NAFLD to NASH to finding out the exact cause - where to go from here...

[photostar]

Hi Everyone,

I'm new to the forum and am eager for any advice given .

I have recently had a scan done by the Perspectum Study in Oxford which showed a 17% fatty liver, normal iron and a very/100% looking red inflamed liver which was marked very high red on their graph. From my talk with the team there, from what I understand is that I now have NASH, but it wasn't clear to me if it is just inflammation or rather how much fibrosis is/has occurring/occurred - ie. rather I am at a high fibrosis stage.

Prior to this new scan, I have had elevated AST and ALT for about 12 years and more so after the birth of my son. Most recently, August '16, my AST and ALT have gone up further along with me also having a raised CRP of 7.6 and a raised ALP. I My TSH was okay, and I had an ESR that was okay.

I've never been a drinker or a smoker, but I did use Ibuprofen or Paracetamol daily for Firbomyalgia which is why they said the higher enzymes were normal (ie. they felt that was the cause and not to worry). I also/have always been obese since I was a kid.

I was determined as having NAFLD in June '15 via the results of an Ultrasound, CT with contrast and my bloods. I had been having right sided pain and my GP thought maybe I had a blocked stone or something (I had my gallbladder out as a teenager, over 20 years ago). I also was having a super hard time losing weight though I was trying. The Specialist at the hospital felt I didn't need a biopsy and he felt I could reverse things. He also said that it was safe to try for a 2nd child (as I had asked).

I became pregnant and was feeling quite unwell and itchy, but thought this was due to the pregnancy or allergies. October '15 at almost 8 weeks I miscarried, which went badly due to the placenta not letting go and I needed blood transfusions.

I have not felt at all well since that time - even more tired than normal with Fibro and I've been having some odd symptoms not seemingly related to the liver, including a racing heart 170 bpm at night/woken from sleep (anxiety I guess), edema and more recent - 8 weeks ongoing, I have had a sudden emergence of veins in my upper extremities including my hands and face. The vein things really freaked me out as I am someone who has always had hard to find veins, even during pregnancy.

I had my heart checked privately (I'm in the UK) and the cardiologist signed me off as it not being heart related as he was happy with my ecg's, holter and echo. He felt my liver needed more evaluation due to blood results. He also thought it was worth me seeing dermatology for the swelling and possibly looking into immune causes.

Sorry for the long story, I guess what my real question is - is that I don't know where to go from here with my GP regarding my liver. I don't know if I should request a referral for a Biopsy to determine 100% that its NASH and try to get it staged (fibrosis/vs massive inflammation), and I also don't exactly know the cause of my liver's NASH - ie. is it caused by fat alone, genetics, immune? Should I be finding out the cause and to do so, is a Biopsy able/needed to do that?

I've been reading alot on here for some time and I look forward to hearing from you !

[grace111]

even although you have had your gallbladder removed. it is still possible to have stones as its the liver that makes the stones. when you have a gallbladder they collect inside it. when the gall bladder is removed the stones just go somewhere else in your body. they can even get trapped inside the bile duct. i have had my gall bladder removed and when i was in hospital there were people there who had stones in their bile duct and had had their gall bladder removed years ago. also even although you'v had your gall bladder removed you should still be on a low fat diet. its good that your heart is fine. you would need an MRI CT scan to see if you have a stone blocking your bile duct and that could make you itchy. the symptoms of gallstones are so many and painful and change a lot, such strange things happen with gallstones as i remember so well. so its your liver that causes gallstones. you can reverse fatty liver and it would be good if you could try and do that. i hope that someone else will come along and maybe have experience of the other things you have spoken of. i wish you well and i do hope that you go on a low fat diet. love grace xoxo

[photostar in reply to grace111]

Thank you Grace111, and for being so kind! I thought possibly that stones could be the issue, but they did do a CT with contrast and have said they don't feel there are any stones or blockages from what they've seen. I agree I do need to eat less fat definitely, I know a lot of the fattiness of the liver could of been contributed by too much sugar - I used to drink 2 cans of soda a day for years and add sugar to everything it seemed. I stopped doing that though when I found out about my liver being fatty.

[grace111 in reply to photostar]

its a pleasure, i wrote the post based on ." I had been having right sided pain and my GP thought maybe I had a blocked stone or something (I had my gallbladder out as a teenager, over 20 years ago) " i do hope that you find out what is wrong as there is nothing worse. im glad to hear that you'v stopped drinking those cans of soda as they are full of caffeine. i only say this as i want you to get well. i'v got a fatty liver to but i'v been over eating since i had my gallbladder out and paying the price for it. after starving for nearly a year i had lost so much weight and just love my food so im working hard on myself too. all the very best to you. love grace xoxoxo

[photostar]

Thanks reallyfedup123, I agree - I didn't trust the results either, and I did check just in case, but it does appear that it is actually in the good and my thyroid shows that it should be happy.

[mrsmerlin]

Hi

I have fibro and NASH (and epilepsy... oh deep joy)

You should be under the care of a hepatologist for your liver but I would certainly not ask for a biopsy. The research being done in Oxford gives a better idea of the condition of your whole liver where a biopsy will only show what's going on in one small part.

As for the GP apart from specialist referral I would ask for a complete run of tests measuring your thyroid and other hormone levels.

Welcome to the club we don’t wanted to be in

Rita

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Hi Photostar,

Due to your complex medical history it would be highly advisable to obtain a referral to a liver specialist. They will then be able to correctly advise you on a plan and correct diet advice,

Best of luck,

Kind Regards,

Rebecca