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Is my mystery illness a liver problem?

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Posted 10/26/2015 10:32 PM (GMT 0)
First of all, hello everyone. I am new to the forum.

My problems started around late December. It all began as swollen lymph nodes in the neck and night sweats/chills. At that time, the doctor ordered CBC/Metabolic Panel and a neck CT scan. All clear, except slightly high WBC. She said I was fine.

These symptoms continued until about Feb. when I began to have a high heart rate. Was diagnosed with sinus tachycardia. The doctors at this point thought everything could easily be contributed to anxiety.

Feb/March I began to lose a good deal of weight and began to get fatigued. I then saw a gastroenterologist and had an upper endoscope. All that he saw was a tiny peptic ulcer that was not bleeding. Right before the endoscope I was tested positive for occult blood (I have had dark stools) but he didn't feel the ulcer was bleeding. Shortly before this, I had pain in my liver area (a stabbing pain in the URQ) and went to the emergency room. They said it was most likely gastritis and that was what prompted my gastero visit initially.

So I went to a Rheumatologist and that was all normal as well. Then, I began having slight kidney pains and foamy urine/nocturia. Went to (2) nephrologists and a urologists. All said my kidneys were fine and cystoscope showed nothing wrong with my bladder.

So I've deteriorated since all this started and am still at square one. All of my labs come back relatively normal. Here are my current symptoms:

Slow growing hair/Dry hair
Dry Skin
Tremors of hand
Mental changes (I think it could be encephalopathy but have no proof)
Muscle wasting (my forearms are so skinny and my calves. Muscles feel mushy)
Can't quit moving my toes when I am sitting
Daytime bruxism
Right shoulder numbess/slight pain
Stabbing pain in abdomen sometimes
My stool seems dark, but I've had 2 doctors do occult test again and they are always normal, and I buy the colon screening kits and they are always normal as well
Pretty bad fatigue
Wheeziness when I sleep
Pitted nails
Hairy tongue in the back
I was having sleeping problems, not so bad right now
Dark urine, especially in the morning
Hazy urine during the day and foamy
Occasional nausea
No appetite

I think that's about it. Here are labs I've done:

Metabolic panel - Always normal, sometimes slightly high blood sugar (140ish)
CBC - Normal, sometimes low MCV
Vit D - Low
Renal Ultrasounds - Normal blood flow and size
Abdominal ultrasound (back in late feb) - Normal. Also had one in either March or April for my kidneys (Urologist performed). I would assume they would find something with my liver there maybe as well?
Heart Echo - Normal
Rheumatology - Normal
Mono - Negative
HIV - Negative
B12 - Normal
Cystoscope - Normal
Urinalysis - Always micro RBC. Sometimes mucus and sometimes hyaline casts.

So I have no idea what is going on and neither does my wife nor family. Is it possible that this could be liver related? I'm thinking because of the mental changes, pain in liver area front and back, muscle wastage, and
lack of appetite/nausea that it is at least plausible. I have no jaundice whatsoever (my eyes are very clear, and my skin appears somewhat normal colored), but I've read that liver problems don't necessarily entail jaundice. Also, I've read that in some rare cases, ALT, bilirubin and other liver indicators can appear normal with scarred livers.

Please let me know what you think. I am so scared that I will die not even knowing what is taking me out. I've thought kidneys because of the kidney pains, liver, cancers and so on, but nothing can be discovered. My biggest fear is some type of heptarenal failure causing my BUN to stay in normal ranges. Do you think I have any chance whatsoever of survival? The ONLY positive things are:

I am still very much mentally aware. I know what day of the week it is and have a decent concept of time still. I may be 1 or 2 days off occasionally on the calendar, but it's not too bad.

I always know where I am.

I can walk and lift things, but am very weak and have no energy.

I still (in my opinion) have good short/long term memory.

I am well enough to type this post.

My speech is not slurred.

I am still alive somehow.

Post Edited (Wlkrdude) : 10/26/2015 4:35:22 PM (GMT-6)

Posted 10/26/2015 11:14 PM (GMT 0)
Have your gastro doc refer you to a Hepatologist. Your symptoms could be from any number of things.


Ziff
Posted 10/26/2015 11:32 PM (GMT 0)
No, I haven't seen him in a while.
Posted 10/26/2015 11:44 PM (GMT 0)
Welcome to the Hep Forum. We are those with liver disease and those who love them. I am sorry to hear you are having a difficult time finding the source of your illness.

You don't mention if you were tested for Hep C. It would be a good idea to rule that out if you have not already done so, especially if you are a baby boomer. Boomer's are 5 times more likely to have Hep C.

It does sound like you have had the type of testing to rule out liver disease, have seen a gastro, had an AUS, an EDG, and labs. Likely, liver disease would have been found in that process. We suggest everyone with liver disease consult a hepatologist. A 2nd opinion never hurts if you remain concerned about your diagnosis.

We were shocked when my husband, in a routine physical, was diagnosed with grade 2, stage 4 cirrhosis... and Hep C. His only symptom was some fatigue that he brushed off as middle age. He was 55 when he was diagnosed. That was 10 years ago. At present, themister has end stage liver disease and is on the liver transplant list. Needless to say, he is sick ...every day.

Others will pop on and let you know their experience and offer any suggestions. Again, Welcome. Big Hugs
Posted 10/27/2015 12:06 AM (GMT 0)
I just don't see how I could have gotten Hepatitis C. I've been with 1 partner, never had any surgeries or transfusions (besides dental work), never have gotten tattoos, etc. Are there Hepatitis diseases that aren't transmitted these ways?
Posted 10/27/2015 3:29 AM (GMT 0)
There are lots of people with Hep C, and Hep B with no known reasons for getting it. And there's auto immune hepatitis. Go see a hepatologist, if nothing else to rule it out.
Posted 10/27/2015 3:37 AM (GMT 0)
I'm just worried about having no answers. I weighed 157 before this started. Now I weighed 150 BUT none of my clothes fit, and my arms and legs are scarry skinny and flabby. Let's say hypothetically if this is liver related, is there hope?
Posted 10/27/2015 10:06 AM (GMT 0)
Their is hope in anything. While I understand your concern I also find it odd that you've not seen a professional in this field to see if your hunch is correct. The more time passes by the more damage will be done just like with Cancer. Lots of people have good results and live to die of old age if the problem is properly addressed early on.

Ziff
Posted 10/27/2015 11:15 AM (GMT 0)
You have to understand that that they think it's strictly anxiety, despite me losing all of my muscle mass and you have to have labs to back up your concern. I've seen different doctors but my medical record follows me around.
Posted 10/27/2015 2:40 PM (GMT 0)
Hi wlkrdude, I'm sorry to hear what an awful time you're having, but it's difficult to know just how to respond without additional history. Are you 20, 40, 60 years old? Were you in good shape and what was your health status prior to this?
Besides referrals and an initial work up, where is your PCP in all this?

There is no doubt in my mind that anxiety and/or depression are part of the picture here...whether causal or resultant or both. No human being could live your life over the past 11 months and not be stressed...and stress will manifest its ugly head in a host of negative ways...physically, emotionally and spiritually.

It sounds like darn near every physician has diagnosed you with anxiety/depression.
While some may point to this because there's no other firm diagnosis here, I think you have to ask yourself..."Wouldn't I be better off with therapy/treatment for anxiety and depression"?...because at this point in your life, there is no doubt that you are suffering emotionally...no matter the cause. You can still look to additional diagnoses.
Do not let shame, or self-loathing play a part in this, anxiety and depression are as real as any illness.

Additional thoughts...I noticed that you didn't mention any thyroid studies, This should be an easy check..a tsh, a free t4 and a free t3 should put it to rest.
It's certainly possible that you have an early presentation of a neurological disorder. I can't think of many reasons for grinding your teeth during the day...besides some sort of malocclusion or anxiety, but a neuro disorder like Huntington's could explain it, although this would be rare and doesn't explain most of your other symptoms.

Please try to embrace treatment for anxiety and depression. It doesn't mean you have to stop looking for other causes, but my bet is you'll feel better...at least. Also, I think it will help you in your dealings with the medical community. You'll be seen more as "compliant" and not "resistant" because you're exactly right, your medical record will follow you.
_________________________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

Post Edited (woofer5) : 10/27/2015 11:20:12 AM (GMT-6)

Posted 10/27/2015 3:42 PM (GMT 0)
I agree with woofer5. Thyroid testing would definitely be appropriate, as some of your symptoms could be related to thyroid disorder.

As for your anxiety and depression, I see two possibilities. Your physical health problems could be causing the depression, or the depression could be causing at least some of the physical problems. Either way, seeking treatment for the anxiety and depression would put you on the road to overcoming at least one aspect of your condition.
Posted 10/27/2015 11:18 PM (GMT 0)
You ask if your mystery illness is a liver problem. A couple of us suggest you see a hepatologist and find out. Then you come back and say you think it's anxiety.

My advice; go see a shrink and a hepatologist, not necessarily in that order.
Posted 10/28/2015 2:34 AM (GMT 0)
w5...adding a "what they said" to this thread.

You mention that you have not engaged in Hep C risky behaviors...do you know this virus was transmitted via injection during military physicals during the Vietnam era with those "guns?" That those who were first responders early in our understanding might be infected. That it can be transmitted on a partner's tooth brush? Do you know that Hep C can be transmitted at birth? In a transfusion prior to the testing of the blood supply for this virus? From poorly cleaned dental equipment, other lab equipment? Rarely, but it can happen. The A, B, C viral labs are offered to clear up any mystery.

Lots to think about here. Let us hear how your appointments go with the therapist and hepatologist.

Hugs,
Mama Lama
Posted 10/29/2015 1:41 AM (GMT 0)
Any hope if it is? I'm scared now because of the really high b12. Can I, hypothetically, gain my muscle back if it is liver? Or have a few years in me? :-(
Posted 10/29/2015 2:04 AM (GMT 0)
You're posting the same basic theme on 2 threads. Stick to one. Again, stop self diagnosing.
Posted 10/29/2015 2:42 AM (GMT 0)
Thought I clicked replied, didn't realize it was a double post. Can someone kindly answer my question?
Posted 10/29/2015 2:54 AM (GMT 0)
You know what? Screw everything. 8 months ago I got sick. I'm told it's anxiety, anxiety, anxiety.

Anxiety caused me to pass blood.
Anxiety causes me to lose all of my muscles.
Anxiety causes my pee to be dark.
Anxiety causes me to have no energy as a 30 year old.
Anxiety causes me to wheeze in the night.
Anxiety causes me to barely get around anymore.
Anxiety causes stabbing pains in my liver area and flank pains.
Anxiety made my urine foamy.

People say, quit diagnosing yourself. Trust your doctors. Get a second opinion. You know what? I've done all of this. I don't have the energy to go see more doctors or lose even more blood. I can't even get a simple response to an honest hypothetical question.

I'm sorry but I'm just venting. I used to be happy, healthy and just moved into a new home a year ago. I was wanting to start a family with my wife of 13 years. Everyone thinks science is SO great, but it can't even diagnose something in a first world country in the year 2015. Instead of trying to help people, these lousy so called doctors simply shrug a life or death situation off as a mental condition. Yes, I have a mental condition now, you bet. Before this, I was a 3.8 GPA college graduate with no mental illness. I've scoured the internet, hoping there was someone with mental illnesses that had severe muscle wasting, nausea, no appetitie, urinary, skin and other ailments. No luck. Even disuse atrophy can only account for a 30% decrease in tone.

My life feels over and wasted. No one is helpful and doctors really don't care about your well being, they just want to write another Zoloft prescription and go home to their families. A good doctor is a rarity, at least with the crappy insurance that I ended up with. I'll just leave this forum, as it seems I'm, once again, a menace to society and a nuisance.
Posted 10/29/2015 4:52 AM (GMT 0)
No I don't think your liver is the cause. Your ultrasound and blood values for liver are normal

Have you had a colonoscopy ?

Gastritis can cause URQ pain

You have elevated wbc, what was your hgb?

It's not anxiety, anxiety is byproduct of brain imbalance

Does your urinalysis say leukocyte esterase positive?

Your overall weight hasn't dropped that much

Colonoscopy can rule out colorectal cancer, diverticula,etc

Barry
Posted 10/29/2015 9:31 PM (GMT 0)
I will fix the double post and put any relevant remarks in here, deleting the empty untitled post.

Please know that liver disease can be awful, but it is SLOW, except in some cases of acute poisoning with excess iron, copper, snake venom, huge doses of Tylenol, and really acute auto immune hepatitis.

In those cases your AST/ALTs zoom into the thousands and the docs know right away you are in trouble.

My partner Mike acquired Hep C in his late teens (late 1960s) with IV drug experimentation. He didn't not know he was sick. In his mid 30s (early 1980s, he was very sick....flu, mono, Epstein Barr virus....all kinds of diagnoses. He could not work, was very tired for a long time. He recovered. I should say he was a daily drinker....if it had alcohol, he liked it. No more drugs since the teen times. In the 1990s he found out he had Hep C. In 2003 his viral load was high and they put him on a trial with Interferon and Ribavirin. He was as sick as the early 80s, could not work, etc. His viral load doubled on Interferon. He (now that I know about it) had HE the entire time of the treatment. He had muscle wasting, etc etc.

He recovered slowly and found out he had Cirrhosis. The doc told him even with Cirrhosis and Hep C, if he quit the alcohol he could easily live 15 years without getting into real trouble. Well, he did not quit. But he eats well, exercised, and carried on. Until 2010. 7 years. And we got him to a HEP

doctor after a life threatening bout with sepsis. They did their tests and determined he had 3 months to live....IF he continued drinking with cirrhosis and Hep C.

Miracle, He quit drinking. Went to AA, got his calendar signed for 6 months, 4-5 times a week, and qualified for a liver transplant 6 months and 3 days later in 2011.

I will tell you from 2008 - 2010 he lost 90 pounds, had NO muscle mass, could barely walk, had HE really bad and was a total mess.. We arranged his funeral, knew it was all over.

So, now. He is about 25 - 30 pounds up from his lowest, he was too chubby before, so this is better.

He took new drugs for Hep C in 2014 and is clear now, but his liver is not 100%. HIs labs are good. He takes a lot of medicine.

His muscle mass is better, especially in his legs which have excellent definition. He is not so strong in his arms because he has had 2 rotator cuff surgeries and is having his elbow repaired next week. So something isn't right there....we don't know what. but he is 67, post TP, post aortic Valve replacement. He is often tired, but heck...he is alive, virus free, has a fake heart valve and someone elses liver....so pretty good I think,

So, no, it doesn't sound like you are leaving us today.

And, yes, you can get muscle mass back.

Hugs,
Mama Lama
Posted 10/29/2015 9:34 PM (GMT 0)
Here are the double posts. they are out of order I think, but at least I didn't lose them. ML

_________________


Wilkirude

Sorry I haven't been able to respond. I forgot to mention a few lab results. I did have a thyroid test, and it is normal.

I am sorry I forgot to mention I am 30. I was 29 when this began. I was formally a very healthy man. I smoked 1/pack a day, but nothing too heavy. I would drink maybe an average of 6-12 beers a week. I'd say about average for my age. I never really worked out, but I work construction so I was always stronger than most of my peers. I would jog occasionally, and despite smoking and no real exercise regime, I could jog a mile and a half on a whim.

I just had a metabolic panel and a B12 lab. My new PCP thought it would be worthwhile to check my B12 since I have had fatigue. Come to find out, my metabolic panel is once again normal, and my B12 is highly elevated. It is in the 700 range. Of course, my lousy doctors didn't even call me about this, I had to read the results myself online. And from what I've read, elevated B12 is indicative of either leukemias, liver or kidney problems, which liver and kidneys are my biggest concerns due to having pains in those areas.

Also, I have been seeing a psychiatrist/psychologist. I quit taking the medication, because the stuff they prescribe me could potentially damage my organs further if they are indeed scarred.

I'll have to call her tomorrow and get a Hep. referral. I just want to know if I have any chance whatsoever to live? I mean, muscle wasting badly, skinny, no energy, mental symptoms have not improved any. It sounds dismal. Any miraculous stories anyone can share to me at least comfort me?

And let me mention something about my PCP. My first PCP thought everything was anxiety, but fortunately, referred me to any specialist I wanted to see without any issues. She moved out of state, so I lost her. I tried another clinic, and they did all the basic tests and had not enough concern to refer me to any more specialists, since I've seen so many in the first place.

The new PCP threatened me with in-patient therapy, and said this is all on me, pretty much. Next visit, she is curious as to why my vitamin D is low (being the first doctor who was actually concerned.) So I'm dealing with her and don't have many options with my crappy Obamacare insurance (which I just got in December when all of this started, ironically enough.)

Thanks for all of your replies.

______





**David**
Veteran Member


So you have lousy doctors, your shrink is prescribing meds that could damage organs and you have crappy insurance.

Perhaps you need new docs. How about a hepatologist to begin with?

First check out any and all possible organic problems. If that isn't the cause, try finding a new shrink.

You continue to self diagnose, which is not a good way to go.
nullum beneficium impunitum...
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ppm guy
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Sounds like today's crappy health networks. Keep *****ing till they find it. You have serious symptoms. Why no colonoscopy?

Rbg in urine, positive blood in feces. They have to rule out the big stuff 1st
Barry

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Rubi
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I'm not sure that Obamacare is the problem. If I had not gotten Obamacare I would be planning a trip to India to purchase the medications that Obamacare is paying for right now. As for doctors, there are good ones and bad ones I'm sure. I have had to stay on top of what was going on every step of the way. I would still be waiting on approval for meds if I had not taken an active roll in tracking and sending needed information to the Insurance company.

Some of your symptoms seem unrelated. Like the tongue hair (which looking that up it is pretty common and good mouth care can help that. Also, smoking can cause it. A pack a day is pretty heavy smoking BTW) Also, the foamy urine. There are several things that are non life threatening that can be the cause. If the doctor has done the protein test and ruled that out it could very well be one of the other causes. You didn't say in what time period you lost the 7 pounds. Have you changed your diet? If your b12 is high are you eating a more meat based diet?

I'm not a doctor. I don't even play one on TV. But, you definitely need to get a doctor you are comfortable with and get some answers. If the meds the therapist gives you aren't working you need to discuss that and get meds changed. But, don't just stop taking them.
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker
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A.Ziffle
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Sounds like you been chasing something for awhile medically. To some extent I would agree the common cure to everything is a pill to most physicians. There are new advances everyday in chemistry and the need for less evasive surgery is a result. If you have a quack that makes his money via a handshake with a pharmaceutical company strictly, Well it's time to find a new PCP.
I personally believe that you may be a victim to incorrectly prescribed medications for your mental disorder. Most of the newer medications work of of serotonin and other naturally produced chemicals to balance out perceived emotional issues. There is a trade off that isn't always discussed when taking these new drugs. You can't just stop taking them abruptly.
I read a article recently that the USA takes 95 percent of the globally produced medications. Before kids reach puberty they are stuffed with any medication that makes them more docile. Easier on the parents who don't want to deal with a brat. The school system is a government run institution and could care less about free thought so they encourage the parents to medicate the little worker drones. Everybody's happy until Johnny stop taking his meds and wallah another horrific school, church or institution pays the ultimate price.

I can't diagnose your problem and neither can you. What I can do is be responsible enough to speak to my doctor and do homework on him/her. I can read those prescription warnings most of us ignore. Actually the choice is yours to make life what it is. Just don't take for granted a politician, lawyer or a doctor is doing everything in your best interest. It's your job to know that ignorance is not a good defense.

Ziff
"The truth will set you free, but not before it pisses you off."
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ppm guy
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We need to start a class:
How to navigate the big healthcare networks(HMOs)...
You absolutely must file grievances, complaints and I mean loud complaints. As ziff said,"don't count on your HMO to fix you".
Posted 10/30/2015 10:49 PM (GMT 0)
Thanks for the support
Posted 11/6/2015 5:05 PM (GMT 0)
Get a 10 panel STD test and make sure there is nothing in those
categories,

Get a test for ammonia. If your liver is damaged your ammonia levels will go up and cause all kinds of problems and even can put you into a coma. Several labs will do the test for about $33 and their doctors will order it. Or for about $10 you can buy 50 ammonia test strips for testing aquarium water. Those test only go up to 6 ppm and norms are 2 to 8 ppm. But you will be able to tell if your urine or saliva ammonia
is off the chart.
Posted 11/7/2015 8:33 PM (GMT 0)
So I did the test strips for the aquarium. I did both urine and saliva and both of them were green (high). But as a control, my wife did a urine and saliva and both of hers were high as well. Thoughts?
Posted 11/8/2015 12:58 AM (GMT 0)
This link below will give you some information for "plasma" ammonia testing.

Ammonia testing designed for fish aquariums is NOT the same thing as blood labs for liver disease patients. Please do check with your doctor to determine which labs are appropriate for you. Big Hugs

/labtestsonline.org/understanding/analytes/ammonia/tab/test/
Posted 11/8/2015 8:31 PM (GMT 0)
www.webmd.com/mental-health/munchausen-syndrome


Check this out. It may guide you down the right path to getting better.

Ziff
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