Still ongoing

[Liberty82]

Hi, I haven't posted on here in some time just because I was hoping that it would all just go away. But here I am 4 years on. Ill try and be as short as I can but previous heavy drinker, not an alcoholic but certainly huge amount of binge drinking and very heavy in my 20s. Im now 38 and haven't had alcohol for 18 months but very little in the 2 years prior to this. In 2017 I took an accidental paracetamol overdose and that's when my symptoms started abnormal sweating, ruq pain and in my back, cramping limbs, oily stools, nails with a brown band at the top, issues with gums bleeding and receeding, dead limbs (I call them cement legs because that what it feels like, encased in cement) especially at night or after taking any medication. A taste from gums after taking medication (any) like almost its backing up again. Breathless, like there's something pushing on the centre of my chest so I can't get a full breath. Night sweats, hard nodules under skin that started in the liver area but have spread down abdomen and pelvic area.

Ive had 2 fibroscans (5.4 & 3.3), 2 ultrasounds, many sets of LFTS, a CT scan all normal. ELF test was 7.9 so just slightly over into the moderate fibrosis stage. I had a telephone (because of covid) consultation with hepatologist in the summer and he sent me for the CT scan as my GP didn't know what the nodules were. Scan was clear. I've really tried to forget about things and get on with my life but the symptoms have continued and 3 weeks ago my gums massively swelled up and my eye lids looked wrinkled and saggy. My sis who's a nurse said it looked like fluid, GP confirmed its edema of the eyelids gave a number of causes but one being severe liver disease and with my past sent me back to the consultant. In these last 3 weeks I've started losing my hair in massive amounts. I had thick hair but I can see my scalp in lots of places. Anyone who has lost their hair due to liver disease does it grow back? Im not a hugely vain person but I feel like hiding away. I know its the least of my worries, and I'm worried sick about everything but I know none of you have medical answers for me but might advise on the hair loss. Im waiting on latest LFTs coming back as I've not had any since summer and I feel a little breathless today. Like there's something that's not letting me get a full breath. If I have edema of the eyelids could this be ascites do you think? Thanks for any advice x

[Fandabby]

Hi Liberty82, since being diagnosed with liver Cirrhosis in 2017, one of the best bits of advice I have been given is "It may not always be Liver related". I began to suffer with hair loss and it turned out I had Hypothyroidism. Since starting medication this has now stopped. However I also get a lot of breathless episodes with chest pressure and I feel like I'm wearing a suit of Amour at times, with heavy limbs and restricted walking. I haven't been able to give a reason for that yet, it could be liver related, although I do have ongoing Gynae problems so it could be that too. Just keep asking your GP for tests, hopefully you'll be able to get some relief from your on going worries. Good Luck. x

[Polaris_Ab]

Hi Liberty82, I just sent you a Chat message.

[Alibaba80]

Are you still on here hun? I have all symptoms similar to you the bleeding gums, hair loss I feel so do ill everyday

[Liberty82 in reply to Alibaba80]

Yes I'm still on here. I still have symptoms and no answers but not long after this post I fell pregnant so I've just had a baby 5 days ago and my pregnancy and baby were healthy. My assumption is that there is some irreversible damage but its not cirrhosis so its just a matter of looking after my liver for life. So for instance they sent me home from hospital with diclofenac after my c section but I noticed it was causing the liver sweats so I stopped taking it. I also had the anti biotic metronidazole during pregnancy which caused symptoms to worsen. I didn't take any other medication during pregnancy so my liver has 9 months of healing (besides the metronidazole) so symptoms have improved but they haven't gone away as was proved by taking the diclofenac. Have you seen a liver specialist or had any tests?

[Alibaba80 in reply to Liberty82]

Hi. Yes I have been seen by a liver specialist and had a biopsy. I feel so so unwell every single day. They are struggling to find a diagnosis but its definitely liver. Some days I can barely eat or walk as I feel so sick. My gums bleed terrible and like you, I had lovely thick hair and it is constantly falling out. I hardly have any hair left. I look in the mirror and cry and cry I feel I have no quality of life at all I'm so frightened for my children. Did your hair stop falling out?Thank you for replying and congratulations on your new baby x

[Liberty82 in reply to Alibaba80]

Yes, it stopped falling out. I'm not sure whether this was because of the pregnancy but I think it kind of fell out rapidly over a couple of weeks where I lost around 30% of my hair and then just stopped but it did coincide with the pregnancy so I'm not sure if that was the reason it stopped. Was your biopsy normal? The only thing I can suggest is removing anything that might be harmful to your liver so alcohol, medication, junk food etc and try and take excersise (I hate the gym etc but I started walking for miles a day) I know if you feel ill excersise is the last thing on your mind but even just something minimal.

I know what you mean about your gums, mine started receeding at one stage and I had really beautiful teeth and I thought at one stage they would start to fall out! It's awful knowing something is wrong but not having answers x

[Alibaba80 in reply to Liberty82]

That's exactly how I feel hun. I'm so upset and cry all the time because I just cant get any answers and yet I feel so so unwell

[Alibaba80 in reply to Liberty82]

The biopsy showed Nodular Regenerative Hyperplasia. What were your symptoms hun

[Alibaba80]

Are you still on here hun?