Left in the dark

[mauschen]

Recently diagnosed with NASH via ultrasound.

My LFT's fluctuate but are normal at the moment. A recent ultrasound found my liver to be massive (correlating to my abdominal swelling) and I have mild bilateral lower limb oedeama with idiopathic lymphoedema in my left leg.

I have many risk factors BMI 37, labile hypertension with LV hypertrophy, controled hypercholesterolaemia, hypothyroidism, prediabetes with insulin resistance to name but a few.

The problem is that I have been told my liver is massive but no follow up. I asked my GP but he just said to loose weight. Similar to one of the other posts, my diet is good (however, was not always good- previous high sugar intake), I have never consumed alcohol, no processed foods, plenty of fresh fruit and veg, chicken and fish occasionally supplimented with chocolate i was a red meat lover but since January have cut this out and reduced my calorie intake to 1500. I attend a physician led cardiac gymnastic class once per week and walk a lot with my dog. Although despite my efforts, the weight is not moving although HbA1c reduced from 6.1 to 5.8, fasting blood glucose reduced from 119 to 108. I have been commenced on Metformin to optimise metabolism by my endocrinologist but other than that no help or further investigation for my liver, which I assume is whats making me very tired.

Interestingly, I am a frequent flyer and noticed that someone suggested a possible link.

What should I do? Push for a referal to a hepatologist, ask for a fibroscan or nothing until the LFT's are abnormal again?

Thanks!

[Bolly]

Common signs of hypothyroidism are tiredness and weight gain, with a history of hypothyroidism have you ever been advised that you should be able to normalise your weight with this condition? Unfortunately when we have multiple conditions with overlap symptoms, such as fatigue, its difficult to know which of the conditions is causing the symptom. Certainly weight loss should help your health, but its difficult to know how to achieve it. Even with a healthy diet, what are your portion sizes like and do you find you snack?

[mauschen in reply to Bolly]

Thanks Bolly, I replied to this post but I don't see it. Perhaps internet connection broke.

Anyway, no one has told me that loosing weight would be an issue for me, everyone just expects me to do it. I don't really snack between meals and my portion sizes are small. For example, 1 small breast of chicken stir fried in a small amount of olive oil with mediteranean vegetables. I really like potatoes but have cut them out since January. I don't eat, pasta or rice and the only dairy products I eat are butter and low fat cheese in small amounts. I drink about 2 litres of still water per day ( don't like other drinks e.g. Tea, coffee) but have occasional diet coke.

Recently I was in hospital for a cardio/pulmonary issue and the dietician told ne that I wasn't eating enough. It seems I can't win whatever I do

[Bolly]

I don't know anything about hypothyroidism except via Google, but it seems that your thyroid effects your metabolism, your heart, your body temperature etc. so a s,ow metabolism hardly needs any calories I guess and what you do eat may be stored as fat. It needs a nutritionist or someone with the same condition to explaining. However weight gain without eating much can also be fluid retention, might this be a possibility? Some meds such as steroids cause fat to be redistributed around the body so our tummies and faces etc often get fat. It's difficult to know what to suggest you have complex medical conditions. Maybe try a hypothyroid support forum or online organisation for sufferers?

[mauschen]

Complexity is my biggest problem Bolly.

My liver is big because of obesity, the insulin resistance and all the medications I take. I am obese because of hypothyroidism, oedema, and steroid use due to a mixed form of asthma. I need the medications to treat the labile hypertension and resultant heart disease, hyothyroidism and hypercholesterol (to mention a few). The problem is that each specialist only treats a part of me, no one looks at me as a whole person. Each doctor begins by reminding me that I am fat ...do they honestly believe that I have not noticed this fact and need reminded. I try my best but achieve little. Now I am being told that my liver is in a bad state but no one is doing anything about it. I am not sure what I should do because the Dr said there is nothing to do it will only get worse. Lose weight is the war cry but I can't, I really have tried. I wish someone would lock me up and feed me a mediteranean diet to see that for me the diet and exercise I do is not enough, medical conditions are also to blame.

People are quick to judge and doctors should know better but they are guilty too. For me walking around with a belly that makes me look like a pregnant elephant is no fun either, I want to be healthy and thin but I seem to have been dealt an unhealthy pack of genes

[Anne48]

Hi, not sure whether this will be helpful. Check out Dr Malcolm Kendrick's website. His posts are varied but he does discuss thyroid and heart disease and the replies and following discussions are very interesting. Certainly helped me re. Use of Statins. And yes I would push for referral to hepatologist and ask for Fibroscan. Anne

[mauschen in reply to Anne48]

Thank you Anne, I will follow up on your suggestions.

[mauschen in reply to Anne48]

Great website Anne, lots of interesting topics applicable to my situation, thanks for that tip.

Asked GP for referal to hepatologist/fibroscan etc., however I take Xarelto (blood thinner) so G P won't refer until After August when this medication stops. He says no point before that because a liver biopsy may be necessary and this can't be done until blood thinners have stopped due to high risk of bleeding. Although I read somewhere that biopsies are not common nowadays?

[Anne48 in reply to mauschen]

I think biopsies are seen as last resort nowadays, or to confirm findings. Fibroscan is non-invasive but overweight might be an issue in having it. I only had US scans, MRI and Fibroscan. Is seeing a hepatologist privately an option? More time to discuss condition and go through the medications you are on and how they affect liver.

Another interesting website - Zoe Harcombe, and a very good informative book is Low Carb, High Fat Food Revolution by Andreas Eenfeldt MD. I have been following low carb with moderate amounts of real fat for the last six months and transformation is remarkable, especially going gluten free. One consultant has written on my notes "she has made a phenomenal recovery!" You seem to be going the right way with the diet you mention.

I wish you well and do so hope you can find an answer to regaining a healthy liver. Anne X

[mauschen in reply to Anne48]

Thank you Anne48,

I have been thinking of this diet as an option but the internet is confusing over whether bread has to be completely removed from the diet or not. I will have a look at the book you suggest. I love bread of any kind and usually buy ones with pumkin or sesame seeds, although I do like white bread, since January, I have managed to reduce my intake. I only eat maximum two small rolls per day but would find this really hard to give up. It is my only pleasure

I could go privately to a hepatologist, however, a friend's experience of seeing a private consultant led to a lot of expensive unecessary tests. Not sure about this route?

[Bolly]

You must be thoroughly fed up Mauschen. Thats one of the problems with our NHS, its wonderful that its free but it has its limitations and one is the lack of communication between specialists and the lack of clinic time to consider a person holistically. The only time I have ever been treated holistically is in the alternative private sector, where they have the time and you pay for it!

I'm not sure you will benefit from more diagnostic tests that will again tell you your liver is enlarged or inflamed or whatever. What you evidently want is someone who can take the responsibility of telling you what to do about it!

I dont think anybody on this website will have the medical qualifications to be able to advise someone with as many different health problems as yourself. And its not just the health problems causing problems, its the medications to control the health problems that cause issues, and then the side effects of those medications etc etc.

Going back to your liver, as that is why you posted on this particular forum, have you been told that all the abnormality in your liver is fat or is it enlarged due to a combination of fat and inflammation from another cause?

[mauschen in reply to Bolly]

Hi Bolly,

I replied to this post days ago but I don't see it?

Anyway, inflammatory fatty liver disease has been diagnosed by ultrasound and also noted incidentally by lung CT.

All of my LFT's were raised ( more than double) initially, however this fluctuates and I can have a normal profile. Yeasterday, for example, only GGT was elevated 57 (from memory) which would indicate an inflammatory process is taking place, though not massive to mach the size of my liver. Nevertheless, I find this all confusing as the massive liver noted on ultrasound which is so large it obscures all other organs (except the pancreas to some extent because it is also swollen and fat) doesn't seem to correlate with the LFT's?

Insulin resistance seems to be getting tamed with the aggressive medication regime. My endocrine profile is impoving as is my renal function. I would guess that my liver problems are a combination of a bad diet in the past (high in sugar) which initiated a fatty liver which is further comprimised by insulin resistance and thyroid disease and resulting polypharmacies.

I think the endocrinologist rather than hepatologist seems to be my best bet to help me improve the liver situation. However, you are right communication between specialties would be the optimal goal but I don't think that's going to happen.

I feel as though I am managing the complexity of my multiple diagnosis alone. I alone check for posible medication interactions and how best to space out the medications for example some with food, some not, steroids for asthma not taken concurrently with the 80 mgs daily prednisolone I need to treat the inflammation in my spine (4 herniated discs, 3 protrusions with two nerve impingements, op indicated but not while on blood thinners), which seems to be having a positive knock on effect in my liver.

I have knowledge but I am not a doctor and sometimes I feel so unwell that I struggle to keep on top of this situation. I need one Dr who will coordinate all other specialties, one with sufficient knowledge to manage this complexity. Although I don't think the private route would be best for my situation.

[Bolly in reply to mauschen]

I heartily agree with managing your condition yourself to the best of your ability - being an expert patient seems to be the way to go. I dont think you would find one medic with an expert knowledge of everything you deal with, you are the only person experiencing the conditions, the drugs and the side effects of the drugs.

[mauschen in reply to Bolly]

Perhaps some expert will read my post and either help me or realise that there are more people like me in need of multidiagnostic and care management and initiate the most needed change in services ....dream on!

Thanks for the support Bolly.