Anaemia

[GrandmaDylan]

I was diagnosed with anaemia in February this year which kick started all the tests which ultimately came back as cirrhosis.

I am waiting to see a hepatologist but an urgent appointment is up to 4 weeks wait and non urgent up to 14. Hopefully i will find out which list I'm on tomorrow. Since the anaemia diagnoses I have been taking iron tablets 3 times a day but I've read that a cirrhotic liver can't process iron so I stopped taking it a week ago. When I spoke to my gp I asked if the cirrhosis has caused the anaemia he said it wouldn't have. I've read since that it does cause anaemia. It doesn't fill you with great confidence in your gp when they obviously don't even know the basics.

[Barnetaccounts]

Hi, hereby hangs the problem. When we consult Dr Google we can get every prognosis possible. A simple headache can be caused by a Tumour on the Brain if you get my drift. You like most people here including me get a diagnosis and obviously we want to know what is going on immediately, so off we go trawling the inter web getting more and more confused. At this point I would recommend taking a deep breath, waiting until you see the hepatologist and then bombard them with whatever it is you want to know. Cirrhosis needs managing and eating healthily and cutting out alcohol are basic essentials. Write down all your questions so you are not relying on memory when you go there. This forum is a great place to ask for advice but please remember nobody here is qualified to give medical advice, all we can do is share our experiences with each other and provide support as needed. GP’s sometimes lack the specialist knowledge required and although they go through rigorous training it can leave them lacking in knowledge in areas that should be relatively straightforward. Take “Alcohol Abuse”as an example, I have heard horrendous stories from people who are trying to kick a killer habit, and it is all down to pure ignorance of the illness. Because there isn’t a simple prescription that will solve the problem they are left clueless. Yet anyone who has gone through any type of recovery program or their family are far more knowledgeable than the person you would think should know. I say that as someone who has Cirrhosis, Liver Cancer or HCC as it is otherwise known, and I haven’t had a drink for nearly 16 years. Was my GP able to advise me on any of the above, no is the simple answer I needed specialist help and thankfully I got it.

Please come back with anything else you want to know about and take care.

Ray

[GrandmaDylan in reply to Barnetaccounts]

Thanks Ray. You're right, I was told out of the blue last Wednesday that i have cirrhosis, an enlarged liver and spleen and varices. I have since been to that is no sign of varices. I just went into a tailspin and am obsessively reading everything I can. I'm sure that when I see the heptologist and get proper advice and find out exactly what type of cirrhosis I have ( I've never really been a drinker, even when I was younger) Deb

[jojokarak]

Hi sorry to hear about your diagnosis, but you would need to be taking huge amounts of iron for it cause any more damage.

You should really continue with any medication until told by someone more qualified.

Don't be too upset with your GP, they are not specialised in the liver it's just general knowledge, that's why we are referred on to specialists

I hope your appointment comes quickly

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Have they by chance looked into any metabolic disorders like Gauchers Disease.?

[AyrshireK]

Reading your bio bridesmum you have numerous factors from your pre-existing health which can be contributory factors to developing liver issues - thinking particularly of your earlier underactive thyroid and your diabetes type 2 both are up there as causes of non-alcohol related fatty liver disease - a fatty liver can go on to become cirrhotic.

You also have the double whammy of also having two known auto-immune conditions in your ME and fibromyalgia and as you may already know when you have an over active immune system you often don't just have the one auto-immune condition. In a non-drinker with 2 known pre-existing auto-immune conditions i'd hope they would investigate the possibility of auto-immune hepatitis or one of the other auto-immune liver diseases.

My t-total hubby has cirrhosis due to AIH and we never knew he was poorly at all until he presented with end stage symptoms (massive bleed from burst varices) and was subsequently diagnosed with auto-immune related cirrhosis.

AIH normally requires a liver biopsy and a marked positive response to steroids in reducing liver inflammation markers together with checks on your antibodies etc. Diagnosis is a jigsaw puzzle of lots of different tests.

I hope you get an appointment soon and they can get to the bottom of the cause of your cirrhosis.

All the best, Katie

[GrandmaDylan]

Hi Katie, I have been to see my gp this morning. He felt my liver and spleen and said that they didn't feel excessively large. I do have lots of spider naevie (started around 18 month's ago but have increased massively in the last 6 months) and red palms. I had a gastroscopy about 4 weeks ago and the report doesn't mention varices, just hiatus hernia and some gastritis.

There hasn't been a report from my liver scan but the haematologist who referred me says the ultrasound confirms hepatomegaly with cirrhotic changes as well as splenomegaly and varices.

Surely if I had varices they would have been seen on the gastroscopy? Would they show up on a liver ultrasound?

Advice please. Deb