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Marji - wow - I'm still digesting all that information - thank you! I probably do lean towards the metabolic syndrome - my genetics have blessed me with chronic badly elevated cholesterol no matter what I do with diet, etc., and I can't seem to take the statins safely. I did have a heart cath done in 2005 and it was all clear - which was a relief, but not a guarantee. And I have always craved sugar sugar sugar (preferably chocolate). I'm better at managing it now - but it's hard. The rest of my diet is very healthy. Fasting glucose tests are always fine, but I don't suppose it would hurt to monitor once just to see what happens with the blood sugar meter if it isn't too expensive.
I've had hepatitis panels done - initially in '97 and again in 2005 with the fever/flare business. They were always negative except for one strange thing....in '97 the doc told me I obviously had had Hep B vaccine because I had antibodies, but I never had. She said I must have been exposed at some time, then - but I really never had symptoms - so it's a mystery.
Anyway - if it wasn't causing the problems then, I doubt it is the problem now - but you've convinced me to check into it some more with the docs. I see the rheumie in 3 weeks.
Hippi - what is the test you are referring to, to make sure I don't have "lupus of the liver" - and what is that exactly? My LE's always go back into a good range as well. Do you have a CRP done when you are in that kind of flare and are testing the LE's?
I know there is plain old "fatty liver" that can cause the fluctuation as well - and all one can do for that is weight loss, basically. Also - I've been getting acupuncture treatments and was told that a glass of water with the juice of at least half a lemon in the morning is a great natural and mild liver cleanse. I'm going to start trying that. (along with weight loss - I've managed about 10 lbs this summer - 30 to go!)
Thanks for the help!
I really appreciate all the information you've provided. It's a bit daunting and scary while reading through the links you sent, to think of yet another source of problems, but I think you're right- it's something that needs to be investigated. My Pcp did tell me that exercise and weight loss were the only things to do about the fatty liver if that is what causes the fluctuations in the LE's. And I think because while I've been his patient the LE's only jumped to triple the nl's one time during the last flare in July - he hasn't been very alarmed by the 2-5 points over the top of the normal range seen occasionally on other tests. He is concerned about the elevated cholesterol - for which I can't seem to tolerate the statins, and is a genetic thing in my family along w/ heart disease on my dad's side. He also defers to the rheumie, who tells me to have my pcp monitor the liver......aaacchhh! You know how this goes.....
I see the rheumie in 2 weeks. I plan to talk to her about all this. Like I said - I have had hepatic panels run - but nothing shows up that evokes further testing in that area. Probably the hardest part will be finding a good hepatologist. I don't know of any in my immediate area - but I have to travel to the rheumie as well. I'll keep you posted, Marji - wish me luck getting all my questions answered at the rheumie appt! I really do appreciate all your help!
Marji, I am sorry that you've been through so much with your liver problems. It sounds pretty awful. And I appreciate your strong warning not to ignore signs and symptoms, or to be brushed off by my pcp. I promise you I won't. But I feel I need to reassure you a little bit....I don't have persistant elevated liver enzymes - they are generally related to flare increases and go up a little bit....and then go back down into an excellent range. I've had 3 occasions (over the last 11 years) in which they got a good bit higher - but these were during incapacitating flares that included fever, headache, joint pain, yada yada - that lasted about a week - and within 3-4 weeks the LEs were back to normal, along with everything else. They are not consistently elevated.
Also - I was told in '97 that I had Hep B antibodies - which would indicate that I'd either had the vaccine or had developed antibodies on my own, possibly from an unknown exposure. But it was of no concern to the doctor because I did not test positive for antigens - which meant, she said that I had no sign of active Hep B virus. And when I had another hepatic panel done in 2005 - since the surface antigens were all negative again for hepatitis A,B,C - the lab canceled the test for antibodies, indicating that without antigens - the presence of antibodies was immaterial.....which aligns with what the doc said in '97.
I did a little researching on Lupus and elevated LE's. One of the things that came up was this: "Liver enzyme elevations often occur early in the illness in the absence of therapy. Aspirin treatments may induce such elevations. Chronic hepatitis is only occasionally observed in patients with SLE." Because my LE's seem to raise most specifically when I also have significant fever I've been controlling with Advil/Tylenol - this does seem to apply to me, too.
That said, I still fully intend to discuss this with both my rheumie and my pcp, and make sure we are monitoring it closely. I do (now) understand the dangers of PBC - and how it can manifest "under the radar" - and I don't actually have a lupus diagnosis yet - so again, Marji - I appreciate you sharing your concerns and experience. One gets very tired of figuring all of the AI stuff out - it's so hard to pin down with so many overlapping symptoms and to deal with so many doctors who are not alert to the various possibilities.
I hope and pray you will reach a turning around point and see great improvement in the next 5 years, rather than progression. I don't mean to sound trite - but I hope you are focusing on the positive things in your life. It's easy to get down with all that pulls in that direction and while I don't think "positive thinking" is the answer to everything - I do believe we can choose to focus on the "half full" rather than "half empty". Please forgive me if I'm sounding preachy - I don't mean to - it's just that I'm working on this myself, trying to focus on doing all that I can do, observing and being conscious of the pleasures that are available to me each and every day (especially the little ones) .... and finding room to accept the limitations that are also a part of my life, without projecting too much down the road. Fear is a huge joy and energy zapper.
Thanks for the insight - I am paying attention, and I'll keep you posted!
Post Edited (cured4real?) : 10/28/2008 12:39:43 AM (GMT-6)
I'm so glad, Lucy. Here are some gentle non-liver crushing ((((hugs)))). I guess I see a little of myself and what I went through in you and what you are going through and just don't want anyone to get brushed off like I got brushed off and since so many people can't get to really great hepatology centers, to lt you know how glucophage has saved both me and my father's lives literally, and how I was literally dying before I found a doctor wise enough to test and prescribe it. Hopefully soon, it will be standardized enough that all docs know and don't hesitate to treat fatty liver with medication as well as trying to get us to lose weight, which is hard with fatty liver since its a metabolic problem. There are dietary things too, special diets that help alot too.
Take care and I hope everything goes alright. I'm a fine one to be urging someone to mention something to a doctor, I have a list as long as my arm right now and its so long I'm afraid to mention any of it for fear the doc will run out on me! Heck,I would! Take care and know I care and let me know how things go. You know fifteen years with severe liver disease and other problems and I have pushed for better testing and even with the right bloodwork indicators and beind seen at atransplant center I'm having trouble getting the tests done that I've been fighting for for fifteen years. So I understand. If I had superpowers I'd send them your way. I hope all goes well for you Lucy and I'll pray that you get red carpet treatment.