Terrified!: I have been diagnosed with... - British Liver Trust

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Terrified!

Noodlynoo profile image
13 Replies

I have been diagnosed with NAFLD and I did the worse thing possible and googled it. It has frightened me rigid!

I havent had any alcohol since 1984 and I'm only about 8lb overweight. After reading it can cause diabetes, and my chances of other organs being fatty too, I'm really uneasy. I tested my blood with a diabetic glucose monitor and it read 9.7 when all I'd had was unsweetened coffee and a piece of toast!

I eat a fairly healthy diet but what can I do to improve things? Less fat? Less carbs? I'm totally lost!

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Noodlynoo profile image
Noodlynoo
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13 Replies
AyrshireK profile image
AyrshireK

Rather than use Doctor Google have a look at the British Liver Trust page on NAFLD at:- britishlivertrust.org.uk/li... and also their page on Diet and Liver Disease - there is specific guidance there for NAFLD. britishlivertrust.org.uk/li...

They reckon that thousands of people in the Western World have this condition only we don't know it and much of it is down to lifestyle.

Like you've found out NAFLD is quite scary in that it is the first stage of change within the liver and it's good that you know about it now and can take steps to prevent its progression and reverse the damage caused. We get too many posters on here who've gone to their doctors and been told its 'just fatty liver' and they've left them to get on with it without proper advice and unfortunately just getting on without making any changes is only going to potentially making matters worse. Knowing about it you can take postive steps and improve your liver.

All the best, Katie

Noodlynoo profile image
Noodlynoo in reply to AyrshireK

Thank you so much for your reply. I will look at those links. I'm not one for sitting back and take an "oh well" attitude even if my doctor is! I plan on doing whatever it takes to reverse this! :)

AyrshireK profile image
AyrshireK in reply to Noodlynoo

Well done you, we've had posters who's doctors have advised they can still drink booze and stuff even with fatty liver ............... that's like pouring petrol on a bonfire & down the line a fresh US has shown severe damage. Now you know about NAFLD you can make the changes and you will reap the rewards.

Wishing you all the very best,

Katie

Your piece of toast may have sabotaged your "fasting" blood glucose measurement. You really do need to be fasting to get an accurate fasting measurement, which is all important.

Simple sugars, particularly fructose (sodas & fruit juice) are considered more problematic than dietary fats with non-alcoholic fatty liver. Avoid High Fructose Corn Syrup in sodas, and fructose in fruit juice like the plague, & don't sweat the fats so much. Complex carbs (pasta) aren't nearly as problematic as simple sugars, so extreme restriction of all carbs may not be necessary.

The "PIVENS trial" showed natural Vitamin-E to be helpful with NAFLD, & many doctors are embracing this therapy. You need to consult with your own doc before you start on this though. Many doctors are still strongly anti-supplement.

You might ask your doc for an iron lab (ferritin & transferrin saturation) as phlebotomy (iron reduction through blood donation) has shown promise in several studies in patients with iron elevations. A web search for: Phlebotomy for non-alcoholic fatty liver disease, should show the results of these studies. Phase 2 trials have already been completed.

NAFLD is a slow moving beast, so time should be on your side for now. Keep pestering those doc's & learn all you can.

Best of Luck to you!

O13B profile image
O13B

Don’t panic you can do things to help your liver recover, and it can if you look after it just like a tiny baby! I totally agree with the others, use the information on the BLT. You need to loose some weight by eating a healthy diet (no ready meals, cook everything fresh) slowly increase your walking as this is the safest and easiest way ( when I go to the shops I walk up and down every isle, even I don’t want anything- it’s warm and easy to clock up the distance!!) you could try light weights round your ankles and you get a good workout just moving round the house. You should reduce fat intake (but don’t go mad - some “low fat spreads” are worse for you than butter) don’t reduce carbs too much (just try to cut out refined sugars (beware lots of “sugar free “ foods have sorbitol-which is a laxative!)

Good luck remember slow weight loss is better and safer than fast weight loss diets! Ignore all that, just eat fresh homemade food:-)

Noodlynoo profile image
Noodlynoo in reply to O13B

Thank you. I do eat quite healthily anyway but there are certain things that I could improve on! Especially sweet things!!

O13B profile image
O13B in reply to Noodlynoo

Try swapping sweet for things like popcorn or ryvita with a scrapping of butter

jbrking profile image
jbrking

Hi. Don’t panic! I’ve been living with NAFLD for 10 years now. I’ve never been a drinker and since diagnosis I don’t but still get high Gamma GT results which supposedly can indicate issues with alcohol. It took me a long time to convince medical people I didn’t drink! Anyway be careful of googling because it will say that it can turn into chirrosis etc BUT if kept in check it may never. Mine hasn’t. I recently slipped just into the diabetes range but with careful eating Im now back out of it. The issue is carbs and so many things - even things you don’t think have many in - can affect your levels so eat fresh; home cooked meals when you can and if you use jars of sauces or even tinned tomatoes check the carbs!

Noodlynoo profile image
Noodlynoo in reply to jbrking

Yes! I read it can lead to chirrosis if left unchecked, but its becoming diabetic that frightens me more. I almost have a phobia about it. After seeing my late husband go through having toes removed, then feet, then almost both legs, the sight loss and the terrible smell of rotting flesh I really cant go through that myself or put my children through another parent going the same way!

I will do ANYTHING to avoid that!

Can I assume that the chances are my other organs are fatty too?

Splodge60 profile image
Splodge60

Please do not feel terrible and terrified. You would have a long long way to go before what you have may, or may not, develop into something really serious. There is no fixed rule that anyone does go from NAFLD to (say) cirrhosis. I have the next stage further on from fatty liver than you have. It is called NASH or non-alcoholic Steato-hepatitis . It is much more serious. However I was diagnosed 16 years ago with it and I’m still here to tell the tale. Yes maybe a sorry tale, as many of you who have read my threads, will concur. Just try hard to get on with your life and do not dwell on your diagnosis. It is one of the fastest growing diagnoses in the western world due mainly to type of food intake and self neglect You really must not feel so terrible and if Dr Google makes you feel so bad, then make a promise to yourself to stop self diagnosing by using it. Just forget about how bad google says NAFLD is or is not. Just concentrate on putting the things right in your life that have led you down this road, namely poor diet, possibly alcohol and like I said, self neglect. I don’t intend to make you feel any worse, just to point out that perhaps you may be frightened when you do not need to be.

Faithfull profile image
Faithfull in reply to Splodge60

Sometimes the fear put on us by ourself a by what we done to our body's but all I say is worry can bring up sugsr levels someone correct me if its all changed .

brcdeer profile image
brcdeer

My husband has stage 4 NAFLD and was diagnosed in Sept. 2016. His liver still functions. When he received the diagnosis the dr told him “you can live 10 more years if you eat right, exercise and lose weight. “ He hasn’t stayed on a strict diet but also doesn’t eat like he used to. He never has been much of a drinker. Special occasions & never to get drunk.

Also, very interesting is his 1st cousin was also diagnosed but with Stage 2 NAFLD. She lost weight and has reversed to Stage 1.

Also, if you can, check on research being done anywhere near you. New drugs are coming out. A friend is in a trial here and apparently she has the real thing (not the placebo) because her tests results have gotten better. Soon it will be almost a year she has been in the trial.

Best of luck to you.

Marydel63 profile image
Marydel63

When you google try to google from medical sites. Hang in there!!

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