CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Momwriter.......had I passed out, fainted, or knew what was happening I could completely accept...Hey shit happens"...............
But none of that.......i was standing in the kitchen making friggin sandwiches........."REALLY".........how the hell can you do that and not remember..............
Although my son who was here when it happened stopped today.........he told me while I was making the sandwiches I asked "what the hell are those chips on the counter".......he told me that earlier I had told them what the chips were (Old Bay Chips)........he said I looked at him and said "something isn't right"..........with my hands on my head............then said it again....and he told me to sit down........now I remember that happening.........something clicked in my head today when he told me that and showed me what I did.............I vaguely remember it.........maybe the rest will eventually come back......who knows.0 -
I don't even know what "Old Bay chips" are....
You know, you just MIGHT have snippets come back like that!
I found this....
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Wow Good afternoon Crazies.
I was busy for a weekend in CT! I preempt my entry with the caveat that I am typing from the memory of what I just read and what I read yesterday and I am tired so I will do the best I can to say Hello!
Katy that's a lovely set of photos, how are you feeling today? More in your own rhythm/space? are you still enjoying leftovers or are you on to new kitchen adventures?
slow I am so sorry you are experiencing such an intense flare. Thinking of you and hoping it passses swiftly. Even the mayor needs a break from time to time.
Tom will you be stepping in? And I feel like I lost track and apologize, but was there any outcome with the pain management visit? Did it happen?
Poppy- it's sad when children and young adults don't get the support they need /require from elders. It sounds like he really needed an adult to HEAR him. hope you got some rest.
Sweet and strong Ducky how are you today? It's amazing how a HA and BC seemed less unsettling for you, but I believe you hit the nail on the head- 'The unknown' is always the hardest place to sit and be present. You are a strong and wise woman and as Chevy also suggested- even though you want those '30 minutes back' don't lose your present moments looking back. Do you get Bobby this week? Sending you a big hug.
Chevey that is quite a life story you shared back a bit- the piece about memory and how sometimes things flood in and the soldier part. Our brains do a lot to protect us so we can survive.
Octo you've been gone and now you are back with so much to share. First YAY for rain. Second I believe the blues upon returning home are normal under the most 'benign ' of circumstances, but you, like all of us here, have extracurricular life circumstances adding more weight; balancing work with life and changes in the body and how it all effects the psyche. It is a lot. and it's life and it's so good you were able to leave a lot outside the door of your sweet cottage - that beach looks lovely. and look today brought rain and hopefully some washing of the debris from your heart.
Hi Momwriter nice to see you and that was a thoughtful weigh in for Ducky to consider. It is important that we, act as our own agents and make decisions that are comfortable for us to live with!
PTS what ever happened to the candy? and how is the back these days?
Shorfi how are you? did you go out with the ladies?
Notagain did you speak with BS yet?
Rain I HOPE STRONGLY that you are getting some results/solutions today for your insurance needs.
Rosex hello! had my first triple dose of H today. all seems business as usual thus far.
Sula! nice to hear from you and virtually participate in your festivities.
So I had the first triple dose today, feeling relieved I'll be on an every 3 week schedule. Kind of a funny moment happened while we were there. My MO has a late day on Mondays so I only see him every few weeks. The NP is who usually sets me up and takes vitals/reviews the blood draw etc and she was out today. So another associate MO was to have the brief visit with me; one whom I had not yet met. So they bring us to a room ( we have been lucky to often get a private room) and we are waiting and then Dr Chan comes to the door. He pauses at the threshold and then comes in and introduces himself and shakes our hands. He then pauses again and says 'I'll be right back'. as soon as he leaves a thought flashed through my mind. ' he thinks he has the wrong room/ he is double checking the chart' I don't know why I thought it but I did. He comes back like 10 minutes later. He asks how I'm feeling we talk about a few things, small talk. He assures the triple dose will not have any more ramifications than the weekly single ( of course as best he can). Then he says, " I have to tell you I thought I had the wrong room. looking at your chart (probably referring to the st IV situation) I needed to be sure I was looking at the right person. It's funny because I could tell he was seeing something beyond what a western doctor looks at because he immediately commented on my spirit. And I know deep inside that is the most vital thing for me. Anyway I guess I repeat it cause I needed to say it out loud because last week was rough and I had moments of feeling like I was losing my spirit. Not my spirit to LIVE but just about how I am going to navigate living this new reality! Anyway. thanks for listening as always.
Don't know what I would do without my sisters in CT
xx
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(((((((Gaia)))))))))))
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Gaia............My DH had to make me go out with the girls and we had a lovely time. Had great Italian food and enjoyed the opera singing by the waiters and waitresses. Think I had a little too much wine with dinner (2 glasses). I was sooooo tired this morning trying to get ready for work, Can't wait to get home....Take care my friend....
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Christine- you have an amazing spirit. I can see it and feel it from here. Thousands of miles away
I am glad you got some independent confirmation though. That's always nice. Try to remember when you feel it yourself the least, it might be because you lent it to someone for a little while. But it belongs to you and will always ALWAYS come back.
I feel ok. Made myself walk between rainshowers today. I'm plodding. Slogging.
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Ducky- I'm glad that some bits are coming back. I hope that is just the first in a 30 minute revelation. Have been thinking of you. So sad you are sad and frustrated. Thinking of you.
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Hi Ladies, new to this thread but not new to "crazy town"...just looking for some reassurance and positive feedback.
At my Oncology visit in September my liver enzymes were slightly elevated; prior to BC diagnosis I'd had high liver enzymes on a few occasions that were associated with either thyroid disease or undiagnosed anomaly. In those cases the liver enzymes returned to normal after a 30 to 60 day wait period, there were also liver ultrasounds to rule out other problems. The liver function was re-tested by my PCP in October; the AST and ALT remained somewhat flat (September #'s 72/87, October #'s 52/90 ~ normal AST = 5-40, normal ALT 10-65) one number decreased (AST), one number increased by 3 (ALT). My PCP suggested another liver ultrasound and Oncologist wants to order CT scan of abdomen and pelvis...ugh. I have no other pain, discomfort or elevated test results. My anxiety level has just jumped several notches to near distraction from work and personal issues. I realize that they need to be diligent but the numbers seem to be just mildly elevated...I've read comments where liver enzymes were 10 times normal so this feels extreme. Two questions; has any one on this board ever had elevated liver enzymes related to taking the Arimidex and/or have you had elevated liver function tests that turned out to be nothing?
Most of the time I feel pretty positive about a cancer free future but when these issues come up my mind automatically goes to a dark place...just looking for some reassurance that this can be as simple as a SE of the current RX or something inconsequential. I appreciate your feedback.
Peace
Mary
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gala, that is interesting with your doc, sounds like he is very intuitive
I just saw a TV show with an idea for left over candy and plan on making it to take to my pals place for Turkey Day. It involved crushed candy, some crushed pretzels and ice cream! like how bad can that be! it should use up a bunch of the left over
Back is sort of better or I am just dealing with it better, it really likes the pool so doing that often as I can
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evening ladies
Well proof of cyber positivity works got the all clear this morn!!!!PHEW!!!!!!!!!!!!!!!!!
Radiologist was happy all is normal,so just app with gyny tomorrow morn to follow up on cyst removal done few weeks ago and thats me putting it all away at the back of my head for as long as i can manage.
Thank you all for all your lovely comment and positive thoughts even though we are thousands of miles apart ive never felt more supported and close.
I will stay around here and check in and out to keep an eye on you all and hopefully lend some support back .
Xxx
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Hi Mary-
I have had a history of elevated liver enzymes. 3-5 times high normal off and on, mostly on, for about a year. This was the year before my dx. My pcp wasn't too concerned but I wanted to do something before chemo started so dosages wouldn't have to be adjusted or chemo stopped if they went even higher.
I also had had some arthritis issues that never got completely dxd, as we were in the middle of running tests when the bc dx was made. It was unrelated, apparently, as PET and CT scans did not show anything but possible fatty liver which had been noted during the sx to remove my gallbladder about a year before. But I had gotten far enough researching both liver cleanses and holistic arthritis remedies (because of the liver enzymes already being high)
So I started eliminating every single medication I was on, one by one. I also started drinking the juice of a fresh lemon in hot water every morning. The AST and ALT came down. They didn't get into normal range until I stopped the last med, gabapentin, and then they immediately straightened out and stayed within normal ranges all during chemo. And mostly since. A single test showed slight elevations once since chemo.
All of this may not help you but I was mystified and very worried about it. I never realized that certain drugs, even OTC drugs, can tax the liver. Drugs like Tylenol can be especially taxing. Not everyone's liver acts the same way so often these kind of effects are dismissed as "anecdotal".
Because I would always rather be trying something than sitting around waiting, that's the course I took. Perhaps you take no prescription meds or OTC meds except the AI. You could try temporarily stopping anything you can reasonably stop, that is not life threatening, for 30 days. You can try the lemon simultaneously. Lemons are good for you anyway and are high in C and potassium. Then test again.
I have heard people advise against other types of liver remedies like milk thistle, as you don't want to cover up symptoms that are legit and could lead to a dx of something that could be fixed. I was surprised at how lackadaisical several of my docs were about what they called "slightly elevated" liver enzymes. Once I became a cancer patient it became much more important for me not to have any side issues "muddying" the water. So I treat my liver with kid gloves now. That means no Tylenol or Vicodin ever, gabapentin/neurontin and a list of other meds I suspected were problems. Everybody is different. But like I said I got an education in my case.
Nobody has ever taken it as seriously as I have and I probably sound like a nutcase. But I decided to tell you this in case any of it is helpful. If it's not, I'm sorry, and I am sending a hug too. Maybe that will.
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I had a mastectomy in June (wanted to avoid radiation). Now within the last month I felt what felt like a BB about a 1/2 from the mastectomy scar. I also had a mastitis type infection for the 3rd time in the past two years on the remaining breast. I guess that is not common for women in menopause. So I had an ultrasound today for the lump on the mastectomy side and a diagnostic mamogram on the other side. He said they noticed more calcifications under the nipple than there were in May so they scheduled a biopsy for Thursday. They thought the bump by the scar was in the skin and just said to watch it. My insurance company is going to hate us! My husband had a stroke in March and I found out I had cancer 8 weeks later. 2015 has been quite a year but I guess we have been fortunate considering how bad it could have been.
I wonder how common it is to have cancer in both breasts...
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congrats noddy!!!!!!!!!
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Noddy- great news!!!! So relieved for you. Glad you will be sticking around. You can still be a "crazy".
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Marie- that's a lot on your plate for 2015. Screw what the insurance company thinks. So now you wait until Thursday and we will wait with you. And I suppose a couple more days for the path report. I am really sorry you have to be going through this again. I don't think it's that common but stay off Dr Google as there is nothing you can do right now about "maybe". Try to distract yourself and hang out here with us for a couple of days. We all "get it" here, and will be virtually holding your hand.
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Gaiaia... (Is that it?) Yeah, some of that stuff you just can't talk over with family members... that "Soldier".... He was staying at our house... I think I was about 7-8... But when "adults" tell you to do something, you are afraid not to... I would close my eyes as tight as I could, and cry..... I would then cry myself to sleep, afraid to wake up my Brother who was on the top-bunk..... It was a secret.... never to be told.
I never told anybody until one day walking out of my bedroom, about the same time as Marilyn VanDerbur talked about her Father molesting her, I stopped, and just started sobbing.... It all came back... I wanted to throw up... It was then I told my Mom.... like 30 years later... She just said "Why didn't you tell me then?" I told her I was afraid.... He told me not to, or he would hurt me.... And that's all she said.
So it was later on, when I was about 13-15??? in an Acrobat class, they dropped me on my head.... Amnesia, but only for about 8 hours.... But by then, maybe in my little head I had just had enough... So maybe I just lived through every day.... because I sure don't remember but a few incidents... Not even my graduation.... my best friend's wedding, and I was the Maid-of Honor!... Not until my folks moved to California, and I had met the guy I was going to marry.... And slowly without all the crap going on, and away from the life living with a drunk Father, and Grand-father, and constant fighting, I was ready to build my own life.... At least that's what I think....
No, I still don't remember my school years.... but like you say, something protects little kids... like that memory that came back, I think something triggers a response in our brain... and those memories come flooding back.... I didn't need to remember that.... but it came back... It fills you with hate, and sorrow, for that "little girl" who was hurt so badly.....
Amazing how we "come back"..... We can, with the help of God, make our own life, and learn from those memories..... And we protect our Daughter's like a Lioness! I can talk about it to my "friends" but not to anyone else..... And that's okay.
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Marie, I would ask to biopsy both. Just for peace of mind. I had BC in both less than a year apart. I think it is pretty rare, but you will want to be sure. Sending gentle hugs your way. Hoping for all B9
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I also have had issues with slightly elevated liver enzymes from time to time...it does worry me now that I have bc more than it did in the past I will admit. I did have Hep A a few years ago, and am not sure if that accounts for it or not....I try not to worry too much and avoid tylenol as much as possible. Should probably avoid it more like the plague. I also have cut way back on drinking in the past few years. MO did mention the slightly elevated numbers after my first visit, but said it wasn't enough to worry about, although he did advise avoiding tylenol. At the time, I was on no rx drugs at all (and the only ones I am on now are chemo related). So Katy, I am going to try the lemon thing. thanks! Having a bountiful lemon tree in my backyard, just coming ripe, makes it easy. Couldn't hurt. And you are not a nutcase! Keep slogging! Sending Hugs!
Gaia, I love your story. Your spirit definitely shines through all that you write and post on this board, so I know the doc could see it. Thanks for sharing some of that spirit with us. I hope the triple dosing goes well and that your SEs are minimal! Hugs to you too! and yes, thanks for the reminder that re-entry can be tough....
And hugs to all of you crazies! You are all in my heart!
Octogirl
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Jackbirdie....Thanks for responding with such a thorough explanation of your experience. It just really helps to hear of similar stories or when people have parallel examples so you can push the fear down and out for another day. I believe that this is a temporary uptick in the numbers but not sure why now but the idea of any test other than a blood test puts me in a tailspin these days. Other than the AI I take Vitamin D and a blood pressure med and a thyroid med, both long term medications that I was taking well before the BC diagnosis. I just started the lemon regimen but am doing it with cold water during the day...am not much of a drinker outside of a birthday or a holiday every now and then so that not an issue.
I will put on my big girl panties and take the test they recommend (CAT scan of abdomen and pelvis) just to rule anything out. I feel like I'll need to ask my oncologist how we deal with this in the future; how do we proceed with caution about elevated levels and the anxiety that comes along with testing...especially if the tests reveal nothing of concern. I don't know where the balance is? You are not a nutcase at all!! Right back at ya with the hugs.
Octogirl...Thanks to you too, the more stories like mine I hear the calmer I get. I need that right now.
Blessings to everyone for a good evening.
Mary
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The cold is getting better slowly. Doesn't help that the temps here haven't leveled out. One day it's warm and the next it's cold as it should be.
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Ducky,
I'm thinking this is really a case for Scully and Mulder... The missing time etc. I am so glad and relieved everything checked out ok... But the truth is out there as they say... Have you had any alien encounters??? Perhaps when in the cockpits with those pilots???? Since you've said no to ambien I trust there's no halt ion either as that stuff can make you throw up in Prime Minister of Japan's lap.
Anyhow.. I saw this card and thought of you
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Gaia..............No Bobby............I don't think they trust my health right now............but I understand.....my grandaughter who is a sweetheart along with her husband said on Friday she works from home 1/2 a day now so she said she will bring Bobby to my house along with her work, and I can watch him while she does her thing.................that was the last she said................
I wouldn't want to be alone with him if I thought for one minute it could happen again.........I did see him tonight at my younger grandaughter's Volleyball Playoff game......
It will be ok
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https://www.youtube.com/watch?v=7eia8qM80vY
For all of us here in crazy town and for everyone who doesn't know we are holding space for each other and for the human experience. ( even if we don't know that is actually what is happening)
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Ok Awkward posting moment
here it is again ( skip over ad.)
https://www.youtube.com/watch?v=7eia8qM80vY
hugs
RIVER These are the lyrics by Joe Simon
There's a river somewhere
Flows through the lives of everyone
And it flows through the valleys
And the mountains
Oh, and the valleys of time
Oh yeahThere's a star in the sky
Bright in the eyes of everyone
I know it brightens up the valley
And the mountains
On and the meadow of time[CHORUS]
Oh yes it do
Yes it do
(Yes it do)
Yes it do
(Yes it do)
Yes it do
(It really do)
There's a voice in the past
That speaks for the life of everyone
And though it speaks through the valley
And the mountains
And the meadows, oh yes
There's a smile in your eyes
Brightens the life of everyone
And though it brightens the valley
And the mountain
And the meadow
There's a short song of love
Sings through the lives of everyone
And it sings through the valleys
And the mountains
And the meadows of time
Ohhh, there's a river somewhere
Flows through the lives of everyone
And it flows through the valleys
And the mountains
Oh, and the valleys of lives0 -
So you think that worrying yourself crazy over test results is self-destructive and unproductive? Think again. Here’s an article from the NYTimes by the author of “The Positive Power of Negative Thinking” that validates my own wacked-out flip-side-of-Norman-Vincent-Peale philosophy: http://nyti.ms/1RpUHTK
Seems people who never doubt and are utterly confident that they have passed an exam (or, by extension, that medical test results will be favorable), and refuse to entertain even the thought of failure, fare less well than worry-warts. We worriers think in flow charts and always have a Plan B at the ready. If results are unfavorable, we know what to do. If favorable, it’s all the more sweet. But those absolutely sure they’ve aced an important exam or job interview, or that their medical test and biopsy results will be favorable? If the best happens, as they expected, it’s anticlimactic--a big fat “meh.” If things don’t go as expected, though, they tend to fall apart because they are thrown for a loop--they never made contingency plans because they refused to entertain the possibility of a contingency.
From the time my screening mammo report came up suspicious, I decided to worry. (Heck, I worried over both bar exams, and I passed. Every audition I sweated over, I passed; every one I figured was a snap, I failed). But I worried constructively. In the back of my mind was the thought that if all turned out fine, weathering the uncertainty would make me stronger. In the foreground, however, the wheels began to turn: “if X happens, I had better prepare to do Y.” People kept warning me “don’t get ahead of yourself--most mammograms are normal,” then “most diagnostic mammos don’t need followup ultrasounds,” then “most ultrasounds don’t result in biopsies;” and then “most biopsies are benign.” Right. With each step of the process, the odds of a cancer diagnosis rose, and I was not about to kid myself. The most constructive thing I heard in the three weeks between the start of this adventure and the biopsy results came from the administrative nurse at the Breast Center, who helped me set up my biopsy appointment. I tried to pump her for some specific odds. Instead she looked me in the eye and replied, “It is what it is.” It was then, in the interim between that and the biopsy, that I decided to educate myself. Perhaps it was a blessing that nobody warned me “don’t Google.” But nonetheless, I Googled wisely. So when I got my diagnosis, I was dismayed but neither crushed nor paralyzed with fear--in fact, that fear set the contingency-planning in motion. With each step after that, I hoped for the best possible result but prepared to have to handle the worst. I was very lucky that my tumor profile was favorable, my Oncotype score low, my genetic mutation tests negative and my treatment plan the least invasive and least onerous I could hope for. But I had “if-->then” charts (albeit unwritten) for the results I feared. It was sweet to be able to mentally tear up those theoretical charts as they became unnecessary.
So there’s an upside to pessimism--so long as you let doubt prepare to spur you into action rather than plunge you into despair and inaction. “Be prepared” isn’t just a Scouting maxim.
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Christine- very cool song. Haunting lyrics. Thanks. 💞
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Chi- very wise indeed. I think I have always done the same. I know I have been told many times the same "you're getting ahead of yourself" warnings. I like to have a decision tree laid out in front of me.
I manage expectations. Mine and probably those close to me. For me it's not a vice, so long as I know when to turn back from the "awfulizing". Maybe say, knowing my next 3 chess moves. With all life's variables, that is still many permutations of possibilities. But I expose myself willingly to the worst case scenario always. I try not to bog down in the details of the worst case, but acknowledge it as a boundary.
Interesting discussion. Thanks Chi! Nice to know that I'm not the only one driving that brand of Crazymobile.
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Noddy, whew, good news! I was thinking about you today, kept watching for an update.
Octo, that is a beautiful view. I've never been to the ocean, but that makes me want to go there. The bakery looks almost as good. Good to hear it is finally raining out there.
Thanks for the hugs, Slow.
Ducky, have you ever had migraines? I see that is connected to this weird memory loss thing, and I know migraines can do weird things to a person. My sister and I both have had ocular migraines, where you get weird visual effects. I see Sula already thought of aliens.
Gaia, that was a neat experience you had with the doctor. I think sometimes that is what is missing from our everyday treatment, the spiritual side, and just having someone say "you are strong and you can do this".
Marie, I would want a biopsy of that lump, but I'm a worrier. That's why I'm in Crazy Town!
Sandy, you and I think alike - I'm a planner. The good news about being a planner is that you are prepared, so when things go wrong, the plan is already in place, and you don't have to start figuring out what to do now. I don't think my approach working so well with my MO, though - I get the impression, he likes to take things one step at a time, and I'm way further into the process than he is ready for.
Mary, let us know when you have your tests.
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hello Crazies,
Hope everyone is doing well tonight.
Noddy,
Wonderful news! So glad everything turned out well for you.
Octo,
I would have been happy to spend my vaycay right in that bakery!! Wow, and gorgeous view to boot;
Gaia,
Lovely lyrics and I' so glad you had a good visit with your MO. Even though we've never met, I know you have a strong and amazing spirit. Some doctors have that ability to see beyond things and into the inner self it's so fortunate you've found one that does. How are you handling the herceptin other than that?
Chevy,
That's an amazing and horrifying story and you a truly strong person to have come through all that as such a strong person and with such a great sense of humor about life.
Ducky,
I hope things settle for you soon and you can get to the bottom of what happened. It's a relief that the big scary things have got an all clear so you don't have to worry about those, but for peace of mind in getting back to all your regular stuff and schedule I hope you get some answers. I'm almost wondering if it was done sort of allergic reaction to something. Has that been looked into?
Jack,
I always do the same thing, I like to have a bunch of action plans laid out so that I'm prepared for anything. Unfortunately the way my brain works a lot of them are always planning for the dark side but still I like to be informed .... Even if I do have to ratchet things back pretty often.. But hey that's what Crazy Town is for right?
Marie,
I'm with Cubbiee on the biopsy issue
Slow and Tom,
How are you doing?
Going to catch up read, and come back
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Meg-Mary First Welcome to CT. Liver enzymes - mine have been all over the board, I think your PCP and MO have a handle on it. Easy to say but not easy to do. My CT found a fatty liver, I blame my niacin, Tylenol or occasional alcohol for the fluctuations. Thyroid issues as well. With variations in diet, labs and time of day, only be truly concerned when Ast/Alt are 2-3 times your average. Also realize that those numbers are a range, bell curve as it were.
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