My Endocrinologist won’t refer me for my PBC

[Joanneconnor]

Got diagnosed 9 months ago through auto antibody tests, my doc is leaving the referral to my Endo and he doesn’t think I need Urso in until I have symptoms And he doesn’t feel it does anything anyway, I had early signed picked up through endoscopy to look at gall bladder and ducts in 2015 all liver blood results are ok, I also have Hashimotos thyroidosis

[ninjagirlwebb]

Unless your doctor is a pbc expert, I think it is irresponsible of him to tell you what you need or don’t need. You should get a consultation with a hepatologist who specializes in liver disorders & is knowledgeable about pbc to make that decision about urso.

Why is he leaving the referral up to the endo?

Why can’t he give you the referral?

You have to advocate for yourself. All I know is that the sooner you are on urso, the better it is to delay the progression of pbc.

Good Luck.

Haley

[Joanneconnor in reply to ninjagirlwebb]

I got my diagnosis in a hospital 100 miles away paid private for antibody tests then he said I will send your doctor a letter to get seen on the NHS, my doctor twice said they would refer me but never did then they told me to ask my Endo next time I went, all bloods are in normal range, but I did tell him I have pigmentation of the skin on my face (a symptom of PBC) and also if I drink alcohol I only need 2 spirits and I’m drunk for hours, like my liver is struggling, Endo said well you haven’t had a drink for a while! I said I have! How does he know what I have been drinking ..... idiot!

I’m really on the ball with my thyroid and am very proactive with it and just want to do the same with the PBC!

[ninjagirlwebb in reply to Joanneconnor]

Yes...please use the same proactive approach on the pbc as you did the thyroid. Doctors have too many patients & it is best that we help them & ourselves along the way! Keep us posted!

Haley

[Joanneconnor in reply to ninjagirlwebb]

I will ninjagirlwebb thanks, he said he would look into it and speak to a colleague before he will refer me 😤

[ninjagirlwebb in reply to Joanneconnor]

If he doesn’t refer you, please contact the pbc foundation & have them advise on how to go about getting what you need!

[Joanneconnor in reply to ninjagirlwebb]

I will thankyou

[EileenUSA in reply to Joanneconnor]

Yes--please contact Roberts team at the PBC Foundation (they sponsor this forum and they are based in the U.K.) I am sure they can get you help! pbcfoundation.org.uk

[Joanneconnor in reply to EileenUSA]

Ohhh thankyou I will 🙂

[Yankeerose3 in reply to Joanneconnor]

What's the pigmentation you are talking about? With my insurance I don't have to have a referral, so, I got a second opinion with an hepatologist on my own after my PCP said GI Dr needs to refer me and GI dr said I am not bad enough to see a hepatologist. I probably had to wait longer for the appointment, but he said he felt coming to him was a good idea. I have a lot of liver issues. Hooked me up with one of his PA's, Karla. She awesome. I can call her anytime and is able to shoot him an email any time she has a question. He also said, anytime I want to see him I can plus I can email him directly. (They are an hour away but worth the piece of mind)

[Hidden]

I agree with the other comments here, contact the PBC Foundation they will help guide you. It’s your right to a second opinion and I’d tell the doctor you want to exercise that right, and you want a referral to a liver specialist.

[Ballymahon2]

I have no symptoms was diagnosed with pbc 18 months ago i was prescribed urso by my hepatologist

[Ballymahon2]

I think urso is only prescibed if lfts are elevated you said yours are normal maybe thats why your doctor wont prescribe urso

[Yankeerose3 in reply to Ballymahon2]

All my liver enzymes are normal. PBC shows up on all the ultrasounds and MRI'S I have had. Been on urso since biopsy in 2013. Told it won't make it better but will help keep it from getting worse

[GrittyReads]

Ballymahon is right.

It's possible that you do not, yet, have PBC … and you may never get it. And if you do not, yet, have it, then you shouldn't be given urso.

If all your blood tests, especially the liver function tests (lfts) are normal, then just having the antibodies (AMA-M2 = antimitochondrial antibodies) does not mean you have PBC.

It does, however, sound like you need other advice, as I don't think that your Doctor or the Endo are necessarily following the correct, latest guidelines for the diagnosis and treatment of PBC. If you have AMAs, but your blood tests/lfts are normal, but you do show some signs/symptoms of PBC, then you need to be more thoroughly checked.

You cannot be diagnosed just on symptoms or on just one diagnostic criterion (eg AMAs). PBC is diagnosed mainly by the presence of AMAs, 'and' abnormal lfts.

Either one, on their own, is not enough for a diagnosis of PBC, and then treatment with urso. But, if there is cause for concern, such as symptoms of PBC, then the next line of investigation should be a liver biopsy - only this can spot the damage at the micro, micro level where the PBC damages the microscopically tiny biliary tubules, that make up the mass of the liver.

NB the issues you mention in relation to the gall bladder and bile duct are large scale, and I think the tests you mention also only check things at a large scale.

Please do contact the 'PBC Foundation' who host this site on 'Health Unlocked - see link at top. They are UK based, but they are one of the leading organisations for advice and support on PBC. If you join (it's free) you can read all the info on their site, which contains all the details about what PBC is, symptoms, tests, diagnosis etc. In fact, they worked with leading UK and Eu PBC specialists, last year, and include on the website, a summary of the most recent and comprehensive 'medical' guidelines for the diagnosis of PBC.

[I think all PBC sufferers should give their doctors etc, a copy of this!]

Please check them out, as maybe they can help you find out just exactly what is going on.

Take care,

Gritty.

[ninjagirlwebb]

Adding on to what GrittyReads said about biopsies. They are also used to investigate whether there are other liver conditions if not pbc. Sometimes blood tests alone are not enough to diagnose definitively.

Haley

[mrspeffer]

Good morning....Sorry to hear you are having a tough time with your Endocrinologist. I, too have thyroid issues and had an Endo. that was , let's just say. stubborn. I have been diagnosed with PBC, some 20+ years ago through many years of elevated LF's and then finally a biopsy to "rule out" all other possibilities. I do not do well on URSO, and do not take any medicine for my condition. My AMA is negative and my fibroscan is normal. So, there could me a "method in the madness" of your doctor to wait and see what is happening. Skin pigmentation is also caused by thyroid disorders, like Hashimoto's. and since Hashimoto's is an auto immune disorder, it makes sense that your AMA would be positive. AMA just tells us there is some type of autoimmune process taking place.

As others mentioned, if you are concerned, seek advise elsewhere...it's like we have to wave our own flag, but it's get attention when needed. So, revel in the fact that right now you only have to deal with your Hashimoto's and do your best not to project into other diseases. The best you can do today is to relax, eat clean, and enjoy the day. Be well

[Joanneconnor]

-Antinuclear Ab titre 1:400

-Antinuclear Ab pattern- positive multiple nuclear dots.

-Mitochondrial Antibody-positive

-Mitochondrial M2 Antibody- positive

No raised LFTs

My Endo said he’s gonna see me every 4 months as he said he will have to keep an eye on me he said I could quite possibly add another auto immune to my collection

[JaneIng in reply to Joanneconnor]

Is have elevated AMA M2 but normal LFTs. My Hepatologist said no need for URSO until LFT is out of range. One reason is to check the effectiveness of URSO, you need to have higher LFT to begin with. I have come to peace with that decision because almost all meds has side effects that I can do without.

[Joanneconnor in reply to JaneIng]

Oh ok, but surely either way it will maybe prevent it from starting with high lfts