Back After Extended Absence: Paxil Withdrawal

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

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.sharon

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

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

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: 500Needle-Injection (shot etc.): 800Sore muscle: 1000 after trainingStrong Sunburn: 2000Myositis 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).

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

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.

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.

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 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.

I agree with BOSTER. Values up to 500U/l are "slightly elevated". Only if it get's higher they slowly start beeing interested in it.One thing that might help understanding the "CK-issue": Neither is CK produced by a desease nor is it some kind of "poison". All muscle cells are "filled up to the border" with this encyme like waterbaloons! Imagine grapes in a glass of apple juice, which represents the blood. You only have to stomp them a little tho get high elevated grape levels.

That's a great comparison Nic with the grapes. I don't know if I would really consider 500 U/L to be only "slightly elevated" in my opinion - elevated, yes - and not to the point of real worry. But 500 still seems a little too high for comfort for me. I'd rather be down under 300 and since I'm currently at 359, I hope my next tests will reveal a much lower level. When I first had my CK level done in 2006 after my BFS started, I was way down in the "tens" somewhere - much more comfortable back then God Bless, Mark

Hey Mark - It is so nice to hear that you have an elevated CK and that I am not alone with this problem - you can read my post on (elevated ck). I, too, am hypothyroid. I was just recently diagnosed with Hashimoto's thyroiditis. I was having the muscle weakness and twitching - you name it I have had every side effect of Hashimotos. I was a complete wreak when my doctor seemed to be concered with the elevated CK. Here are what my CK levels have been in the past year - so don't worry - it is due to your thyroid and having BFS.5/07 - CK - 167 Normal <1606/05/07 - CK - 203 Normal <1606/16/07 - CK - 177 Normal <1706/26/07 - CK - 198 Normal <1608/07 - CK 236 Normal <1608/28/07 - CK 323 Normal <160 - It was pretty high here!9/07 - CK 158 Normal <21510/07 - CK 174 - Normal <21512/07 - CK 264 Normal <2151/19/08 CK 198 Normal <170I hope this helps you Mark, I know how you must feel. My last endoncronologist told me at my December results that I had ALS. I had already been to a neurologist and had an EMG done - but because a doctor was telling me I had *** I freaked out. I had made an appointment with the *** clinic here in Los Angeles, and was told that she was 99.8% sure I did not have ***. There are many reasons for an elevated CK she also informed me. I can give you the run down if you would like. I see my neurologist every month to monitor the CK level and will continue doing so for a year - not because they fear I have anyting it is for me and to reassure me that I do not have that horrible ***.Please email me if you have any questions - I hope I can help you!

Thanks Karin,This is reassuring to hear that I am not alone and that your CK Level was elevated due to your thyroid problem and also having BFS. My endocrinologist suspects thyroiditis but I guess we are still considered hypothyroid nevertheless. Weakness, fatigue, head to toe twitching - you name it, I've had it since October and it was frightening but I think I am on the right track now with taking the Synthroid medication - I've been on it for just under a week and I can feel a difference already.Thanks for letting me know about all of this - it is great to be able to share these kinds of experiences with others having the same problem. It is a shame that you were told you had *** - I wonder what this endocrinologist was thinking? Your CK Level was pretty high last August - that's what frightened me at first.Thanks so much for your reply - I think I am ok for now but I will e-mail you if I have any questions that come up.God Bless, Mark

Hi Mark - I am glad that the Synthroid is helping you - I noticed your tsh level was pretty high - has your endo tested your antibodies? It would be a Thyroid Peroxidase (TPO) on your bloodwork. True, we are still Hypothyroid. I noticed when my TSH level was in the 13 - 14 range I was having a lot of the twitching, muscle weakness, etc. What dose of Synthroid are you taking?This is the first month that my thyroid level has been in the normal range in over a year, which Hashimotos can be hard to stabalize. I can actually say I feel somewhat normal again. I still get the twitching and other strange symptoms when I get stressed out.Keep me posted on your CK levels - would love to hear what your Dr's tell you.Take care - and again if you have any questions regarding your thyroid do not hesitate to contact me - I wouldn't want you to go through what I have been through!Karin

Hi Karin,I don't think my endo tested the antibodies - Free T3 and Free T4 were done during each TSH Test. My T3 and T4 Levels were out of whack when my TSH was at 14.3 and then again at 11.5 but they stabilized when my TSH went to 9.5 which is where it probably still is now - somewhere around there. I am taking 0.05mg of Synthroid once a day.I've had the whole BFS thing for over 2 years now but it really got bad last October when I started to notice the thyroid symptoms - the extreme fatigue and weakness, joint and muscle pains in different places that would come and go all day long (very sore neck and jaws), I was incredibly sensitive to cold weather and in December/January, my voice started to become very hoarse and deep - "husky" as they call it on the symptom list. Along with that was unbeleivable eye twitching that actually made me dizzy (which I still have - still lots of eye twitching and it is rapid and jumpy and still some dizziness), an incredible ringing in the ears - almost like a constant white noise and some blurry vision as well. And along came the hyperexcitability of my muscles mostly in my upper body but especially in my hands (I just pull on a door handle or make a fist and my fingers won't stop jumping and twitching). I also noticed an incredible amount of unusual anxiety which I don't know if I can attribute to the thyroid or not (it seemed like it was causing it because it was an abnormal kind of anxiety and nervousness). I do a lot of the neurological tests each day to "test myself" and I noticed that on some days, they were starting to slow down (not always) - just a general slowness of some of my motor skills (like flipping the hands over and back, tapping the toes fast, tapping the fingers together fast, etc.). I'm still getting a lot of these symptoms as it is early in the process. I'll let you know about the CK Levels and how I make out with the whole thyroid condition - hopefully, this will get better very, very soon.What symptoms did you have - anything like the ones I have mentioned? Are you on Synthroid as well?Thanks again for your reply,God Bless, Mark

Hey Mark - I am on Synthroid .125. Last year in April, My Endo increased my Synthroid to .135, and that is when all of my crazy symptoms started - I had the horrible muscle twitching and the nervousness/anxiety. I kept telling myself that it was the increase that caused all of these strange symptoms, and some can be caused from too much thyroid med. You can read my post on Elevated CK anyone? to see what crazy things have happened to me. My new symptoms are that I am weak in my arms, right below my sholders, they start to ache a lot, and of course, the hand pain.I am still scared that one day they are going to tell me I have something horrible - I am trying to get that out of my mind, but it is hard.I see the neurologist tomm - I'll keep you posted!Karin

Thanks again Karin - I will check out your post on Elevated CK. It's hard to get these thoughts of something horrible out of our minds - I'm right there with you. Let me know how things go at the neuro and wishing you all the best,God Bless, Mark