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Old 09-07-2007, 03:32 PM   #1
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TegXR issues

I'll need to call my Doc NeXT week... but have questions for the rest of you on it.

I am not experiencing any sideFX, so thats a good item. However I just recieved lab results back. Both Standard results and Epoxide were above **MY** normal. Standard Teg was above the high end of the scale, about 4 1/2 points above my normal seating.

I had to call the office back for the Epoxide results. They forgot to write them down thinking I wouldn't care. They were even higher than normal. Last time I was .1 above normal I think I was. This time it was 1.3 above normal (result was 3.5). Since 2002 I had held at 2.2 for Epoxides.

Last time (about +16 months ago) it came back 9.6 standard; but Epoxide was so close to normal results we ignored the standard level and said all was fine. This time with Standard Teg levels being above the "approved" range and my "free levels" or the "epoxide" levels being signifigently higher I'm a little concerned.

Do any of you know if there is a linear chart to convert Epoxides with standard CBZ (carbamazepine) levels? Or is it dependent on the patients system?

--Travis

 
Old 09-11-2007, 05:03 PM   #2
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Re: TegXR issues

I **DID** locate my book again so that helped for medical data.

Tegretol (and XR) are 75% binding, so the CBZ-E (Epoxide test) looks for the 25% in a persons system thats non binding.

I did the math using my previous levels and they came out about right, a few decimals off but acceptable to my "standard" results.

Now if I can just get a reply from the clinic that will satisfy me. Calling a level thats much higher than normal "normal" does not sit well with me. I think I am starting to scare the nurse with the information I know and my past history of blood work. They don't expect us to be educated on level ranges and binding percentages.

I'm thinking I may need a Liver (or Kidney?) test just to verify if all is fine on the home front... but I have to see what Doc says; if he agrees.

 
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Old 09-13-2007, 05:16 PM   #3
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Re: TegXR issues

to travis from bevin i would have your doctor ( neurologist) seriously consider doing a liver function test on you because of such high and not normal teg levels in your bloodstream and body. these levels may indicate toxicity to the medicine. the levels you describe are definitely not in the normal range and a good neurologist would tell what is considered normal and what is not normal.good luck and best wishes to you. I hope this is helpful to you. bevin (someone who likes to know your advice on any questions that come up having to do with seizures.)

Last edited by bevin 30; 09-13-2007 at 05:17 PM.

 
Old 09-13-2007, 07:14 PM   #4
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Re: TegXR issues

Thanks... After the two calls to my clinic (and the one to the lab) my Neuro relented and agreed to a Liver test. It's pestering me that they don't seem to have issues with the test results and I have to be the one nearly badgering them about it.

I'm just glad I kept my previous test results that I was given (not all of them) to have a base to compare to. Looking down the road farther I HOPE I don't have to go off Teg. It has worked well since I was a kid. Worst case IF I am taken off it I may need to be placed on a different med; or hopefully what I am on will work without a new one. I'm getting the cart ahead of the horse here; I try not to do that.

But thats something I try to do when it comes to medication... Have a gameplan in order so I don't get suprises like this. I'm just in a lets just see what comes now.

I don't panic, I address the facts. Most patients don't do that so my type are rare when the clinics deal with me. It almost makes me chortle if there wasn't a hair of concern currently in the picture.

--Travis

 
Old 09-15-2007, 08:40 AM   #5
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Re: TegXR issues

Quote:
Originally Posted by Travis from MN View Post
Thanks... After the two calls to my clinic (and the one to the lab) my Neuro relented and agreed to a Liver test. It's pestering me that they don't seem to have issues with the test results and I have to be the one nearly badgering them about it.

I'm just glad I kept my previous test results that I was given (not all of them) to have a base to compare to. Looking down the road farther I HOPE I don't have to go off Teg. It has worked well since I was a kid. Worst case IF I am taken off it I may need to be placed on a different med; or hopefully what I am on will work without a new one. I'm getting the cart ahead of the horse here; I try not to do that.

But thats something I try to do when it comes to medication... Have a gameplan in order so I don't get suprises like this. I'm just in a lets just see what comes now.

I don't panic, I address the facts. Most patients don't do that so my type are rare when the clinics deal with me. It almost makes me chortle if there wasn't a hair of concern currently in the picture.

--Travis
hello travis i am sorry that you had to be the one to bug your neuro and the lab to do a liver function test but that test really is important it will tell you whether the liver function is or has been affected in any way.It is always good to have a plan of action. I have been a patient who did nothing but stump my neurologists from the time I was four . they could never properly tell my mom I had A seizure disorder or what was wrong with me til i was twenty one years of age. My mom was constantly having to fight with my dotors when I was younger because they did not believe my mom that I was sick. Sometimes fighting with your doctor and lab testing places means that it is time to change to different healthcare providers. I am glad that your neuro and the lab testing facility finally agreed to to that test. your neuro should be doing the liver function test as matter of course in your treatment with tegretol medicine to see how well your liver is functioning from the very first time you started taking that med. my neuro always does a liver function test on me when it comes to my liver function for depakote. I do not want to sound mean or nasty about what your neuro shoud be doing as a course and part of treatment with tegretol. what you described to me was very much a concerning and bothersome issue. I send only my best wishes and thoughts to you. your very concerned message responder. bevin

 
Old 09-15-2007, 01:18 PM   #6
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Re: TegXR issues

The problem changing Dr's (can't change providers, I'm on MA) is there are ONLY TWO others left up here and I'd have to change clinics. I'll have to change within a few years anyway (dr is retiring). By then hopefully this city will have added some additional Neuro's.

I lost the Dr I liked due to a change of field. So for now I am holding with this one for now. I don't want to deal with riding an hour back and forth to a better clinic (or clinics pending where I'd go) just to see better Dr's that I have never seen before.

I'm sure my previous Dr would have sided with me on the liver test, but again, that Dr changed field of pratice from Epileptology to Sleep Study. I DID make a call when I had problems with the Dr originally recomended to get backup names when I had a "black flag" (very high risk) med recomended to me. The Dr thought as I did that there was no reason to try that medication while I was still well controlled.

--Travis

 
Old 09-17-2007, 07:38 AM   #7
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Re: TegXR issues

Tripp has his levels tested last month for Tegretol xr

Result are 10.4 ug/ml

it says under limits normal is 4.0 to 12.0

It also says in conjunction with other antiepileptic drugs that
Therapeutic is 4.0 to 8.0
Toxicity 9.0 to 12.0
It looks like to me his levels of Tegretol is a bit high.

HIS Depokate was 52 ug/ml limits are 50- 120



We see the neuro today so I am going to ask her and get her take...the blood test were done by his regular doctor.
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Old 09-17-2007, 12:19 PM   #8
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Re: TegXR issues

Betty, nice to see you back again!

I go by my typical blood results from Teg that have established a baseline for me to draw conclusions from. Being I have held at those numbers for years I should hold at those results seeing my dose has not changed, and I held at those numbers even before Topa, and when at a low dose of topa and increasing topa. So I conclude that medication does not effect it.

My other issue is long time of the medication. That can be a potential item of "buildup" being I have been on this med since the very beginning when I was a kid.

Had there been other drastic medication alterations (different medication in my system) I could see a reason to not pay attention to the numbers. However even when on Dilantin the Teg held the same I know from memory, but I don't have it on paper.

What I am saying is Look at the past blood results and see where a person usually stands for blood results. History will tell you what "normal" has been unless increases have been made.

4-12 is the "acceptable" range for Teg. Above 12 they tend to consider toxic. It also goes with how the patient is feeling.

However, as I may or may not have typed, I did/do NOT feel toxic currently (and I know what it feels like being on 2200/day in the past) so I discard the toxicity from dose.

I know the issues about the case you type about (will leave it at that) and it's not always easy for people to say if they are toxic or not.

--Travis

 
Old 09-17-2007, 02:29 PM   #9
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Re: TegXR issues

Travis, She cut down on the Tegretol xr to 200 in the after noon....said this could be one reason he is getting so sick and vomiting! We have had such problems with him getting sick for 2 1/2 years ever since he was upped to 500 mg in the afternoon....so only way to tell is cut back...she took blood today and will be checking his liver and CBC and other testing...levels for Depakote and Tegretol....she said too, that the 52 was low range for the Depakote so IF we have to up something she would up that instead.
Tripp has stomach emptying problems and on meds for that,also.....I think most of his problems are from all the meds he is on!! He has had the gastric emptying test, endoscope and small bowel last two no findings! BUT he STILL was throwing up almost daily.....so now he is being treated for hpylori....we see the GI doctor next Monday...and hope he will check his pancresus also!

I hope you get some relief and NO MORE SEZURES!!
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Old 09-17-2007, 02:32 PM   #10
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Wink Re: TegXR issues

OH TRAVIS...get this at the neuro today she got to see Tripp have that head turn seizure......I was SO glad she saw it! It lasted about 8 seconds.....and he said "I'm okay" after it...she said to me...this is just how you said he does!!
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Old 09-18-2007, 10:45 AM   #11
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Re: TegXR issues

:scream: why don't they believe us until they see it with their own eyes!!!

Least the Doc was able to witness it. (grimace)

I had to deal with the bank before going in to have my level drawn. Having so many passwords and PIN's I forgot what one I use on by bank card. I had to change it. Couldn't remember if it was the old house address, or phone #, apt # friends apt# (other numbers!!) or what I used. I had too many variables that I use that don't have direct ties to me for security reasons. At least NOW I know it.

I'll find out in a week what the liver test says. Hopefully all is good. I'm not that worried, just a little. If changes have to be made to my treatment THEN I will dig in my heals.

--Travis

 
Old 09-18-2007, 01:57 PM   #12
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Re: TegXR issues

GET THIS TRAVIS!!! Tripp's lipase levels are at 77...normal are12 to 70 she said his Tegretol levels are at 13.9!! SHe is cutting him back...wants to not give him Tegretol tonight or tomorrow morning are afternoon dose....I am to give him 400 mg tab Wed night and then come in Thursday morning and let them check the levels again!!

I AM VERY CONCERNED!!
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Old 09-18-2007, 03:21 PM   #13
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Re: TegXR issues

Skip two doses! I'd be freaking out. If the normal dose is a 400 I'd ask if you can drop it to a 200... but a patient still needs medication. the lack of meds is what can trigger seizures and need emergency room attention. Especially over that length of time.

See what the Doc (little late now) would say if you can get a hold of them if you counter their instructions with a suggestion of half dose of Teg.

REMEMBER ** I am only a patient ** so do not take what I say as that of a professional. I am a patient myself.

--Travis

 
Old 09-18-2007, 04:10 PM   #14
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Re: TegXR issues

Well, he has had the 400mg of Tegretol NEW 200mg of Tegretol this afternoon...so he will be without the 400 mg tonight and the 400 mg Wed morning and without the 200 mg wed afternoon....BUT will take the 400mg Wed night...she wants his levels checked Thursday morning BEFORE giving him his meds...I worry about GM seizures too!! BUT she is the doctor....

Speaking of PIN numbers....I have two bank accounts and one I can never get it right...I have to call them each time I use it to have them reset it.LOL
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Old 09-22-2007, 07:28 PM   #15
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Re: TegXR issues

:grunt: I recieved the liver test back... "acceptable" ARG!!!!! I was not sent the numbers on the what is it, 6 or 8 tests they do on a liver function test. Drives me batty. I'm going to have to call my Dr's office and ask for the current test results (in depth) and the previous one as well so I can compare them.

The problem is the previous one is a good 4 years old. So it is outdated and not comparable. However it gives me a secodary test to look at when on the same medications. Keppra was higher, can't recall what my topa was back then. I'll have to look at the date. I remember I had eating issues back then and it was suggested I go on a vitamin.

I am one of the few you can't slide by with and say "levels are fine". I need specifics or you don't get me off the phone. My prior Dr was smart enough to know this and sent me the test results raw (gosh I liked him for that!).

I have an office visit in about 2 weeks. That is one good thing.

--Travis

 
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