Borderline Cirrhosis ? Swollen Ankles

[jamie18]

Just an update on my visit to see a consultant privately.

He explained my fibro scan has me sitting on the fence for cirrhosis .

The doctor who phoned me from the hospital explained I would need a CT scan to look at the bigger picture ,I was told I would need more detailed bloods ,a CT scan ,a dietician appointment and that I would be seen in 6 to 8 weeks .

Having rang the hospital appointment line to check I was told the CT scan referral was routine and would be about 15 months .So I'm not holding out much hope of being seen anytime soon.

I will have to pay for a scan or face a very long wait .

My liver bloods have been raised for a long time but recently shot up further ,they are now coming down but very slowly and no where near normal.

Over the last year I have had swollen ankles for a day or two ,my GP tested for heart failure but never mentioned my liver or the connection which shocks me given they knew my numbers were high.

My D dimer blood tests have been raised on and off but no blood clots .The GP said he thinks the raised level is just my normal ,it never was before .

Yesterday evening my ankles and feet were very swollen and sore but today they are ok .

I am worried that I already have cirrhosis and the CT scan will show more problems.

I am feeling scared, alone and very overwhelmed .

Does the swelling mean things are further advanced.

Thank you for any advice

[Realy]

did they give you a cap score or KPA score?

[jamie18 in reply to Realy]

Hi Realy

No they didn't give me either of those just said advanced fibrosis and that was it .

[jamie18]

Hi Bluebeyound

The consultant sent the referral to a private hospital and they are ringing me on Monday to make the appointment .As I couldn't wait 15 months ,I'm already so stressed out .

[jamie18]

Wish the NHS would pay for mine ,glad your being seen .

[jamie18]

Mine started as fatty liver .I never realized how serious it could become ,I feel your pain ,I seem to have a new health condition every other day .

I'm sure your local hospital would have a fibro scan and there's no reason why your GP shouldn't refer you ,I wouldn't want anyone else to have to deal with this .

I know it's hard but I think we all need to speak up for ourselves .I hope you get answers and feel better soon.

Take care.

[AnxiousPete]

If a consultant has diagnosed borderline cirrhosis then your GP must refer you to an NHS consultant. I'm pretty sure CT scan is not a routine diagnostic for cirrhosis but you should now be under the care of a hepatology team in your nearest hospital that has a gastroenterology department. You should be advised on any diet / lifestyle changes needed. You haven't mentioned underlying causes of fibrosis such as high BMI, alcohol consumption etc. but you probably need further blood tests for an autoimmune or hepatitis condition. If you have paid for a fibroscan and consultation you must request your kpa and CAP scores with an explanation. Good luck and try not to worry too much.

[jamie18 in reply to AnxiousPete]

Hi Pete

Not sure why I need a CT ,perhaps to check other organs ,I chased things up with the hospital and I am getting bloods on Monday which is a start and they want to do a second fibro scan in a few weeks as they seem to think the first wasn't clear enough ,being over weight and not moving enough has been my problem along with underactive thyroid .

I started to diet and walk each day about three months ago and so far so good .

Trying not to worry

Take care

[Tonbolt275]

Welcome to the club .I too feel totally abandoned by the NHS it has took 3 years to get a diagnosis.

[jamie18 in reply to Tonbolt275]

Hi

I hope you are keeping well .

I would like to cancel my membership to this particular club, I just feel we are left in the dark about how bad this can get ,three years is a long time to be looking for answers but sadly I'm not surprised ,

I hope you are now getting the care and attention you deserve.

Take care

[PutneyGirl]

May I ask those who don't know their exact results why they don't request them from the hospital or the GP? They are obliged to give them to you.

I feel for you and hope all will be well. I have been diagnosed with a moderately diffuse fatty infiltration of the liver. I am having a fibroscan tomorrow (privately).

I was drinking about 4.6 units a day, occasionally adding a third glass. Also I'm just into the obese category or was until I gave up alcohol on 11th July. This arose because rheumatology ran my ALP which was 198 and added on my ALT and GGT which were 45 and 54 respectively. They have also established my cholesterol us sky high. Blood this week showed the GGT at 18, ALT at 35 and ALP at 169.

In fairness rheumatology have been awesome at whacking in an ultrasound and then a fibroscan (I'm insured so going that route but they were available on the NHS - my view is to leave the NHS available for those who aren't insured as this is all likely my fault).

What I think is going on is that the drinking and covid stone or two has caught up with me but that the ALP, now the other bloods are down, and also the cholesterol are attributable to the Teriparatide as they are known side effects.

I had taken myself in hand two weeks before the bloods were taken so have been abstinent for two months. Gently dieting in the first month and now on a cholesterol reducing diet. I have lost 12lb so far and have just sneaked into the overweight, rather than obese zone. Our diet had become too reliant on Tesco's finest and cheese, cream and anything rich.

Hopefully tomorrow's fibroscan will identify reversible damage.

The last six weeks or so have been fraught with stress and I have been down so many rabbit holes in relation to liver disease.

I am the typical, well educated, professionally qualified, successful, middle aged woman who enjoyed a couple of glasses of wine after long stressful days. It's a salutary lesson and I never realised that a couple of glasses extrapolated to units, grams of alcohol, etc, could stack up and be so potentially harmful.

With love and prayers for all.

[jamie18 in reply to PutneyGirl]

Hi

Thank you for taking the time to reply.

I hope your fibro scan went well .

I am trying to be positive ,I wasn't given any other information apart from boarder line cirrhosis .I am now being sent for a further fibro scan in a few weeks as the consultant isn't happy with the first .

Hoping it's not actually full blown cirrhosis ,I am so stressed and upset with myself

Diet changed and started to walk ,hoping I can make a change .

Take care

[PutneyGirl in reply to PutneyGirl]

Thank you, I am fine. A mildly fatty liver, a talking to about 14 units and about losing weight. The consultant gave me the cap and kpa scores there and then and I had a copy of his letter to the GP within 24 hours. The NHS rheumatology consultant had requested an urgent fibroscan after an urgent ultrasound but I have insurance so did both privately. To be fair they were each only about 2 weeks faster than the NHS. I am fine but I thought one had to be hearing the pips squeak to get anything done by the NHS nowadays so I was very very fraught due to the urgency with which they were moving things. Cap/kpa 4.6/238.

[jamie18 in reply to PutneyGirl]

I'm so glad you got good news.

Take care

[juneblue]

Hey there. The main thing you can do is concentrate on the symptoms. If something in your blood work is out of the parameters. See what you can do to get it back on track. I sleep with my feet slightly elevated and it helps with the edema. An exercise routine has helped dramatically. ( even if I don’t feel like doing it sometimes). Let Action Take The Place of Worry.

I was diagnosed with decompensated cirrhosis 7 months ago. Abusive alcohol and my own selective ignorance were the culprit. Ascites was and is the worst symptom for me. Alcohol free for 7 months now. Wasn’t hard for me, I was self medicating. I didn’t even like drinking. It took the Dr. saying” Your Going To Die Man”. I did keep bugging him about my prognosis. Needed to here the D word.

Now I am compensated. Walking about 10 miles a week. Heavy, not as heavy as before weight lifting. Still struggle with ascites but maybe just needs more time. Blood work looks good. YOUR the only one that can do most of that. Educate yourself! My liver has done most of the heavy lifting- time for me to give him a helping hand. Try to keep your sense of humor. Endorphins help!

I’ll say a prayer for you. Hang in there it will get better.

Juneblue

[jamie18 in reply to juneblue]

Thank you ,sorry I haven't replied sooner I have had a lot going on .

Well done on not drinking any longer ,I'm trying to keep positive ,biopsy for skin cancer this week on top of everything else ,really struggling ,comfort eating and no exercise on top of an underactive thyroid have caused my problems .

Praying for the strength to change things .

Take care

[Danz1]

Hi, I have confirmed cirrhosis but have never needed a CT scan. Ultra sound and fibro scan confirmed mine apparently? I’ve never had swellings or pains but have had a little bleeding in my throat due to varices. Alcoholism for 15 years lead to this for me.

[Slsslw in reply to Danz1]

When you had bleeding in your throat how did you know? Were yo spitting up blood?was it red?

[jamie18 in reply to Danz1]

Hi sorry only replying now ,just coping with a lot .

Hope you are keeping well ,the consultant at the hospital now wants to do another fibro scan because they weren't happy with the first ,not sure why but my mind is in over drive ,should get an appointment in a few weeks .

Life can be very hard and we're all just trying to do our best ,take care.

[Taffydad]

I had my liver ct scan in a matter of days. It's patient choice so can't you go somewhere where there's no waiting list.

[jamie18 in reply to Taffydad]

Hi

Sorry to reply so late .

I live in N.Ireland and our waiting times are terrible ,even paying to go private takes weeks as everyone is trying to go down that route ,I thought you had no choice as to where you went on the NHS.

Take care

[jamie18]

Hi yes sometimes but have been putting it down to the dreaded menopause .