBC. Im stage 4 with cirrhosis, small varicies, enlarged liver & my spleen is the same size as my liver. Among other issues. Sounds crazy but it is what it is & Im very fortunate to have found this site of lovely people who understand & help me through the rough days. Good luck to you Lucycalifornia, praying you get some good news.

Stay strong❣️

Shannon

[Shulsey in reply to Shulsey]

Oh I should add that when I was diagnosed my symptoms included extreme fatigue & itching. But I had no clue that it was all caused by PBC until after I was diagnosed. I ended up in the ER for unrelated issues & the attending physician ran my ALK Phos (enzymes) & they were way up in the 2000's. Let's just say I ended up residing at that hospital for a couple of weeks. That's how I found out about having PBC. I was at stage 2 when I was diagnosed, it was in Aug of 2012.

[Lucycalifornia]

Thanks everyone. Waiting for insurance approval for GI dr. I should clarify I had positive ANA. My AMA have not been tested. I was on urso during both pregnancies for intra hepatic cholestasis. (I was not tested for pbc at that time either) I have found doctors are so quick to label gi issues as IBS without properly ruling out other poss causes.

[rubyrose15415 in reply to Lucycalifornia]

Hi Lucy interestingly it was my LFTs never returning to normal after my first pregnancy with ICP that led to investigations and eventually diagnosis of PBC. Apparently PBC can often mean you get ICP - I've had it in 3/3 pregnancies so far.

You really should be checked out properly as if you do have PBC then getting back on urso sooner rather than later would be best

[rubyrose15415 in reply to rubyrose15415]

Oh and I've come across other ICP mommas who had PSC so maybe that's another suspect as I seem to remember positive ANAs can go with that

[Michiganpbc in reply to Lucycalifornia]

Be careful with the GI doctors I was misdiagnosed by two before I referred myself to a liver doctor, request a second opinion if you have any abnormal labs having to do with your liver go right to a liver Doctor. Good luck 🙏

[Brummi]

Hi, I went to my GP about weight loss ( 21lb in three weeks ) went for a blood test , also started going yellow.