- What is CPK?
- Why his CPK count was so high?
- What can he do about it?
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?
- Recognize that this is a part of the progression process.
- Consult with your neurologist. He/she is the most prepared to address your concerns and discuss options.
- Understand what particular work or play is causing an increased breakdown in the muscles.
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 BythewayCreatine 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.
My CK level has been high since June 2011 642
ReplyDeleteand 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?
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.
ReplyDeleteA 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.
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!
ReplyDeleteYes, Kiki, I felt the same way. I was originally diagnosed with ALS.
ReplyDeleteWell 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
ReplyDeleteSo i worry what going to happen to him
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
ReplyDeleteYou 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!
ReplyDeleteHello 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...
ReplyDeleteI realize it must be frustrating, but your doctor(s) are the best ones to help you through this process.
ReplyDeleteAnn
ReplyDeleteI 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.
Sorry Ann, I am not a doctor. As I mentioned above, your doctor is the best resource for help. Good luck!
ReplyDeleteMy 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.
ReplyDeleteEllen, 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!"
ReplyDeleteP.S. His exercise routine sounds good.
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?
ReplyDeleteNo, 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.
ReplyDelete