Elevated CK Level: Experiences?

I wanted to know if anyone here has ever had an elevated CK level in their blood work.I am a 40 year old female, and have had Hypothyroidism for 15 years. About a year ago, I started to feel extremely tired and was having muscle weakness. I thought it was just from carrying my children and working out really hard before I turned the big 40. My endo had tested my blood from May of 07 to current. My CK level went as high as 323 (the normal is under 160). My thyroid was off in March and my endo increased my synthroid Med, and I started to get the twitching about a month later. The endo was concerned for the elevated CK level and gave me the name of a doctor. When I called it was an ALS clinic. I was so upset, I called my Endo and asked him if he felt that I had ALS, he said no, and that he was sorry he did not know that this Doctor headed the ALS clinic. I was so upset that I started to see a new Endo, he diagnosed me with Hashimotos, my antibodies were extremely high. I told him about the weakness and my whole story, he said that all the weakness and the elevated CK was from Hashimotos. I have been seeing him for about 6 months, and my thyroid is almost stabalized, and the last two months my CK level normalized. Upon my last visit on December 27th, he told me that my CK level was elevated and that he felt I had ALS. He told me there was no reason why I should have an elevated CK and my thyroid levels almost normal. I had an EMG done in October and everything was normal. I decided to call the Doctor who headed the ALS clinic, and went in for a two hour exam, she was 99% sure I do not have ALS but something called myopathies. I am still a nervous wreak, thinking that I have ALS. I notice that when I am stressed out the twitching gets extremely worse. I try not to think about having ALS, but it is hard.Karin

After 4 years of twitching only I can say is normal EMG means no ALS. Quite another story is what we have; anxiety, thyroid, electrolyte imbalance, herniated disc(s). Who knows. No one has ALS from the members of our "aboutBFS" Forum.

Karin: I'm sorry for the emotional roller coaster you have been on. How frightened you must have been! It sounds like you are still struggling to come out of the fear about ALS. I hope you can quickly grab onto this new diagnosis and accept that you have nothing more sinister. It would seem you have had a thorough work up now and by a NMD specialist. Please try and trust in what you have been told because "99% sure" by someone of her training and experience is something you can likely "bank on". Let yourself finally experience some relief and now begin to work on coping with life as a person with a myopathy. This diagnosis explains your symptoms and lab and clinical exam results. The fact that your symptoms fluctuate with your stress and worry is not unusual at all. Every one of us has noted symptoms increasing with emotional distress. You will do yourself a huge favor by being kind and nurturing to yourself and working toward inner peace. Get a massage, listen to some soothing music, spend time laughing with friends and family, eat well, get decent sleep, make stretching a regular part of your day and be sure to focus on everything you can think of that you have to be thankful for on a daily basis.

Thank you for your responses. Both Neurologists said it was BFS, in addition to having this myopathy. I just never thought that stress can cause so many strange symptoms. I am just taking it day by day, enjoying my children and keeping a positive outlook. I just got back from the dentist and am twitching like crazy (stress)!Thank you - Karin

Karin,If you read BFS in a nutshell you will see that elevated CK can occur with BFS. Why? we just don't have enough research at the moment but it may be related to long term or large or repetitive twitching. Hashimoto's will contribute to this as well. The comment that I think you have ALS as there is no reason to have an elevated CK is irresponsible as well as incorrect. CK enzymes can elevate from exercise, from dehydration as well as from any number of fairly benign conditions. It is NOT and I repeat IT IS NOT a diagnositic flag for ALS with or without the twitching.If you doctor said 99% you can take it to the bank because no doctor will ever say 100% to anything - it is in our malpractice policies You are fine.Kit

Hi Kit!Thank you for your response - I was just on another website are you the same Kit?

I dont know was she incredibly smart and fabulous looking??? Nope thats not me! I belong to you guys exclusively.Kit

Kit,I have made an appointment with a new Endo, to cause a patient such undo distress without having a diagnosis is completely unprofessional. My Neurologist told me there are a 1,000 reasons to have an elevated CK, that it does not mean you have ALS. Are you in the medical field? I did read that having BFS can cause an elevated CK level. I am glad for this website and that I am not alone with having BFS along with the many other aliments.Thank you again Kit.Karin

Yes Karin, I am a physician and I am glad that your Neuro also clarified that completely untrue comment from the endocrinologist.Kit

I have high CK, too.Some time ago I wrote a little explanation for this:CK represents the amount of muscle-cells dying / damaged etc.. There is a constant turnover (that's why 160 U/l for females and 190 U/l for males is a completely normal status). The good thing is that muscle cells regrow (even more) - That's how body building works

Nic,How elevated has your CK been? I wish I could say I am a body builder. I used to work out a lot with a trainer, stress out my muscles a lot.

I also have had a slightly elevated CK level in the past. I have not had it tested again for many years. My brother who also has BFS has had a CK level as high as 1000. My Dr said that when you workout your muscles release toxins into your blood stream and can cause a rise in your CK. I would imagine that if your muscles are constantly at work (twitching) it would be the same as getting a good workout.

Hi Charlene,Do you also twitch? My CK level has been as high as 323 (normal being 160 for that lab), sometimes when I have my blood taken from a different Dr. the normal is 200. I just had it tested again and it was 194 (normal being 170). I am not quite sure why my Endo was so concrened for this, my Neurologist said that I could just be one of those people who have an elevated CK.How high was your CK? I started to get scared when they were testing me a year ago, and I looked on the internet about twitching and elevated CK and it all comes back to ***. I sure hope that it is my mind giving me all of these strange symptoms. I am twitching non-stop in my left calf and foot for days now and I just want it to go away so I can get the *** out of my mind!Karin

Hi KarinI have been a twitcher for 9+ yrs. The twitching started in my little toe and progressed from there. Now they are all over along with many other strange symptoms. I have pretty much learned to live with this and even though I still twitch daily It is more a minor annoyance at this stage. My CK was somewhere around 200 when I first began twitching. I have not had it checked again. If you have been twitching for over a year now you should not concern yourself with ALS. ALS quickly progresses. One neurologist told me that the difference between the twitching in BFS and ALS is that in ALS the twitching means the muscle has died and shortly after you would lose the use of that muscle.He said that ALS is not an evasive disease and there would be no doubt in a diagnosis.So that being said please try not to worry so much about having a terrible disease. I have spent way to much time worrying about an illness that never came. I hope for you that you make peace with this far sooner than I did.

Hi Charlene,I am trying to not think about ***, it is hard when a Doctor tells you that you have it. I think that after my EMG on Wednesday and she says that it is normal, I will feel better. It is nice to know that you too have had an elevated CK. Do you know what the difference between a CPK and a CK is? Or are they the same. I could go look on the internet, but am too scared - you never know what it is going to say!Wish me luck!Karin

Hi Karin,CK( creatine kinase)and CPK (creatine phosphokinase)are one and the same;a muscle enzyme that is released into the bloodstream and can be high after exercise or trauma. You'll be in my thoughts on Wednesday. I wish you the best.