Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hi all, went to hospital yesterday and saw two liver specialists.They want to give me a liver biopsy because of how bad im feeling. My ferratin level is down to 632 and Iron sats are at 25%. Liver enzymes were all within normal range and I thought this would be good news but they said not necessarily. They seem to think that the Haemochromotosis is not whats causing the problem but something else. They also said I wouldnt be feeling this poorly with levels that low.Any feed back would be appreciated. X X
What will they do (either way) with the results?
as is zz i am confused too or would that be three. oh darn now i have to take off my shoes, ran out of fingers to count!! well i have to go back to work. so take care and try to feel better. dc
HAVE YOU HAD YOUR "PSA" CHECKED. IT IS THE MARKER FOR CANCERS. ALSO HIGH WHITE BLOOD CELL LEVELS WILL INDICATE POS. INFECTION. OK YOUR 30 SECONDS IS UP. THAT WILL BE .25 CENTS AMERICAN....
MY WIFE SAID YOU WILL GET USED TO MONKEY HUGS. AND I AM FLEA FREE......GOT ME A FLEA COLLAR!!! OR WAS IT THE COCANUT OIL THAT RID ME OF THOSE PESKY CRITTERS?? HAVE TO CHECK WITH ZZZ.. HOW BOUT IT Z IS THAT HOW YOU GET RID OF YOUR FLEAS!! HA (WHISPERING, I THINK SHE IS ASLEEP) BE WELL ALL
Nic - I had just been diagnosed with HH when my doc suggested a biopsy. My Ultrasound and MRI's indicated that my liver was enlarged. The doc said that with the biospy they could both determine the amount of iron (they have to specifically ask for that) in my liver and also rule out cancer (which thank God they did). I had the biopsy in December. My doc is a Hematologist not a liver specialist. Last month I asked him about seeing a liver specialist since I do have some liver damage from the HH. He actually didn't recommend it right now because he feels that the damage is not too serious and he said that the liver doc's tend to want to do tests (biopsies) rather than sit down and spend time with their patients. Up until about 7 - 8 weeks ago I never felt anything in the area of my liver. Now I have discomfort in that area (under the front right side ribs). I notice it more if I have had a large meal or have overeaten during the day. I have heard that especially with an enlarged liver that the when the stomach is quite full, it can put pressure on the liver. So, anyway, how poorly are you feeling? Are you feeling worse than when you were first diagnosed? We all know that unfortunately not all of us are going to see our symptoms improve once we are de-ironed, and you still have a way to go. The doc's should know that. Are these doc's HH literate? What do they say they want to look for with a biospy? 632 is much lower than many people, but it is still high enough to make you feel very poorly! Sometimes I truely dislike doctors!!!
It's a good thing that our YREKDAC is is at least flea free, because if he is really practing to be a stergeon, he is going to be quite slimmey and stinkey!
Water!? you mean like taken a bath type water??? oh my! that just won't do at all. that would mess up my fur. oh i mean hair...
oceans in california? who woulda thunk? I live deep in the forests of northern ca. by a really big mountain. where aliens have a hidden base....
while having a bad attack under the rib i have noticed it usually did accompany a meal. hmmmmm? thats why my wife thought it may be gallbladder. went thru 2 ultrasounds xrays etc and all looks well except at one point i had 2 small stones. i passed them to zz but i think she passed them back... gee sis i love you too.....
when you walk does it feel like a water balloon under your rib and every time it stretches down it hurts like holy hell? i well i never heard of that..... just kiddin.. thats what it feels like too me.
zz how do you get canola oil out of ones fur/hair?? good night my hh friends . sleep well especially you zz. ta ta for now dc
YR, u should try DAWN dishwashing liquid... "gets the grease out"! and if not, try powdered laundry soap, then go outside & have the wife or grandkids hose you down:) Are you a banana peeler at the zoo? a little APE duty, I mean.. KP duty? Yeah, I know, I know, you work in a lab... it HAS to be a University teaching hospital and you're in the animal (primate) lab. They use you for experiments! hahahahahaha OH, and isn't a cancer test, serum blood test, an AFP? Alphafetoprotein? That's what I asked for & it came back good:)
nic, I agree with michael, why wouldn't they do non-invasive tests FIRST? No chance of infection or bleeding out with those first. Don't want to scare you & neither thing happened to me & they usually DON'T happen BUT it can happen.
I think an MRI would show the iron better than a CT scan -a "ferri scan" or maybe a squid (think squid is the name of it).
My liver has been uncomfortable with some twitching last summer but didn't last over 3-4 wks. It may have something to do with eating a meal b/c I noticed it more then. too. I did think my stomach was pushing my enlarged liver and it was really noticeable if I bent forward a little or a lot.
OK...my sleep!! I slept from about 9:30 Wednesday night until 6am Thursday, then went back to bed 4 hrs later. Got up at 3pm, then back to bed at 6pm. woke up at 11PM! OK, let's recap... 8.5 asleep. 4 hrs awake. 5 hrs asleep, 3 hrs awake. 5 hrs asleep. OK, so that's 18 hrs asleep & 7 hrs awake over a 24-25 hr period?? Then, UP ALL NIGHT and finally to bed today at noon, then... slept till 8pm! What am I gonna do??? I slept thru my phleb appt yesterday!! Thank God my Dad likes peanut better, grapes, toast, walnuts (stuff I leave on the table for him to snack on) or he wouldn't have had much to eat... just 1 meal each day for the past few dayz.
And your deer could be a DOE or BUCK :)
yeah, I've been awake all night...........AGAIN!!
no zzzzzzzzz's :)