Swollen ankles, re; could it be related to Hep?

[susan400]

I've been having swollen feet&ankles lately. My mom, who had been seeing me every day, noticed it first. Silly me, I thought it was just that I was putting on weight since I was off of treatment&eating more. On Easter morning, my feet,ankles,lower legs,even my toes were super swollen, so I noticed it.  So, we ended up going to the ER. (What a big waste of time that was!).  Their final diagnosis, 'bilateral pedal edema'. They never did give me a possible cause other than, 'you've probably been on your feet too much'. They said, "stay off of your feet, elevate them,avoid salt. In the first place, I've never been a big salt eater. I don't salt my food in restaurants, don't salt my salad, etc. I can count on 1 hand how many times I've eaten potato chips, doritoes, etc.,in the past year. Third,my last few blood tests have showed me to have a low sodium. These so-called professionals in the ER, really didn't do a good job with me at all. Just doing normal walking in between resting, should not make your feet look like balloons. Anyhow, they never listened to my heart, never even touched my feet to see if they were edematous. They just glanced at them real quick& said, "what did you do to your feet, they're swollen". DUH!!!   I've never in my entire life had a problem with fluid retention,it amazes me that they didn't seem at all concerned with the fact that I had Hep C, didn't check my liver/upper abdomen to see if it was extended,they didn't give me a diuretic & basically didn't do anything. Tell, me what you've experienced,have any of you heppers,dealt w/this? Susan

[nanniegea]

I too have been dealing with swollen legs and feet. My doc had put me on a blood pressure med/diuretic and it seems to have helped a lot. There are things going on with my body that for years made me wonder what was going on and now that I know I have hepc I wonder if it's all connected. I am genotype1 with cirrhosis, stage 2 grade 4. Right before I was dx with hepc I spent a whole year dealing with a h-prylori infection which made me feel like a balloon was blowing up inside of me. I had severe burping and had to really watch what I ate. Since I took the antibiotics things have calmed down but have not disappeared. I really do believe it is all connected and that most docs don't/won't consider that, instead they try to blame it on everything but. After we all educate ourselves about our disease I bet we could tell the doc's a few things that they didn't know!! I wish you all the best in dealing with this and pray for svr for all.

[LvdByGod!]

susan, let us know what the dr says...i'm in the same boat with this question but don't see the dr for 3 more months now...so i'm curious if this warrants immediate attention...

isn't it uncomfortable? i hope it's not asceties!!!  my stomach feels so full even when i don't eat and it's uncomfortable...my legs and feet are bloated too. i just had blood tests done so i will find out if anything got worse through those i hope...my last ones in january still show compensated liver disease...ie..."somewhat normal hepatic functions"...although my ferritin level is 800+ so that can't be good...something to do with high iron level i never had it tested before cause it showed no iron on biopsy stain 3 years ago...dr said nothing at visit and i hadn't seen it on test...any one have a clue about feritin...is it caused by hepc or damaged liver or is it something all together diff like hemchromatosis? is there a way to tell the difference?

as for the peripheral edema...he said it was from the sunburn i got on vacation...i won't let him get away with that though if this keeps up...i keep a tight reign on my drs...this is my 3rd dr. and i actually saw his partner this time and not the one i like...so perhaps his partner is not with it like he is. i need to inform my regular hepatologist to find out. this one also told me it's time for me to get off tx!!! 3 months after my dr said i should go on for 9 months to a year after i clear...so i bit his head off...oooppps! i think he'll be okay.

sandi

[holding_on]

I've had swollen, red fingers for 3 years.  A few weeks into tx (started tx in June 2004), the swelling went down.  Then about 4 months into tx, it came back and has stayed.  I don't know yet whether I'm SVR, so I can't say whether it's directly related to HCV.  I've also developed spider veins in my fingers.  As far as liver damage is concerned, I got a biopsy 2 years ago, stage 1, grade 1, so I doubt it's due to "severe liver disease."  Not in my case, anyhow.

[BostonGirl]

Hi Susan;
       Do you experience more pain in the cold weather or any change of skin color in the cold weather? It's another sign. My skin turns purple & blueish red in the winter.    

here's a site with some good info on cryoglobulemia     http://dynamics.org.cryo/ Hope this helps.

Loved by God > I have never had any edema in my stomach, but I do know that it could be from liver damage. Something called Ascites?
( sp? ) I would definately see a specialist about that.

God Bless ((((((((( Sue )))))))))

[LvdByGod!]

i have edema right now too and got it a few weeks ago...it has only resolved a little...

i gainned 13 lbs from fluid "overnight"...and was all puffed out...i also feel full in my stomach...i did get a sunburn at that time but i have never had this happen before and the sunburn is gone but the edema is still there. i have only lost a few lbs of it so far...should i be concerned? I DID READ THIS CAN BE ASSOCIATED WITH SERIOUS LIVER DAMAGE...

MIKED, I HAVE A NOTE FOR YOU AND BOARD ON THE HIGH IRON POST BELOW...

THANKS, SANDI

[susan400]

Sue,

I've never been diagnosed with any stomach edema related to my liver, but I have felt extremely bloated there and had that pregnant look a lot more in the past couple of years.  Yes, I do hurt more in the cold.  For as long as I can remember, I've had to wear socks to bed because of cold feet and I get cold fingers.  I am scheduled to see a new liver doctor next Wed., 1 week from today.  He's actually just a gastroenterologist, not a hepatologist, because they don't have that many hepatologists around Central Florida.  But, for years, I've tested to have high CMV and EBV viral responses, or whatever they call that.  I still wish I could find a good, definitive definition and list of symptoms.  I think that I'll speak to the gastro. about what this is all about next week.  BTW, in the ER they did do blood test, urinalysis and a chest x-ray, but they never touched me, didn't listen to my heart, didn't palpate my abdomen, never even touched my feet.  Maybe this is standard, but I thought it was strange. My back is literally driving me insane w/the agonizing, constant pain.  I'd love to know if this is all related.

Take care.

Susan

[susan400]

Hi there Boston Girl a.k.a. Sue.   I never have been able to get much information on cryroglobinemia.  When I search on the web, I can't seem to find a clear cut definition, list of symptoms, etc.  Maybe I'm not searching right.  That certainly sounds alot like me, what you describe.  I remember my gastroenterologist, several years back, telling me about one of his patients who had it.  He said that this patient had to stay on treatment because every time he came off that he developed severe cryroglobinemia.  But, my doctor didn't have the time to sit there in the office and explain it all, which I can totally understand.  I just wish I understood what was going on.  Now, I'm wondering if this back pain/herniated disc could also be related??  

Susan

[BostonGirl]

Hi Susan;
       I am sorry that your ankles are swollen, I know it can be very painful & very uncomfortable. I will share my experience with you as far as the edema issues.

I've had swollen ankles ( and calves ) for many years. I am on the thin side, eat very healthy, and always exercised every day. =So I know that diet & weight is not a factor for the edema.

When I first went to my GP, several years ago, he told me to hold off on salt and wear these old lady stockings to help with edema. The stockings didn't do squat. My sodium levels are usually below normal too, so the salt is not an issue.

Anyway, about two years ago, the pain in my ankles got very bad. I had to use crutches & a wheel chair to get around. The vessels all around the ankles began bursting. ( that was two years ago ) Recently, I began getting small purple spots on the insides of the ankle joints. My Hepotologist says I have some deformities in one of my ankle joints, as well.

I tested positive for cryoglobulemia last July and was told most of the vessel damage is probabaly from the cryoglobins. They still will not say that the edema is 100% Hep related or if it's cryo related. They say there's a slight chance. But I think it's all connected. I do not have any liver damage. They keep checking my kidneys, but my kidneys are fine.

I am going into week #8 of TX and the swelling in the ankles is actually going down. I noticed one ankle & one calve a lot smaller than the other ( hopefully the other one will catch up soon ) LOL!

I would keep a close eye on any type of edema. Do you have vessel damage as well? Have they checked your Bun & Creatine levels? Those tests are both good indicators of healthy kidneys. Sometimes when there's a kidney problem you will get a lot of edema in the legs & feet.

I would say go to a real Hepatologist and have him run a bunch of tests. Don't wait like I did. It's been many years of this and now they say I have permanant nerve damage as well as major vessel damage. Hope this helps. Good Luck & God Bless You, Sue