New to the forum - sick and very frustrated with doctors :/ recovering drinker/sufferer from iron

Hi all,
I am a 28 year old male. Been drinking heavily for four years - before that, it was more of a weekend thing or occasional beer, maybe once or twice a week. With some periods of sobriety here and there, about a regular 2-6 drinks a night guy for the past two years. about 3 months ago, I started to feel really crummy after a weekend long party, so I quit. I felt better, and relapsed because of some really bad news I received. Felt crummy again, quit again. I also was diagnosed with hemochromatosis, so I absolutely plan on abstaining completely. I am now 25 days sober. Within a two month period, I have had two ultrasounds, one of which was reviewed by a hepatologist - both completely normal. When I quit, my bilirubin was high. That went down a week after, and further another week after to the point where all my bloodwork seems to have completely normalized.

I have a specialist, my GP, and three different ER docs all tell me that my liver is fine, and I've been given the full workup by many professionals - however it's almost a month and I still feel crappy. I feel dizzy, headachey, and have some neuropathy stuff going on. My anxiety is off the charts, and I go through periods where I just feel rotten. I read online that alcohol withdrawals SHOULD only last 3 days and after that I should feel fine. I don't. It's been 3 weeks and I still feel like a mess.

I went to the ER last night with really bad abdominal pain and general malaise/feeling unwell. They did a chest x-ray and abdominal CT Scan - found absolutely nothing. Bloodwork came back fine, as well. My question is - how elusive can liver disease be? Could I have alcoholic hepatitis or something similar? I'm terrified that I did permanent damage to my body, however my doctors are not finding anything. Could it be inflammation?

I hate the idea of my life being cut short at 28, as I have heard that can happen. Just would love some input, as I am completely obsessing over this and it's consuming my life now :(

Thanks for the welcome :)

I take no medications whatsoever. My diet kinda sucks (I don't eat a lot of protein) and I take some B vitamins and occasionally hemp oil for anxiety. I also drink coffee, as I hear that helps liver health.

I see a GP who worked in a liver ward, and an internist who specializes in hepatology/nephrology. My internist states that there is no clinical evidence of liver cirrhosis. He says that acute liver toxicity or alcoholic hepatitis is more possible, and suggests plebotomies to lower my iron (I have a disorder) as he states that will help my recovery. He basically stated that after quitting, the liver may become inflamed and that I need to give my body more than a month to recover from the damage I've done to it.

I have (yet another) ultrasound this Wednesday. None of my doctors will agree to a biopsy, stating insufficient cause. I'm just worried - I've read a lot of cases where things can be 'missed', and so many cases on this site where people just suddenly go into full-blown liver failure. I'm not even 30. I don't want to die!

The reason I am worried is because when I initially quit, I felt better for a week. Then I felt awful the next week. I feel alright today, was discharged 24 hours ago from the ER with a clean bill of health.

The consensus from all my doctors are 'abstain and it will get better' but I have a hard time trusting their opinions with all the anecdotal stories and info available on the internet. I just want to make sure that I'm not going to suddenly get way way worse and not have the help I need at the time. Not for me, but for my family and friends.

Thanks for your reply!

Perhaps you suffer from anxiety, depression and withdrawals.
You were abusing alcohol for some reason. Nourishing your brain with alcohol soaked blood, a bad diet and perhaps lack of exercise enhances anxiety / depression.
You are young. You are attempting to turn it around. Eat healthy, hit the gym, take up water sports, snowboarding, whatever. Enjoy your youth while you can and know that happiness comes from within.
I have a similar background. I had HCV for 30 plus years and recently wrapped up treatment to rid my body of the virus. With the virus gone I have a lot to be happy about, but anxiety is not permitting that to happen.
I am hoping that I eventually get to a good place where I am feeling well again. Perhaps I might see a psychologist for additional help. I think I know what I need to do, it's just a matter of getting off my lazy butt and doing something.
That's what's happening with me.
I hope it helps. Good luck.

Away...Hemachromatosis is a condition where toi much iron is stored in red blood cells. This condition can damage the liver and may be damaging yours. No one starts with end stage...they work up to it.

By your own admission you tell is you have been doing some drinking. Lots of folks do and plenty of them never get into trouble health wise. BUT. Some folks have a propensity to get cirrhosis. And they don't get it in one month. It is a gradual thing.

You have a condition known to damage livers and have been using a legal substance known in some cases to damage livers.

Dangerous combo.

The docs will recommend abstention life long..IT isn't with the risk in my book.

Hemachromatosis is tricky. It is more likely than other types of liver disease to have bleeds...where veins in the esophagus can build up the pressure and rupture causing a massive bleed. A bleed from the mouth is generally a 911 emergency for someone with your iron disorder. You can have a bleed in stomach or bowel bleed as well so any rectal bleed that doest resolve right away (not just heme roids blood on the t.p.) requires medical attention.


Phlebotomy is often the treatment.

Never take iron in your vitamin supplement!

This condition has genetic type and is seen down a li e of father's to sons. My partner was tested along the way but he had a transient type that was not famikial. It resolved and has not recurred.

We have not had any one here in recent years need a tp because of it. Would sure like to hear from others.

MamaLama

Obsessing on it isn't gonna help. I think Ledon's post summed it up nicely. Most of us who overindulge do it for a reason. You have to look within yourself to find that answer and move towards resolving it. Activity of any sort be it athletics or stimulating your mind, Keep yourself occupied in a healthy manner. If you allow yourself to be consumed by thoughts of negativity..... well, that's what the end result will be.

I remember being told by a wise long time sober person "It takes the length of time that you wasted trashing your body to return it to it's former healthy state." The body in that sentence includes your brain. Predominately people of your age walk away from these potential liver issues unscathed. I'd say you fit into that category. Your problems are likely from other currently unknown issues. Your body is gonna feel lousy without your dose of alcohol for as long as it craves it. There is no set amount of time you go through withdrawls. I would expect months over mere days at a minimum. I'm around six years (lost count) sober and the urge to fall back into the bottle is still there. The sickness of addiction has long gone physically but the mental factors exist.

I'm a alcoholic with advanced liver disease. I will go to my grave being a alcoholic regardless if I get a transplant. The minute you wake up and say one more drink, drug or etc. is gonna kill me, you'll finally understand "Once a addict always a addict". The only silver bullet to cure that disease is to acknowledge you aren't capable of controlling it. Then abstain. I'm not a AA guy, Not that there's anything wrong with AA. I'm not a social butterfly you might say so those things don't appeal to me. I tried it, I suggest you give it a try and at the least read the literature and practice it in your daily life. I guarantee your life will improve to some extent. You may stumble and fall a few times but tenacity is the key. Your body and your grandchildren will thank you for this decision one day.

Ziff

Oh, you got some very good advice here! We are all fortunate to have so many caring people with so many years of all sorts of liver issues.

I will throw in that I found out I had liver disease when I was 28. I have autoimmune hepatitis. Yada yada, I got actively ill and had to start treatment when I was thirty.

I tend to run towards anxiety, and I basically went through life for a solid three years actively fearing imminent death from my liver.

Finally, someone clued me in to the idea that a little bit of an SSRI might help, as well as getting therapy.

You seem very anxious - understandably so! Seeing a therapist and/or learning some sort of meditative practice may well result in you physically better.

Obviously, MD's are your first group in your health team. All you need now is a therapist, a trainer, a chef, and heck, throw in a housecleaner. Snort.

Peaceful dreams,
Susan

Thanks for that, Susan. I will try an SSRI.

David, I see three doctors - all three will not give me a biopsy. They flat out refuse.

Post Edited (TheThrowaway) : 8/3/2014 10:33:33 PM (GMT-6)

I am still trying to find a hepatologist who works for me. My one specialist declines a biopsy, stating that there is no clinical reason to perform one. My GP tried to refer me to another based on past bloodwork and imaging, but this one declined the consult.

Try making those changes to your diet that **David** talked about.

I would quit the iron pills as ML suggested, and I would also quit the hemp oil, so you can rule it out as a potential instigator.

Mae