New here and worried

Potted history. Regular wine drinker. Bottle a night, but recently cut down to 0 since 4 weeks. Have had history of RUQ pain, but it came and went.

Has been constant for a month now.

Also get lower pelvic pain. I had a hysterectomy with retained ovaries in 2014.

I also have lupus and a carrier of haemochromatosis.

Gall bladder taken out 15 years ago.

Routine rheumatology scans showed fatty liver in 2020. Have eaten healthier since then, but not lost much wright.

Recently feeling naseous, can't eat, feel full after a few bites,

Crashed about 2 weeks ago. Have lost almost 1½ stone in 3 weeks.

Was already booked in for US on liver which I had last Friday

GP did a load of tests.

LFT was borderline for ALT (41) & alkaline phosphate 135.

Ferritin 938

CA125 376

CRP 126

Symptoms RUQ pain, pelvic pain, referred pain in right shoulder, dull headache, nausea, diarrhoea, can't eat.

Was booked into see gynaecology, but liver scan came back showing "signs of something worrying" so had a head and abdomen CT scan on Friday. They said gynaecology will use this scan too.

Never had a fibroscan, which seems the go to test after US.

Really scared that this is cancer as nothing I've read looks good.

Feel I've just been left in limbo with GP as I feel really unwell but no advice on how to feel better. Been taking either paracetomol or cocodamol for pain, which helps, buy worrying what effect this is having on my already compromised liver.

Sorry its so long.

And thanks in respinse

[Littlelizzy11]

I know how hard it is waiting for a diagnosis. My advice for what it's worth is stay away from doctor Google. This site and NHS site seem OK, but the others had me choosing my coffin. There is soooo much that can be done, treatment wise. This is only the start of your journey. I'm sending love and well wishes and I hope you get some answers soon. Xx

[Hidden in reply to Littlelizzy11]

Ha. Done that already! Wicker, with crocheted flowers, lol! Thanks x

[Doraflora]

hi Fleabea. Littlelizzy11 is right. Stay away from the negative stuff on Dr Google.

I, too, am a carrier for haemochromotosis. You’re the first person I’ve come across who is. My last serum ferritin test was the lowest it’s ever been, at 325.

I posted earlier about my husband’s blood tests results re his liver readings. His ELF ( liver function test) was borderline at 9.8 (7.7 - 9.8) & his GP has referred him for a fibroscan. I’m worrying!

His Gamma GT had come down from a massive 88 (10 - 71) to a good 34iuL.

We’re all in this together!

[Roy1955 in reply to Doraflora]

88 is VERY slightly raised, certainly not massive!

[Doraflora in reply to Roy1955]

And it’s now 34iuL Roy👍

[Doraflora in reply to Roy1955]

should I be worried about a fibroscan for an ELF reading of 9.8 (7.7 - 9.8 range)

[AyrshireK in reply to Doraflora]

Whilst the ELF is obviously at the top end of normal it's still within the range so may not be much to worry about and a fibroscan should prove reassuring.

I see that on other threads on other forums you mention he'd been to hospital recently and had loads of tests which I imagine would have ruled out anything more sinister.

Sounds like he's been on some medications for prostate and other such things so these can all affect liver bloods.

As a young man of 78 they wouldn't really do a great deal medically even if his liver was really poorly, it would be a case of managing symptoms and doing all you can to keep it as healthy as possible.

Don't fret stuff just keep on keeping on and live your best lives.

Katie xx

[Doraflora in reply to AyrshireK]

Thanks, Katie.x

[Hidden in reply to Doraflora]

Hi Doraflora and thanks for your reply. There are more of us around than youd think! My last serum ferritin test, done when I had the genetic testing, 10 years ago was 76. This time 938. I read on the haemochromotosis charity website that carriers can still overload, which I honestly wasn't aware of. And wonder whether I should have been getting tested regularly? I'm worrying that has added to my self inflicted damage.I need to talk to my sister, as she has it and gets regular blood letting (can't remember the technical term).

[Doraflora in reply to Hidden]

The haematologist I saw said I should be tested at least once a year. The highest mine has ever been is 500-something, but now it’s the lowest ever at 325.

He also said if ever it got to anything between 600-800 then my GP should re-refer me. Thankfully it’s never got that high.

It’s surprising that your GP hasn’t acted on the higher reading. I should flag it up.x

[Buddythezhu]

can’t answer your test results I’m not a Dr but I have a liver disease and had bowel cancer surgery last year. In my experience if cancer is suspected/found you don’t wait long. I was diagnosed in July, surgery September.

[Hidden in reply to Buddythezhu]

Thanks Buddy. Yes, the speed at which this has moved has been quite terrifying. From blood test results liver US to CT scan was 10 days.

God bless the NHS, eh? I know we grumble about waiting times and lists, but they pull out all the stops when it matters

[Buddythezhu in reply to Hidden]

I’ve had a chronic autoimmune liver diagnosis, then bowel cancer diagnosis both have been dealt with fast in the NHS system. I am impressed.

[Rshc]

there probably isn’t anything anyone can say here that will reduce the worrying for you. I do know that paracetamol is considered safer for the liver for pain than ibuprofen so you are doing the right thing by sticking with that. I expect you will have some answers one way or another soon and once you know what you are dealing with you can make a plan. Google is most definitely not your friend right now, and always always shows you the bleakest outcome.

[Hidden in reply to Rshc]

Thanks Rhsc. That's reasuring. I'm limiting it to when I absolutely have to. I can't take ibuprofen as my stomach is rushed from years of NSAIDs for lupus.

[mp0130 in reply to Hidden]

i am sorry, paracetamol is the worst option for the liver. Ibuprofen is not good either, it increases the risk of bleeding from the stomach. You should get prescribed some painkillers from you dr.

[AyrshireK in reply to mp0130]

Views differ on this but paracetemol (in normal or even a slightly reduced daily dose) is considered the safest of all the pain killers it really is only in case of over dose or potentially long term continuous use where problems arise.

My hubby has cirrhosis but due to weighing over 60 kg his liver specialist has said he can take the normal daily dose (if under 60 kg then a reduced limit is advised). He has been prescribed these during hospital stays (at the liver unit) for headache, post operative pain, post endoscopy pain and been advised he can take them for pain following bike falls, toothache etc.

Absolutely correct that ibuprofen and other NSAID's are considered less safe due to bleeding risk, damage to stomach etc.

Katie

[Rshc in reply to mp0130]

My partner has constantly been told that paracetamol is the only thing he can take. He has pain from rheumatoid arthritis and has begged for stronger pain meds but multiple doctors have refused this request.

[AyrshireK in reply to Rshc]

Your correct Rshc, same as my hubby, transplant unit doctors have prescribed it for hubby during recent hospital stay and previously told him it's absolutely the safest provided it's not over recommended limits or a slightly reduced amount if under 60kg. Hubby takes it for headaches and has previously done so for post op pain, after bike falls etc. His doctor actually got annoyed that a nurse at Aviemore Hospital told hubby he had to take less after we went in there after a bike fall last year and she said she wished that medics wouldn't keep saying paracetemol was unsafe for liver patients.

[Rshc in reply to AyrshireK]

My understanding is that codeine is considered relatively safe too but not recommended particularly for those with decompensated LD as it can cause constipation. My partner has a codeine prescription and very occasionally takes it when the pain is too much to cope with but those days are few and far between.

[AyrshireK in reply to Rshc]

Hubby had oral and i/v morphine and was prescribed tramadol (though he never needed to take it after a couple of doses) after his spleen died and he was in excruciating agony and this was all at t/p hospital. Codeine obviously does cause constipation and can lead to an exacerbation of HE symptoms. My hubby rarely has pain - just niggles really and he takes a dose of paracetemol as advised by his liver team.

[AnxiousPete in reply to mp0130]

This is not cotrect - paracetomol is acceptable for people with cirrhosis. In some cases (not mine) hepatologists will recommend reduced dosage. NSAIDs like Ibuprofen Aspirin etc however are not safe.

[Rawai]

Hi,Im no expert but i would be carefull what un prescribed tablets you are taking.

In sure Kate our font of all knowledge will advice you.

Dave

[Hidden in reply to Rawai]

Hi RawaoThese are prescribed for me, so I assume they are OK. The GP did ask what pain meds I was taking and didn't tell me to stop, but I appreciate she isn't a specialist.

[Hidden]

To update

CT scan showing malignancy in my lung which he said was the root of my recent tummy issues.

GP couldn't/wouldn't give me any more information so don't know if it has started in lung and spread elsewhere or started elsewhere and spread to my lungs.

So waiting on biopsies/consultant appointments etc.

I'll bow out now for the time being, and will chase up the ferritin level. My sister (who has haemochromotosis) said they should take blood weekly until it comes down.

[Doraflora in reply to Hidden]

Thinking of you FleaBee and sending you the biggest virtual hug. x

[BritishLiverTrust8 Moderator British Liver Trust]

Dear FleaBee

Welcome to the Forum.

Any questions about medication and pain killers, your own health care professional is best placed to answer, as only they have access to your medical records.

We suggest talking this through with your own doctor or health care professional in the first

instance.

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust