Advice please

[ktan49]

Hello all .. slowly losing the plot. I feel like im in someone elses body.. feel numb to everything. Anyway ive noticed blue veins on palm of hand.. is this normal in liver disease? Mowed the lawn today.. big mistake as ive spent all evrning feeling like death. Really feel unwell but waiting for QE to get results from bloods. Then they will arrange liver biopsy at my local hospital. God knows how long that will take. Im trying so hard to carry on... to someone who doesnt know me if they spoke to me they probably wouldnt know anything is wrong. But i feel rotten on inside. My wrists and fingers also hurt. All my joints. Random itching and this body tremor is getting worse.. no chance of balancing an egg and spoon ! Dizzyness is also annoying its constant. Liver specialist also tested my ferritin saturation etc so not sure why he doing that . Sorry for long post. Im scared but i feel like i have no emotions anymore .. weird

[Smyally]

Hi ktan49. Sorry to hear that you’re feeling like poo at the moment. The tiredness is a normal part of liver disease. It’s quite frustrating because just doing normal things like mowing the lawn, or in my case taking my mum for a coffee in the nearest place can knock you out and make you feel ill. The reason your doctor would be testing your ferritin levels is because whether you have too much in your body or not enough exhaustion is the biggest side effect. Also if you have too much ferritin the excess can collect in your joint areas and that could explain your joint pain. My levels came back high on my last blood test and I was told to cut out my iron tablets. Going to be retested again in two weeks. I had very bad pains in my knees and ankles. I’m hoping they will go soon. Rest when you can and take care x

[Hidden]

Hi ktan

Ohhh ktan poor poor you. I sympathise having been there as well. Horrid time.

I never had blue veins but had lots of very small red blood “blisters” all over the palms of my hands. Apparently this is a sign of liver problems.

Felt like you say you feel, and just the same those that didn’t know me wouldn’t think there was anything wrong. When I was on the second Assessment session at QEHB we went into the anaesthetist’s room and he said “good morning mr harrison, you’re looking well”. To say I was not impressed is an understatement as I was feeling like sh.. not very well!

Anyway at the end, the end being before I was saved by my incredibly lucky transplant, I was basically confined to my chair. About able to walk 20 yards if I took it really slowly. (One thing I’ve noticed that, unlike Derby, there are no wheelchairs available at QEHB. You have to ask reception for one and then wait endlessly for a porter. The one poor aspect about QEHB in my experience).

Anyway I’m not sure I can say anything th improve your lot except to say I really hope things inprove for you in the short and long term.

Good luck ktan and please keep telling us how things go!

Miles

[Grank]

Ferritin saturation is a standard test for haemachromatosis. I only know this because I’ve had mine tested every few months for 30 years or so. I can always tell when my ferritin is up though (3,000 at one point) because of the flu like aches and pains, blurry headedness, Lethargy. I don’t know if those symptoms are for everyone with raised ferritin, or just haemachromatosis sufferers. I feel very well when my ferritin is maintained at 50.

[Hidden]

Hello,

This is such a difficult situation for you, it must feel like there is no light at the end of the tunnel. I hope you have an appointment coming up very soon to see your doctor and tell him/her how you are feeling, they may be able to speed up the appointment for your biopsy if they realise you are feeling so unwell. If you do not have an appointment it might be worth making one, even if it is just with your GP.

regards

[vulnerable]

I commiserate with you totally. Thankfully I’ve had a liver transplant 9 months now and I’ve got a new lease on life.

I don’t know what stage your at or if you are for transplant but I shall think of you in my prayers and hopefully you will get some resolution to your health issues

Vulnerable (Maggie)

[rosemadder4]

Hi ktan49 I'm sorry to hear you are feeling scared, sometimes the uncertainty of waiting for results is hard to deals with. Eventually you just grow to accept what you can and cannot do... I get blue veins in palms of my hands, tho it only happens occasionally. My oxygen levels fluctuate a lot and are generally on the low side! Initially it was thought I had a problem with my lungs so I see a pulmonary consultant. He decided I may have a problem with my liver and was investigating for a condition called hepatopulmonary syndrome (HPS), where the damaged liver affects the blood flow to the lungs. After receiving results of ultrasound scan in January, I was informed that I do not have cirrhosis and after having an endoscopy I know I do not have portal hypertension, therefore it's unlikely that I have HPS. My ferritin/iron levels were low and have only reached normal levels after being on iron supplements for a year. The low levels possibly contributed to low oxygen levels! I have a right left shunt which causes some blood to bypass my lungs, this also contributes to my low/fluctuating oxygen levels! During the course of investigations I was diagnosed with a hole in my heart (PFO) which I've been told is fairly common and something I would have had from birth. My GP reckons it could be the reason I feel unwell as it causes the direction of blood flow to change. Fatigue and nausea are my main symptoms. Feeling dizzy mowing the lawn is certainly something I can relate to! I eventually bought a very light electric mower, (it doesn't make a neat job) but I struggled with our petrol one. Try not to worry too much and do what you can, also rest when you need to! Take care!!

Christine