Appointment with my hepatologist

[GrandmaDylan]

I saw my hepatologist today to discuss whether to start medication for autoimmune hepatitis. I had previously told him that I was reluctant to take steroids after the horrendous side effects I went through the last time I took them for polymyalgia. My daughter who is a scientist for big pharma came with me as she is far too well informed and worries about me. He started off saying that a diagnosis of cirrhosis is life changing. He said that if you were diagnosed with cancer you would automatically be seen by various consultants and started on treatment but a diagnosis of cirrhosis isn't really treatable and people have a negative attitude to cirrhosis and almost all think it's drink related. He said that it's a very lonely disease and people don't necessarily get the support they need.

He thinks that my autoimmune hepatitis may be burnt out now which is why my bloods are barely raised. We have now decided that he should refer me to Dr. P**** at Manchester royal as he is considered to be an expert in AIH and difficult to diagnose liver disease. I asked to be referred to Dr. P***!! almost a year ago! Stepping hill cancelled the referral and said I should be treated by them.

[Hidden]

GrandmaDylan,

Thank you for your contribution.

We hope that your referral will result in you getting the care and treatment that you need. This forum is here for advice and support and if there is ever there is need, there is our telephone helpline where you can speak to a registered nurse who is very experienced in caring for those with liver disease.

britishlivertrust.org.uk/fi...

In your post you named a consultant and occasionally we need to remind members of the guidelines for this forum.

"Users are asked NOT to post anything mentioning specific doctors or health care professionals by name as there could be legal implications for the author of the post and the forum should that post develop into something contentious or libellous. "

healthunlocked.com/britishl...

Yours,

Volunteer moderator

[GrandmaDylan in reply to Hidden]

apologies

[Radnor]

Yet another case of them eventually catching on, but hopefully now you will be better cared for. Fingers crossed too that you wont need steroid treatment. We endeavour to lose weight but steroids stop this. It is assumed that cirrhosis is always alcohol related, not just by the general public either. A lot of medics have no idea either. I'm sure it would help remove the stigma for everyone if it was given more publicity. It would let people know that anyone can be hit by it. Only 20% of alcohol dependants are victims, so many other causes people never hear of. Hazelx

[Hidden]

Hi Debs

Hope this time you get the referral with Mr P 👍.

Good luck as always and let the referral work quickly!

Miles

[Hidden]

Deb,

Good luck with the referral and I am pleased to hear that your daughter is fully supportive and knowledgeable.

Thank you also for sharing the remarks about the stigma around a cirrhosis diagnosis. They are poignant given the amount of alcohol related cancers and therefore highlights the prejudices around both treatments and societies attitudes.

I wish you every success with your referral and subsequent treatment.

Mark.

[Hidden]

Sending lots of good vibes to you. Good luck. Jaycee

[Jb1111]

Hi

What steroids were you taking before with all the side effects ? I’m due to be given some soon I know there are different kinds

X

[GrandmaDylan in reply to Jb1111]

I was given prednisolone for polymyalgia. They caused weight gain, made me feel incredibly hot all the time but the worst was their effect on my sugar levels. I was a perfectly well controlled diabetic on metformin and my blood sugars soared. I was referred to the specialist diabetes nurses and tried numerous medications which didn't work and ended up having to inject insulin twice a day. If you haven't got cirrhosis you can take budesonide which has fewer side effects.

[Jb1111 in reply to GrandmaDylan]

Thanks for replying to my question , much appreciated wishing you all the best x

[Hidden]

Debs,

Thanks for being so understanding.

Volunteer moderator

[Hidden]

Hi Debs,

Wishing you the best that your referral to a doctor more knowledgeable in your particular form of liver disease goes well.

How wonderful that your daughter was able to go with you for support and information.

Best wishes,

Mary

[Hidden]

Hi

I hope your referral doesn't take too long. It's great that you have your daughter there. Love and hugs Lynne xxxx

[Hidden]

Good Luck Debs

Hope your appointment with Dr P arrives speedily. Thinking of you !

Slaines

[Hidden]

Hi

How are you feeling? Has your appointment come through yet? Love and hugs Lynne cxxx

[GrandmaDylan]

My hepatologist only said he'd refer me on Monday so I don't expect to hear for a week or two. I won't be able to settle til I see dr. P xx

[GrandmaDylan]

I spoke to my hepatologists secretary today to ask about the referral to MRI she told me that my hepatologist has asked for an urgent appointment and it would be posted or faxed today. Hopefully it won't be too long a wait now...it's already been almost 12 months since all this started. Thankyou all for your support and encouragement. Debx