Awaiting liver biopsy ? AIH/PBC crossover

[Mumoftwo81]

Hi everyone, me again.... Had a busy few weeks. Started on thyroxine as been diagnosed with hypothyroidism now. Following consultant apt she wants to organise a liver biopsy, my blood results are not quite behaving as PURE PBC apparently, my consultant wants biopsy to check for AIH crossover. I have the positive AMA multi nuclear dot pattern so they re pretty sure I have PBC but my ALT has been raised which normally isn't in PBC alone so I'm told. I'm not sure what to expect. Feeling bit anxious. Any words of wisdom please?! Been waiting all week to hear back from consultant to discuss it. 😁 Thanks. (I'm worrying if it is AIH as I've heard you need steroids and immuno suppressants to treat it! )

[Junolee]

Yes, diagnosed with both over 3 years ago. Steroids for 18 months and since on Imuran (immune suppressant) also Urso with iron and calcium tabs. Bloods back to normal and liver functioning normally. Have had ultra sounds, ct scans and MRI as well as scopes and no disimprovement to date. Be careful with nutrition, absorbing seems to be big problem, but I Feel fantastic, hasn't stopped me living my life to the full. Work full time, travel a lot. I'm 47. Good luck. x

[Mumoftwo81 in reply to Junolee]

Thanks for your reply. Did you get the diagnosis from a liver biopsy? Also just wondered do your immunosuppressants cause you to pick up infections? My PBC diagnosis started with an incidental find of elevated alp and alt following a stint in hospital with pneumonia few months after I had my son. Them further investigations. I haven't had any PBC symptoms as yet, so other than the URSO and this up and coming biopsy it doesn't really affect me other than worry for the future!! I'm only 34 so I do worry if my liver will last out!! 😁

Glad to hear you are living life to the full 👍 All the best.

[Junolee in reply to Mumoftwo81]

Yes, I should have mentioned I had biopsy. Don't get colds or infections, get flu jab every year and pneumonia injection. Most of my issues are low iron. Have had elevated makers that they keep eye on.

[teddybear7]

My alt goes up and down. Always seems to send them into a panic but then the next blood test its back down again.

[Belliver]

Hi Mumoftwo81, my advice (& all the ladies @ exercise class), try to be on name brand medication for thyroid, not generic , it's a bit more expensive, but worth it. If it is AIH & you have to go on steroids, research diet implications/ restrictions, exercises that are good for bone health important. Don't be shy about asking any Doctor any questions about your treatment, ask if there is a Hepatology clinic or center for second opinion from Liver specialist. I know how it feels with all this stuff coming at you, I felt rushed into having some tests/ procedures, take your time, get copies of everything for your own records, it is a huge benefit when whatever Doctor you seeing can look through them & decide what test/ procedure indicated or ruled out, sometimes your records/ results don't make it to every Doctor , that's why it important to have your own . A lot of posts on this site have all kinds of tips/ info that are very helpful. Good luck!

[Mumoftwo81 in reply to Belliver]

Thanks for your response and advice 😉 All very helpful. I chased the consultant up today and they are going to discuss me at a meeting in Feb to decide what to do with me as My results are not clear cut. Will see what that brings.

[Sammie7]

I am in exactly the same position as you, diagnosed in Aug 14 with pbc asymtomatic but routine blood test found my alp and ggt were extremely high. Started urso and my alp is now within limit and my ggt very close. Since Aug 14 my alt fluctuates from within limits to my last blood test in December when it was 125 (47 in Sept)?? I am at kings and they too want to do a biopsy to see if I have crossover with aih. To be honest I do not want a biopsy as I would rather not know how bad my liver is ( I am a bit of a worrier) . I do appreciate though they are suggesting it for my own good. The treatment for aih also frightens me, I have an appointment in March to discuss. Sorry I have no words of wisdom but will keep you posted.

[Mumoftwo81]

Good luck, I know what you mean, getting more invasive tests and results makes it seems more real I guess but they say knowledge is power, and it's always good to have a plan, hopefully we will both get one of those soon, all the best. 😉

[DrDizzy]

Hi Mumoftwo,

Your story sounds like mine: hypothyroidism plus AIH/PBC. I've been on prednisone plus urso plus thyroxine for about a year now. I work a full time job plus extra hours. I travel a lot for my work. I was told to watch out for infections but I haven't even had the flu in this past year. In short, I feel great.

Don't worry, life goes on. Learn to live with the illness, and don't let it define your life.

By the way, I should diet, but I don't. I eat chocolate! I even have the odd beer every now and then and nothing happens.

[Mumoftwo81 in reply to DrDizzy]

I love your outlook and positivity! Thanks for your reply. 😉 I too love chocolate!! A bit too much!!

[jiacheetah]

I too have hypothyroidism. Was put in synthroid and lithothyrine after parathyroidectmy. Soon after my liver numbers went up - all of them but it took 4 years and me yelling at the doc that something was wrong before seeing first a gastro doc then a liver doc. Many scans and I biopsy later - here I am with two auto-immune diseases.

I can only say that due to the rarity, most docs not skilled in liver diseases do not know anything. It is like expected a plumber to know how the electrical works.

[Mumoftwo81]

I know what you mean! That must be very frustrating for you! I am a nightmare probably as I'm a nurse and we are meant to be the worst patients! I was on at them from day one of realising my elevated LFTs and ended up self referring at GPs to a liver specialist up in Newcastle who has been amazing, as my first one most definitely wasn't!! I guess it's down to luck. I hope they are on top of your care now. All the best.