Quite confused!

[Met6]

Hi all, ive just found this site.

My blood test results for liver are quite high. I have nausia, vomiting, liver pushing out every time I eat. Feel full with little food. Swollen ankles stiffening fingers. Very fatigued, tired, headaches.

The results stated levels of some one that drinks excessive alcohol, im tea total? My blood tests have increased never gone down. My GP refuses to send me to a specialist even with all these symptoms.

I cant understand why?

I had a brain MRI and it showed changes, hes more concerned to send me to see a neurologist about getting physio as its the part of the brain which affects co-ordination, ive only noticed every so often I walk to the left side, nothing major, no signs of stroke or tumour.

I thought all my symptoms were due to the liver, being as GP has told me there is no concern for about MRI results, I dont understand why he wont refer me or give me medication for my liver. Do I have to be crawling before some a consultant to help?

Thanks i advance for your replies

[freddie76]

Sorry o hear all this but it is like DeJe Vue to me.

You have all the symptoms of a non alcoholic liver problem,

just as my husband did in 2006. He had high GGT levels which is an indication of alcohol but never drank he was an HGV Driver and he wasn't really interested in drinking anyway..

We convinced the GP of this and were referred to an Endocrinologist for tests. They check all the levels of the Hormones your body produces. They were all way out of line, but normal liver function. After 6 months she decided to book a scan of his abdomen. She was utterly shocked at the results he had liver cirrhosis even though liver was still showing as functioning ok.

She then referred him to Gastro but booked one more blood test. This came back positive for "Alpha 1 Antitrypsin Deficiency" This is a rare disease and not very often looked for. It is inherited from your parents. Mike was found to have the worst level which is classed as "ZZ".

It causes liver, lung and skin issues. Have many people in your family suffered with Asthma, or any form of COPD (Lung Disease)?

We had four years with a "C---" Gastro and in the end demanded to go to Kings College Hospital where there is a transplant unit and they understand all aspects of liver problems.

He deteriorated over the next year and developed brain issues just like yourself. He has all the symptoms you describe which are being treated as mild Parkinsons. He had a brain scan which showed that due to his liver never have been working correctly from birth it had built up metal deposits in the basal ganglia which cause these symptoms.

He went on to have a transplant ,at which time although blood markers for cancer were clear,he was found to have over ten Hepatocellular Carcinomas, this was well outside the limits for transplant but as they already had opened him and had the liver to hand they went ahead.

He is now 5 plus years post transplant. Metal in brain seems to be clearing as symptoms are getting better. Liver works OK. Had few hick ups in first couple of years, developed incisional hernias, had them repaired but ended up with several bouts of sepsis and bile duct got blocked and had several stents to correct this but after all this he is virtually living a normal life.

So if you are experiencing the issues that you describe please demand a second opinion . It is your right.

Where in the country are you.

If you would prefer to speak privately let me know

Good Luck

[Met6 in reply to freddie76]

Hi thank you for your reply,

no family history as such, cancer of the lung, stomach, pancreas, bowel with grandparents, aunts uncles, my dad bowel cancer.

My grandson suffers lung disease often has pneumonia. He has had a total collapsed lung at 11 months old. Consultant has no idea why.

Im glad your husband has got through it all. Very interesting as its some thing to keep in mind for my self and my grandson.

My dad was a heavy drinker when he wasnt at work.

Kind regards

[Met6 in reply to Met6]

Well, I found a lump in my breast. Last Thursday it was confirmed I had breast cancer.

Today I found a lump in the top of my arm. Urgent ultrasound needed.

So I guess I will finally have answers

[freddie76 in reply to Met6]

Hi

Just seen your last message. So sorry to hear this . How is it all going?

[Met6]

Hi,

I can't have treatment for my breast cancer until all neurology and endocrinology results are in.

I'm having a CAT scan on Sunday.

I have damage to the Cerebral part of my brain, causing, vision loss hearing loss, voice loss intermittent, slurred speach, memory loss and certain hormones not working right.

My petuity gland fluid has shrunk exccessively, the pituity isn't working so cortisone low. So they are looking at Addison's disease and Cushing disease, both doing opposite to each other.

I need a good shake up haha. No point being upset as I've got to deal with it. So another 3 weeks I should have answers.

Hope you and your husband are doing well xx