"The most frustrating thing about being diagnosed with fatty liver or NASH is…" The casual way in which the doctor gave me the diagnosis. There was no plan, no treatment and the only advice was to lose weight.
I took matters into my own hands, informed myself and asked for a fibroscan which confirmed NAFLD/NASH diagnosis ( without evidence of fibrosis). However, I am now back to square one, there is still no plan for follow up or treatment. Since my LFT's are just out of range at the moment, I am not unduly concerned. Nevertheless, I will ask for a repeat scan in one year or sooner if my LFT's become unstable.
Written by
mauschen
To view profiles and participate in discussions please or .
77 Replies
•
It's great that you have taken control and ownership of the situation, and I'm sure you will encourage other people to do the same by posting and sharing like this!
I was Dia. high 3's-- and started and exercise routine lost 10 lbs and dropped to 1 1/2 -- But putting weight back on so not sure - saw my gasro Dr. yesterday - she wasn't to concerned - just lose the weight and get back to my swimming and exercise routine was what i got
I bought one of those special wrist watches which monitors your steps, heart rate and the steps you climb, not for my benefit I might add, for my doctor! I felt as a fat person that I needed to prove that I don't sit on my backside all day watching TV. My gymnastic class is also supervised by a doctor and since 2014 I have only missed one or two classes. My HbA1c is 5.8% and I grow my own veg to eat and my diet consists of fish, chicken and veg ( and a few biscuits), no other processed foods, yet I cannot lose weight. It pains me when doctors and nurses say "just lose the weight" I would be thin if it was that easy, the problem is it's not.
We are all individuals and should be treated as such.
Could fluid excess be the cause of your weight gain?
I have been hypothyroid since 2011 and Hashimoto was diagnosed in 2016, this makes weight loss very difficult but unfortunately, doctors don’t seem to agree
I understand. My daughter was diagnosed with both too. But her thyroid is in normal range finally. Her weight fluctuated and still does even though thyroid is normal. Is why I wondered about if it had been tested.
She had both at same time. She sees one of the best Doctors. She goes and is tested every so many months and twice her numbers have been normal with no thyroid medication.
Have you joined the thyroid community on health unlocked? If not, perhaps that would be a good idea. You will get information on so called normal blood results.
I should I see a specialist they tested my thyrid for cancer 2 times every 2 or three years if it grows. Have goider and nodules. No meds they say I'm fine. I just wonder.
Yes mauschen it very well may be , and my eating habits aren't the best.
I am one to skip breakfast {not good } i usually don't eat lunch and have supper late when i get home{ also very bad } so i know what i have to do but i am up there in age so it won't be that easy -- i need to get back into the pool, but first i need to be able to get into my scuba suit because of the cold water -- then i should be ok --we will see - best of luck to you .
Need to eat to lose weight your body is in starvation mode! English muffin with peanut butter in the morning pop it in your toaster quick! Take it with you!
I don’t think peanut butter and English muffin. I would say almond or sunflower seeds butter ( without any addictives) with whole grain bread , vegetables, fruits and herbal teas, preferably dandelion) ..
I was dx with ITP and fatty liver at the same time. Told only to lose weight once. ITP was the big issue then. 2 years later liver levels were up, so was sent to gastroenterologist. She found severe liver scarring ,Nash, and Alpha1 Antitrypsin Deficiency. I've been eating better, exercising, lost 60+ lbs since January 2017. Still having testing for Alpha1... it's genetic.
Sorry, I seemed to have missed your post tgk62. You really do have a lot on your plate and to be diagnosed with Alpha 1 on top of everything else, its no wonder you have lost so much weight.
Have you read any of flo1 posts? She is a very informed lady on Alpha 1, may I suggest you get in touch.
I lost the weight by working it off and eating better. It never melted away. I'm continuing to work it off and eating right (I ride my stationary bike 3 times daily, for 30 mins at a time). But I was not given any info about fatty liver, other than if I lost weight it should get better. I had to take matters into my own hands.
From what I read in this community, the majority of us have had to do the same. Take matters into our own hands, inform ourselves and get on with it. Have you had further tests to determine whether or not your weight loss has made a difference to your fatty liver?
Yes I did at 9 mo after the first ultrasound. I had maintained no sugar no carbs high protein vegetable diet...had lost 15 pounds and my liver was in much better shape. They did an extensive ultrasound to make sure ....Dr said I was on the right road so keep it up. But sometimes I get so hungry for the old foods....oatmeal cookies, pizza, potatoes and gravy....it gets really hard to stay away from that. The diet changes have worked. Weight is coming off slowly but I'd rather do it slower anyway. I feel better..have more stamina but it's not easy.
Well done! I wish you well in your endeavours to maintain your lifestyle changes, it won't be easy but the positive results must make you feel good about yourself and much healthier. I wish I had your strong self control.
My doctor said 10-20 pounds but I've lost 10 and feel worse. I have nutrition malabsorption issues they refuse to acknowledge; because I'm under 40, they want to believe I can't be sick at all. I've been trying to lose weight for years on my own, them telling me do didn't make a difference. But my weight gain is a symptom, not the cause of my problem. That too they won't believe. Doctors must sleep really well knowing that no one can get sick without their permission
Since they refuse to tell me HOW to lose weight, I can only try to eat less. But that has turned out to be a bad idea as I'm not getting what I need to begin with
I recently was advised to try a plant based fibre based product which also adds good bacteria to the gut. Like you, I could not lose weight easily even though I reduced my food intake dramatically. However, slowly the weight is coming off and I feel better for it. It’s important however to ensure that you eat enough balanced nutients and take regular exercise.
because of my low cholesterol i dont think a plant based diet is safe for me. i also have a hard time keeping my blood sugar high enough if i dont eat meat and at least a little juice. except for oranges and some tropical fruit im allergic to almost any fruit i have available to me, so juice from concentrate is my best source of citric acid and asorbic acid. theres also the fact that most mornings i am nauseous and juice of one kind or another is all that will get me through. also i cant keep food down if i dont drink something with sugar in it first, most of the time. my stomach prodces way too much acid and if i dont drink something with sugar in it at some point each day i get really really sick from the acid builup. it also settles my stomach when i need to eat in the evening. there is no substitute ive been able to find.
I was not advocating a plant based diet, only a product which can be added to juice or water to help digestion and help combat transit issues and absorbtion.
I find it very useful. Nevertheless, you appear to have many dietary and gastrointestinal issues. Perhaps these need to be worked out first with a doctor and dietician. I think you mentioned that a dietician could be expensive but maybe it would be cost effective in your case to get professional advice.
Has anyone read about amino acid(BCAA- branch change amino acid 4 grams a day)that people doing workouts take? It is protein in a simple form. Much easier for your liver to turn into muscle the fat you have. Omega 9 extra virgin olive oil 2 tablespoons a day. fattyliverfoundatio.org/fa
I would aim to get your BMI below 35 then 30 then reduce until you are at a healthy BMI for your age, height and weight. I have included a link to a free BMI calculator.
No it’s not optimal, however, it is the tool that most doctors use to assess our risk status whether we like it or not.
My BMI is 34.5 yet I am a size 16 in the UK probably 14 US size which is overweight but not the severe obesity category 2 that the BMI tool places me in. The next step up is morbid obesity!
Yes I am fat, however, I also have lymph oedema and pitting oedema due to cardiac diastolic dysfunction . These situations are not taken into consideration in the measurements. I don’t let it bother me anymore. Nor do I react when a doctor tells me -you are obese- ... yes, I do have mirrors, no this does not come as a shock to me.
Anyway, I am not fat, I am just too small (157cm).
I was just diagnosed with Nash yesterday! Phone call from a nurse . We got you results back and you have Nash! That was about it! Ben up all night and day reading up on it with Lots of anxiety!
Sorry to hear that Davy67 , however you’ve started off on the right foot by educating yourself. Unfortunately, we need to become our own experts.
I suggest you make an appointment with your doctor and ask for a referal to a hepatologist. Don’t be surprised if your request is denied, I haven’t managed to see one yet but it doesn’t stop me asking. The next thing I suggest is asking for a fibroscan, that will tell you if you have any fibrosis. If you haven‘t, you have a good chance of reversing this disease with lifestyle changes. Try to eat a healthy diet, in particular reduce sugars, saturated fats and weight if you need to. Try to do exercises if possible and eliminate alcohol if that is an issue for you?
If your doctor thinks you’re trying, you’re more likely to find they will help you.
I had a list from my doctor. Sleep apnea, vitamin D deficiency, NASH and too much iron in my liver. I see a liver specialist. Had sleep study and received cpap machine. In one year got my iron levels normal but want to go lower. Taking enough but d3. Lost 70 pounds working on 20 more to lose.
Very well. Cpap is great. 100% compliant. So listen I am so bad but was really upset about Iron issue. Have two defective genes for hemocrematosis. Yes they did my DNA. So they said give blood but my issue was NASH. So a friend was detoxing (I think our bodies do it natural so I really never did it unless I was sick) so she was using bentonite clay. I didbitbfor a week three times that year got my blood that was 335 down 100 points to 230! In one year! That is life time but I can deal with it. Now only thing is NASH. My cousin who is 4 years older than me had an episode he started bleeding means he is in 4th stage has cirossis of the liver he needs a transplant.
I'm lucky to be alive. Almost not born. At three spinal meningitis (allergy to penicillin) then three bouts of pneumonia two times temps 106 from the pneumonia. So they decide to take out my toncils! Back in hospital hemorraging! All of this later on lost 1/2 Of my blood going through the change. So with each issue I try my best! Just one more mountain!
That’s a great idea, you have such a complicated history, it’s really difficult to advise you. Perhaps someone will come along with a similar health issue trajectory to you and be able to share experience.
I am resilient always have been. Just keep fighting. Did you see my comment about omega 9 extra virgin oil oil? Also BCAA -branch change amino acid to help change fat to muscle may help you lose weight.
CPAP has made such a difference to my quality of life, I wouldn’t swap this wee machine for all the tea in China:-), I am glad to hear that you are benefiting too.
Having Haemochromatosis and NASH is complicating but your liver specialist should be the one to guide you.
Sorry to hear about your cousin. My sister-in-law’s family have many members with haemochromotosis and others are carriers. However two of her aunts are in their 80‘s and one is an incredible 77 years, a tea total survivor of breast cancer and a liver transplant. They are such an inspirational family.
They tell me that they have reduced red meat intake, avoid shell fish and raw sea food, drink high Tanin tea, supplement vitamin C and eat plenty of fruit and vegetables . You probably know this already.
Yes I read you are in Germany. One of the things I want to do is travel. I will be going to doctors soon get checked again. See what is going on. Remember sugar feeds cancer. Get your body out of acid readings cancer can grow in it.
Had my blood tested I'm on the low side for liver enzymes. I'm so happy but now have diabetes. Dealing with issues as I go along. Taking turmeric, vitamin e, omega 3 oil. Vitamins without iron. Stopped eating beef. Taking 2 tablespoons of extra virgin olive oil. Most want to get liver healthy then thyroid I hope gets healthy. Drink lemon water 2 cups in the morning. That way I stay alkaline.
It was same case with me... doctors just causally told me about 'Nash'..when asked about treatment they advised me to lose weight...(as if I was not trying for it all these days)
Worst part is that they advised me to consume more fruits and i religiously followed the advise for next 5 yrs..
Till situation became worst... till my all parameters gone worst ...Hba1c 13+..and then I took things in my own hands...
Now I have lost 28 Kgs...keeping Hba1c below 6. for last one year without any medication...My last MRI scan indicates for mild fatty liver.
Cholesterol is just fantastic...Bp normal..
I do not touch any fruits... consuming lots of saturated fats.. and low carb..(below 90 gms per day)
The same here! I haven"t even had a friboscan! I also have Liver tumors (beign) Due for an Mri scan & I rang coz I haven"t had an appoitment & am told I have to wait another month! That makes it over a year since the last one! Was not happy! I don"t even get a appoitment with liver dr to talk though the results! I get a copy of them! Like I understand all the medical words! I end up looking on the net to find out what they mean!I have to ask my Gp to talk me thought them! Which they don"t mind, but it is not there job & they don"t even understand some of it, fair enough coz they are Gps NOT liver drs! I also have amemia & can"t take oral iron as it makes me ill! so I have infustions, I am tried of expaining this to my liver dr! He should know that! He never seem to want me have them!
How are you going with dealing with your liver issues now? Unfortuately, most doctors have no real understanding of what is going on with NAFLD and like most diseases, if there is no pharmaceuticals to use, they don’t know what to do. Their training is based around the use of drugs and treating the symptoms and not getting to the root cause of the disease. NAFLD requires some very specific changes in several aspects of life. You have to ask the question as to why most people are not helped adequately to reverse this condition, as it can be reversed. There are many different reasons why this is the case. If interested, i can go into them
For the past 20 years I have been sent for gallbladder scans at least 7-8 times because of upper right quadrant pain. Each time it came back negative for gallbladder, but was told by several different doctors that I had a fatty liver. No one ever mentioned anything could be done or that if something wasn’t done I could end up with cirrhosis, which I now have. I did however lose 100 pounds over a 3-4 year period and have kept it off. All was well until last December when I was diagnosed with cirrhosis secondary to NASH. I’m frustrated that my physicians were not educated about NASH. I feel like I didn’t need to be at this stage,with no turning back. I’m also frustrated that I didn’t do the research I should have done on my own. My mom had a fatty liver, my siblings have fatty livers. I just assumed it was hereditary and fairly harmless. 🙁
Congratulations on losing the excess weight ... well done!
It will still help to make you feel better with your current unfortunate diagnosis.
I really am so sorry to hear about the cirrhosis, it must be a very worrying time for you and your family . I will keep my fingers crossed for you that a donor liver comes your way.
Would love to know how are you feeling these days. It so sad to hear how doctors just brushing off liver problems. They definitely needed to be educated.
I have an appointment with the Endocrinolgist on Thursday. The gastroenterologist was supposed to be sending me an appointment for August but so far nothing?My biggest issue is the bloating. My abdomen is enormous. It affects my breathing and mobility. I can’t bend down and it is so uncomfortable. The endo blame gastro and gastro blames Endocrinolgist. Meanwhile I roam around like a beached whale
My last fibroscan was stage 1 fibrosis, I was stage 2 however, different hospital, different equipment and scan was done by a technician and interpreter by a doctor learning to specialise in gastro. Therefore, I am unsure about the accuracy as the scan before that was done by a professor of radiology.
I have to laugh when the doctors say ‘there are no painful or debilitating symptoms with liver disease until the final stages’! They should try having it fir a few weeks.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
however, you have a great attitude; take it on the chin and get on with it; what else can you do
Stoping NASH/ Fatty Liver before Cirrhosis.
Recently Diagnosed With Fatty Liver 
Update on recent Fatty Liver 
