Please help if you can: Hello. I posted... - British Liver Trust

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Please help if you can

BlueYear profile image
25 Replies

Hello. I posted on here previously but deleted my account as I felt that looking at things on the internet was increasing my anxiety. Anyway, I'm back as further symptoms have developed, and I would appreciate any advice - I know this can't be specifically medical.

So around 6 months ago I noticed very red blotchy palms and fingers. Shortly after this started with abdominal pain (left as well as right). GP said "you can't have a big liver, you'd be going yellow". I didn't think this was quite true, and ended up seeing another GP a little while later. Bloods (including liver function) all normal, so GP refused to do anything further. I paid for my own ultrasound privately. This showed 2 lesions consistent with benign hemangiomata (and an atrophic kidney believed to be congenital). This was "all" it said. So now have an MRI to check they are benign, on Tuesday. I have thought over the past few weeks that my nails have been getting paler, and now I can see they defnitely are. Not completely white but very pale, with a thin red band at the top - I have read this could be Terrys nails. I should say a private blood test showed up a folic acid deficiency so ? Could be that - I so hope.

So my questions: how likely is an MRI (regular with contrast) going to show up liver damage? Does anyone know of fibroscan services in the Yorkshire area - I can't find any online? Will this give me a conclusive answer?

For context, I'm 33yo. I'm very overweight with a BMI of 32 (have been overweight since teens). Current alcohol 0, up until these issues started maybe 1-2 bottles of wine a week. However, lots of binge drinking in my 20's (not daily).

My GP has written me off as health anxious. If the MRI doesn't show anything (worse fears are Cirrohsis,and Cancer); I need to know if I can accept this (even with the red hands/ white fingernails) or if I need to push harder. If I need to push harder, it will be paying privately, so how do I go about this. If my fears are confirmed in the MRI, then I assume I'll be referred on in the NHS.

Thank your so much for reading.

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BlueYear
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25 Replies
Peter_Plymouth profile image
Peter_Plymouth

I’m sorry to hear the issues you are having - it can be a very scary time and sometimes the medical fraternity can be unhelpful unless you can point at something physical that they can then treat. You’ve done the right thing in seeing another doctor and I’m afraid you will always have to push to get the treatment you deserve.

As for the MRI - it’s brilliant you are getting that - it is the gold standard for liver health and will give your doctors the information required - if it is all clear, and I hope they find nothing, then you can rest assured that there is nothing to worry about and you can get back to enjoying life. You don’t need to worry about the Fibrascan - anything of note will be detected by the MRI - Fibrascan is just a quick tool sometimes use to evaluate liver damage but doesn’t give the details MRI will.

Do try to stay away from Dr. Google as it will just worry you with all the miss-information you will find and will just add to your anxiety. Try not to worry, have the MRI scan and see what the report says - you can then move forward but with knowledge of what is going on and what can be done to help you.

I wish you all the best and try to enjoy your time as best you can - Peter

BlueYear profile image
BlueYear in reply to Peter_Plymouth

Thank you Peter. That is a very helpful response. I had read such conflicting reports on whether an MRI would show up liver damage with accuracy, so that is good to hear. At least then I will know. Thank you again.

Richard-Allen profile image
Richard-Allen

Hello BlueYear and Welcome to this site. Hopefully, you'll find a lot of help and support on here.

You are right to be cautious on the Internet as they can be some horrible people out there just trying to take advantage. Sadly, we have come to a point whereby some medical advice just doesn’t go far enough to explain things clearly, so people go in search of answers. As a nation, we pride our NHS, but I feel this is now becoming flawed and an element of unprofessional care can sometimes creep in.

Any doctor or healthcare professional should always have their patient's best interests at heart. To just fob, you off without wanting to understand your medical condition is tantamount to misconduct (This is my opinion only).

Sadly sometimes with any organisation things can go wrong. With regards to our health service, there is an organisation all over England, and they act as a “go-between” for when things go wrong. It’s all free of charge, and they are there to help when things go wrong. I would advise you to make contact. I see they have a North Yorkshire branch and their website can be found here: healthwatchnorthyorkshire.c...

“HealthWatch” also have a YouTube video channel so you get to understand and know of the work they do: youtube.com/user/HealthWatc...

I’d just like to go through some of the comments you’ve made in your post. So, here is the first one. GP said, "you can't have a big liver”, This isn’t strictly true. You can have a fatty liver and an enlarged liver. So, in effect, your liver can be said the be larger more than normal.

There is a quick, simple test a doctor can carry out and this involves lying down on the examination couch. The liver as you’ll know is on the right-hand side of your body and sort of sticks out just below the ribcage. Here the doctor should use the “Three finger rule”. By placing one finger just below the ribcage they should be able to feel the end of the liver. If the liver is enlarged, they can use two fingers to gauge how much it is enlarged, and then three fingers. One finger would be normal. If the doctor used two or three fingers, then they should order up further tests to comfirm the enlarged liver.

A doctor has many tests available to them. A fibroscan will tell how supple the liver is. If you’ve ever seen a piece of liver in the butcher's shop, you’ll notice that it looks all shiny and squidgy to touch. When the liver starts to become damaged, the texture of the liver is changed and it becomes a lot firmer. A fibroscan measures this density and will show up how course the liver has become.

Most doctors these days seem to place a lot of faith in the basic liver function blood test. This test just shows how the liver is performing at that moment in time. Many doctors just look at these results and simply say, “Your livers fine”. A person can have cirrhosis of the liver, and even end-stage liver disease, and still have good blood test results.

The liver is constantly repairing its self. If the liver got to a point like that of Cirrhosis, this is when it’s repaired it’s self so many times that scar tissue begins to form. Once the liver becomes severely scarred, it may not be able to carry on doing many of the 500+ functions. Other problems may begin to develop. Even when the liver becomes so damaged it struggles to perform, it can still recover enough to still function.

There is a test called and ELF test (Enhanced Liver Fibrosis) this blood test will show up and tell a doctor if the liver is now Fatty or at the Liver Fibrosis stage.

You mentioned an MRI scan is a good option as this will show the consultant how scarred the liver is. If they then carried out an MRI with contrast, this is a dye that is injected into your arm and travels up into the liver. This gives a much clearer image and a consultant will be able to identify and unusual markings that could indicate possible tumours or cysts. (Please don’t go into panic mode at the sound of the word tumour. I’ve had five of these and am still here to talk about it).

This must be an anxious time for you, and your doctor certainly isn’t helping you.

If I was you (and this is just my advice). I would take a look at the Healthwatch site and see what you think. They will always try and help you, so you’ve nothing to lose.

Don’t worry about getting this doctor into trouble. They have a duty of care to you. If they're not supporting you when you need them, they could well be failing others too.

Finally, if you prefer, you can always send me a private message if you find this more comfortable. Some people with anxiety can find it hard to speak out. I will always help if I can.

Best Wishes

Richard.

BlueYear profile image
BlueYear in reply to Richard-Allen

Thank you so much for such a comprehensive reply. I really hate to complain, and this GP conversation was several months ago now (there's been lots of me going back) so it would seem strange I think. Regardless, you are right and I will consider it.

I did see a different GP face to face after that and she physically examined my abdomen by pressing and found nothing untoward. So that is reassuring to hear that an issue may have shown up this way.

I requested an ELF but this was denied as they stated there is no rationale.

My appointment letter for the MRI scan - which is to check on what is believed to be 2 benign hemangiomas (found on the private ultrasound) - definitely states "MRI Liver with Contrast". So your response and the response above confirms to me that I should be confident in the answers this gives, one way or another.

Thank you for your offer to private message, I may well do depending on my results! Thank you.

confused71 profile image
confused71 in reply to Richard-Allen

I did all my research on google as I literally wasnt given any information about anything and as I didnt have any knowledge I had to look for it myself on the internet ---I had a biopsy which was when i found out I had Nash ---7 weeks after the biopsy I still hadnt the results so I saw my GP she gave me a print of the results and said I dont know what the results mean t but you may be able to understand them --I sat with my daughter and little by little I searched the internet and diagnosed myself with Nash stage 2 top end with no bridging --can you imagine how angry felt as I had seen liver specialist 2 years earlier and because someone forgot to put me on the clinic list I wasnt seen for 2 years . I put in a complaint and the specialist phoned me at home and apologised for leaving my appointment so long ---she asked me how I knew I had Nash and when I explained how she said crikey you know a lot about Nash and yes you are right you have Nash stage 2-3---I am sorry but I am so happy in my situation that I took control ,I have lost faith

Peter_Plymouth profile image
Peter_Plymouth in reply to Richard-Allen

Just a minor point for clarification - the contrast is not radioactive and this misinformation may worry some people.

The contrast used is Gadolinium which is a paramagnetic metal ion and enhances the blood vessels as well as enables better differentiation between benign and cancerous cells in the liver.

One of the main advantages of MRI is that it does not use any radioactive components so there is no limit to the number of times you have a scan. This makes MRIs the safest form of diagnostics imaging.

Richard-Allen profile image
Richard-Allen in reply to Peter_Plymouth

Many thanks for highlighting this error. I have removed the reference to the contrast solution being radioactive. I believe this solution is referred to as being a non radioactive iodine.

hells456 profile image
hells456

You can definitely trust the MRI results and I hope it comes out clear for you.

For what it's worth, I have just tipped into cirrhosis and my nails and palms look normal, and I have never had any pains around my ribs. My symptoms were fatigue that absolutely disabled me to the point where it wasn't safe to cook or drive. No appetite where I would go days without eating and not even notice, and dropped stones of weight. My hair was falling out, my elbows and wrists ached and I was so itchy I'd leave bloody scratches all over myself. My liver disease was clearly seen in all blood tests, ultrasound and fibroscan.

Good luck with the MRI, please do tell us how it goes.

BlueYear profile image
BlueYear in reply to hells456

Thank you very much. I'm sorry to hear of your diagnosis. From what I've read here, if you've just tipped into that, then there is a lot you can do to help. I know you know much more than me though! The only symptom you have described that I can relate to is joint pain (back and knees for me); but I have a 2 year old who loves to be carried so I've put that down to that. I will certainly update with the MRI results. Thank you again, it does mean a lot that you've took the time to reply.

hells456 profile image
hells456 in reply to BlueYear

Mine is autoimmune so I am on meds to slow the progression. Hopefully your test is clear, then it may be time to go back to the drawing board and see if something else is causing your symptoms. I know nothing about health anxiety so I don't know if that is a possibility or if they just don't know, but something is causing them. I'll keep my fingers crossed that you figure it out.

BlueYear profile image
BlueYear in reply to hells456

That is good to hear medication wise for yourself. Thank you.

Frananncru profile image
Frananncru

If you are not happy with your GP , try and see another doctor in the practice or you could easily change GP practice .Your worries and concerns should be recognised and addressed by the professional involved in your care .

Try to avoid internet searches ,it will give you answered relevant to you and will probably make any anxiety worse .

Good luck x

BlueYear profile image
BlueYear in reply to Frananncru

Thank you. I think I've now seen some 4 GP's in the same practice. I will await the MRI results and depending on the results I'll have to see from there. Thanks again.

WaggyMamma profile image
WaggyMamma

It was an MRI when I was taken into hospital for another issue that found my liver cirrhosis. I had no obvious symptoms beyond extreme tiredness (which my GP didn't take seriously) & it even surprised my GI consultant. Try not to worry about what 'might' be & see what your MRI shows; then you can plan to move forward.

JJgut profile image
JJgut

I feel like it the ultrasound report said it was "benign" that means the doctor who reviewed the ultrasound seemed reasonably sure that it was not cancerous. If they weren't sure, they would have said "further investigation is needed to confirm". In the USA, they are too concerned about liability to call something benign unless they are reasonably sure. Not sure if the same is true with the NHS in the UK.

I also believe that ultrasound would have showed it if your liver was cirrhotic. I know ultrasound doesn't always show minor fibrosis, but I think it does reveal cirrhosis.

BlueYear profile image
BlueYear in reply to JJgut

The ultrasound here is not reviewed by a doctor, but rather the ultrasound technician, I have read that it depends on the technicians expertise as to how much the results can be trusted - and she did seem very experienced/knowledgeable. So hopefully it would have picked it up if advanced.

As for the (hopefully) hemangiomas she put "2 lesions consistent with benign hemamgiomas". I think the use of the word "consistent" is what's key - no promises (completely fair enough). She was the one who recommended the MRI to check. I've had it today, they said up to 2 weeks for the results, so hopefully I'll know soon.

Thank you for your response, I have found it reassuring 🙂

JJgut profile image
JJgut in reply to BlueYear

See, in the USA, technicians are trained not to talk to patients about what they observed. They are too concerned about being sued if they incorrectly tell patients that "all looks good" if all isn't really good, or telling patients that they saw a problem when there wasn't one.

They use words like "consistent" all the time in imaging reports. That just means "this is what it appears to be". That's all they can say with an imaging report.

BlueYear profile image
BlueYear in reply to JJgut

Absolutely. The fear of being sued is sad 😔. I think it depends on the type of scan, I knew with the MRI they wouldn't tell me anything. Up to two weeks for the results they said. So the anxious wait is on....

BlueYear profile image
BlueYear

Hello. So a bit of an update. I've spoken to the Dr r.e. my results. He read the report out word for word. A bit puzzling in that the report starts off by saying something like "we do not have a recent ultrasound for this patient (this is because it was the private ultrasound the GP referred me from, so fine) last ultrasound we have from August 2019 shows abnormal liver, I presume we are taking about the same patient?" - well I didn't have an ultrasound in 2019??!! I had normal pregnancy ultrasounds that year but no liver issues were ever raised. GP just dismissed it as "wrong patient" but it has unerved me.

Anyway, so the report - which I was initially panicking wasn't even mine due to the above - but it is as it showed the small left kidney which the private ultrasound did. It showed a small benign cyst to the right of my liver. No mention of the hemangiomas to the left. Everything else was fine it seems- "no significant fatty transfusion", "no significant lesions", shape, size etc. So can the hemangiomas have disappeared? Could the ultrasound have been mistaken? GP said cyst just one of those things and no concerns. So can I now think my "symptoms" - abdominal discomfort, red blotchy palms, pale fingernails - are not liver related, and relax? GP said so, so I really hope so. Thank you in advance for any advice

Worriesalot profile image
Worriesalot in reply to BlueYear

Read on here that finger nails and red palms are not used as a diagnostic tool any more.

Worriesalot profile image
Worriesalot

Honestly, it’s beyond belief. Consultant didn’t know which patient you were????? Would be so relieved if I were you. Enjoy your day!!!!!!

BlueYear profile image
BlueYear in reply to Worriesalot

Yes I think so. I've now rang the radiology dept and asked to speak to someone, as obviously it will go on my records. Think I will feel a bit more relieved once that is cleared up, but yes I am very relieved. Confused as different things have shown up, but still relieved. Thanks!

BlueYear profile image
BlueYear

What I hope to be a final update from me. I've spoken to the MRI dept, it was a typo on my report, it should have said a past ultrasound showed an abnormal kidney. I still have red blotchy hands, pale fingernails and abdominal/ back pains. I know none of these are diagnostic, but they are strange. However, I have now had 2x bloods including LFT, an ultrasound of my abdomen, and an MRI of my liver. All have come back relatively clear (benign hemangioma/cyst). So my GP is now get definite this is not my liver, and I feel like I need to try and just get on with my life - carry on trying to improve my diet and keep alcohol in moderation. I would really hope if it was my liver causing the above symptoms - it would have shown up somewhere on the above? Thank you to you all for your invaluable support, and to the helpline who I have spoken to twice now and have been incredibly friendly.

Spoons20 profile image
Spoons20 in reply to BlueYear

This all sounds like good news, it’s so hard not to worry when you have symptoms I have the pale finger nails but not white just pale, ongoing right back and shoulder pain for a year now and I’m convinced it must be my liver, ultrasound showed clear but it still hasn’t settled me, waiting for an MRI and if that’s ok I’m going to have to try and move on as I’m driving myself and my family insane, I just don’t feel right about this pain In my back it never goes away.

So pleased things seem to be going in the right direction for you

BlueYear profile image
BlueYear in reply to Spoons20

Thank you Hayleigh. Yes my nails are pale with a pinker band at the top, but definitely not white. I've actually cut them short today so got rid of the band, which is making the rest of the nail seem pinker, which is nice! It is hard, I've had the pain a lot again today, my hubby certainly thinks I've gone mad! You read about scans missing things, but I'm trying to think that the chances of bloods, an ultrasound and an MRI have all missed something must be incredibly low - and try and move on. I really hope you get good MRI results, please try and reply on here and let me know, I think it will be positive for you if the ultrasound was x

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