MAN! I've been posting on about every forum on this site! I stumbled across this forum, and I think this could be my answer, I HOPE!
About 2 years ago, I was diagnosed with type 1A Hep C, have had a biopsy, and they constantly check my enzymes, I am still at a stage 1 even though they think I contracted it about 25 years ago. But I have an amazingly high viral load, in the 17 millions! They have been doing MRI's every month because they have found some "spots" on my liver, but they say it's not cancer, they don't know what it is. Although, I did have a "tracer" in my blood that said cancer, but they are still telling me "no."
Anyway, when I was diagnosed, everything in my body started to go whacky!! They said I had hypothyroidism, then I gained 70 lbs! in 6 months! (I HAVE ACTUALLY DONE THIS TWICE BEFORE IN MY LIFE, AND THEY DIDN'T KNOW WHAT IT WAS THEN, EITHER). Then, I had to have my gallbladder out, then they said I had high blood pressure, then an asophogeal stricture, then paranthesis of my stomach, then HORRIBLE GERD, so bad that I take double the amount of meds. Then, they said I have a hiatal hernia, and my esophogus closed almost all the way, so they had to go in and "stretch" it, then they said I have a "stiff" heart, and I get heart palpitations, rapid heart rate (they don't know why), edema, I'M EXHAUSTED all the time, I have brain fog, I have RLS so bad that I had to TRIPLE the medications, and I have it 24 hours a day, and now I ITCH all over, it is driving me insane.
I have noticed that a lot of these symptoms are due to autoimmune hepatisis, can this occur with Hep C? And who do I go to now? I have been to 5 endocrinologists, 2 cardiologists, am seeing the best hepatologists in the country, (and they haven't said a word about this disorder???), and my family doctor. EVERYONE says there is a problem, but no one knows what it is!! I also am now pre-diabetic with high blood pressure. I have a lot of weight to carry, but my stomach is extremely extended.
I am truly sorry you have so many problems going on. The thing that I know most about this is, if you have AIH, the biopsy should have told them so unless, you have developed it in the time since. Do any autoimmune diseases run anywhere else in your family that you are aware of? Does not your hepatologist want you to take the treatment for the HCV? With your enzymes being so high, I would have thought he or she would have wanted you to start treatment unless your liver is not showing damage from it?
If I can be of more assistance to you please let me know. Jody515
I never really knew my family, so I don't know if autoimmune diseases ran in my family. No, they don't want to start treatment for the Hep C because I have depression and severe complex PTSD, (I'm being treated), but the medication makes depression even worse, and can actually make you suicidal. Plus, the fact that I'm at stage one means that they don't want to start treatment. They are givine me MRI's every months to watch the spots on my liver, but so far, I know nothing.
I should check out the autoimmune disorders because other people have told me that it sounds like an autoimmune disease too. Thanks for responding.
If they are running MRI's on you every month & your enzymes aren't up, in all likelihood you do not have AIH. Take it from someone who has been there, I had both & the AIH did great damage to my liver before it was known I had anything at all. It was much more active then the HCV was & I had to take treatment for it for over 3 yrs prior to taking the hcv treatment. Yes, the treatment can & does hurt you emotionally & I had to take meds for the depression from it but somehow I made it thru & I know you can too if it becomes necessary.
I am so sorry about your family & your losses with them, but you know what, sometimes, rarely, but sometimes that could be for the best just depending.
I truly am sorry for all your issues & if you need a friend, I am here. Jody 515
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