Confused and freaking out

[Smarties18]

Hi,

I should preface this by saying that I have OCD, and, since having my son, health anxiety. I don’t cope well with the unknown and I know I need to find strategies for dealing with fluctuations in my condition given the nature of PBC.

I was diagnosed in around 2010, and have generally responded well to Urso, with my LFT results usually being either normal or not far above normal. There have been a few times when they’ve increased - once when I started a new medication, once when I needed my urso increased, and once after having my son and possibly a drug-induced liver injury.

I had my first fibroscan a couple of months ago and it came back as normal, which I was delighted about. And really surprised given how long I have been living with PBC.

However, I’ve just had my latest LFT results and they were not good. My ALP has gone up to 280, Gamma GT is around 300 and ALT is 69. Bilirubin and serum albumin are normal.

I suspect two possible reasons for the spike. One is that I had a dose of antibiotics in August (though my GP thinks that was long enough that it should have normalised again). The other is that I have gained weight. I am already on the max dosage for urso but if there were no daily max, based on the dosage per kilo I’d be on a slightly higher daily dose.

I’ve resolved to lose weight to see if it helps, and am trying to remain calm. I have always assumed that you’re either an urso responder or you’re not, so I’m hoping it’s not the case that it’s just not working for me any more. My GP is going to write to my consultant to see if he wants to see me sooner than March.

I just hate the uncertainty and the depression I feel when I have a ‘down’ on the ‘ups and downs’ of living with a chronic disease. Since becoming a parent it’s so hard not to catastrophise, especially as an OCD-sufferer.

Any thoughts or words of wisdom please?

Thank you

[vicary]

Hi , im so sorry to hear you are having should a bad time ... i too also suffered badly with OCD & was diagnosed in 2010 with PBC . I responded to urso for the 1st couple of years then became none responsive ... higher doses made me extremely ill . I also use to have high aniexty levels & worry all the time ! I was aware that aniexty played a big factor with regards to my liver , the body doesn't react well to worry & anxiety so I decided I needed to get help with my OCD & started by talking to my GP about it who in turn referred me . I won't say it was easy because it wasn't, but the weight does start to lift when you let it all out & are given techniques & support to help you cope with yr OCD . My anxiety levels dropped hugely & my health stabilised for a good couple of years , but due to being unresponsive to urso & anything else they tried ( this isn't the case for everyone ) my PBC elevated & in 2019 I had a liver transplant ... I really do believe if I hadn't got help for my mental state I really wouldn't have been able to get through everything I have .

I still like things done a certain way but by no means does it rule my life anymore ... I have been given the gift of life & I'm thankful everyday . I take one day at a time & enjoy it to the fullest . None of us know what the future holds & life is far too short to worry about mundane things please reach out for help it's the best thing I ever did . PBC treatments are advancing all the time so hopefully your consultant will have other options for you .

I wish you well & hope with all my heart you get help & things improve.

Take care ❤

[Worried-mum1 in reply to vicary]

Well written and insightful. Keep strong, you are more in control than you realize. Each day has its challenges but with a positive attitude and support will win the day.

[gillrich]

Please contact the pbc foundation th only pace to get accurate and up-to-date infoPbcfoundation.org.uk

It is free to join and as a pbc suffer diagnosed 19 plus years ago I can assure you you will never feel line again . It is an amazing family to belong to. 15000 members world wide xx

[mtk0925]

ALP can stay up after pregnancy. ALP is also in the muscle and bone it could be that. I wouldn’t worry too much. I know easier said than done I just had a baby as well my liver enzymes were fine during pregnancy then jumped up after having her

[Smarties18]

Thank you all for your comments. I’m feeling calmer now, and having eaten a more healthy diet for the last three days I feel more in control. A lot of my anxiety is linked to guilt I think - guilt that I don’t look after myself better.

[PBC_FOUNDATION Partner Administrator PBC Foundation]

If you are not already a member of the PBC Foundation please do go onto our website pbcfoundation.org.uk and join, it is free of charge. You will find a lot of good up to date information and you can join in virtual meetings with others who live with PBC.

[ninjagirlwebb]

The liver panel can fluctuate from time to time. Your doctor would be more concerned if there is an upward trends vs one offs. Yes, losing weight will help as you might also have fatty liver which can impact the bloodwork too.

Hopefully your consultant can see you soon and address the issue. And yes, having a chronic health issue wrecks havoc on us emotionally. My hepatologist told me once that stress makes any autoimmune issue worse and to leave the worrying to him instead.