Update

[Aplaceinthesun]

I posted previously that I had booked to see a consultant, well it was the best thing I could have done and worth every penny. (The care in my area is shocking). I didn't complain, (no doubt workloads are huge for the nurse I've seen) but I needed clarification. I've had one review with a registrar, I knew zero about my condition at the time, so didn't know what to ask with no information given, (especially as my mind was still spinning), 10/11 months to be told I can't have a carb restricted diet, only eating when hungry, and no fasting is wrong for me, has slowed my recovery. Nurse on last appointment on her report gave me a Child's score, (seen online after seeing her) it's not been explained how this score is calculated or how to improve it, (never told what my Bilirubin needs to be, or any other bloods discussed)! I will add that she did put on a previous report that I had denied drinking, which had really pickled me off, even if she has heard it all before.

Advised the consultant I know things are not always going to be perfect, but I want to improve my chances, that I had had help from the BLT nurses but thought I need extra help in some areas that a DR or Consultant would be better qualified to do. Consultant was great, told me you have looked to help yourself and used the BLT, and not drank 16 months from diagnosis which tells him that, and wished more would seek help from the BLT. He said he would put me into his NHS clinic, get me appointments for various things and even a Fibro scan, which has not been offered. He confirmed can be compensated and be ok for the future, he just sees it that I need support, and he will provide that.

Could have kissed him, first time I have a little light in the tunnel.

Have a good weekend everyone, wishing you all well.

[Breakfastbabe]

Thank you for sharing and glad you finally have the answers you were seeking.

[Yawn_along]

Hi, great to hear your positive news!

I hope you don't mind me asking, but did I understand you correctly, that you were told you cant do a carb restricted diet, no fasting, and only eating when hungry?

I am having so much trouble losing weight with NAFLD, but in the past, have always been drawn to low carb diets.. I have been wondering if the LC/HF diet I successfully managed to stick to for over 3 years, caused or at least contributed to my liver condition?

[Aplaceinthesun in reply to Yawn_along]

Thank you

Yes, I have to have carbs and regular meals / snacks, I used to do to lose weight on carb restriction / fasting / and eating when I want, but now I have to have carbs with each meal, and I have to have extra carbs before bed for ALD, for liver function. Your diet is different to mine,

I do still balance carbs so, tuna salad for lunch or cottage cheese with high fibre crisp breads, I did have bread today, but I only buy the small, sliced loaves of wholemeal, I try to stay away from toast as it's ease to put too much butter on, (I hate Marjorine and would sooner have dry bread). Thankfully my bloods for cholesterol and diabetes are very good, unfortunately for me I've a small frame and I'm short so every pound shows.

Have they sent to see a dietitian and given you a food plan to follow, this may help?

I've had a non-stick large griddle pan for years, so I make 2% fat turkey mince chilli or bolognaise and use no oil in it, if this helps. I think you have to cook from scratch on fatty and alcohol liver diets to get the best results.

[Yawn_along in reply to Aplaceinthesun]

Thanks so much for your reply. I understand what you are saying, basically you are following a low fat diet, which makes sense.

I was doing well after seeing the hepatologist privately, who conducted a fibroscan, reporting a 4.8 kPa whatever that is, and I did see a dietician too. I managed to lose 10lbs, but actually the advice from the dietician really confused me, and I am now 20lbs heavier again and the weight wont budge!

I don't have a gallbladder, and I have ME, so there are a lot of conflicting symptoms.

I haven't been back to see the hepatologist, but feel I do need some advice, because its been 4 years now, and I have quite a distended belly, and a niggle that perhaps something nasty is going on inside.

Seeing a GP is just way too difficult, and probably a more specialised approach is what I need.

[taar]

Nice to hav update, glad it helped you.

[FridayWalker]

good to hear a positive outcome for you! Did you pay to see a consultant privately ( because of waiting lists /no access to specialist)?

[Aplaceinthesun in reply to FridayWalker]

Yes, I paid. If the waiting list does not improve, which I doubt it will and I need to see them again it will cost £100.00, which I would rather pay and see the head of the Gastro department as opposed to over a year and see no one. It should not be like that, but at least I'm in his clinic now. He also said he thought the best thing to do was get all the tests done and to see me on the same day.

It really is a post code lottery with the NHS, if anyone can afford to or needs it, I would recommend it as a year, or 6 months can make a big difference to many.

[FridayWalker in reply to Aplaceinthesun]

thank you - I’m just at that stage where I think I need to pay to get some answers as too many questions and no feedback at all . Good to hear it has been worthwhile for you.