Update

[Millie2014]

Good afternoon everyone. I just thought I would update everyone who has been following my posts. I went to see my GP and have had a referral to Kings to see a liver specialist. I have had the appointment date through already for 4th November. Hopefully a diagnosis will be decided on and I will finally know what is causing my liver issues. The biopsy is still inconclusive despite being reported on by 2 different specialists. I will update you when I have further news. Thanks for everyone's advice this forum has been a godsend to me.

[Bootandall]

Great to hear from you and so pleased to hear you are making progress! I hope you'll finally get some answers. 🙏😄

[Millie2014 in reply to Bootandall]

Thanks very much

[Steven_]

Hope you get a diagnoses soon. I remember my consultant telling me that in some patients they have to report on the biopsy in two places to get a proper understanding. Mine was understated when it was first reported on so was sent to addenbrooks for a second option and was founded to be more damaged them first thought.

[Millie2014 in reply to Steven_]

Thanks Steven that's very interesting. I hope you are doing ok.

[Hidden]

Hi

So pleased you are finally getting somewhere. Love and hugs Lynne xxxx

[Millie2014 in reply to Hidden]

Hi lynne I hope you are not feeling too bad. Just a quick question. You have mentioned that your nafld and nash were caused by meds given to you by Drs over the years. There is a possibility that my liver damage is also drug related. However the only strong drug I was ever prescribed was prednisolone. This is a steroid I was on in quite big doses for about 9 months. I am suspicious this could be the cause but my consultant says 100% categorically no. Just curious as to what drugs caused your liver damage if you dont mind me asking. X

[ThreeSmiles in reply to Millie2014]

Hi Millie

Just read this thread and seen your question to Lynne. My kidney issuette post TP is thought by my Liver Consultant to have been caused by Amlodophine - a blood pressure tablet.

Good luck in reaching some sort of diagnosis on the 4th November!

Angus

[Millie2014 in reply to ThreeSmiles]

Thank you that is interesting. I have been on amlodipine in the past but not for some time.

[Millie2014]

Thanks very much Lynne xx

[Hidden in reply to Millie2014]

Hi

I think it would have been a lot if different pain relieving drugs. My son who has Crohn's has had to quite a lot of steroids and haven't caused him any harm. I've not been good today, I should have been meeting a friend from the forum called Gill today but I have been in so much pain and felt really nauseous that I had to cancel which u was gutted about. Oh, well. I will keep smiling 😊 please take care. Love and hugs Lynne xxxx

[Millie2014 in reply to Hidden]

Sorry to hear you are feeling so awful. Is the pain because of the liver issues or your other medical problems? Thank you for the info. I hope that I will soon have some answers. Hope you are feeling a bit better soon and you can rearrange meeting up with your friend x

[Hidden in reply to Millie2014]

Thank you so much. Pain is cos of all my conditions xxxx

[alfredthegreat]

Hi Millie. I hope all goes well and that you get a firm diagnosis, at least you will know what you are dealing with and be able to have the corresponding treatment for it. All the very best. Alf

[Millie2014]

Thanks Alf I will let you all know the outcome. Have a good day

[davianne]

Hi Millie, good to hear from you. I hope you get the answer to your liver issues. It's dreadful not knowing what is going wrong. I'll say a wee prayer for a good outcome at your appointment.

David

[Millie2014 in reply to davianne]

Thank you that is very kind of you David. I am hoping to have a good experience at Kings. It will be my first time seeing a liver expert and surely they will be able to make sense of everything 🤞

[davianne in reply to Millie2014]

I hope so Millie, I'll keep everything crossed for you🤞🤞🤞

David

[ThreeSmiles]

Hi Millie

That’s good news! Such a shame though having to wait so long. I think sometimes you (one 😁) spend your whole life “waiting “ when you’re ill ☹️. Thing is to try and not do too much thinking about it and get on with your (ones 😁) life - well that’s what I tell myself. Sometimes it works 😁👍 - but not always! 😁

[Millie2014 in reply to ThreeSmiles]

It's good advice. I have been exercising playing badminton twice a week. Something I haven't done since I was a thirteen year old school girl. It is helping with my state of mind and giving me something else to focus on.

[ThreeSmiles in reply to Millie2014]

That’s great millie! Badminton is a great sport isn’t it! Not that I can play any more but I used to love giving the shuttlecock a welly 😁👍. Hope that continues and maybe a hobby as well 😁

[Woodystar]

Hi Millie, just causfht up in your story and I find it's very similar to my own. I've not had a biopsy but have been diagnosed with nafld and had a period of high enzymes. My gastro consultant opted to do the ELF blood test to see where I was with fibrosis and it came out as moderate. I too have now been left not knowing what's occurring, I do know I've got a cyst in my liver and I also have genetic high cholestrol and I'm seeing a Lipid consultant about that.

I agree entirely, it's the not knowing that's difficult, not feeling very well and not having clear diagnosis or what the future will bring, despite eating well and moving as much as possible (I have fibromyalgia too, which doesn't help). I have to wait another 18 months to have another ELF test to see how things are progressing.

However something interesting has cropped up this week and I am turning my body over to medical science. I have volunteered to have 6 MRI scans checking out new MRI software that may in the near future help cases like ours. It's with a imaging research company called Perspectum Research and means next week I will have to go to Manchester and London. This will help check out the consistency of the scanners etc. I will let you know how it goes. I don't know if they have found enough volunteers yet, I do know they needed 160 people with recently diagnosed NAFLD.

[Wass71 in reply to Woodystar]

Hi, I've taken part in a couple of studies for perceptum, in Oxford. One for the original liver multiscan, and one having several scans in one scanner then the same scan in another machine. They are very nice people. They will reimburse your travel costs, but you may have to remind them. X

[Woodystar in reply to Wass71]

Thanks for that, I think we feel they are genuine enough have spoken to them a few times now, but will keep what you said in mind 👍

[Wass71 in reply to Woodystar]

Sorry, I wasn't suggesting they are anything but genuine. I just mentioned the travel costs because usually these things are left to the young researchers and I think they have a lot on, so it can get missed. I only thought you should know because you may not realise they are more than happy to reimburse you.

You will be sent a detailed interpretation of the scan, and they use a score which let's you know how much fibrosis you have. Which is very interesting.

The lead Dr who devised the software is a lovely, friendly, enthusiastic man and genuinely wants to improve imaging for liver disease.

Best wishes

[Woodystar in reply to Wass71]

That's OK, I didn't feel you were being negative at all and I totally understand what you mean when you say they are busy, the amount of time they have already spent with me just sorting out the dates and appointments has been no small task and to think they are doing the same for more than 150 people too.

That's interetesting to know about the report. I wasn't expecting to get anything from them other than if they found something I didn't already know about they would tell me. I just hope it helps to progress diagnostics for liver conditions, know how frustrating things have been for me so far.

[Millie2014 in reply to Woodystar]

Hi Woodystar thanks for taking the time to read through my posts. I think our stories do sound similar. The liver specialist will hopefully give me that much needed diagnosis. The research you are getting involved with is good news and will I'm sure help you as well as others In the future. I would love to hear how you get on. I have had so many possible diseases suggested in the past which my symptoms and blood tests indicated such as sphincter of oddi dysfunction, autoimmune hepatitis, pbc, psc etc. Each time these have been retracted. Fingers crossed I am going to be diagnosed this time at Kings.

[Woodystar in reply to Millie2014]

Fingers crossed for you Millie, I too had to have alsorts ruled out and then came to a full stop, my kidneys then seemed to follow and my kidney function dropped too.

Have you had an ELF blood test or do they not need to do that now you've had biopsy?

I think the purpose of this new scanning software is to try and avoid biopsy where possible and give a better idea of how inflammation and fibrosis is progressing etc so they can better assess which of us will go on to develop chirosis instead of leaving us hanging around until it happens or not, to find out

[Millie2014 in reply to Woodystar]

I am assuming that I dont need an elf blood test as I have had a biopsy. The fibrosis score on my fibroscan indicated mild fibrosis so that's good. I do like the sound of the new scanners you are testing. We are definitely in need of better non invasive testing to assess liver damage. My mrcp tests were always reported as normal despite there being an obvious issue. Have a good day.

[Woodystar in reply to Millie2014]

I think you are maybe right, I think I was given the ELF test instead of a fibroscan, although my GP wanted me to have a scan too and wrote to the consultant but I've not heard anything back from them yet. So just left waiting until the next ELF test is done, if it passes the NICE guideline of 10.5 then I think they would progress further (although I wasn't far off that)

[Woodystar]

My GP told me this and I've been doing my best for the last year. According to the lipidologist I see diet is one aspect that can help, but I also have a genetic problem with cholestrol which they think may be causing the fatty liver and diet can't help that.

[Millie2014]

Hi gymdandee Thanks... I have been Including lots of good quality olive oil in my diet since I discovered the liver was the issue 👍

[Hidden]

Hi Millie,

Delighted to hear you are moving forward. 4th November is not too far away. I know the answers will help you move forward. For now I send hugs and want to let you know this site will stand with you, hold your hand when you need strength. Make you smile when it’s needed.

Stay strong, try to keep fit.

Jaycee 😘 xx

[Millie2014 in reply to Hidden]

Thank you Jaycee that is so nice to hear. I am tackling the fitness playing badminton with my husband twice a week. It is helping with my energy levels and to mentally stay positive and strong.

[Hidden in reply to Millie2014]

Staying positive and strong for me was a big part of things. That and this site, to come to “MY” place and know there were like minded people, who I could tell anything to. Enjoy your badminton Millie with your hubby you will make it through.

Good Luck on your journey.

Jaycee

[Hidden]

Hi Millie

I've no idea why I'm only just seeing your message of 14 days ago which I must say is wonderful news to read.

Badminton's a lovely way to spend an hour or two away! You carry on girl and enjoy it as much as I use too many years ago!,

All the best at Kings and my fingers are crossed all goes in your direction.

Love Trish x

[Millie2014 in reply to Hidden]

Thank you so much.