What would you do when in my shoes: swolen ankles, no diagnosis

[joachim2007]

hi, all

some of you know me already. I am the guy with symptoms without diagnosis. Sigh, my story is so wicket, i sometimes get desperate.

In 2002 i had risky contact with IV using girl, and some weeks after that had elevated ALT, AST (100-200) for several months. Retrospectively diagnosed as "undefined self limited hepatitis". But for me it's clear it cannot be just some co-incidence.

And now i find myself in the most difficult situation i ever was in:

- i have lots of strange symptoms: (diagnosed!) palmar erythema, strange swolen feeling/pain around ankles/feet), occasional itching.
- the swelling around ankles is still relatively moderate (perhaps 2-3 mm), but i feel they are swolen, and they hurt 24h / day.
- have elevated bilirubin ~1-1.5 mg/dl (but mainly indirect one), so docs think it is harmless (Gilbert's syndrome)
- elevated bile acids (~20mmol, range  But here the strange thing:

- all viral tests negative (Hep ABCDE, HIV etc), by antibody, DNA, antigen etc. in serum (and PBMCs)
- two normal liver biopsies: 09/2007 and 03/2008. They say, zero inflammation, zero fibrosis, etc.
- except bili, all liver params (ALT, AST, GammaGT, Alk.Ph, etc.) "normal" (betwen 10-30), except for inverted AST:ALT ratio (but docs say this does not matter)
- normal ultrasound + duplex (repeated)
- normal fibroscan (around 5kpa or so)
- no varices found in stomach, esophagus (i thought it would indirectly show i have liver problem, but glad nothing was found)
- i had some 'swolen lymph nodes' but they turned out to be lipoms (fat deposit) after extraction and analyzis by pathologist.

i hope it's not seen as cynical to put my proud stage0/grade0 results and negative tests on the board where many people are confronted with very, very different results. But pls. understand, i am really suffering and would do anything for a cure or at least improvement of my situation. So i am thankful for any kind of input. And the question for me is: if it's not the liver, what else??? What kind of doctor should i see? would an Endocrinologist make sense?

Here are my compiled doctor reports:
http://www.hotlinkfiles.com/files/1162323_slixs/anamnesis_en_mar26.pdf

Joachim

[joachim2007]

thanks all for your help,  insights and suggestions.

i will investigate further as i really want to understand, and if possible get rid of, the problem.

i keep you updated in case something noteworthy happens. (( Would be indeed desireable if it would be something harmless/treatable/... rather than some first sign of downwards spiral. ))

thank you again + best wishes. J.

[medicmommy]

Something else that occurred to me...have you had all your electrolytes checked? If your potassium, sodium, or calcium levels are off, it can also cause this "phantom edema"...I experienced this when I had hyperparathyroidism which causes your blood calcium to spiral upwards...When it gets bad enough, the edema sets in, and in desperation to be rid of the extra calcium, you urinate constantly...This can progress for YEARS because it's pretty unusual, and docs don't look for it...Hope this helps...Oddly enough, water intake reverses a lot of edema causes...   ~Melinda

[fretboard]

I admit that would be a pain, especially if you couldn't find out where it was coming from.  Someone already posted that, "some people have lymph edema and never find out why".  That's certainly true, I swell up all the time.  I've had one doctor say that it's from my HepC, and another one said it was from using IV.  The GI said, that it could be from any number of things and he went further to say that the swelling doesn't go along with my blood work readings.  I know that I've been swelling since before my 1992 diagnosis, but that's really not saying much.  My swelling was at it's highest in 2002 late 2003 right before I became toxic and eliminated all the krap from my life.  There was a time period that I couldn't even get my shoes on, that's how fat my feet were.  That is totally embarassing, going to work in flip flops.:)  My doctor who is now retired gave me some diuretics and potassium, I hardly ever take them as I've gotten used to it.  Good luck whatever you decide  later    

[medicmommy]

I was just going to say the same thing as Taboo...I'm leaning more toward renal issues...But there are a handful of things that can cause these problems...The first stages (compensated) diabetes, for example...Good luck...I hope it's something easily managed..

[Taboo40]

There are several other conditions which cause swelling of the ankles, one is kidneys, and the other is congestive heart disease. Liver docs. are not prepared to diagnose heart disease. Go see a heart doc if the GI's can't diagnose your condition.  Good luck!

[joachim2007]

Sorry Marcia, I read your name correctly, but for some reason made the same typo TWICE :)

[joachim2007]

* hi Marica:

yea rheuma was indeed among the first thing which my GP checked me for in early 2007 when my problems surfaced. All was negative.

Regarind urine, tough i never had a urine test, I had some uric acids values in blood test results: 237mmol/l, ref = 150-410.

* Hi Leah:

also thanks for your insights. Of course, the possibility of two bogus biopsy results is really not very agreable. But all of it happens, all the time. Even on this board a member had a biopsy result off from realiry by 2 stages.  On the other hand, my hope is that the nice fibroscan results, which take into account all of the liver, might confirm that "MOST" of my liver is all right.
And now indeed, what interests me, perhaps there is just some tiny part of the liver/bile system causing this trouble. And indeed an ERCP/MRCP is on the table.

~~
in sum thanks a lot for your inputs. I hope that for both of you, things also turn out all right and you'll have a way better 2008 than anticipated!!! :-)

Joachim

[sldb]

A rheumatologist  would be a good person to see. Some people have lymph edema and never find out why.  Is your kidney function ok?  Maybe something autoimmune going on. Maybe gallbladder or pancreatic stones causing the rise in bili.  Just some thoughts, Could be they biopsied  a portion of your liver that is not affected by what is going on. Have you had an ERCP? That may tell you why your bili is up. Just some thoughts. Good luck...Leah

[Marcia2202]

Just a thought, have you checked if it might be some kind of rheumatism, arthritis... gout ... Have you done some urine tests? Did your doctor check for uric acid?
I hope you'll find out what's wrong with you.

[joachim2007]

hi, thanks everybody for the responses and inputs.

* to Hector *

what made me think having liver disease was mainly the bilirubin and bile acid issues. Also, when i read patient stories of people with liver problems, and i read their symptoms (fatigue, feeling like hit by a truck, itching, etc), perhaps even read about dismissive doctors, then i instantly think, oh that's exactly like me..!

With the docs it's like that. Doctor of internal medicine first told me "no no you don't have liver disease". He, however, agreed to refer me for liver biopsy.

Afterwards he says: "well, all ok. of course i was not sure, as your symptoms are really looking like liver disease, but now we know for sure it's not".

Or: one doctor tells me "no your hands are simply a bit red, that's normal, it's surely not parlmar erythema". Then i see a professor of hepatology. He writes a letter that he thinks i do not have liver disease "at the moment". And just as a side note, he adds, that i have bilateral palmar erythema, but "no other stigmata of liver patholgy".

Or, i tell the doctor about my itching problem and my suspicion of liver disease. He laughs and says well i will show you it's not liver disease, it's only stress. He takes bile acid test to demonstrate i am worring about nothing. Then the bile acid vales come back 3x fold elevated. But yea, my liver biopsy is ok, so the bile acids, let's just forget it.

This is kind of the way my diagnostic process went last year :-(

what i also do not like are my lowish platelets (around 200) and my lowish QUICK value/INR (80%). Never got an explanation for that. Congenital, i don't think so. My sister has well over 300 plateletes and my dad's INR is 100%.

Regarding liver disease in general. Indeed i do not wish having it. But i thought in case i have it, i need to act very fast. But thanks for your assessment that i might be barking up the wrong tree. To be honest, i have posted here in the hope that i will be told that.

~~

*  to meki *
thanks also for your (indirect:) assessment. Much appreciated.

~~

* to MerryBe *

thanks a lot about the diabetis / endocrinology hint. I will do that, in addition to following Hector's advise of seeking a differnt doc of internal medicine.

Also thanks about the NASH + AIH hints. I believe have been tested extensively for both, but of course if i would be 100% convinced that nothing was overlooked i would not have felt the urge to post here.

The hep tests have all been repeated in 2007 and 2008. Even had my PMBCs and my liver tissue sampled with PCRs for HepB+C. However, what worries me is what if there is a mutant of Hep C out there that's not picked up by tests? On the other hand, in that case, why are my liver values not constantly raised, and how could i have so strong symptoms without having visible damage in my liver. So, this kind of reasoning also makes me think that i might be barking up the wrong tree indeed.

Regaring the swelling:

- it starts on the feet along the shinbone. Not visible, but when i touch it, it feels enflated. (Doctor confirmed it but would not comment or act further.)
- around the ankles it feels as if there was fluid. When i walk the street, i feel like having two airballons filled with water in my lower legs.
- I have not (yet?) those typical "pitting" effects of a pitting edema, ie. when i press my thumb onto the foot, no real curb is left
- However when i press my fingernal or a cent piece or a lineal onto my lower legs, i easilty produce curbs which stay for a minute.
- It hurts and aches. Sometimes more sometimes less.
- BTW, i also think it affects my hands. For example, when i am long on the phone (say 1 hour) my hands are feeling very strange and unusable for half a minute. Also, when i push a door, i feel pain, as if the composition of tissue in my hands/palms would not be right anymore.
- it does not get better but worse. No matter how well i care for proper diet. (i eat totally veggy oriented, zero alc, zero zigarettes, i am not overweight)
- AFAIK, there is no family history of edema. ((But I do not dare to ask my mum, as she would die because of worry about me.))

~~

* to kittyface *

also thanks you, for your input. Indeed, glucose issues hav been on my mind quite some time, but tests have so far not confirmed my suspicion.

thanks for taking the time to help me with your assessment. I am really grateful for it.
Joachim

[kittyface]

Merrybe is right about the diabetes -- I had mysterious swollen ankles before I was dx'ed with diabetes and now that I'm on insulin no more swelling.

Kittyface

[merryBe]

I'd see an endocrinologist, swelling, dry and ithcy ankes belong to several conditions, most commonly diabetes.

I'd want to suggest you test again if 2002 was when you initially tested, lots has changed in sensitivity.

You may have also auro immune hepetitis for which there is no test, or simple NASH which can also   begin  with small changes in labs. Autoimmune is harder to test for an prove, Nash, if caught early can be reversed....and just eating a lot of meat and junk food can give that to anyone. Anyway, it may be your liver is warning you of needed dietary changes,
I would want to know the sweeling issues, and family history there.

[meki]

I am totally with Hector on this one...

Excellent advice. EXCELLENT.

Meki

[HectorSF]

In a sentence...I would find another doctor. A doctor of internal medicine or general med doctor who can at least point you in the right direction.

I have to ask myself why your doctor has continued to do so many liver disease related tests with no indication of liver disease? Most insurance companies would not pay for these extensive and redundant tests. Two liver biopsies within 6 months, an endoscopy?

What ever made you think you had liver disease? Swelling of ankles and feet and itching are symptoms of ADVANCED liver disease. Stage 4, cirrhosis. Which usually takes many decades to develop. You are stage 0.

You say "In 2002 I had risky contact with IV using girl". You mean blood to blood contact? Do you know for a fact that she had a form of Hep? That was six years ago. Your blood tests would indicate that you were exposed to a Hep virus long ago. Your blood test indicate you were NOT exposed to any form of Hep or HIV. You are lucky. In the future I recommend being more careful about who you choose to "share things with". Retrospectively(?) diagnosed as "undefined self limited hepatitis". Again, your blood results show NO indication of being exposed to any Hep virus!

I think you need to find a health care professional to help you find the root cause of your symptoms. I think you have been barking up the wrong tree for a while and have ended up going round and round in circles. Be grateful for not having liver disease. It is not something I would wish upon anyone.

Best of luck in figuring this out.

Hector