Thursday, September 15, 2011

Why is my CPK Count so High?

The other day I received an email from a man with Kennedy’s Disease.  He was wondering:
  • What is CPK?
  • Why his CPK count was so high?
  • What can he do about it?
CPK CPK or (CK) is Creatine Phosphokinase (a muscle enzyme).  An elevated CPK count is quite normal for those of us with Kennedy's Disease.  The higher number reflects muscle damage (or wasting).  Those of us with Kennedy’s Disease can have CPK counts into the thousands. 

Normally, our body does a great job of cleaning up the residue from normal muscle usage.  However, as Kennedy's Disease progresses, the amount of waste generated from the muscle breaking down accelerates and the body can no longer remove all the waste. 

For example, prior to being diagnosed with Kennedy’s Disease, my doctor was concerned that I was experiencing acute renal failure because my count was so high. 

A key point for those of us with Kennedy’s Disease is that a high CPK will also indicate a longer than normal time needed to recover from excessive muscle usage.  Those of us with Kennedy’s Disease have experienced this problem when we have ‘over-done’ something.  Occasionally it might take a day or two to recover.

Understand that when the test is given is also important.  If you have done something physically demanding within the last 24 hours, an elevated CPK is normal.  If you had rested a day before the test, the count might still be elevated, but not nearly as high.

What can you do? 


  1. Recognize that this is a part of the progression process.
  2. Consult with your neurologist.  He/she is the most prepared to address your concerns and discuss options.
  3. Understand what particular work or play is causing an increased breakdown in the muscles. 
Example:  I was experiencing very high CPK counts when I was still very active (climbing mountains, lifting weights, running, biking, etc.) .  As I began to exercise 'smarter', my CPK count gradually declined to a level that is still slightly elevated, but closer to normal.  I now exercise every day, but my exercise program is different (less demanding).  I also ‘listen to my body’.

I found the following articles interesting and hope it is helpful in better explaining what CPK (or CK) is.

What Do Elevated CPK Levels Indicate?

 

Creatine Phosphokinase

  • CPK's normal function is the transformation of creatine acid into phosphate, which is a usable source of energy for muscle, heart, and brain cells.

Concentration

  • The normal concentration of CPK in the blood of a healthy adult is 22 to 198 units per liter. An unusually high concentration of CPK may indicate an injury or illness.

Damage

  • When an organ or muscle containing CPK is damaged, the bloodstream floods with the "spilled" enzyme. Analyzing CPK levels through a blood test enables doctors to find out exactly what kind of CPK it is, thus revealing where the damage lies.

Creatine Kinase 

By: Terry Bytheway
Creatine kinase, also known as phosphocreatine kinase or creatine phosphokinase, is an enzyme or type of protein that is found in several tissue types of the human body, including the muscle and the brain. The function of this enzyme is to catalyze the conversion of creatine to phosphocreatine by applying itself in the consumption of adenosine triphosphate, the generation of adenosine diphosphate, and the reverse reaction. Adenosine triphosphate is a vital source of energy in biochemical reactions; in the skeletal muscle, the brain, and the smooth muscle – or all tissues that swiftly use up adenosine triphosphate – phosphocreatine acts as an energy reservoir for the quick regeneration of adenosine triphosphate. This is a very important function, and even though it doesn’t sound like much, creatine kinase definitely has its work cut out.

Going back to basics, there are three types of creatine kinase or isoenzymes in the body: CK-BB is mainly produced by the brain and the smooth muscle; CK-MB is primarily produced by the heart muscle; and most of CK-MM is produced by the skeletal muscle.

In normal conditions, there is very little creatine kinase circulating in the blood of the average, healthy human being. Taking the creatine test is a good idea to find out where exactly it is that one stands when it comes to the prevalent level of creatine kinase in one’s body. The test specifically measures the blood levels of certain muscle and brain enzyme proteins; the normal results for females range between 10 - 79 units per liter (U/L) and 17 - 148 U/L in males. A lower than normally low level of creatine kinase shows that you have been drinking excessively; alcohol liver disease and rheumatoid arthritis are two of the most common possibilities that exist with respect to lowered levels of creatine kinase.

On the other hand, if the test reveals that the level of creatine kinase circulating in the blood is higher than it should be in normal conditions, then chances are that the human body in question has suffered damage either to the muscle or the brain. In fact, astronomical levels of creatine kinase are indicative of injuries, rhabdodomyolysis, myocardial infarction, myocarditis, myositis, malignant hypethermia, McLeod syndrome, neuroleptic malignant syndrome, and hypothyroidism. If most of this sounds like gibberish to you, just remember that a heart attack, a muscle disease or a stroke may result in abnormally raised creatine kinase levels in the blood. Statin medications used to decrease serum cholesterol levels may also be the culprit.

Experts suggest that anyone who is not sure whether or not they have had a heart attack (which is hard to imagine!) or whether muscles in their bodies have been damaged as a result of any sort of activity, should make it a point to go for a creatine kinase test.

58 comments:

  1. My CK level has been high since June 2011 642
    and just recently tested again was 559. I do not exercise or lift heavy objests. I am on Synthroid 75 mcg, 5 days a week. My neuro wants me to go for a muscle biopsy. No history of this in my family. Any advice?

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  2. WENDY, you need to let your neurologist take the lead, but that doesn't mean you cannot continue to be your own advocate and researcher. As I mentioned in the article, a higher than normal CK count could mean many things. In KD, it shows muscle wasting. It could also mean liver or kidney issues as well as other health concerns.

    A high CK (CPK) is just one symptoms of Kennedy's Disease (Spinal Bulbar Muscular Atrophy). A DNA test can be helpful to rule out or identify that you have KD. However, if you do not have any history in your family, it is most likely something else.

    Please let me know if I can be of further help.

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  3. It was an elevated CPK level that got a Dr to finally take an interest in my husband. This particular Dr ordered other tests and was the one who pushed us in the right direction to the ultimate diagnosis of Kennedy's. I'd much rather hear Kennedy's than ALS for sure!

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  4. Yes, Kiki, I felt the same way. I was originally diagnosed with ALS.

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  5. Well my husband has a Ck of 656 and they did a muscle bisopy but only found a single fiber so the lab suggest another one, right now they are trying Baclofen and will see in three months. In the meantime my husband is totally exhasued Got up today and felt so tired, never felt that way before and he slept all night
    So i worry what going to happen to him

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  6. wel my cpk is around 397 n i am a regular heavy smoker.. In order to make the cpk around normal level what can i do without stopping my habits.. And how much time wil it take

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  7. You need to see your doctor and discuss why you have an elevated CPK (what is causing it). That being said, if you do not want to look at healthy alternatives to your current lifestyle, and are looking for a quick fix without making any changes, good luck!

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  8. Hello all my husband has had a high cpk level for about 8 years now.. The highest that we've ever seen it get was 1400 until yesterday when he was seen in the ER and they checked and revealed that it was 4884.... We are cluseless to what to do and the doctors can't seem to figure out whats going on...

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  9. I realize it must be frustrating, but your doctor(s) are the best ones to help you through this process.

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  10. Ann
    I have been having cramps and severe seating for about 2 years now. Finally got a CK test yesterday and my level is 1581. Any suggestions on how to get it down.

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  11. Sorry Ann, I am not a doctor. As I mentioned above, your doctor is the best resource for help. Good luck!

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  12. My husbands CPK level was 550. He had an. MI 4 yrs ago ( age 57) and subsequent bypass surgery ( triple) he walks 3 miles a day 7 days a week, and has no complaints of any muscle pain or weakness. He is a recovering alcoholic and has not drank since his heart attack. He does take simvastatin daily. The Doctor said he'll check the level again in 3 months. I'm concerned and think he should have further testing. Should he follow up with his cardiologist or see a neurologist? Thank you. He is also a diabetic ( type11) and his A1C is good at 5.9.

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    Replies
    1. Simvastatin, especially at full dose, and combinig Fibrates are known to have side effects on muscles and raise CPK levels. Your cardilogist/internist should be able to help.

      Delete
  13. Ellen, I am sorry, but as I mentioned in my response above to Ann, "... I am not a doctor. Your husband's doctor is the best resource for help. Good luck!"

    P.S. His exercise routine sounds good.

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  14. I am a tri athlete. I gave blood the day after a run and weight lifting. My CPK was almost 700. Should I stop working out?

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  15. No, you should be seeing your doctor and discuss what might be happening. A high CPK is a health issue that needs to be discussed with a professional.

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  16. My mums cpk was 1200 in january 2013 n in a retest last week has inc to 2000..she has no other problem but she faces severe lifelessness in her legs...thsu climbing stairs or even the footpath has become a major issue these days...she finds it v.dfficult to do it without support.

    otherwise she is v.active in the house n socially...constantly on go kind of person...

    vr living in pakistan...all the physicians that v have consulted dun kno wat to do...can u plz provide some guidance...

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  17. I am sorry, but I cannot help. Your doctor or a specialist recommended by your doctor needs to be your source of information and potential treatments. I hope they can determine what is happening with your mom.

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  18. Getting a second test after a 7k reading. I do vigorous training with weights and eat very high protein. Told to lay off the training for a week and retest. Thanks for your site. Even if I am clear of problems you gave a lot of good information.

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  19. Hi,
    Recent Ailment:
    My mom has been suffering from mild pain in the upper left quadrant i.e. near left shoulder, over the heart area and the throat. I had her tested for complete health profile via blood & urine tests.


    History:
    She is a case for hypothyroidism with a history of grade 4 endometriosis and cysts in ovaries that led to a histectomy. She takes a 25mcg altroxin everyday.

    CPK level concern:
    The test showed that her CPK (total) level is 665.0 U/L (Normal level: 25-195)
    CPK (MB) on the other hand is 24.0 U/L (Normal level: 0-25).
    CPK BB and CPK MM have not been checked.

    She goes to the gym twice a week and is quite active.

    I am worried sick about the test results. What can I do to properly diagnose the issue?? Please help!

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  20. I am sorry, but I cannot help. Your mother's doctor or a specialist recommended by your doctor needs to be your source of information and potential treatments. I hope they can find out what is wrong soon.

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  21. I developed severe dextroscoliosis suddenly 14 years ago, after a rapid weight loss diet that depleted and damaged cartilage in my spine and caused a loss of 4 inches in height and ostepenia, which has moved on to opsteoporosis, general muscle weakness, and complete body itching with no rash and elevated eosinophils with no detected allergies or increased histamine. At that time my CPK was elevated for the first to about 250 and continues today at 290. Could my spinal injury, caused by that intense diet, be the cause of the elevated CPK. I have had many tests, including bone marrow, to rule out cancers. All have come back with no cancer detected.

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  22. could you pls tell me is there any effect of alcohol to increase in CPK value

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  23. Sorry, this is something you need to discuss with your doctor. However, since the liver is impacted by heavy alcohol consumption, there could be some correlation.

    Again, I am not a doctor and I highly recommend that anyone who is concerned with elevated CPK to discuss it with their doctor or a specialist.

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  24. I had been experiencing muscle pain in my forearms and lower legs my doctor run the ck test and the results were high at 575 she told me it was related to my auto immune thyroid and told me to start taking COQ10 twice a day and my aches when away... i recheck my levels a few months later and to my surprise my leves drop 500 points...

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  25. I have been having high cpk levels for years,but I was never told what it could mean other than if I wasn't or didn't have a heart attack that there could be other reasons.I don't drink alcohol,I'm not on any statins,nor do any illegal drugs and I don't exercise. At it's highest point my levels have been 900,and since Oct. 2012 ive been in constant (all over) body pains,and fatigue.I'm a 43 year old male and frustrated. I have had expensive blood work done which produced no answers other then my next step may be a muscle biopsy. :(

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  26. Since I am not a doctor, I cannot comment on your condition. I can understand your frustrations, however. Many of us have been there (no answers or the wrong diagnosis). Do you have any other symptoms that would help a specialist properly diagnose your condition? I wish you luck.

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  27. I came across this site while searching for something else but read the comments with interest. I wanted to post because I am in a similar situation w/ a different disease and I completely empathize with the frustration of some posters. I'm 43 and I also had a high creatine (1200). Thought I was having a heart attack..symptoms: pain (in arms, shoulder, chest), difficulty breathing and fatigue. A year and 7 doctors later I ended up at Johns Hopkins and after a muscle biopsy was diagnosed w something called Nemaline Myopathy. While not Kennedy's Disease, all I can say is to keep plugging away and hopefully the answesrs will come.

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  28. Thank you for sharing your story. This CPK article has been very interesting because of the many different situations mentioned above. Hang in there and keep the faith.

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  29. MY MOTHER CPK IS ABOUT 2359 UL i.e VERY HIGH WHAT SHOULD I DO

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  30. I am sorry, but I cannot help. Your mother's doctor or a specialist recommended by your doctor needs to be your source of information and potential treatments. I hope you can find an answer.

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  31. my cpk level now is 2600 and has been highest at 4000. so tell me what the heck is wrong with me.

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  32. Bruce I have to commend you for your helpfulness, your compassion, and your patience. Thanks for the article on cpk; it clarified a bit of a mystery. My slightly elevated creatine level caused my GP to be concerned about my kidney function. We 've since had an important talk about my KD diagnosis. I'm very grateful for this site.

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  33. Good to know the article helped. That is why I started this blog.

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  34. My son exercises very frequently. But last week he worked with a new trainer that gave him an exercise routine that caused his knee to swell and became very painful. When two days later he was no better he went to doc in a box and they sent him to the ER. His CPK was 92,000 and his liver enzymes wer elevated also. He is still in the hospital, day five and his level is now 43,000. He is being treated with infusion of NACL at 200 cc/hr. My son is only 28 years old, very active and like most young men his age have no patience for the slow cure. Have you heard of anyone with levels that high

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  35. It is very high, but there are several cases that are higher. Continue to have your son work with his doctor. And, as you mentioned, it could be a slow treatment. I hope they find the cause of the elevated CPK and can manage it.

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  36. My level of CPK was 6,474. Is this high?

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  37. Yes, you should be discussing options with your doctor.

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  38. Ever since Oct. of 2012 my cpk levels have been rising from 595 to my last reading of 1200. I'm in constant pain all over my body,especially in my legs, and in my chest,arm on left side,neck and shoulders.Have been to ER no heart problems have been found just very high cpk levels. Non drinker,nor drug user,no statins.Major fatigue.

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  39. Eward, you need to follow up with your doctor, and if necessary a specialist. Elevated CPK can be caused from several conditions. Constant pain and fatigue ... don't delay your visit.

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  40. Hi, my son, age 27, was admitted to the hospital with elevated kidney, liver, and cpk enzymes. He was so swollen in both legs and all over his body. They said it was Rhabdomyolosis. They treated him and got his kidney and liver enzymes down. They said his cpk was still just a little elevated. Now, one week later, his follow up with reg. doc indicated normal kidney and liver levels, but his cpk and uric acid is elevated. Ruled out gout. What in the world could cause this??

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  41. Sorry, Mr. Carlos, but I am not a doctor. Often, the most difficult part of this process you are going through is the 'not knowing'. You have to rely upon your doctors. Searching the internet like you are doing now does help, but also aggravate your frustrations because there are no easy answers to this. Goo luck!

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  42. I suffered side effects from new medication I was put on for my epilepsy and my gp tested my ck levels as I had severe muscle pain in my legs and could hardly walk. The blood test came back with a ck level of 5808. After a few weeks the pain eventually got better & my co level was done to 97. Even though I'm not taking that medication anymore I have started suffering the same pain in my legs again. I was wondering what type of damage can high ck levels do to your muscles as my gp isn't being very helpful.

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  43. Melissa, since I am not a doctor, you will need to consult with a doctor or even a specialist to answer your questions and concerns.

    Wikipedia explains the following:

    "Elevation of CK is an indication of damage to muscle. It is therefore indicative of injury, rhabdomyolysis, myocardial infarction, myositis and myocarditis. The use of statin medications, which are commonly used to decrease serum cholesterol levels, may be associated with elevation of the CPK level in about 1% of the patients taking these medications, and with actual muscle damage in a much smaller proportion.

    There is an inverse relationship in the serum levels of T3 and CK in thyroid disease. In hypothyroid patients, with decrease in serum T3 there is a significant increase in CK. Therefore, the estimation of serum CK is considered valuable in screening for hypothyroid patients."

    Healthline goes into a little more detail with the folowing:

    Analyzing the Results

    CPK-1 is found primarily in the brain and lungs. Elevated CPK-1 levels could indicate:

    - brain injury, stroke, or bleeding
    - brain cancer
    - seizure
    - pulmonary infarction (death to an area of the lung)

    CPK-2 is found in the heart. Elevated levels of CPK-2 can be the result of:

    - injury to the heart (due to accident)
    - inflammation of the heart muscle (usually from a virus)
    - electrical injuries

    The presence of high levels of CPK-2 in the blood can also follow heart defibrillation and open heart surgery. After a heart attack, CPK-2 levels in the blood rise, but usually fall again within 48 hours.

    Congestive heart failure, angina, or pulmonary embolisms generally do not cause CPK-2 to rise in the bloodstream.

    Levels of CPK-3 may rise in the bloodstream if muscles:

    - are damaged from a crush injury (when a body part has been squeezed between two heavy objects)
    - have been immobile for a long period
    - are damaged by drugs
    - are inflamed

    Other factors that contribute to high levels of CPK-3 include:

    - muscular dystrophy
    - muscle trauma (from contact sports, burns, and surgery)
    - seizures
    - electromyography (testing of nerves and muscle function)

    Results will vary from person to person, depending on specific injuries and conditions. Your doctor will explain what your specific results mean, and discuss the most effective form of treatment."

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  44. my male child aging 6 is having cpk total as high as 4097 . is it dangerous ,threat to life ,, how to cure

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  45. antes de tudo , tem que procurar u médico, o meu cpk esta em 290,
    e eu também estou com essas duvidas.

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  46. Antonio's comments above: "First of all, you have to find u a doctor, my cpk's in 290, and I'm also with those doubts."

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  47. sir my brother CPK level mostly on 968 and above doctor give medicine,,, after taking medicine his CPK level decreases,,,, but after some time when he decreases the medicine his CPK level becomes again increases,,,, we are so sad about him give me some suggestion please ,,,,,,

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  48. CPK can be an ongoing struggle for many of us. Your brother's doctor needs to be consulted on this because many health issues could be causing these spikes.

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  49. sure would like to know should people with SBMA take statin drugs are not

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  50. Hello, my CK reading in December was 495. I took the test after my first day of skiing on the mountain for the season and was pretty sore. My doctor reduced my dosage of Lipitor from 20 mg to 10 mg and asked me to retest a few months later. Upon retest it was about 320. Should this be of concern? I work out 5 days a week and my ck has always been slightly elevated which my doctor had surmised was due to my workout regimen. I see the doctor again next week. Are those reading something that I should be concerned about?

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  51. This needs to be a a discussion with your doctor. As mentioned in the article, elevated CPK could mean a variety of things and some are health concerns.

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  52. My CPK level last Saturday was 35000. Not kidding my specialist called me to re do the test on Tuesday it dropped to 14000. Normal level is supposed to be 0-140. I told my specialist that i went back to weight training after a month off due to my surgery and i hit the gymhardi was very sore for nearly a week. My specialist said not to train this week and do another test on Monday. But i am pretty sure its nothing to be concern, i am a tiny girl but do heavy weight training so my cpk level is deemed to be high with training to gain more muscle. We shall see what the 3rd test results says after a week of no training says.

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  53. last week my CPK was 35000. I will retake my blood test in 2 weeks, since then I stopped taking lipitor. Do you think my health is at risk?

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  54. There is definitely something wrong. Talk with your doctor and if necessary, ask to be referred to a specialist. Good luck!

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  55. Got tested Tuesday and had CK of 44.2k, got retested the next day (Wednesday) and my CK was 19.8k, all metabolic functions (including liver and kidneys) were normal. I get retested Monday, am I pretty much out of the woods for potential problems? Got checked by 2 different doctors, both of which showed little concern after the CK lowered. Any thoughts?

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  56. Posted on 9/13 about being fine and I am. My CK levels are back to normal and I had no further complications. It was scary stuff but I managed to pull through without hospitalization!

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