Hey everybody. I keep on having to go back into my doctor's office to have these repeated CPK tests. It's getting to be monotonous because they've rerun it about 5 times now. They even told me that it's not 'dangerously high' like 1000 would be, but that it's 'sufficiently elevated' that there is some level of uncomfortableness in the mind of the internal medicine doctor. He's even had me hold off on exercising for 3 or 4 days prior to the test and yet this dumb test is still high. Finally, about a month ago when I went back in for my check-up he tells me that it's higher than last time, again, no exercising for 3 days prior to the test.. and he was going to rerun it yet again. I said, "I want to know why I have to keep on getting this same test over and over again if it's going to keep on having the same result. My point was that I wanted to know what exactly that he was trying to look for because it seems like a waste of time and money to keep repeating the same test over and over again if it's always going to be elevated. So, he says, there may be some type of rheumatological issues going on and I'm just going to refer you to a rheumatologist. Mind you that I have no specific joint issues i.e. I don't have like for example, one of my knees killing me or one of my hips or one of my ankles, or one of my shoulders, etc., etc., that are specifically hurting. I do have a generalized achiness all the time, but I chaulk that up to the Hep C. Which I did ask him specifically, can this be elevated because of the Hep C, he says that he thought it might be. (In my mind that should be the end of this sage then.) So, I go to the rheumatologist doctor and she has the attitude basically of, "why are you here?" So, I'm like, Dr. *** sent me here because of the elevated CPK's. She basically laughed at me and says, well elevated CPK's may be normal for you. So, I feel like really stupid because of her laughing at me. And I say, "well, you should tell him that because he's the one who sent me here". So, she examines me and sees that I am very well muscular wise and strength wise because of all the working out and says, "well you have no muscular weakness". Then, she has me get yet another blood test. The Aldolase test. But, she does not tell me what she's looking for. So, I get that done. Then, yesterday, her office calls me back and tells me that this test is high, too. So, her nurse tells me, "she wants to see you again in 6 mon and she wants you to have both this CPK and the Aldolase test repeated one week before you come back in. Does anybody have any idea what the heck that these doctors are trying to rule out or look for in me? I asked her, too, if the Hep C could be causing this and she said, as well, that yes, it could. So, why can't they this drop this whole thing??? Any ideas are welcome.
My latest numbers on the CPK are 438. Normal is 0-170. The Aldolase is just barely out of range Normal is under <=8.1 and mine is 9.9. The high CPK has been going on for about 6 mon. now. Staying off of exercise for 3-4 days prior to the test doesn't seem to make it back in the normal range. For the past month, I've been dealing with my knee acting up. It started swelling and the doctor drained fluid out and injected it with steroids. But, it is still very tender. About 10 days ago, I started hurting all over again, including my knee, so I called the Dr.'s back. He sent me back to the rheum. Dr. who has ordered a myocitis panel and an MRI of my left knee. The Myoc. panel was drawn on Fri. and I get the MRI next Tues. I'm just wondering if all of this is just from Hep C, or if it's left over from TX's. The last TX was over 20 mon. ago and that TX only lasted for 5 wks as it was a trial. Susan400
Not sure in your case, but when my Hep C "awakening" process began, it was because what we THOUGHT were my liver enzymes were elevated, it turned out to be due to an extremely heavy exercise session after a long period of inactivity (I know, at my age, I should know better).
Doc was concerned because ALT/AST went to over 400. I did some research and found that these enzymes can be released due to muscle injury as well as liver issue, and that in the muscle injury case, CPK would be elevated as well. Turns out mine was - it was about 500 if I remember right.
CPK is a marker for muscle injury - my doctor told me that the monitor it sometimes if they suspect the patient has had a heart attack (damage to heart muscle). I knew darn well I hadn't had a heart attack.
Like you, I work out pretty intensely 3-5 times a week with free weights, and do a bunch of running, biking, swimming as well.
It turns out I had to refrain from exercise for THREE WEEKS to get my CPK levels back in normal range.
I was just following what the Dr.'s office told me to do... I don't know that I'd want to stay off of exercising for 3 wks. Even w/this knee thing, I've still be going to the gym 3 days a week for upper body because I hate to be inactive. It just depresses me too much. Susan400
Understand you aversion to "doing nothing". In my case, the time off was simply diagnostic - we were searching for why my "liver enzymes" were so high, so the doc wanted plenty of time for the muscles to heal.
Sure enough, my enzymes dropped to almost normal at the same time the CPK went to normal. This took about 3 weeks for me.
Unfortunately, they didn't quite go all the way normal, and that's how the Hep C was discovered.
I'm looking through my beginners lab book and with my limited knowlege and in laymans terms, it says that CPK is frequently elevated by skeletal muscle disease, heart attack, cerebrovascular disease, vigorous excercise, intramusculer injections and electrolyte imbalance-hypokalemia (low potassium)
So, we know that you are a vigorous excerciser.....have they checked your potassium?
For Aldolase.it says that is is a useful test for diagnosing muscular disorders....it does list acute hepatitis as a reason for increased levels. I know you're not acute, but maybe chronic will skew the results.
Maybe this "knee-thing" that you are having is skewing your results as well if they are measuring muscle disease/disorders....maybe damage is included in that catagory??
I know it ***** not to be able to excercise, but maybe they need you to do that to get an accurate result. It's not often that we think of "cheating" when we do something that's good for us.......but, I'm just throwing some thoughts out there.
my husband is going thru the same thing for about a year and a half now, elevated cpk levels. he was going to a neurologist who seemed to be worthless so his doc is now sending him to a different neurologist. the first doc wasn't doing anything but taking our money. the diag on the bottom of this last bloodwork order is muscular dystrophy. he will probably be getting a muscle biopsy done according to family doc. I hope both you and we get answers soon.
This has been put on the back burner for now. They ran a myocitis panel and it came back within normal limits so, basically, I'll just have to keep on getting the CPK every 6 mon. or so (hard to say because the internal med doctor is ordering it and so it the rheumatologist - I'm probably going to have the Intern. Med. doctor remove it from his order). Basically, since it's not over the top high, they're assuming that the elevation is strictly from the Hep C and the chronic inflammation that it causes. My knee pain has subsided and my MRI was normal. So, my school of thought was..., what the heck, if they can't figure this out, I'm just going to go back to what I want to do and forget about it. So, I went back to my normal level of exercise, even though it hurt at first. Quite honestly, I'm not having any pain at the moment, so that makes me happy. I'm thinking maybe it's just fibromyalgia?? Or the Hep C. In any case, I'm just going to live my life how I see fit.
Just to let you know, I had the same problem. You have muscular dystropy there are two forms that cause these symptoms. One is Dermatomyositis, which wil also cause you to look like you got a sunburn or look hot ect. you will have a reddish apperance to your skin. The other one is myotonia muscular dystrophy. Both cause stiff joints and pain in your muscles. The pain can be misdiagnoised as restless leg syndrome. These M.D. also cause liver problems. Have your doctor refer you to the muscular dystrophy association. There will be several in your area. Have an EMG if your muscles sound as if there is a bunch of world war two dive bombers around, well that is myotonia. Yes you at this stage will still have good strength, but prednisone and cellcept are excellent choice of medication. With these meds the pain subsides and you will be able to rest better. But be treated you must, the longer you wait the more damage that can be done to your muscles. Good luck! demand treatment.
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