Anyone been diagnosed with hypothyroidism since they've had PBC?

I have been diagnosed with PBC about 3 years now and on this 6 monthly blood test my TSH is now 10. It was 4.5 in July. My T4 is normal. I was having a 6 month break off URSO to see if it affected my ALT and ALP as they were fairly borderline go starting it in the first place. They have worsened a bit and I'm waiting for my consultant appointment now. I assume this TSH means I have an under active thyroid. I understand that when you have PBC you are more likely to develop other autoimmune disorders. I am waiting to discuss this with my gp, but wondered if any of you may have experience of it? I expect I'll end up on thyroxine?! Thanks in advance.

13 Replies

  • Hi, there is a direct link between thyroid disease and autoimmune liver disease with autoimmune thyroid disease being the most likely link (hashimotos) I think my original post is on the forums "The dangers of undiagnosed hashimotos"...I have had hashimotos for over 25 years and my gp would not even look at the went undiagnosed with me all this time. In Jan 2012 I finally got my diagnosis, but it was too late for March 2012, I was admitted to hospital straight from the gp surgery and I got diagnosed with AIH/PBC overlap....I am still not on treatment for hashimotos despite the diagnosis, and the autoimmune liver disease. I truly believe after my research that if my thyroid problem had been treated all those years ago, I would not be in the situation I am now.

    Take care xx

  • Hi I was told years ago that my thyroid wasn't working properly but wasn't given any treatment also my mother has hers removed in her twenty. I don't if that was the start of things but 4 months ago I was diagnosed with PBC after a year of blood tests that was showing all the signs of this decease I now have. Who know how we really get this when a lot of people even doctors know nothing about it.

  • Thanks for your reply. I hope you areon the right treatment for your Aih/PBC now. If only Drs listened more, it is our bodies after all so I'd like to think we would know if something wasn't right. I've seen my specialist today and they are thinking they may biopsy me as they would like to check for AIH to be on the safe side. I've not presented as a typical pure PBC patient apparently! Well good luck, I hope you are doing ok 😉

  • Hi mumoftwo81

    I think I've gone through the opposite of your diagnosis. I

    have been found AMA POSITIVE so PBC I was diagnosed in October last year and still waiting for my specialist appointment which is next month. I was already found to have an Underactive thyroid and have been on thyroxine for years.

    It didn't make much difference to my life other than I was falling asleep often and you need to take medication which needs monitoring yearly, you will be on it for life and sometimes they change the dosage. I have not been prescribed urso yet as apparently only the specialist can request this?

    All the best.


  • There is a well known link between the two, however I didn't discover this until I was diagnosed with PBC - some 20 years AFTER my thyroid stopped working! I wish someone had explained the link at the time, as it meant I would have been in a better position to get a speedy diagnosis for my PBC.

    I'm really surprised to hear so many of you are not being treated for your thyroid problems. Are your levels within the normal range? If not, do push for treatment, you'll feel so much better. Plus all sorts of issues in the longer term can be caused by under OR over active thyroid

    Best wishes to all


  • Thanks for your responses. It's seems like autoimmune conditions are very confusing and nobody including the professionals seem to have all the answers. i suppose knowledge is power and if we know what we are dealing with and what treatment we need it's half the battle 😉 X

  • Hi had under active thyroid for 28 years it collapsed when I had hysterectomy in my early thirties. However mine has been looked after and checked and correct medication given. In October last year I was informed by consultant , my GP already told me she thought I had it, PBC. it is an auto immune disease as PBC is.

    However my thyroid stopped working properly in October ironically when PBC diagnosed. GP dealt with thus by icreasing thyroid med.

  • my started with psoriasis, three year later graves (thyroid). I went from a 150lb to 95lb. had it remove. now I have underactive thyroid. About 3mos ago, I was so tired, I could not get out of bed. I though it the pbc. , It was the thyroid. I went from 112mcg to 150mcg of levothyroxine. dr. had to increase it four time. Feel great now, have my engery back.

  • Hi there, I have an underactive Thyroid,diagnosed 30 odd years ago, 10 years ago was diagnosed with PBC, Autoimmune disorders often mean if you have one you will also get another, been on Thyroxin for 30 years, no side effects, taking Urso for PBC, apart from fatigue mainly in the afternoon, life seems to go on as normal, so try not to worry,Best Wishes , Mylo2

  • I was diagnosed with PBC in 2014 and Thyroid cancer and Hashimotos in 2015. So yes, there was a connection, but I don't know how long I had the hashimotos. My TSH was in normal ranges the whole time, so nobody checked any further on it.

  • They check my thyroid every couple of months they seem to be waiting for it.

  • Hi Mumoftwo81,

    I was diagnosed first with hypothyroidism. Getting tested for that led to the discovery of my liver problems.

  • Hello,

    I have PBC and have just been diagnosed with hypothyroidism, so was looking ehat had been said about it on the forum. Hopefully you'll still read this :)

    I will be trying low dose thyroxine meds soon. Already on Urso. It seems once you have anything auto immune symptoms and other conditions often appear!

    Same as you my TSH level is a bit high, have many symptoms so hoping the thyroid meds can dampen down some of them.

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