Confused over terminology and advice on diagnosis of ALD

[jellybelly]

Hi,

I recently had a Fibroscan, blood test and consultation privately as a result of my chronic alcohol issue as my GP has not been helpful in supporting or diagnosing as a result of my symptoms even though I present with stigmata of alcohol abuse of Dupuytren's contracture, spider naevi and palmar erythema. I chose the Fibroscan as a non-invasive diagnostic tool and for quick results but had to go private to get this done.

I've drunk (although have stopped drinking alcohol now for 5 weeks) a bottle of wine a day for approx 10 years. All this the GP has known, however they never bring it up when i go in to the surgery...go figure.

So, my Fibroscan score is 6.6 KPa - which is obviously above normal, my LFT's are ok and have never shown up any issues with elevated enzymes even GGT at any point the GP has sent me for these. I understand my cholesterol is out of whack slightly but dont know the level as not yet received the results from the clinic I attended.

The consultant's letter states that I have presented with Steatohepatitis which is one step up from Fatty Liver which the clinical specialist nurse who undertook the Fibroscan said I was presenting with (a score of 350 showing significant fat accumulation?) So hence my confusion and alarm. The consultant has advised a Liver biopsy as he states that between 5 and 8 KPa on a Fibroscan score the general rule is now to still have the biopsy to be sure what changes have and are still happening.

I think I felt quite good about the Fatty Liver diagnosis but the Steatohepatitis diagnosis I received in the letter today has taken me aback.

Has anyone any advice or a similar sitation/diagnosis and how did you follow up on this diagnosis?

I am going to go back to my GP with this information, but was informed that it may be unlikely they would do a biopsy on NHS as there is strict guidelines on referral for this diagnostic method. Papers I have read suggest Seatohepatitis can progress quickly to Cirrhosis even with alcohol abstinence, especially in women.

Any feedback greatly appreciated.

[Hidden]

I think at the heart of your uncertainty is your unproductive relationship with your GP and if this cannot be resolved, you should consider moving to another who can a) answer some of the technical questions you raise and b) make appropriate referrals for further investigation, if required. A diagnosis of cirrhosis will lead to greater vigilance about possible consequences (including liver cancer). It was as a consequence of a routine scan, following a 4 year old diagnosis of cirrhosis, that spotted my HCC that eventually led to a transplant. Hope this helps.

Mike

[jellybelly in reply to Hidden]

Hi Mike,

You are correct. My relationship with the medical profession is a factor. as is the fact that I am an over-anlayser by nature so read more into things and can be a more pessimistic person than optimistic.

In my mind with the peripheral stigmata and my physical symptoms I have experienced over several years now the damage is worse than the scan and blood results suggest. So my fear is underlying cirrhosis.

I appreciate what Bolly says about the consultants diagnosis...but I guess in that I am the person I am I wont feel truly in control until I get more definitive evidence as to the actual damage I have done.

The timing couldn't be worse as I'm due to start a new job Monday. I hoped the Fibroscan would put some closure on my anxieties but in fact it hasn't...although it has made me completely sure I wont be drinking alcohol again...so something good has come out of it.

Thanks for the response...it helps to hear from people who understand as it does help alot.

Will post once Ive got somewhere with a GP. I hope it might help others if they ever are in a similar position at any point.

Many thanks again.

[Bolly]

Hi jelly.

Steatohepatitis is the medical term for fatty liver. At the moment your results suggest you don't yet have irreversible liver damage, and your acknowledgement that you do have an issue with alcohol means you can, if you choose to, improve the health of your liver. An understanding of how nutrition and cutting out alcohol will help. There is on another thread an offer from Ayeshire to mail out a good liver friendly diet sheet.

As Mike says, if you feel you cant do this without the support of a GP, change GP.

Best wishes and good luck

[jellybelly in reply to Bolly]

Hi Bolly

Thank you for the response. I have and will be definitely abstaining from alcohol for foreseeable future. I've had an ongoing battle to cut down/stop for many years, with longest abstinence 1.5 years. It has taken me the most of this year to mentally try and undo the reasons why I drink and to finally make this definite lifestyle change.

I'm taking alot of supplements which are liver friendly after extensive research and consideration. I've completely changed my diet...joined slimming world so I am eating a good balanced duet eliminating salt, bad fats and sugar.

I am now considering options to change GP. I'm going to go back with the recent diagnosis and if I get no response of a positive support then I will definitely be changing to another GP (although from experience in my catchment area there arent many much are much better than the one Im with!)

Thanks for your best wishes. I'm looking at being more positive and to at least give myself some positive recognition for achievement so far. I can only concentrate on today and have made good choices and the past is the past so no good beating myself up about how I got here.

I will let you know how I go with the next GP appointment.

Thanks once again for replying...having someone to respond helps enormously.

[liverlove in reply to jellybelly]

Hi. I can't believe you have had to go private for the tests. I went to my gp last year and had ultasound scans and liver biopsy at the Q.E. within about 6 weeks. I to have abused alcohol. I was diagnosed with fatty liver after the scan but then biopsy showed some scarring on my liver, fibrosis. I struggle with giving up alcohol completely but am ok at the moment. I need to lose weight but find it hard going to diet classes, they seem to make me worse. Good luck. I have an excellent gp which helps.

[Ruby52 in reply to liverlove]

Sounds like we have the same GP, apart from I see all different Docs, and not one of them could care less, good job I have 2 consultants that are really good, and have time for me.

[jellybelly in reply to Ruby52]

Hi Ruby52, yes same at my practice too. I feel they dont like to address the alcohol or just dont look at your notes.I really feel they havent a clue how to handle addiction...but in most part none of them know how to handle people as human beings that well either...most dont even make eye contact as you speak to them. Anyway as I replied to Liverlove...i am going to see how things go, be vigilant with my health and keep doing the positive things I am doing right now. Come 6 months I will probably pay for another Fibroscan and/or a Fibrotest to see if things have improved. Its a small price really to pay when Ive spent so much money almost killing myself! Glad you have consultants that are prepared to spend that time and actually listen!

[jellybelly in reply to liverlove]

Hi Liverlove, Glad youre getting good care. I asked for an ultrasound scan from my GP who said as the last one was clear (had been done a year or so ago but not for checking liver specifically and wasnt done by a consultant but GP) and LFT's were normal (except havent done prothrombin - as she said they wont if all other tests clear) I had no choice but to go private as I was increasingly having more and more symptoms. Ive had the letter from the consultant now in hard copy which I do plan on taking in to the GP at some point but tbh I am losing weight, eating healthy. not drinking alcohol and taking supplements and symptoms have impoved no end. I know that there could still be progression of underlying inflammation but I need to give it a shot of at least taking control and seeing how. Good luck to you too. Hope you are well on the way to recovery.