CK Level Test Result - Any Experts Out There?

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CK Level Test Result - Any Experts Out There?

Postby markgerard on February 28th, 2008, 10:17 pm

Hello folks,

I've been off the forum for quite some time. I went through a wicked Paxil withdrawal which was the reason for my absence. I have been completely off Paxil now for about 7 months. It was a slow process and I still don't feel all that well but that's not the purpose of this message. I've had a number of blood tests done over the past month because I've been unusually fatigued and worn down and I have gone a bit hypothyroid with a TSH level of 14.3. I'm working with my endocrinologist on this one.

But I'm kind of frightened right now as I just got a call from my doctor's office about my latest blood test results that were done yesterday (they're fast at the blood lab I go to). They tested my CK Level once again (or CPK Level as it is sometimes called) and it is high at 359. This scared the living daylights out of me. About 3 weeks ago, I had this test done and the CK level was only 269 at that time. The lab that does the tests states that 35 to 300 U/L is a "normal" range (the way the lab explains it on the result sheet is that anything less than 300 U/L is a "normal" range - some sort of new "reference standard" they say). So right now, it seems like my result of 359 is quite high.

Are there any experts out there that can tell me if my level of 359 is cause for concern? I know that in "BFS In A Nutshell", it states that it is common for those of us with BFS (which I've had for over 2 years now) to have an elevated CPK level. I've had two "successful" EMG tests in the past two years and I see my neuro again in about a month for another follow up EMG.

Please help me out on this one. I have been twitching everywhere for the past couple of months and this test result has me really, really worried. In fact, I'm scared ****less (pardon my french).

Thanks so much and God Bless,
Mark
"...when all is darkness and we feel our weakness and helplessness, give us the sense of Your presence, Your love and Your strength - help us to have perfect trust in Your protecting love and strengthening power..."
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Re: CK Level Test Result - Any Experts Out There?

Postby sharon slack on February 29th, 2008, 12:43 am

hi mark,

i have been wondering about you and how your going , paxil is deadly stuff to come off. i'm sorry i dont' have an answer for ya, all though i do know a fair few people here have had elevated levels. nice to see ya back, lots of new faces here, sorry to hear it's still a bit of a struggle.

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Re: CK Level Test Result - Any Experts Out There?

Postby markgerard on February 29th, 2008, 9:01 pm

Hi Sharon,
Thanks for your reply and concern - I really haven't been on here much at all over the past 7 or 8 months. I see there are lots of new faces here and when I get feeling better, it is my goal to get back on here and help those who are going through all of what I went through in the beginning stages (and even right now). I don't spend a lot of time on the computer right now because my neck and shoulders have been so sore throughout this Paxil withdrawal process. Lots of time in bed, too.

I'm hoping someone will pipe in about the CK level. I spoke to two doctors today, one was a neuropsychiatrist, and neither doctor seemed overly concerned about the level but it still makes me wonder why mine would go from 269 to 359 in one month. It still worries me even though I got a bit of reassurance today. I just have such a hard time trusting in the medical community. My whole body has become so hyperexcitable in the past few months - I just so much as pull on a door handle or make a fist and my fingers start jumping around. When I roll over in bed, my arms will twitch somewhere. This never used to happen. Perhaps it is possible that the additional hyperexcitability is making the CK level go higher.

The neuropsychiatrist said he has seen readings in the thousands which is definitely cause for concern. But I'd sure like to know if anyone out there has had an elevated level in around my range or thereabouts. And I'd love to hear from someone who knows a bit about this whole CK level thing...

Anyone?

Take care Sharon,
God Bless,
Mark
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Re: CK Level Test Result - Any Experts Out There?

Postby markgerard on February 29th, 2008, 11:54 pm

And by the way Sharon, I hope things have been going well for you and that things are improving for you BFS-wise. I'm so wrapped up in my own dilemma right now that I forgot to wish you well in my above post. So sorry about that - 'just not myself these days...

God Bless,
Mark
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Re: CK Level Test Result - Any Experts Out There?

Postby Nic on March 1st, 2008, 7:55 am

CPK (CK-NAC) of 359 is a joke and normal for the syndrome dicrussed here. There's a good chance that your GOT-value (usually liver value, but also muscles) is raised as well, isolated from GPT and GGT.

Here some values for comparison:

Bruise: 500
Needle-Injection (shot etc.): 800
Sore muscle: 1000 after training
Strong Sunburn: 2000
Myositis caused by over-exertion (bodybuilding): 5000
'Dying' leg (f.example by accident): 50.000 or more.

CK is a "turnaround-encyme" which appears when your body is repairing muscle-cells. That's why it is never zero.

PS: There are different CK's. Especially CK-B (other muscle-type of the heart muscle) is interesting to check for heart-attacks.

And please allways considder the UNIT and test-method of the laboratory! Standard is CPK-Nac (male) < 190 U/l ; Grey-Zone 190...309 U/l; Cutoff >309 U/l (because of suspected myocard infarct = heart attack).
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Re: CK Level Test Result - Any Experts Out There?

Postby markgerard on March 1st, 2008, 3:45 pm

Thanks so much for the info, Nic - this is very reassuring for me. I also understand that Hypothyroidism, which I have been diagnosed with recently, can elevate the CK level. I do know there are different CK's and I'm not sure which one was used in the tests they did on me. All I know is that < 300 U/l was the reference as it was stated on the result sheet that I saw and my result was 269 the first time around, then 359 the next time around.

Thanks again for all your help,
God Bless, Mark
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Re: CK Level Test Result - Any Experts Out There?

Postby edado69 on March 6th, 2008, 4:25 pm

it's not just me to say it: high CK no weakness, no relationship between the 2 events. If you think about it, it makes sense too.
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Re: CK Level Test Result - Any Experts Out There?

Postby markgerard on March 6th, 2008, 6:24 pm

edado69 wrote:it's not just me to day it: high CK no weakness, no relationship between the 2 events. If you think about it, it makes sense too.


I'm curious as to what your CK level was? I found out a few days ago that there is a relationship between an elevated CK level and hypothyroidism which I just started to take medication for (Synthroid). And I have had a tremendous amount of weakness and fatigue that also goes hand in hand with hypothyroidism.

I'm not quite sure I understand your message though - high CK no weakness, no relationship between the 2 events. Do you mean just a high CK level from the BFS?

Thanks and God Bless,
Mark
"...when all is darkness and we feel our weakness and helplessness, give us the sense of Your presence, Your love and Your strength - help us to have perfect trust in Your protecting love and strengthening power..."
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Re: CK Level Test Result - Any Experts Out There?

Postby BOSTER on March 6th, 2008, 8:08 pm

I had a CK test once that was 399.....scared me a lot. The doctor wanted to retest, stating that a virus could cause this also. Sure enough, I retested in a week and it was down to 79. I wouldnt worry, I think working out, viruses, bruises, shots, even moderate exercise like walking can effect the test. I've heard of some people having CK levels too low where thier doctors told them to get out of the house and get active. So I think not to worry.
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Re: CK Level Test Result - Any Experts Out There?

Postby valger59 on March 6th, 2008, 9:47 pm

I had just posted a while pack about my CK level, it worried me a little cause mine was 122, which was normal for the range listed, which was 12-191. BUT....I just felt like 122 was a little too high, and it should be more around the seventy-ish level, as you said yours was, especially since I am a female. The guy at the ER said that it was fine, but at the time I was in there for heart palpitations, and he was speaking in relation to heart issues, not muscle issues. I haven't been back to my neuro yet, but need to go and see if he'll give me any ressurance about this. So far, from what I've read, the CK levels should be in the thousands with diseases such as als, but I'm not sure.
I have heard that they do vary a lot as far as the activity you've been engaged in, etc. Val
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Re: CK Level Test Result - Any Experts Out There?

Postby markgerard on March 6th, 2008, 10:09 pm

BOSTER wrote:I had a CK test once that was 399.....scared me a lot. The doctor wanted to retest, stating that a virus could cause this also. Sure enough, I retested in a week and it was down to 79. I wouldnt worry, I think working out, viruses, bruises, shots, even moderate exercise like walking can effect the test. I've heard of some people having CK levels too low where thier doctors told them to get out of the house and get active. So I think not to worry.


399 is quite high but you went way down a week later so you're fine. Like I said, I think my hypothyroid condition is contributing to my high level. I'll be re-tested in 6 weeks after this medication I'm on for the thyroid has a chance to kick in so we'll see what it's like then. I just don't like the weakness I'm feeling - that's the scary part - but again, musce weakness and fatigue are the first symptoms of being hypothyroid along with cold intolerance which I really felt in the beginning.

Thanks for your reply,
God Bless, Mark
"...when all is darkness and we feel our weakness and helplessness, give us the sense of Your presence, Your love and Your strength - help us to have perfect trust in Your protecting love and strengthening power..."
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Re: CK Level Test Result - Any Experts Out There?

Postby markgerard on March 6th, 2008, 10:22 pm

valger59 wrote:I had just posted a while pack about my CK level, it worried me a little cause mine was 122, which was normal for the range listed, which was 12-191. BUT....I just felt like 122 was a little too high, and it should be more around the seventy-ish level, as you said yours was, especially since I am a female. The guy at the ER said that it was fine, but at the time I was in there for heart palpitations, and he was speaking in relation to heart issues, not muscle issues. I haven't been back to my neuro yet, but need to go and see if he'll give me any ressurance about this. So far, from what I've read, the CK levels should be in the thousands with diseases such as als, but I'm not sure.
I have heard that they do vary a lot as far as the activity you've been engaged in, etc. Val


Hi Val,

122 is NOTHING! Look at mine, it was 359! Now THAT was cause for concern. CK levels above 500 from what I've read (I've had a chance to do a lot of research on this now) can be a little bit worrisome (sometimes, but not always) but it's the levels in the thousands that are the signs of you-know-what. My neuropsychiatrist said he had seen levels in the 30,000 range of people who were very, very ill.

You're right - the levels do vary with activity - my family doctor said she once saw a very high CK level in one of her patients but they soon realized it was from a massage the patient had prior to the test. If your level is within the specified range, you have nothing to worry about at all and even if it is elevated to a certain degree, it is quite normal for those with BFS. What scared me was the fact that my CK level was initially 269 and in the next test, it had jumped up to 359 (in less than a month) and I certainly wasn't working out any before the test. It was my rheumatologist who actually explained a lot about thyroid and CK levels which seemed to calm my fears. We'll see what happens in about 6 weeks when I get re-tested to see what this thyroid medication does. I'll follow up in this posting at that time.

Thanks for your reply,
God Bless, Mark
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Re: CK Level Test Result - Any Experts Out There?

Postby Nicko on March 7th, 2008, 4:56 am

Hi Mark,

Looks like you have had some interesting posts back to you original. I just wanted to add a comment made my neuro when I saw him the other day.

My CK was 285 and I was worried that it was too high. When I mentioned it to him he said

"Personally I think that the international scale for CK is unrealistically low. Over the years I have formed the view that anything under 500 is normal and if you add in things like injury and excercise then that figure can go up and still be normal".

This reassured me at the time.
Regards

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Re: CK Level Test Result - Any Experts Out There?

Postby edado69 on March 7th, 2008, 7:32 am

markgerard wrote:
edado69 wrote:it's not just me to day it: high CK no weakness, no relationship between the 2 events. If you think about it, it makes sense too.


I'm curious as to what your CK level was? I found out a few days ago that there is a relationship between an elevated CK level and hypothyroidism which I just started to take medication for (Synthroid). And I have had a tremendous amount of weakness and fatigue that also goes hand in hand with hypothyroidism.

I'm not quite sure I understand your message though - high CK no weakness, no relationship between the 2 events. Do you mean just a high CK level from the BFS?

Thanks and God Bless,
Mark

CK elevated may mean that muscles has been under some kind of stress (even a IM injection could do).
Exercise, is a possibility. Active lifestyle a second common option (alike the first indeed). Nic has has explained many others.
Now, no matter what, the end point is weakness. You just mentioned a cause of weakness/tiredness.
This may be a bit confusing. However, the fact is that it is difficult, in my opinion, to say anything about CK if there is not weakness. My levels were 284 or something like that. I remember that I had even higher levels in my '20 when I was training even harder.
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Re: CK Level Test Result - Any Experts Out There?

Postby markgerard on March 7th, 2008, 9:53 pm

Nicko wrote:Hi Mark,

Looks like you have had some interesting posts back to you original. I just wanted to add a comment made my neuro when I saw him the other day.

My CK was 285 and I was worried that it was too high. When I mentioned it to him he said

"Personally I think that the international scale for CK is unrealistically low. Over the years I have formed the view that anything under 500 is normal and if you add in things like injury and excercise then that figure can go up and still be normal".

This reassured me at the time.


This is VERY reassuring Nicko - thanks so much for your reply. Your level of 285 was still quite low as far as I'm concerned - the scale the lab uses here in Vancouver says anything under 300 is "normal" and is nothing to worry about. But if your neuro reassured you by saying anything under 500 is normal, that's even better.

Thanks again for your reply,
God Bless, Mark
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Re: CK Level Test Result - Any Experts Out There?

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