A lot of stuff going on. Qs.

[ARM8]

We found out partner had hemochromatosis and fibrosis from that. Fibroscan was 25 to 32 in some places. Bloods were Ferritin 2000plus 150, ALT 114 and others also out such as platelets low at 70ish. However after monthly Blood letting and not drinking and eating healthy eating for nearly a year his fibroscan is 13 and the doc days he doesn't have cirrhosis but S4 fibrosis and his bloods are either in range or nearly in range apart from platelets although they have increased to 100. I have some questions that the helpful people on this forum maybe to help with especially as no doc as interim between private to NHS.His ALP which has always been in range had gone up to 150...is this an issue. He does have a stiff/painful big toe. Could it be related to that rather then the liver? Liver MRI showed irregular parts from fibrosis but we were told it wasn't cancer (very thankful for that).

The doc says he has mild Portal Hypertension but this should go away if he continues to be healthy and have blood taken to reduce pressure on liver. Can he fly? MRI showed no varicies but doc mentioned an endoscopy (just in case but said unlikely) at a later date but now he's transferred to NHS there is no appointment until October. We want to go away next week abroad on a short flight so I presume this is okay but will need health insurance stating portal hypertension?

He also has only been transferred to Gasto but rejected from hematology twice. Should he not see hematology for hemochromatosis and Gastro for liver issues?

He has really bad health anxiety and has found the constant appointments alongside work really, really difficult. The doctor said he can take antidepressants; has anyone else taken them with liver fibrosis?

Lastly, to note the doctor has been lovely but first he said my partner had fatty liver and no fibrosis at all and then as things have gone on it's all progressed to fibrosis. He is a gastro doctor and I wonder if he should be under a hepatologist.

Any views welcome and sorry for the super long post! Some questions have been building up in my mind for a while now!

Also, appreciate all the knowledge and support that this forum brings and I hope everyone is doing okay and getting through on this bank holiday. Fingers crossed as least for some nice weather for all.

[Readlots]

Hi, lots of questions on here that really only a doctor can answer so I’m not going to be much help I’m afraid. My doctor is the liver specialist in the gastro team, so the referral you have might get you through to the right team. You can then ask them if he should also be under a haematologist.

I’d suggest calling the BLT nurses for advice after the bank holiday, they are fab and may be able to answer your questions.

[ARM8 in reply to Readlots]

Thanks for your help! It's getting him to the doctors that's an issue but there is a gastro appointment later this year but I'll also try and push for him to to see the local GP in person (just to check that they are sending him to the right Drs for both conditions).

[RugbyMama]

Hi,

My husband was diagnosed with haemochromotosis last year, we had no clue and he is the only one in the family with it. He had drunk heavily for many years, with a significant increase from July 2022 inwards following the death of his father which caused cirrhosis and late onset type 1 diabetes. He has been having regular venesection in a day unit since January and his ferritin has gone from 2000+ in Jan 2023 to 451 as of last week. We are starting to see some improvement in pancreatic symptoms which is positive.

Gastroenterologist and hepatologists are often used interchangeably for liver patients. Don't forget that some symptoms of poor liver function are gastro symptoms (varices, ascites etc). My husband sees a gastroenterologist who has a liver specialty. He doesn't see haematology because their biggest concern is that the iron overload has caused organ damage, and once diagnosed, haemochromotosis is generally fairly straightforward to manage.

Fibroscans are notorious for not being able to tell the difference between inflammation and fibrotic tissue, so should be taken with a pinch of salt if iron overload is suspected - husbands fibroscan was 64.4kpa, the highest it goes to is 75kpa and there was talk of transplant for a moment but his ERCP, endoscopy, CT and ultrasound suggested that actually this was iron deposits around his liver. Your liver is notoriously fickle so all that can be done is to continue doing exactly what you are doing - eat well, gentle exercise, no alcohol.

With regard to antidepressants, as with all medications, tell your GP that there are liver issues. There might be a different drug metabolised less by your liver they can prescribe.

The BLT helpline is incredible and the haemochromotosis charity is also excellent if you need further support.

[ARM8 in reply to RugbyMama]

Thank you for your reply and it's reassuring to know that your husband sees a gastro only. My partner's parents also passed which didn't help things either (obviously).

Yes, I'm going to push him to see a GP in person if I can. On the hemochromatosis, he is actually currently anemic after taking 20 venesection as private doc knew it may be a wait on the NHS. Just something for your hubby to watch out for later on!

I've not rang BLT but may now for advice.

[isi123]

It is the doctor who should give you instructions for traveling. It is quite normal that you are not referred to a hematologist; once the disease is diagnosed, it is a matter of monitoring ferritin and saturation levels and planning a number of phlebotomies to keep levels in a safe range. Right now the most important doctor is the hepatologist and another doctor who monitors other diseases such as diabetes, arthritis, etc. The greatest danger that we hemochromats have, in addition to cirrhosis, is hepatocellular carcinoma, which has a high rate in our disease and we should be monitored periodically..

[ARM8 in reply to isi123]

Thank you for your reply!

[BigJimmy45]

mate I am fucked, got liver cirrhosis, HE is up and down. Had a TIPPS in 2015 and living on. Borrowed time here. Hope all works out for you bro, I have only myself to blame, Drs have been amazing as always they all deserve knighthoods! And that goes for ALL NHS staff too

[BigJimmy45]

yeah had loads of burst ones, it’s a proper bugger. Doc says I have 2 massive varacies but they are well covered with skin at the moment

[BritishLiverTrust11 Moderator]

Hello

These are questions that your own health care professional is best placed to answer, as only they have access to your medical records.

We suggest talking this through with your own doctor or health care professional in the first instance.

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust