NASH....What the heck is going on? Can someone please help explain all of this to me?

Hi Everyone,

I hope you are enjoying the holidays! I have been posting questions as my tests have changed, because I can't seem to get any solid answers from my doctors. I apologize in advance if you have read one of my crazy emails, but I am so scared and just can't seem to get any solid answers.

Long story...attempting to make it short. I was admitted to the hospital after falling down the stairs and hitting my head on February 8th of this year (2014). Had a concussion/traumatic brain injury that we have dealt with and are still dealing with. All of my blood tests came back normal, with the exception of my AST and ALT. I'm just going to write this down chronologically, because I think you'll be able to follow this easier. Prior to this, I have never had any enzymes that were high.

January 24th Was put on a drug called perphenazine for anxiety

February 8th AST 58 ALT 72

February 27th AST 63 ALT 108

March 5th Immediately stopped taking the perphenazine after doc tells me it can be toxic to liver

March 5th Liver Ultrasound Moderate to severe fatty infiltration of liver, all other findings unremarkable

March 5th Doctor told me I had NASH, based on high liver enzymes and fat found upon ultrasound

March 6th Freaked out for most of the day.... :o) (Generalized Anxiety Disorder will do that to ya!)

March 7th Got off my fat fanny (was weighing 190 at 5 feet 5 inches) and started exercising/eating right

April 21st AST 37 ALT 59 (According to my lab, AST now normal, ALT 3 points over limit)

July 21st AST 33 ALT 33 (Now both within range according to lab my doc uses)

November 6th AST 21 ALT 24

November 6th Have lost 60 pounds and now weigh 130lbs. BMI 21.6. YAY!!!

Will probably have another liver scan in March. Still eating healthy and walking an hour in the morning and one at night. Did take a 6 week hiatus from walking a couple of months ago because the weather was so yucky. Now I have a treadmill, so I won't be able to use that excuse anymore! :o)

So, given all of this information, my doctor (PCP) and my gastroenterologist are both saying that I might have never had NASH in the first place but that they aren't sure. They've said my enzymes could have been up due to liver toxicity resulting from the perphenzine and came down due to stopping the medication. They've also said that it could be that my enzymes have come down from my diet and exercise (or as I like to call it....my lifestyle change).

So, at this point, NOBODY will do a biopsy....not that I want one, but I have one small, minor question. DO I HAVE NASH OR NOT????????? I feel good, have a great appetite, confess that I take a nap during the day as my new anxiety medication makes me sleepy. I don't have diabetes, in fact, glucose levels had gotten to about 110 which was heading in that direction when I was at my heaviest. My glucose was last checked in July and was 101 and continuing to come down. One of the side effects of the medication I stopped taking was high glucose levels. I have low to normal blood pressure and take pravastatin due to high cholesterol. It is now well under limits. High cholesterol runs in my family.

I am so confused. I thank you all for putting up with a nut like me. I am a 43 year old married female with two feisty teenage girls. I want to see them go to college, graduate from college, get married, have their own children and MOST IMPORTANTLY, watch them suffer as their teenagers drive them completely bananas!!! (I know that my mom is really enjoying watching me right now with my sassy girls, as I was a TERRIBLE teen)!!

Any ideas? Is there a way to know if your NASH has been reversed besides biopsy? Because obviously they won't do one. In the same token, is there any way to know if it is still progressing? I have read so many scary stories of people being fine one day, and then being in the ER the next, finding out that they have NASH related cirrhosis. I don't want to be that person.

Thank you all for your patience with a crazy girl filled with anxiety. I really do appreciate it and thank God that this board is here. God bless you all!

Robin the Anxious Nut

22 Replies

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  • The doctors obviously haven't calmed you enough. But its seems they don't even know themselves, they probably wont unless they do a biopsy, which it is a good sign that they don't want to do it. Nobody here will be able to answer your question really, we aren't doctors. But I think if you just keep doing what your doing you can stop the spread of anything sinister, it looks like your may have to just keep getting the tests and monitor the situation, not an easy way to live life, but its the only way.

  • Hi,

    Might be worth going along to the next liver Trust roadshow(details on their website) & having a fibroscan done. This measures the rigidity of the liver and is an indication of the degree of fibrosis of the liver. It may set your mind at rest.

  • Hi Dorset.. Have the roadshow dates been posted? I must have missed this. They said they are changing the format if it next year. Than thanks

  • I'd say from reading that that you have a lot to be optimistic about.

    You had two lots of results that were a bit high but following a change of diet and adding exercise they went back down to normal range - which is what you would hope to see if you're dealing correctly with your diet in respect of fatty liver or even NASH .

    The enzymes indicate cell breakdown in the liver and internal organs. That's a process that's always happening as part of everyday life, so those numbers never hit zero. Part of everyday life is also events affecting those organs, in the case of the liver, it can be toxins or medications or anything which cause some increase in the enzymes. If that event is fleeting then the process of regeneration will regenerate those cells. If the thing affecting the liver is chronic then the liver will not be able to keep up with the process of regenerating.

    In your case, the enzymes could have been a result of the NASH or the drugs, it's not all easy to know. You may well have had incipient NASH underlying (without raising enzyme levels yet) but it was the drug that raised the enzyme level.

    Either way, you've dealt with both possibilities as well as you can, you've stopped taking the drug which may have elevated the enzymes and you've started to eat better and exercise - which gives you the best possibility of preventing fat infiltration of the liver. You'll want to discuss with your doctors what the best way of monitoring is, but if it was me I'd want to keep an eye on blood results for a while and ensure they stay in the normal range and then get on with my life.

    Best wishes.

  • I would ask to be referred to a specialist in a liver transplant unit. I believe there are 5 such units in England London,Southampton, Birmingham, Leeds, Newcastle. I went to St James hospital unit in Leeds and they were excellent.

  • Why a transplant unit 'ancient'? That sounds a bit drastic when sillygirl just has a couple of liver enzymes elevated which seem to be improving!

  • Thanks, Bolly. I was freaking out when I read that too. In fact, my enzymes are totally back to normal. AST 21 and ALT 24. Does this mean that my NASH has been reversed? Can you still have NASH if you have no fat in your liver? My scan will tell me soon enough about the fat in my liver. I did have to take off about 6 weeks of walking because of bad weather, but now have a tread mill so am back to exercising daily. Also, occasionally I have a sugar craving. I do so well all the other time, that I'll give in and have some cookies or an ice-cream bar. Does fat return in your liver that fast? I've not gained any weight back and am still exercising and eating well at all other times. Just curious, since you have so much knowledge on NASH. I read somewhere that low/normal enzymes were a sign that it was not progressing, but rather getting ready. Do you have any knowledge of this? Thanks for encouraging me on the last comment. It hit me by surprise and scared me to death, which is not good for a girl with Generalized Anxiety Disorder and Panic Attacks! I still think that with the timing of everything, it was a medication reaction. Otherwise, I fell at EXACTLY the same time that my enzymes were starting to come up and within a few months of exercising and losing weight, got them down to normal, even though I was diagnosed with moderate to severe fat in my liver. Does it really go away that quickly? Take care and happy holidays! Robin

  • In reading about Ancient, he doesn't have NASH. Maybe he misunderstood my question when he gave his opinion. No worries. His answer just scared me really badly. I was just so excited that my enzymes are so low and normal. I was under the impression that I had the ability to reverse my NASH. I just don't know how to know if that's been done or not. Thanks to both of you for following up with me!

    Robin

  • Hi Robin. Sounds like you are doing all the right things to improve your health. Some types of liver disease are impossible to cure, such as autoimmune variants, but some types, like NASH or alcoholic liver disease are more what might be generally termed 'lifestyle', in that by improving your lifestyle you can return your body (and your liver) to better health. As you have discovered medications are also toxic to the liver, some worse than others, so the more meds we can live without the better. Perhaps you could undergo talking therapy for your anxiety rather than tablets. I would carry on with your good intentions and enjoy Christmas - allow yourself a few 'naughty' foods and a small amount of alcohol if you like, just try not to go overboard over the festive period. A hepatologist would tell you that first your overall health will feel better, then your bloods will return to normal, and lastly your liver tissue will improve. This can take many months, after all it probably took months if not years to put on the extra weight/fat, so it will take months to lose it from within your body tissue. But good luck and keep going. Ancient tends to tell everyone they might need a transplant if they don't remove the cause of their liver damage, which is not wrong, but each case is different and in my view a local hepatologist will be just fine to check your scan in March and perhaps bloods again in another 9-12 months from now just to reassure you.

  • Thanks, Bolly! I was really scared when I read Ancient's post. I think I've done enough splurging! I haven't been exercising as much as usual and have eaten way too many cookies. I got on the scale today and have gained 5 pounds. That scared me to death, so I am back on my strict diet/exercise lifestyle starting asap. Do you think I could have caused any major damage during my 6 week fling, like scarring? I don't know how fast these things happen. I am a recovering alcoholic.....sober for 8 years, so just cookie naughtiness, nothing else like any alcohol, but not exercising as much as usual. In between the cookies, I have had TONS of fruits, vegies, nuts, fish, and everything else that goes along with my regular diet. Yikes, cookies should be outlawed!!!!! :o) Robin

  • Hi Silly - you say you are really anxious about your liver health, but it seems the level of anxiety either drives you to the cookies or isnt enough to stop you from eating them in excess! I think maybe if a person has addiction tendencies its a personality thing and difficult to change, thats why I suggest maybe some talking therapy to see why you have had trouble in the past with either drink or diet issues. All the best for 2015

  • Hey Bolly,

    I always appreciate your honest responses. As I was posting this, I was literally thinking.....is it really worth eating a few cookies at night if it is going to make you worry and feel guilty about it for a few days following? My answer to myself was no, absolutely not. SO, no cookies since my post. I've gotten back into a very regular exercise routine and am now eating even healthier than I was before. You are right...I do have an addictive personality. I've never seen my weight as an addiction, but your post actually has changed my mind. The reason I gained so much weight, was because I had no control over my eating. The same went for my drinking, before I quit cold turkey, almost 8 years ago. SO.....feeling a little less anxious now that I can honestly say that I'm not sabotaging myself and my anxiety level is slowly going down. Thank you again for all of your kind, informative and introspective responses. People like you keep me in check....and trust me, this crazy lady needs all the help she can get! I hope you've had a wonderful holiday season and have a blessed beginning to 2015. Take care and I'm sure I'll harass you again on another day soon.

    Robin :o)

  • Lol relax girl.i've read a ton of liver disease info about Nash and alcoholic liver disease. From April to November your ast and alt levels were normal so that means you have no ongoing inflammation which in Nash case means fatty infiltration of liver.the fact that other(true)LfT were normal means their is no liver damage.when the liver gets inflamated the AlT will rise immediately. This is normal with fatty liver but not ominous. true LFT such as INR,bilirubin and albumin indicate liver damage if above normal which is not in your case.the more weight you lose the lower your liver enzymes will be coz when you lose fat it comes off everywhere including liver.between April and November you had consistently normal values so you have nothing to worry about. General advice for healthy liver is low alcohol,reduce carbs such as potatoes,rice,flour products and pasta. More fish and fruits and veggies.also exercise moderately by walking or light jogging as much as you can. You're fine. I have liver issues too and I panick so I know what you're going through. Based on what I read you have nothing to worry about even if the meds.i feel very confident in what I'm saying. Trust me I've read more on the subject than most people read in 20 yrs.

  • Thank you so much for the comforting email, stupidliver. Even though my April ALT was three points over the limit (59 with normal high range being 56), are you referring to those numbers as normal? I also realized that I mistyped my July alt. It was 51 and not 33. Still in range, so yes, if we consider the alt of three points high in April, as normal, everything has been good since April 21st. And yes, all other liver counts/platelet counts have always been totally normal. Does any of this additional information change your opinion on me being in good shape? Please let me know your opinion. I'm so sorry that you deal with liver issues as well. However, I am glad that you use your knowledge and experience to encourage and inform people like me. Thank you so much! Robin

  • Hi Robin. Glad you wrote back.i've re-read your posts and responses and my opinion is still the same. I'm very confident on that. One response you had from"ancient" just blew my mind.he's either a cruel prankster or utterly ignorant on the subject.your enzymatic marker elevations were mild to begin with but warranted further investigation. You got that by blood work follow up and an US. What would concern me here is the US showing " moderate to severe fatty infiltration" which makes sense due to your weight. What's causing your enzymes to be elevated is inflammation due to fat globules crowding out the hepatocytes. Meds may or may not have aggravated it. Your other liver function tests came back normal which is the most important.AST and especially AlT are like markers that indicate inflammation activity but LFT's such as PTT,INR, bilirubin and albumin tell you how the liver is actually working. Doc told me the best prognostic indicator is INR which is the time it takes your blood to clot. The liver synthesizes many things including clotting proteins and if your liver is damaged due to cirrhosis then the clotting time will be increased.the doctor has told you these are all in normal range.that's a big sigh of relief but the crown jewel is that after exercise and dropping weight your enzymes steadily went down.In April and July your ALT was still on the high side of normal. Not a big deal as you had a lot of fat to burn.then in nov your enzymes are just perfect.They indicate zero inflammation.i'm very confident your next US will show much less fatty liver probably around the " mild "range.what convinces me you have no permanent damage is the LFT were all normal and your enzymes showed a bumpy but steady decrease to the point of perfect. I know more about alcoholic liver disease but it's very related,AlD being worse.The doctors won't do a biopsy because they don't see the need. They don't consider you in the danger zone at all anymore. The biggest cause of NASH is obesity. Risk and associated factors are diabetes, high cholesterol and triglycerides, metabolic syndrome and drugs or toxic agents. In your case it appears to be excess weight.keep it down. Nash is benign most of the time but in a small percentage it can lead to cirrhosis. You don't want that. Try not to let your liver get to the "severe fatty Infiltration stage". By all accounts your doing fantastic and your liver is smiling. It hasn't felt so free in a very long time I'm guessing.liver disease is challenging to diagnose even for specialists, very difficult. It's a combination of looking at all the data and ruling out other causes. I always ask for a printout of my blood work and study almost everything.ggt,alt,ast,alp and so on.for example, if your ggt is high then your doctor will know that you've been drinking of late.if your ast is high but alt normal then you have likely muscle injury.if your alkaline phosphatase(ALP) is high then something is causing bile obstruction.your totally fine now but you did have some inflammation in your liver probably caused by fatty infiltration. Whatever the cause you are good now and your liver is no worse for wear.i'm somewhat surprised your liver counts were normal back years ago when I'm assuming you were on the heavy end.right now your liver is good to excellent.do a bit of treadmill work most days of the week. Walk your dog. If you don't have one get one.scale back on fatty and high carb foods.avoid booze especially binging. Your fine,worrying yourself for little to nothing. I know I'm exactly the same.

  • Stupidliver,

    You are awesome! I love the way you lay out your knowledge so that I can understand it and also, the way you are so personable and witty while sharing. I am continuing to work on this, as I know that my doctor said it will probably take my moderate to severe fatty infiltration of the liver condition awhile to go down.

    I really did freak myself out when I got off track for a couple of months and ate several foods that definitely had bad ingredients such as fructose high fructose corn syrup. I then realized that the cookies and crackers I'd eaten had WAY less HFCS that even 1 single soft drink. I figured that we all get at least some fructose in our day to day diet, especially since it is in so many things. I think the main idea is to limit it. My anxiety tells me that because I ate some HFCS daily for a couple of months, in the form of processed cookies and crackers, that I've caused my NASH to rev back up, that my enzymes are back up and that fibrosis has started. I fear that this will change my liver Ultrasound results in March. You see, that's where my anxiety takes me.

    Yes, I live on my treadmill during the winter months. (In the summer, I LOVE to walk outside in the mornings before it gets too hot. This might sound gross, but when I can feel the sweat dripping down my stomach, I imagine that on the right side, it's fat and toxins coming from my liver. I've been trying to do 45 mins. to an hour, once in the morning and once in the afternoon. So, getting ABOUT 1 1/2 hour of pretty vigorous walking four or five days a week. On the other days, I might just do 30. I eat TONS of fruit...lots of berries and citrus, drink a lot of green tea that has ginger added into it, lots of green spinach/kale salads with vinegarette dressings that have low sugar and no HFCS. Almonds and walnuts are my friends. I love almonds. And I will tell you that my husband and I were laughing so hard the other night when we counted the number of water bottles I'd drank that day. And that didn't include the times I refilled them before getting a new one. Lots of turmeric, garlic and ginger goes onto my food, with very little salt. TONS of fish. Greek yogurt (plain) with berries, oats and Stevia added, oatmeal with cinnamon, brown rice, and then there's that 2 month cookie/cracker binge, despite eating a very healthy diet otherwise even as I was eating lots of cookies and crackers at night.

    I take a daily vitamin and also, fish oil three times a day and milk thistle, that contains dandelion root and licorice, three times a day. I really think these supplements have helped along the way. I do have to take medication for my cholesterol, which is perfect right now, along with an anti-anxiety related SSRI, a small amt. of Xanax each day, gabatril and Ambien prescribed for me to go to sleep. I have cut the gabatril and Xanax and so, my hope is to one day, get off of these medications completely. My psychiatrist is VERY careful with what she prescribes, knowing that the medication she gave me is likely what added to the damage. Within 7 weeks of removing it from my system, my enzymes were down to a normal level. I think that's pretty amazing! Having been depressed for much of 2013, along with a medication with a MAJOR side effect of gaining weight, that's exactly when the weight poured on. I've really been a pretty average weighted person, until the last year or so. That's another reason we were looking so hard at the medication, the pattern on enzyme elevation onset and return to regularity. My theory is that I DEFINITELY had/have a HUGE amt. of fat in my liver from being overweight, but that the medication is what I actually reacted to and what caused my enzymes to slowly start to rise, 2 weeks after I started taking it. The pattern is so clear.

    The question that still plagues me, and I will probably never know, is do I have NASH or just NAFLD? In keeping with a healthy diet and exercise, will I live a normal life span and is there anything else that I could be doing to keep those numbers down.

    By the way, stupidliver, what kinds of liver issues to you have? How long have you been dealing with them? Where have you gotten your wonderful wealth of knowledge of liver disease? You are such a jewel and I hate that you struggle as well.

    I SO appreciate you, so know that you've made a huge difference in comforting one very scared lady. If you eve

    NO alcohol since 2007, no sugary soft drinks since this started.

    With regards to when my enzymes elevated, the medication I was talk want to vent about YOUR issues, just say the word. That is certainly what you've done for me and I am very grateful.

    Thank you again!

    Robin

  • Hi again.Sorry I've been lazy to reply.your question about wanting to know wether you have NASH or NAFLD is impossible to answer unless they do a biopsy and get a positive.For sure you have NAFLD.This simply means you have a fatty liver with some inflammation(hepatitis).NASH is when that inflammation has caused damage.The important question here is;"is the damage permanent"? The initial reaction to fat on the liver is inflammation activity.If the causative agent is not removed and there is a continuous assault on the liver for usually a prolonged time then scarring begins to set in.This is something you want to avoid.Earliest stage scarring(fibrosis)may dissolve if the offending cause is removed.A tiny bit of fibrosis is not life threatening at all.You will still have normal health and life span.However if fibrosis progresses in stages and accumulates then after f3 you have borderline Cirrhosis with f4 being decompensated cirrhosis.It's downhill from there.So if you do have NASH I do believe it's reversible.I don't believe you have any significant fibrosis if any at all because your elevations were very low and short lived.Furthermore,your ALT and AST came back down to normal values and more importantly all your function tests were normal so that tells me your liver is working well.If you had abnormal liver counts for a long period of time then I would be more suspicious of fibrosis.Duration of elevations is very important in liver disease.Most people don't know this but if your liver panel tests show all levels are normal,you still may have significant liver disease.Actually patients with end stage liver disease(cirrhosis)in the decompensated stage will have very low elevated enzyme counts.This is because if,lets say 75% of the liver has died,there are only 25% of the liver cells remaining and so only those 25% are being injured and releasing AST and ALT through damaged membranes into the bloodstream.Your liver enzyme counts would then be low not because your healthy but because most of your liver is fried already.This usually only happens after years of liver disease which is not your case.

    Do you have NASH? If they mean cell damage but not cell death then yes you do.Damaged cells repair themselves.I've been to several doctors and 2 gastrointerologists and they can't answer anything specifically.They mostly tell me different things so I've been forced to do research and let me tell you I have.From your labs and history I believe you are fine.Certainly no life shortening situation.There is a lot of grey area in liver disease.Unless there are the obvious tell tale signs such as ascites,spider angiomas,jaundice,anorexia and positive imaging scans then only a biopsy with a positive result can confirm.Otherwise doctors are left to take an educated guess based on the pattern of information from the labs and the physical.

    My story is elevated ALT and FERRITIN aswell as "mild fatty liver "on US.I've been a somewhat heavy drinker for 20 yrs.My ALT has only risen(as high as 90)after being on the anti depressant Remeron RD.This medication makes me hungry so I eat more and went from 140lbs to 160lbs.I'm only 5"5.when I decrease the meds my weight goes down and so do the enzymes counts.when I stopped the meds I lost weight and my enzymes went to normal.Then I went back on the meds and my weight goes back up and so do the enzymes.Obvious pattern there.When I raised this issue to the specialist he said I solved the problem for them.The meds are not toxic to the liver directly but their side effect of weight gain is putting fat on my liver and raising my ALT.Aside from high Ferritin(iron)everything else is normal including LFT's which is so important.I was tested for hemochromatosis (iron overload) and came back negative.Doctor says the injured liver cells release ferritin along with ALT and that accounts for my high Ferritin.I have some doubt about this and would like to see a hemotolagist.One doctor will say I can have the occasional one or two and others say don't dare touch it.Some say it's the alcohol and others say it's the weight gain and sometimes they say it's both.It's so hard to get concrete answer.I've read countless info and seen many videos from credible sources so I feel I know quite a lot.I've been on this journey for 1 1/2 yrs.I've been told I probably have early Cirrhosis to "your normal there is nothing wrong with you",other than a fatty liver ofcourse.It's so frustrating because I still don't have the answers.Have you ever had a fibroscan?It takes 5 minutes and is completely painless.It's new technology that measures liver stiffness.Normal is between 1.5 to 5.9 for a heathy person.Last year I was 3.6 which is a great score.2 weeks ago I scored 5.8 which is borderline mild fibrosis.The gastroenterologist told me that's a normal score but I don't like the upward trend.If you want to know how to interpret lab results then you should go to your doctor and ask him to give you a copy of your labwork for liver panel then Google:"liver tests:use and interpretation".It's a training session put on by Dr Rebecca Vandyke who is head of gastroenterology in the university of Michigan.She is teaching medical students on how to interpret bloodtest results.She discusses,ALT,AST,bilirubin,prothrombin time,INR(clotting time),albumin and all the rest of it.I've learned so much from her.The uploader is "openmichigan" and if you go on their and keep scrolling down for awhile you will see more video presentations on the subject by Dr Vandyke.She is a wealth of information.I suggest you listen to her.I've also seen many others but for now check those out.She didn't talk about NASH but gives you insight on what enzyme elevations suggest is going on in the liver.Injury is injury wether it's caused by alcohol,Hepatitis A,B or C,fatty liver and so on.The end result of all liver disease is cirrhosis.It's scary stuff but I think we'll both be fine.I do however,feel more optimistic about you by a country mile.

  • Stupidliver, your posts very enlightening and useful. I have high ggt due too much beers at sea years ago, but after a 4 day holiday recently mine spiked hi. I've decided on a yr of no alcohol and another lft session. My recent ast was higher after a month of abstinence but I have started my weight training again and wondering if it's that showing the hi ast ad I've felt sore this last week.

  • Hi there!

    Look who was the lazy one to respond this time??? So sorry, I had the joy of taking one of my teenage daughters shopping today for HOURS. OH, I am so tired!!! She picked out some of the ugliest things I've ever seen, but I figure that as long as the clothes are modest and cover her body, along with being congruent with her school dress code, then she can wear what she wants. It's so hard to keep my mouth closed sometimes!

    Stupidliver (I hate calling you that.....I feel like it's an insult to you, personally!), we have much more in common than I realized. I will share with you what I know.....which is not nearly as much as you do, but maybe you'll get at least a little information that you haven't heard before.

    I am a recovering alcoholic. I drank hard and heavy for about 12 years, and smoked like a crazy woman for 20 years. I quit drinking cold turkey on December 31st, 2010, along with my husband. Tomorrow is our four year anniversary. YAY!!! I drank a ton, for about 12 years, (minus my two pregnancies) and I mean hard and heavy. When I quit drinking almost 8 years ago, I was SO scared to go to the doctor to see what damage I had done. Actually, the only things that were brought up by my doctor was my high cholesterol and my weight. Everything was A-Okay. Up until now, I have remained alcohol free and smoke free. I do take meds for my anxiety. (As you have noticed, this crazy lady needs them BADLY!!!)

    So interesting that you mentioned Hemochromatosis. We found out earlier this year that it runs on my Dad's side of the family. Ironically, he is a surgeon and refuses to get checked for the gene or his iron levels. Because hemochromatosis can cause so much damage before there are symptoms, I immediately got genetically tested....especially for the sake of my two girls. Luckily, I am totally negative....not even a carrier. I wish my aunt, uncle and young cousin were so lucky to have found out that they were positive long ago. My dad drinks a TON of alcohol, and I think that is why he is so afraid to get tested. I remember him telling me once that he'd found out that his cholesterol was high. He said, "I'd rather die of alcoholism, than have to stop drinking and take statins for the rest of my life." Anyways, we have no idea if he carries HH, but at least I know that I can't pass anything to my girls. Even if my husband is positive, which we have no reason to think he is, they would just be carriers and be at very little risk. Tells you how much my dad cares about me and all of my sisters. If he'd just have gotten tested, depending on his results, he potentially could have cleared all of us and prevented us from having to make the choice to get tested. It was well worth the $600 I paid for peace of mind, and to protect my girls.

    Unfortunately, both of my parents, three of my four grandparents, one of my biological sisters, one of my step-sisters, an aunt and an uncle on my mom's side of the family and an uncle on my dad's side of the family are alcoholics. My mom just went to rehab about 3 months ago, because she was caught drunk driving and my step-dad told her that is she didn't stop, he would leave her. So far, she has three months of sobriety from before she entered rehab and 1 there, and two since. So, six months down, so I am really hoping that things work out for her. My step-dad, who is a TOTAL jerk, has asked me to never mention alcoholism to my mom again. I agreed, as I already have a horrible relationship with him and don't want to cause any more trouble. Thus, my relationship with my mom is awful. Even when she was drinking, we always were in close touch and were in constant communication, despite living in different states. That's no longer the case.

    SO, I tell you all of that to let you know that I understand at least some of what you are going/have gone through. It's really hard. Please don't take this as a judgment, just a personal opinion. I hope you'll think really hard before taking a drink. For me, it would not only cause additional damage, but one is NEVER enough. I can't stop once I start, and I know that if I start drinking again, I'll die. My doctor even told me this, although ironically, my fatty liver (NAFLD) has absolutely nothing to do with my drinking. My doctor is positive of this. SO STRANGE!!!!!!!

    Have you ever had a liver biopsy to diagnose your exact liver condition? I wonder why you think that you are so much further along than I am. Can you share more about that with me? I just keep thinking for BOTH of us that our livers are the most resilient organs in our bodies! What are you doing to try to correct things? Just curious.....that wasn't meant to sound like a challenge. I just want you to know that I've eaten salmon, almonds and now oranges for dinner and I am SOOOOO hungry still, because I want carbs. I want crackers and cookies......but I'm NOT going to do it, as I don't want to struggle with the guilt tomorrow.

    I am also going off of another medication, slowly but surely, that I think will help with my liver issues. It's called gabatril and I think it could definitely help. It's actually an anti-seizure medication, but can be used for anxiety. I've learned to live without my anxiety medication in the daytime, but still need it (Xanax) and my sleeping medication (Ambien) to sleep at night. The only other prescription I take is Prevachol for high cholesterol which has been under control for several years now. I also take Luvox for my anxiety/depression....it's an SSRI. It might sound like lots of medication, but considering I was on 9 different prescriptions in February and am just about down to four less than a year later, I am pretty proud of myself. My Xanax is WAY down, by less than half, and that is the next one I want to get off of. But that will all be in time. Doc says I will always have to take anxiety medication, so we'll just see how it goes. :o)

    Do you take any medications? Thanks again for sharing so much information with me, and especially for opening up to me with regards to your personal information. No judgment whatsoever on this end! We are walking the same road together, trying to get better. Thanks for being such an encouragement to me!

    Hope to hear back from you soon!

    Robin

  • Oh, and one more thing. It seems to me that it could be quite possible that the Remeron is causing your enzymes to go up. I know it causes weight to go up which also raises enzymes, but I'm not so sure that you are not allergic to it, which would be what's causing the inflammation and raised ALT levels. We still think that although we KNOW I have NAFLD, that my enzymes went up in February due to starting Perphenzaine two weeks earlier. In 7 weeks, my labs were back down to normal, even though at the higher limit. I was told to NEVER go on that particular medication again, as it could cause severe liver damage if indeed was contributing to raised liver enzymes. So far, so good. Just a thought for you with the Remeron. One of my friends started taking it and although he felt TONS better, he gained a TON of weight. I don't know what is liver function is like, but he's probably gained close to 50 or 60 pounds over the last couple of years. Another one of those types of antianxiety drugs is called Respiradone. I was one it for quite awhile and we think that was the instigator of my intense weight gain. I have seen this happen to many others as well. (I see lots of this in AA, as so many people have duel diagnoses....meaning that they are alcoholic and also, struggle with another emotional condition.) Just a thought that you might want to run the "allergic reaction" idea by your doctor and see if you can try something else that doesn't cause the elevated enzymes and/or the weight gain. I'd be interested to see if they might be able to decipher if it's both the Remeron and/or the weight gain that is causing your ALT to bounce around.

    I have decided that we should go into private practice together....helping others with anxiety and questions regarding their liver issues! What a help to the community we could be.....or a scare to the community....you never know!

    Okay, I really am done running my mouth for tonight! Take care!

    Robin

  • Liver enzymes being high or low can't tell you if your NASH is improving, only a liver biopsy can do that. Even imaging like ultrasound, CT, and MRI can only show whether there is fat in the liver or not but can't accurately assess the level of fat present and can't distinguish between fat and fibrosis, hence the need for a biopsy. I have seen people with normal enzymes have severe NASH and others with high enzymes having NASH too, but in the early stages.

    Getting the enzymes down to normal range is definitely a good idea but more importantly, eating a healthy diet, exercising regularly, and keeping your BMI in the normal range (not overweight or obese) is the best plan. Losing weight too fast and especially jumping between dieting/exercising and not doing it, can actually make the liver disease worse.

    People can live a very long time with NASH and even early stages of cirrhosis so long as they strictly adhere to their healthy lifestyle.

    Stay in the "normal" BMI range, eat a healthy, lean diet, exercise regularly, and monitor your liver function tests regularly (at least every 6 minths).

    I would never pass up a liver biopsy opportunity if the docs approved you for one because as I said, that is the ONLY way to accurately determine if you have NAFLD vs. NASH vs. cirrhosis and what degree of the disease you have.

    NASH is just NAFLD with liver inflammation/hepatocyte damage. Most people who had high liver enzymes at the time of diagnosis are immediately diagnosed as having NASH because with NAFLD, there is no inflammation and therefore no elevated liver enzymes. Enzymes only go up when active liver damage is occurring.

    It can sometimes be reversed to a certain degree but typically it is just slowed or stopped from progressing further (ie: you can't heal scar tissue/fibrosis/cirrhosis.) There's no magic pill or treatment besides eating and living healthy so that's really all we can do. The rest is up to our individual bodies.

  • found your post when searching high ALT and concussion. I am healthy, but recently had concussion and still have concussion symptoms. All my blood tests for recent routine physical were normal like usual, except high ALT (74). So they had me retested. My head was a little better day of the retest and my ALT was still high but lower (61). I'm not concerned, but they're having me retested again for related problems. It is not scientific, but I'm guessing my concussion has something to do with this as they say something about rigorous exercise or muscle damage can lead to high ALT blood test. When my concussion symptoms are gone, maybe my ALT will be back to normal. I will try to remember to repost when that occurs.

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