Dilantin Blood Levels

[Dignan]

Hey,

I mentioned this in another thread, but thought I'd open it up in its own thread to see if anyone with Dilantin experience cared to share their story.

I was looking through old bloodwork data from the years I was on Dilantin and noticed that often times my total Dilantin levels were a little high (i never really looked in the past, just trusted the doctor).

Nothing dramatically high, but (ref range 10-20) I might have total number of 26 one time or 22 another. Other times it was at 18, which is normal.

There was also a Free Dilantin number that would sometimes be taken and it was usually normal, but sometimes could be a little high or low as well.

My question is it normal to have fluctuations like this? (I assume so) And if so, should my doc have said something if the total Dilantin number got a little high or maybe even lowered my dosage to hit more regularly directly in the ref range?

I know elevated Dilantin levels over time can cause long term issues and wanted to hear opinions to let me know if my doc was doing right be me (i may be switching back to Dilantin) or if this was nothing to be concerned about.

Thanks.:rock:

 

[petero]

Hey,

I mentioned this in another thread, but thought I'd open it up in its own thread to see if anyone with Dilantin experience cared to share their story.

I was looking through old bloodwork data from the years I was on Dilantin and noticed that often times my total Dilantin levels were a little high (i never really looked in the past, just trusted the doctor).

Nothing dramatically high, but (ref range 10-20) I might have total number of 26 one time or 22 another. Other times it was at 18, which is normal.

There was also a Free Dilantin number that would sometimes be taken and it was usually normal, but sometimes could be a little high or low as well.

My question is it normal to have fluctuations like this? (I assume so) And if so, should my doc have said something if the total Dilantin number got a little high or maybe even lowered my dosage to hit more regularly directly in the ref range?

I know elevated Dilantin levels over time can cause long term issues and wanted to hear opinions to let me know if my doc was doing right be me (i may be switching back to Dilantin) or if this was nothing to be concerned about.

Thanks.:rock:

wow - not that I have my records on hand right now, but I recall my phenytoin levels being around the 4-8 range, and I think 4 was low, but 18 as normal to me sounds very high.
I take 500mg a day.
To reiterate, I do not have my records with me, so my recollection is based on my observance a couple months ago (need a checkup again soon).

 

[Dignan]

The normal reference range on my tests was 10-20, so in the case of number 18 that would be within normal limits.

I don't have it in front of me so I cant say what the unit of measurement was, but perhaps our tests were using different measurements or maybe yours was for free dilantin and not total dilantin.

 

[Nakamova]

My Dilantin levels were 4 or 5, which was considered a tad low.

 

[Dignan]

Do either of you recall what was considered your "normal" reference range?

I'm curious if you guys had a different type of test than what I took that produced numbers around 20.

 

[petero]

http://www.nlm.nih.gov/medlineplus/ency/article/003430.htm
•Phenytoin: 10 to 20 mcg/mL


huh
memory is a dish best served stale - or at least so mine thinks

>>edit
maybe at some point my levels were AT 4 range - and the remarking by my doctor that the number WAS low is what led the number to stand out in my mind as relating to my levels...

 

[Nakamova]

Same as Peter's -- 10 to 20 is the preferred range.

 

[Dignan]

Maybe Peters referred to the Free Dilantin number. When I looked back on my tests there were two, one for total Dilantin (which was the one with the 10 to 20 reference range) and another for Free Dilantin (which had a reference range of 1 to 3)

maybe?

 

[miraclerock]

My experience with Dilantin is only for 2 months but I am also supposed to be in the range of 10 -20. However I've only reached those levels a few times. Lots of 7's but got calls that I was in 11 sometimes. I originally was taking 500 mg a day and eventually was raised to 800 mg a day. I also had asked my pharmacist to only prescribe me the "brand name". My brother had read somewhere that generic versions may not be up to par. I haven't taken a Dilantin level check lately but supposed to in the two weeks. We'll see if 800 is the right number.


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[petero]

My experience with Dilantin is only for 2 months but I am also supposed to be in the range of 10 -20. However I've only reached those levels a few times. Lots of 7's but got calls that I was in 11 sometimes. I originally was taking 500 mg a day and eventually was raised to 800 mg a day. I also had asked my pharmacist to only prescribe me the "brand name". My brother had read somewhere that generic versions may not be up to par. I haven't taken a Dilantin level check lately but supposed to in the two weeks. We'll see if 800 is the right number.


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here's some info on the phenytoin test: http://labtestsonline.org/understanding/analytes/phenytoin/tab/test
and what the numbers mean (at your own risk re: info - obviously not to replace any doctor recommended practices involving your own Rx)

I have heard that generic drugs are the same as brand name - but the binding elements can be different: same "stuff" but the "glue" can vary, which can result in varied rates of release