Highly elevated CK (Creatine-kinase) anyone else?

[Thinktank]

A rheumatologist just measured My CK (serum creatine-kinase) and it's highly elevated. Reference range is 0 - 170 and my result is 2371.
The only thing that i know of CK is that it's important for ATP generation and that it becomes elevated when more muscle is being burned than generated.
My diet can't be the issue because i consume tons of protein.
I know it's elevated in certain diseases that affect the muscles. I have pretty bad muscle wasting.

Anyone else here with highly increased CK?

 

[pattismith]

CK can be elevated in myositis, myopathies, and some channelopathies.

Did you have an electromyogram, a muscle biopsy?

 

[Thinktank]

I did not have an electromyogram or a muscle biopsy yet. I'm being checked for Sjogren's syndrome and some other things.

 

[ljimbo423]

This quote is from the Fluge and Mella paper about Pyruvate Dehydrogenase-

We hypothesized that changes in serum amino acids may disclose specific defects in energy metabolism in ME/CFS.

Analysis in 200 ME/CFS patients and 102 healthy individuals showed a specific reduction of amino acids that fuel oxidative metabolism via the TCA cycle, mainly in female ME/CFS patients.

Serum 3-methylhistidine, a marker of endogenous protein catabolism, was significantly increased in male patients.

The amino acid pattern suggested functional impairment of pyruvate dehydrogenase (PDH), supported by increased mRNA expression of the inhibitory PDH kinases 1, 2, and 4; sirtuin 4; and PPARδ in peripheral blood mononuclear cells from both sexes.

LINK

This paper seems to be saying that at least in males with ME/CFS, there is significant protein catabolism, which can lead to muscle wasting. If you notice the pink box below, it shows all the amino acids that feed Acetyl CoA and that feeds the Krebs cycle.

The amino acids get used up there, instead of pyruvate from glucose, because Pyruvate Dehydrogenase is impaired. So the cells use an alternate route by directly creating Acetyl CoA from aminos, which uses up a lot more amino acids, making the need for protein or amino acids much higher.

Figure 1
Hypothetic mechanism of ME/CFS linked to amino acid catabolism.
According to this model, ME/CFS is caused by immune interference with an unidentified target, potentially a signaling factor, which ultimately causes metabolic dysfunction and induction of secondary rescue mechanisms.

We hypothesize that aberrant PDK and SIRT4-mediated inhibition of PDH, and consequent obstruction(s) in central energy metabolism, occurs early during ME/CFS pathogenesis, followed by metabolic adaptations serving to maintain ATP production.

The result will be increased consumption of amino acids not depending on PDH to fuel oxidative metabolism via the TCA cycle. Such a mechanism would expectedly change the serum amino acid profile in patients, depending on the different entry stages of the amino acids into the catabolic pathway.

Accordingly, for the purpose of serum amino acid profiling, the 20 standard amino acids were assigned into three categories: category I amino acids that may convert to pyruvate (i.e., dependent on PDH; Gly, Ser, Thr, Cys, Ala); category II amino acids that may metabolize to acetyl-CoA and fuel the TCA cycle (i.e., independent of PDH; Lys, Leu, Ile, Phe, Tyr, Trp);

and category III amino acids that are anaplerotic and serve to replenish TCA cycle intermediates (i.e., independent of PDH; His, Pro, Met, Val, Glu + Gln = Glx, Asp + Asn = Asx). The asterisk indicates amino acids that were significantly reduced in serum of ME/CFS patients compared with healthy controls in this study (see Table 1 and and22).

I feel a lot better since starting 10-12 gms a day of BCAA's about 2 weeks or so ago!

 

[eastcoast12]

A rheumatologist just measured My CK (serum creatine-kinase) and it's highly elevated. Reference range is 0 - 170 and my result is 2371.
The only thing that i know of CK is that it's important for ATP generation and that it becomes elevated when more muscle is being burned than generated.
My diet can't be the issue because i consume tons of protein.
I know it's elevated in certain diseases that affect the muscles. I have pretty bad muscle wasting.

Anyone else here with highly increased CK?

What up thinktank. It’s interesting that you mention CK levels. I used to be extremely active (college football, surf, snowboard, box, mountain bike, you name it I did it. I didn’t look like Brad Pitt, but I was in really good shape. I could go for a 10 mule run like it was a walk in the park) and out of nowhere I started getting rhabdomyolysis. Basically out of nowhere my muscles started breaking down pretty severely. Over a course of a year I ended up with it 5 or 6 times. Every doc I’ve takked to about this is completely confused as to why. But my CK levels where 87,000 the first time (they kept having to measure the swelling in case they needed to give me a Fasciotomy). The next few times they were elevated at about 65K-75K and the last 2 times they were 20K and 5K. Crazy shit. Any way after that year everything went down hill( won’t get into my life story) and I’m not bed bound but I’m pretty close. Every time I get my CKs checked they come back slightly elevated(abnormal) or are on the high end of the range (in talkin about less than 100-50). What’s weird is the high end is what you would expect to see in someone who worked out or did a full days manual labor job, etc. so your definitely not alone.
Just a word of caution from a rhabdo pro. If your urine starts getting dark( tea colored), if a muscle group you used strenuously starts to swell and feels more bone crushing than lactic acid build up, you should hit the ER. The extra myoglobin floating around in your blood can do some damage to your kidneys.

If you have any questions let me know. This whole disease is so weird.

 

[Gingergrrl]

I'm being checked for Sjogren's syndrome and some other things.

Do you know what else you will be checked for besides Sjogrens? I don't think I have ever had an elevated CK (although it is possible I did at some point and am not remembering). When I was injured by Levaquin in 2010, a lot of my inflammation tests were elevated but I am not sure about that one.

 

[hixxy]

I have a long history of elevated CK with the earliest result I have showing it elevated back in 2006. It seems to fluctuate with it dropping in range sometimes and the highest it's been is 1430. I noticed this (below) a while back in the clinical manifestations table from a publication by the MCAS doctor Dr Afrin:

Clinical myositis, often diffusely migratory (fibromyalgia is a common pre-existing diagnosis), subclinical myositis (i.e., asymptomatic elevated creatine kinase not otherwise explained), arthritis (typically migratory), joint laxity/hypermobility, osteoporosis/osteopenia, osteosclerosis, sometimes mixed osteoporosis/osteopenia/ osteosclerosis; MCAS-driven musculoskeletal pain not uncommonly is poorly responsive to NSAIDs and narcotics

https://www.clinicaltherapeutics.com/article/S0149-2918(15)00074-0/pdf

I think, but I'm not certain, that mine elevates more when my muscle pain is at its worst and the first positive test I got in 2006 was around the time my sub-clinical MCAS went full blown and one of my first symptoms along with food reactions was severe muscle pain.

Whenever I'm going through a period of severe muscle pain muscle wasting soon follows.

 

[Ema]

Creatine kinase is often mildly elevated in mitochondrial disease. http://www.umdf.org/lab-evaluation/

This article may be more helpful for more extreme elevations though. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4871266/

 

[alex3619]

I was in a study looking at muscle injury to try to find out what was causing my muscle pain. They found very elevated creatine phosphokinase if I recall correctly. This was in the late 80s. They never found a cause. I did not have any of the things they were looking for, whatever those were. I do know they were looking at neurological issues too, as I had numerous long needles stuck in my muscles during testing, measuring electrical signals.

 

[eastcoast12]

Creatine kinase is often mildly elevated in mitochondrial disease. http://www.umdf.org/lab-evaluation/

This article may be more helpful for more extreme elevations though. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4871266/

I’d like to add that this post from Ema is important. Most diseases that cause elevated CKs are mitochondrial.
If you haven’t already I would suggest (this is what my doctors had me do) a muscle biopsy, genome sequence, and whatever blood tests panel that looks for any sort of mitochondrial abnormalities.

And like others have mentioned I’d also get checked for as many autoantibodies as your doctor will allow.
Wish you well and keep us informed.

 

[Dakota15]

Is this the same thing as CaM kinase II? From the Molera Lab Cunningham Panel?

 

[hixxy]

Is this the same thing as CaM kinase II? From the Molera Lab Cunningham Panel?

No creatine kinase is a very basic test any doctor can run. Not a specialty test at all.

 

[Dakota15]

Ah gotcha - thanks for the clarification

 

[Silence]

Along with muscle wasting and muscle pain, my CK was also elevated in the Thousands. This was a few years ago. EMG is abnormal and shows muscle damage, Now they tell me I have some sort of myopathy and probably muscular dystrophy. In the beginning I assumed it was just part of my CFS/Fibromyalgia, but luckily I asked my neuro for a CK and he agreed. I need to rule out mitochondrial myopathy/disease, and some other muscular dystrophies. Some neurologist believed it was due to my very low vitamin D levels 3 ng. Do you have muscle pain?

Other tests that were abnormal: aldolase, b12, Thiamine. EMG

I did have a case of beriberi (which is a severe form of b1 deficiency)which did fit the picture, but as soon as I treated the b1 some symptoms did disappear, but others remained.

I ended up getting WES(whole exome sequencing and they did find a variant of unknown significance, but likely pathogenic of a rare muscle disease.

 

[heapsreal]

Alot of liver and kidney function tests are very general and may not be an indication of any harm to these organs. Its not uncommon for CK and other liver/kidney tests to be abnormal in hard training athletes. Quite common in bodybuilders, even drug free bbers, i mention drug free as some bbers can have these abnormalities from drug abuse. CK commonly is high after a bodybuilding workout as some of them can push that hard they break down muscle tissue which CK is a marker of.

 

[Thinktank]

Yeah, but the thing is i'm not an athlete, far from it.
It's impossible for me to gain weight and i have muscle wasting. So i do think that elevated CK level means something.

 

[pogoman]

Yeah, but the thing is i'm not an athlete, far from it.
It's impossible for me to gain weight and i have muscle wasting. So i do think that elevated CK level means something.

Hi, I'll offer my thoughts as I've been in the same boat before with high CK and muscle atrophy.

Depending on your medical history your doc probably will order tests to see if you have body inflammation and if none refer you to a neurologist to do a EMG/needle conduction test to isolate the muscle(s) showing myopathy.
If you have inflammation a rheumy may or may not need that, lab tests may be enough to find the cause.

If no inflammation, a muscle biopsy of the affected muscle to determine the type of myopathy.
After that, there are many different ways the treatment may go so I won't get into that.

I will tell you this if you do get a diagnosis of a toxic necrotizing myopathy, look into the myopathies caused by statins and fibrates.
Its fairly new and many doctors don't have experience with it.
Even people that have never been on statins or test positive for the two antibody tests can get it, I believe from my own experience its genetic and can be triggered by various means.

 

[heapsreal]

Yeah, but the thing is i'm not an athlete, far from it.
It's impossible for me to gain weight and i have muscle wasting. So i do think that elevated CK level means something.

I think in many mecfsers and fibro people the inflammation and muscle wasting can cause these markers to be elevated. Even CRP inflammation marker can be high if an infection has reactivated. But also ebv and similar viruses van effect the liver, common in an acute ebv infection for liver to swell.

 

[Gondwanaland]

I just read that it can be caused by Naltrexone
https://www.drugs.com/sfx/naltrexone-side-effects.html

Renal
Very common (10% or more): Abnormal creatinine phosphokinase levels (17%)[Ref]

 

[pamojja]

I just read that it can be caused by Naltrexone
https://www.drugs.com/sfx/naltrexone-side-effects.html

One would assume that to apply mainly to full doses of 50mg per pill. In any case, for me CK decreased since adding LDN. From 161 down to 112 U/L.