Perplexing, contradicting symptoms. Blood tests and BX results! Pls. Need your Insight!

[joachim2007]

hi all

i (m, 31y) have all kind of suspicious symptoms

- many portal hypertension-like symptoms (shortness of breath, ...)
- red, often burning, palms
- mild itching, somewhat unusual body odor
- fatigue, abdominal discomfort, stool issues, etc
- elevated serum bile acid levels (18umol/l whereby upper limit is 8!)
- elevated bilirubin (between 0.6 and 2 mg/l), but docs made a gene test for gilbert syndrome (positive), and therefore they dismiss the bilirubin issues
- slightly decreased blood clotting (INR around 1.1 - 1.2)
- i have swolen lymph nodes in my arms that tell me i surely have some kind of infection (will get a biopsy soon)
- people from work and friends said i look unhealthy, pale, etc. (just confirming what i see as well when i look into the mirror)

what makes things worse is that i had a hepatitis C risk in 2002, had lots of Hep C symtoms back than, including elevated ALT + AST some months later, ALT up to 180 - but it all went down again, and docs declared me non-infected. And indeed, i consistently tested negative for Hep A,B,C,D,E. Even ultrasensitive PCR and viral cultures negative, both in 2002 and now in 2007. Even went to spain to let a top lab check my blood (PMBCs) for 'occult' HCV. Mas, nada!

I did have any liver values taken from 2003 to 2006, and in 2007 they are normal, e.g AST around 18, ALT around 15. GGT normal, AP normal. (But i am aware that this is not unusual in later disease stages.)

AFAIK, the other obvious (non-viral) liver diseases have been ruled out via blood tests by a gastro doc and a hepatologist.

in 2007 i also got checked several times via ultrasound + duplex (fine) and had a FibroScan reading of 4.3 kilo pascal (=no fibrosis). However, even though the duplex says "no portal hypertension", i STILL feel i have some issue with my hemodynamics.
However, doc said, normal duplex and normal spleen = no PHT.

Now in september, i had a liver biopsy, i was sure it will show cirrhosis - BUT, surprisingly it tells that there is no sign of fibrosis, hepatitis or cirrhosis (see text at the end of posting). Since the cylinder was nearly 4cm long, i hope that i can somewhat rely on it, esp. in combination with the FibroScan. (But if you think differently, pls. let me know your opinion.)

Well I should be happy, right (no cirrhosis!), but nobody can tell me why i am feeling so bad, why so many of my symptoms sound like liver disease (even my GP says that), and why several indicators of liver function (bili, INR, bile acid levels) are pointing towards mild liver failure?

What could be going on there?

I will probably have the next meeting with a hepatologist at end of November, but somehow i feel i need to do something in between...! I even have fear boarding an airplane, because i fear i could have issues with varices on cabin pressure loss.

So, as you see, i am desperately in need of some hints what to do next.

What would you do if you were in my shoes?
Does anybody have an idea what tests or experimental treatment (for the bile acid, and suspected PHT) i should ask for?

i am thinking of asking for a stomach endoscopy to check for varices, but i can already hear my doctors reply "NO INDICATION FOR THAT" ..

as you see, any insight welcome
if you need more details for the assessment of my situation, i can provide it, i have all my lab results at hand.

thanks!!
Joachim

======= pathology report (translated from German) ========

Three cylinders of 20, 17, and 5 mm length and 3 biopsies of 1mm

The liver biopsy fragments exhibit a compact liver architecture, lobular image is maintained. The nuclei of the hepatocytes vary somewhat in size, and occasionally the hepatocytes are binuclear and have somewhat increased number of vacuoles. There was however no apoptosis found and no laminar necrosis. The copper cells are present in normal numbers. The central veins are bound by normal connective tissue. The portal fields are not enlarged and do not exhibit any increased fibrosis. No inflammable infiltrates, and no bile ducts proliferation. No cholestasis. No deposition of hemosiderine (no hemosiderosis), no fats/faty degeneration, no septal fibrosis.

** Diagnosis: liver biopsy fragments with mild nuclei glycogenosis without signs of hepatitis, neoplasia, storage disease, oder dysfunction of bile metabolism. **

[joachim2007]

hi guys

thanks for the continued analysis/comments, i really appreciate it.

the symptom list posted by BThompson is indeed mine. Thanks for posting it, i did not dare to put it here 1:1, but it more or less is still correct.

OK, the problem with the gilbert syndrome diagnosis is, that I have elevated bile acid serum levels (3 fold elevated). The literature (e.g. Dr Schiff's textbook) clearly states that in Gilbert syndrome bile acid levels are *normal*, and that bile acid levels can even be used to distinguish GS from other liver diseases (!).

The serum bile acid tests have been taken just 2 weeks ago, because i complained of itchy skin, and my GP wanted to demonstrate to me that the liver can't be the culprit. When he was then confronted with the unexpected result, he said he is overwhelmed and could not explain it (yes, great) and went on holidays. And unfortunately, the GI doc and hepatologist i have seen here locally are both in holidays right now as well --- Which leaves me in a bit nervous state.

Regarding my super-duper health care: yes, i may have seen some good docs, but all in all what did it buy me, nothing - i still have my symptoms, and still no explanation and no outlook towards a cure. Most docs follow their standard scheme, and if you don't fit into it, bad luck. Some tell you straight away, yes your symptoms sound like liver disease, yes it sounds even like Hep C, but when they see your negative test results, they smile, and suddenly my symptoms are not so imporant anymore.

Regarding my guilt/regret/remorse: i would not feel guilty at all if i would feel healthy right now. and indeed, i am one of those who used to smile and smirk about the puritan-anglicanian promotion of alcoholic and sexual (pre marrital) abstinence. But now, i have to admit, with the possiblity (theoretical one...) of having catched "something" that is harming me, makes me feel some regret indeed, and i see the aforementioned conservative values from a very different light. I have to admit, there is a certain collective wisdom in it, which i did not see before.

Regarding the reality/severity of my risk and why do i focus on Hep: Well if i really came into oral contact with blood, then i unfortuntately had all i needed to contract really *any* commutable disease. Due to the darkness and my drunkenness i simply don't know exactly how severe my risk was. The Hep C idea emerged, after i had noticed the typical hep symptoms, and when my ALT went up to 180 (and i was not drinking anymore!).

Well, and a few months ago, when i was asking myself why the heck i feel so sick, it struck me when i read that only 90 or 95 % of chronic viral hepatits are attributable to Hep B and C, and that there are many unknown viruses out there. This is what really brought me down, in combination with my health issues.

That's where i stand right now, feeling quite sick, having doctors who admit it sounds like liver disease, yet nothing is found. However, since the biopsy, i at least have the hope that it can be reversed still, if only the culprit is identified. And that's why i post on boards like these, fishing for ideas, perhaps hearing from somebody with the same puzzling issue who perhaps knows already the answer... and, of course, secretly hoping that people tell me i should forget (at least) about the cirrhosis thing.

in any case talking to you guys was a bliss, i  like your humor ;)

[BThompson4]

However, suddenly, in spring 2007, i came down with symptoms of liver disease, like fatigue, red palms, breathlessness, muscle wasting, abdominal discomfort, stool abnormalities, difficulties walking and breathing, bad odor of hair/skin/stool/urine, dizzyness, reduced blood clotting (80%), elevated bilirubin (between 1.0 and 2.0), low-ish platelets (200K) etc.) and suspicious AST/ALT ratio of >1 (with both AST and ALT <20. . . .

thanks again for you input. I tried to establish a list of all sympoms from 2002 to 2007.

Sorry in advance that it is such an awfully long posting....

Symptoms 2002

- in May 2002, two weeks post exposure, a short (1 week) flu like episode (immediatly i suspected HIV, but tested conclusively negative ever since). i also remember having lymph nodes swolen in lumbar region.

- in July, August, flu symptoms, itching, confusion, stool/urine discoloriation, weired smell of skin, night sweats on and off
(this all triggered me to go to doctors, suspected acute HIV/HCV and/or HBV, but nothing was found in blood, expcept bit of lymphopenia and mild bilirubin elevations)

- i also noticed a coated tongue. first time in my life. but it persisted till today.

- in fall 2002, i was given antidepressants (as they thought i have some kind of fear & guilt issue going on). Meanwhile, my symptoms levelled off, i was only feeling fatigued etc. but the really alarming things like smell, night sweats etc. were gone.

Symptoms 2003

- however that was the time, when my ALT/AST skyrocketed to 180/70 and stayed in that region for 4 months or more, until Feb/March 2003. I thought *finally* this will give doctors a clue, but no, diagnosis was "unexplained but harmless".

- i then started doing sports, and got better and better. The only issue i had was a bit of fatigue and some (suspected) lymph node swelling in arms, and sometimes i felt them under knees, chin etc. And, some tendency to easily start sweating (e.g. when waiting in a queue or so). But all other symptoms have resolved.

Symptoms 2004 - 2006

- in 2004 i was doing pretty well, any fatigue was combated with sports, coffee, red bull...

- in 2005, 2006, retrospectively, i think i was already a bit more tired then a person in my age should be. So, when going out, i would go home at midnight instead of 3AM (as i used to), etc. and i would prefer watching TV at home instead of going out, etc. I lived in Paris for a while, but instead of going to clubs and for extensive sight seeing, i was sitting at home, reading, etc. I thought, i am simply too busy for leisure... But in hindsight, i think i had already lower levels of energy back then, but i was not really aware of it.

- in fall of 2006, i noticed my hair was falling out. But i did not associate it to any possible illness. Just thought, i had bad luck (because my dad and everybody else in my family has strong vital hair)

- in second half of 2006, i began spending the weekends in bed, mainly in front of TV, to "relax", as i thought.

But then, in early 2007, i noticed nearly every week a new unpleasant symptom. In the beginning i was not really concerned, only after i suddenly was reminded of how i felt in summer 2002...

Symptoms 2007

- fatigue, feeling of no energy reserves, even during holidays, etc. (started to become worse in early 2007)

- difficulties walking. this is probably the most disturbing issue. I really feels some strange dragging to the side when walking, which makes me quite insecure. (this came up in May 2007)

- arms, legs feel heavy (new since 2007)

- feeling like i need to breath in more air. i had to quit doing sports because of it, and i don't feel comfortable walking more than 500 meters. (since May 2007)

- strange feeling on skin: like a mild sunburn. perhaps a little bit itching, but not much (currently, thanks to colder weather perhaps, this ithching has improved a lot) (since May or June 2007)

- sometimes a mild tingling in hands (since May or June 2007)

- irritable skin: get red spots on pressure easily (but no real bruises)

- the palms also get more easily red than they used to. i also see veins on my palms.

- i see my veins much more prominently on chest and neck area. However, they are blue and big, not those red small "spider angiomas" i saw on the web. (this i notice since July 2007)

- sleep disturbances: i fall asleep very easily (at 11PM) but wake up already between 4AM and 5AM (unnatural for me), except when i take some sleeping aid. (since spring 2007). In my earlier life, i never went to sleep before 1 or 2 AM, and i woke up at 8 AM.

- certain discomfort in lower right side of abdomen, ribs, etc. (since May 2007)

- cognitive problems: sometimes it gets difficult to think 100% clearly. (since spring 2007, but it improved after i cut out excessive protein from my diet)

- problems with nutrition: some days, i have low appetite, so i usually concentrate on high-calory intake like chocolate, dates.

- suspicious changes in finger nails: they feel a bit weaker, and the white "half moon" i had are all gone, except in the thumbs! white areas begin to form, too.

- continued and progressive hair loss. When i go with my hand through the hair, i can be sure to have 3 hairs in my fingers. People are noticing it, too. However, in winter 2006/07 i was treating it with "Regaine", and it seemd to respond. I stopped the regaine when i got so sick in spring.

- coated tongue (since 2002...)

- more frequent bowel movements. In general, i think my stools have been slightly unhealthy since 2002...

- sometimes, i feel a pressure at the nose, smell the blood. (this got better now thanks to the cooler weather, it seems. but to me, it pointed to portal hypertension - just as my troubles walking and running, and the desire for breathing in more air). However, on ultrasound, no portal hypertension was seen.

- i smell a very strange (foul, penetrative) body odor. it is on skin, in hair and also in excrements. I noticed it first in summer 2002, but it subsided. In may 2007, it suddenly re-appeared.

- painful nodes, on upperarms and forearms, i suspect lymph nodes. They appeared in 2002 and never went away. Some docs say they are lipoms, others say lymph nodes. Will get them taken out for biopsy, soon.

- often feeling of mild fever (but usually normal temperature), but often i indeed have slight fever (e.g. 37.3 celsius). but almost never get sick with real flu or cold, etc.!

- as already stated, quick test around 80-85%, bilirubin elevated from time to time, lowish lymphocytes from time to time, etc.

So, that's the list...! sorry for the length Rolling Eyes thanks for reading it Smile

I really, really wish i can somehow reverse these symptoms. They severely impair my quality of life, and the fact that i have no diagnosis, no prospect for treatment, is frigthening me, to be honest.

Arrow In addition, some other confusing things:

- while ALT/AST was elevated, bilirubin often was in normal range and vice versa
- Quick value was *always* lowish

Arrow as i mentioned, Evane, your assessment, i.e. the possibility that it's not liver related, is shared by many doctors. Today, i got a report from a quite famous hepatologist from Spain, who took 17 vials of blood in July and checked for everything that can be checked. The report ended saying "In summary, I do not find any clinical or analytical evidence of liver disease. This is a healthy person who has been in contact with HAV hepatitis and he is protected. He also is immunized against HBV hepatitis. He may perform a completely normal life."[/u] Hmmm?! Well i will see if the biopsy confirms this assessment.

http://www.hepcukforum.org/phpBB2/viewtopic.php?p=88095&sid=22018c2067921dfdcabc45ee09068443

[mremeet]

Yeah, he's well informed, smart and has repeatedly accessed the best healthcare available anywhere looking into this. And he probably was at the same clinic that the infamous Castillo is from (the occult/SVR persistent low level doc). Plus he got a Fibroscan too, maybe even in France (where it was developed). Not that that's a bad thing, it's good to take your health very seriously. But yeah the whole "I've been a naughty, naughty boy" thing is gettin' kinda old. I thought Europeans had more or less put the whole anglo-puritanical "sex is bad" thing behind them by now? ;-)  Just kiddin' joachim, don't have a cow.

[BThompson4]

I doubt anybody can tell this guy anything that will stop his imagination from running wild.  Cirrhosis five years after oral sex?  The earth would have about half the population it now has if that were even remotely possible.  People with sexual guilt show up here all the time for some reason, as if HCV were an STD, which almost overwhelmingly it is not.  Find a more appropriate forum to vent your sexual guilt.

Have to admit, though, this guy knows a lot about liver disease symptoms for not having liver disease.  

"Even went to spain to let a top lab check my blood (PMBCs) for 'occult' HCV. Mas, nada!"  -- That is just unbelievable!!

[mremeet]

Dude, a single event of going down on some "unclean woman" 5 years ago? I mean yeah, there's some risk there (especially for HBV), but did you know there are many people here who have had HCV for 20-30+ years and have been having unprotected sex with their spouses for as long and STILL have not transmitted it? Did you also know that even if you did get HBV, like 90% of those who get it clear it naturally? And by george you've had yourself checked out and checked out by what appears to be a top international healthcare team, and you've done so over the course of years and years - and you come up clean. Clean except for the Gilbert's syndrome, which as stated appears to be a pretty benign disorder, be thankful it's not someting more serious. I mean you really seem to think you might have cirrhosis, and yet you quite obviously do NOT. None of your top notch doctors have diagnosed you with cirrhosis, your biopsy in no way suggests cirrhosis, your fibroscan results say no cirrhosis, your platelets are normal, your spleen is not enlarged, your enzymes are lower than just about anyone's I've ever seen (and low enzymes are also found in HEALTHY PEOPLE, not just advanced cirrhotics!). I've had enzymes in the 60-80 range from HCV and drank my fair share simultaneously for nearly a quarter century and I only have an F1 liver (very minimal fibrosis, F4 is cirrhosis). What in the world makes you think you have cirrhosis, portal hypertension and esophageal varices of all things? Even if you did catch hep B or C, it would take a lot longer than 5 years for you to get to cirrhosis. Your fear of having cirrhosis is irrational in the face of these overwhelming facts, and yes it does speak of anxiety issues. Why can't you accept the Gilbert's Syndrome diagnosis? It seems very reasonable, you did test + for it and it more or less fits your symptoms. I dunno, hate to be dismissive of your symptoms, because hep C patients go through the doctor-symptom dismissal thing a lot. But you don't have hep C and don't appear to have anything else other than the Gilbert's. I just hope you resolve whatever it is and find some peace. You seem unnecessarily distressed to me, RELAX dude!

[joachim2007]

hi all, thanks so much for your insights

mremeet, your comments about unknown hepatitis viruses or other unknown pathogens are reflecting exactly what i have/had on my mind, too. most doctors i saw dismiss chronic non b/non c hepatitis (F and G are said to be harmless, etc. etc.), but in the end, there is no way to rule out that possiblity. The history of Hep C is a chilling example indeed.

My risk was one-time unprotected cunnelingus (i was very drunk and dont remember much, no excuse i know.)- next day the girl suddenly told me she had done drugs (and indeed a friend of hers indicated indirectly that she did IV drugs). what's more, i had a blood clot on my lip on the next morning, did not know whether it was mine or hers. When i asked her if she possibly had her period that night, she was silent for 10 seconds, and then said no. When i asked if she would to Hep C test, she said she was negative.

the sad thing is, that i always tried to be safe and protected, and was not promiscous at all, totally the contrary. but then, BAM, one stupid night can change everything. After that, I stopped drinking immediately, so that i never lose control again. I went testing for STDs and Hep *weeks* after the incidence (when i started to recognize symptoms), hoping to get early treatment if needed, because i heard that hep c can be cleared 99% if treatment start within first 3 months, etc.

But, it went differently -  i tested negative, and, sorry if it sounds twisted, but i am not at all sure if i should be happy about it, or if i really was unlucky enough to catch something unknown, untreatable.

regarding the psychsomatic route (some doctor's favorite theory, btw) i cannot deny i do have slight hypochondriac tendencies. But my risk, my symptoms and blood picture of 2002, and now the "come back" of my problems, are, as i fear, something that cannot be dismissed. Alone the serum bile acid seems like a justification for my worries. But, nobody could figure out yet what's going on.

And of course, i also do not know if i can pass on what i have, which is another huge problem.

sometimes, i get extremely down because i feel i am let down a) by myself by being careless and b) by medicine, exactly like Hep C patients pre-1989, and pre today's SOC.  On the other hand, i am also an optimist, and hope that if ONE doctor finally gets the clue what i might have, i might get treatment. I will see. (sorry for the rant..)

[mremeet]

Beyond what's already been said about Gilbert's syndrome and you testing positive for Gilbert's syndrome, you don't explain what your hep C risk factor was back in 2002. Whatever that risk was, if you effectively were sharing your blood with other people (and vice-versa), then you were and ARE at risk for contracting blood born diseases (and not just HCV). Blood born diseases that are both known AND unknown. There was a time when I was infected with HCV 24 years ago that HCV was unknown and was not screened within the blood supply (that's how I got it). And many people with HCV can be completely asymptomatic with no elevations in liver enzymes or other blood markers indicating its presence. If someone like that were given a complete physical 24 years ago by a competent physicican, it would go completely unnoticed. My point here is to explain that if you did engage in a blood to blood risk and now have mysterious seemingly unexplainable symptoms, you never know...you may have something that has yet to be discovered (or you've yet to test for). They're discoverng new cooties all the time, and rest assured they'll keep finding them. Also, be aware that there are other much rarer forms of hepatitis than just hep A, B, C, D, E, there's also F and G and who knows what else is going to be found in the future. And that's just hepatitis, there may be other critters that could get into some other organ or system related to the liver (but not the liver itself). Pure speculation, but like I said hep C was unknown and untestable for a long time (other than people having "non hep A/B" hepatitis), you never know what's circulating through some of our veins without us even knowing it (especially those with blood sharing risks).

Also, have you had your gallbladder checked for stones? Sounds like you've gotten phenomenal healthcare so I'm sure that's already been ruled out. But a congested gallbladder can cause bile to backup into the liver and cause a feeling of fullness under the ribs. Also, I don't want to seem dismissive, but are you sure this isn't some form of hypochondriacal anxiety your experiencing? Seriously, it's no joke. Some poeple can and do have anxiety issues when it comes to their health, especially if they really were exposed to certain risk factors. Anyway, something to think about. You seem really nervous and for the most part you sound healthy to me. It's not very realistic to have the expectation to be in impeccable health all the time, especially as we get older (not that 31 is "older", but you ain't a kid anymore). My $0.02 anyway, hope you get it figured out.

[gauf]

Wow! Hmmm..... I don't know what to tell you; seems you had a very good check of the liver and it is fine.  Your symptoms sounds like your RBC and WBC is out of whack for some reason. I think you should next see a good Hemotologist. Good  Luck.

[nygirl7]

You are very lucky to be clear of all the hep stuff, congratulations!  

It does sound like you have Gilbert's Syndrome that apparently isn't dangerous so you are very very lucky in the end!

"While this syndrome is considered harmless, it is clinically important because it may be confused with much more dangerous liver conditions"

[charm27]

You have all the symptoms of Gilberts syndrome---and you have Gilberts syndrome.
So glad to hear you all clear on the Hep side of things.