Has anyone heard of a fibroscan being wrong?

[Liberty82]

OK, I'll try and make this as short as possible. I was a heavy drinker in my 20s and early 30s but in more recent years I've basically stopped drinking. I've had a few paracetamol overdoses too, the last being 30 months ago when my symptoms started. That one was accidental, really stupid since I'm aware of the dangers of paracetamol. It started off as sweating and hot flushes after taking alcohol and would last for days, even if it was just one beer. Then upper right quadrant pain which was felt in my back and right shoulder. A bile taste that I have any time I eat anything fatty, pale oily stools with every bowel movement and cramping limbs, fingers, toes, thighs, shins, everywhere. Night sweats after taking most medications, even otc sominex for sleep. Over the past 30 months I've had 4 sets of LFTs, 2 ultrasounds and 2 fibroscans. All normal. My latest fibroscan was 3 and cap score 230. Docs don't know why my stools are clay coloured and oily. And have no answers for the symptoms. Trust me, I don't want to have any liver issues, I'm not seeking that but I honestly don't know what else it could be. It's gradually got worse with more symptoms appearing and I'm wondering if my liver could have gone soft again and that's why I'm having those results. I know the ultrasound and blood tests commonly miss cirrhosis but I thought fibroscans were pretty full proof and mine has come down from 5.4 last May to 3 this week as I've been living healthily. I'm having an ELF test next month and if that's normal I'll just have to forget about this and just keep living healthily. The reason why I ask is I'm supposed to being ivf soon and I'm worried the drugs could affect my liver as the flu jab really made my symptoms 100 times worse. I was terrible for a week afterwards with the pain, cramping, sweats and stools were even more oily I'm still not back to normal from it. I don't want to take anything that could cause further damage. Thanks for reading x

[Hidden]

Hi Liberty, thank you for your detailed post. It is helpful that you included so much information. It tells me as a non-medic that a review of your situation with specialists of one or more disciplines is what may help you understand your position. I'd have thought that an IVF programme wouldn't begin without a full medical assessment but I have no factual basis for even that thought. But I'm not clear from what you say that this is a definite plan for you.

Why not start with speaking to one of the specialist nurses on this site. They are very understanding in complex situations and can point you to the first step you may choose to take to make your position clearer to you.

Best wishes

[Liberty82 in reply to Hidden]

Thanks for your reply, for ivf they have a full assessment of your fertility but not much else, considering I haven't been diagnosed with anything and my docs are pretty uninterested in my symptoms then I've only to say the word to go ahead with it. I've stalled for years over this and I'm 37 so time is running out if I want to go ahead with it.

The BLT have been very helpful and they suggested I go back to my GP but my GP has done all the basic tests and won't take it any further. I had a fibroscan done last year at the roadshow and then I went private to have another one this week. I'm also having an ELF test done next month through bluecrest screening. I was just seeing if anyone has heard of fibroscans being wrong. I don't know where else to go with this. Its ruled my like for years and it's not health anxiety as even if all the symptoms were on my head it's clear from my stools that something is going on. Thank you very much for your reply I appreciate it x

[Hidden in reply to Liberty82]

You've has fibro scan on different machines. That can account for a small change. What you have or have not eaten in the few hours prior to scan can make a difference. All I can be sure of is that yes, a machine can be "wrong" but it sounds a very unlikely circumstance here. Perhaps you could take a stool sample to your gp and ask her to investigate because of your concerns? There's likely to be other reasons for dodgy stools but I'm not an expert in anything. Certainly no-one can say what's going on with your stools except a doctor/lab to examine them along with a full history. Perhaps you need a diferent GP? Don't let it rest if you are not satisfied.

[AyrshireK]

When fibroscan is wrong is tends to be read too high rather than too low. It can confuse ongoing inflammation with fibrosis so can give an inflated high figure if yours is low then good news.

[Hidden]

Hi Liberty82

We are sorry to read you are still feeling unwell and worried about your liver. Could you maybe ask your GP to refer you to a hepatologist so they could review your test results, and ongoing symptoms?

They may also be good to talk to regarding your concerns about IVF treatment and if it affects the liver function at all.

Very best wishes

Trust1

[Liberty82]

Thanks Rebecca, as you know this has been ongoing for some time. I did ask to be referred to a hepatoligist bit my GP said let's do an ultrasound first. Then she rang me and said the radiographer rejected in because of my normal LFTs however I still got a letter from the hospital so I went and it was normal. I then paid to have a private fibroscan in Dublin which came back as 3 kpa. They will be sending the report back to my GP, I didn't want them to as I know then my GP will refuse any more tests as it was normal. I am seeing them again on the 31st, this was really to discuss going ahead with the ivf but I'll bring it up. I can't seeing me getting anywhere if I'm being honest. I'm booked in for an ELF test next month (private). If that's normal I'll just continue what I'm doing and try to get on with things. It's hard because another symptom will crop up, like the cramps, I get cramping everywhere in my limbs. I just don't know where to go with it now. But I really thank you for all your help and anyone who has replied. X

[Hidden]

After reading your post I checked the symptoms on NHS, all very similar.

Diagnosing fibromyalgia can be difficult, as there's no specific test to diagnose the condition.

Maybe not using your GP try another one if it hasn't already been ruled out. Just a thought.

[Liberty82]

I'll check out fibromyalgia, I have neuropathy and fibro was somehing that initially came up but it was ruled out by neurologist and was diagnosed with neuropathy which I'm on medication for. I'll check out fibro though. I suppose I can't rule anything out at this stage. X

[Hidden in reply to Liberty82]

Hi

I'm so sorry you are struggling.

I agree with Ofeckman re fibromyalgia. I have this and it's a very painful condition. Take care Lynne