I was on tegretol for nine months last year. I’ve been completely exhausted since then. I recently had blood work done that showed I have chronic or recurrent mono. The blood work also showed my folic acid and vitamin D was low. Through my own research I have found that this is a side effect of tegretol. It sure would have been nice if one of my many doctors had had that knowledge and shared it with me. Anyway, I wanted all of you to know. If you’re taking tegretol please be sure to take folic acid and vitamin D supplements.
Another factor to be aware of, Jamie, is that Tegretol should not be taken with grapefruit juice. The components of grapefruit juice can reduce blood levels of Tegretol -- something ELSE that the docs may neglect to mention.
Anyone who is on this medication should be checked every 90 to 180 days with a liver panel (blood work), to assess liver function and bone marrow activity. In relatively rare cases, patients who take high doses of Tegretol may experience toxic suppression of bone marrow, or related complications in the renal system.
Regards and best,
Red Lawhern, Ph.D.
Master Information Miner
I had ultra low levels of vitamin D but I was warned not to go out into the sun. My doctor wrote me script for a fast absorbing vitamin D but not all pharmacies carry it. I take
CHOLECALCIFEROL 50000 UNIT CAP not not
VITAMIN D (ERGOCALCIFEROL) 50000 UNIT CAP.
Have you noticed a difference in how you feel Karri?
It took about a 6 months but my bones hurt less and I have a tad more energy. I don’t get sick as often and I have started running b/c my muscles aren’t sore. It wouldn’t hurt to get tested. I take 1 tablet every week and they are about $1 a pill so its worth the money. Have you gained weight or suffer from depression? Both of those are symptoms of low vitamin D levels. I blamed my inability to lose weight on my hypothyroidism but every since my vitamin D levels has tested as normal I lost weight. 25 pounds since Christmas. I do diet and exercise which I did before. HTHs.
I am very sorry you found this out the hard way. Between your Doctor and Pharmacist you SHOULD have been told about the Folic / D / Grapefruit Juice. AND you should be expecting blood panels every three months or so to monitor your liver enzymes. Don't ask me to explain it all - I just know the liver processes Tegretol and its a pretty harsh drug. Dr. Red is certainly correct in this. I was fortunate that my "team" had this covered right from the start.
Elaine
How low was your vitamin D Elaine? I’m taking 5,000 units daily. I have been suffering from depression. No real weight gain, but I have extra fat on my stomach that I never had before. I’m glad you’re feeling better! My muscles and joints hurt too and I haven’t been able to exercise like I used to.
Elaine Iles said:
I am very sorry you found this out the hard way. Between your Doctor and Pharmacist you SHOULD have been told about the Folic / D / Grapefruit Juice. AND you should be expecting blood panels every three months or so to monitor your liver enzymes. Don't ask me to explain it all - I just know the liver processes Tegretol and its a pretty harsh drug. Dr. Red is certainly correct in this. I was fortunate that my "team" had this covered right from the start.
Elaine
One cautionary note, if I may (and this is in no way a slam on you, Elaine): I realize that the term "Dr. Red" may be playfully intended and that's fine. But anyone who reads my postings should be aware that my doctorate is in engineering systems. I spent most of my professional career as an information miner, open source intelligence analyst, and acquisition manager/systems engineer. I research the medical literature and write websites on behalf of pain patients and I try to provide emotional and informational support wherever I can. But I'm not a medical doctor and I'm careful to suggest that any information I find for people should be checked out with a licensed practitioner. If this seems a little finicky on my part, I beg your pardon. But I must operate under the same dictum that medical doctors do, even though I'm not among their number: First do no Harm. I can make mistakes and have been known to.
That being said, I'd also caution Jamie: 5,000 units of Vitamin D daily is rather a high dose. Here is a link to an NIH article on the subject: http://ods.od.nih.gov/factsheets/vitamind/ It's long but highly authorative.
Go in Peace and Power,
Red
We've never looked at my D levels so they must be ok. I take a multi everyday and I choose one with the highest D available. Like you, I have been very tired and depressed just like the winter blues so mines might be on the low side though the doctor doesn't seem to be worried enough to mention it.
jamie leigh said:
How low was your vitamin D Elaine? I'm taking 5,000 units daily. I have been suffering from depression. No real weight gain, but I have extra fat on my stomach that I never had before. I'm glad you're feeling better! My muscles and joints hurt too and I haven't been able to exercise like I used to.
Elaine Iles said:I am very sorry you found this out the hard way. Between your Doctor and Pharmacist you SHOULD have been told about the Folic / D / Grapefruit Juice. AND you should be expecting blood panels every three months or so to monitor your liver enzymes. Don't ask me to explain it all - I just know the liver processes Tegretol and its a pretty harsh drug. Dr. Red is certainly correct in this. I was fortunate that my "team" had this covered right from the start.
Elaine
Red, this certainly is NOT finicky to make this distinction and I am glad you did. I had understood or assumed that you were a medical practioner. Thanks Elaine
Richard A. "Red" Lawhern said:
One cautionary note, if I may (and this is in no way a slam on you, Elaine): I realize that the term "Dr. Red" may be playfully intended and that's fine. But anyone who reads my postings should be aware that my doctorate is in engineering systems. I spent most of my professional career as an information miner, open source intelligence analyst, and acquisition manager/systems engineer. I research the medical literature and write websites on behalf of pain patients and I try to provide emotional and informational support wherever I can. But I'm not a medical doctor and I'm careful to suggest that any information I find for people should be checked out with a licensed practitioner. If this seems a little finicky on my part, I beg your pardon. But I must operate under the same dictum that medical doctors do, even though I'm not among their number: First do no Harm. I can make mistakes and have been known to.
That being said, I'd also caution Jamie: 5,000 units of Vitamin D daily is rather a high dose. Here is a link to an NIH article on the subject: http://ods.od.nih.gov/factsheets/vitamind/ It's long but highly authorative.
Go in Peace and Power,
Red
My dosage was set by a doctor but different vitamin D products are absorbed by the bodily differently. Tegertol also interacts with my thyroid medication as well. Mine is a capsule. The one that my doctor didn't want me taking is like a gel cap. HTHs.
I’m taking a little round gel cap…uh oh.
Slightly off topic but still Tegretol related. When I was taking Tegretol I carefully followed the instructions about no grapefruit and to be careful in the sun as your skin could be more sensitive to the sun and burn more easily.
When I was in Tenerife back in February I got some sunburn on my arms followed within days by the return of my shooting pains which had been well under control for around six weeks. It may well have been a coincidence but I will personally be careful in the future in case there was any correlation between the two events.
vitamin D toxicity is very rare. a person is at a greater risk for vitamin D deficiency than overdose. one would need to ingest an extraordinarily large amount of vitamin D per day (40,000 units or above) to have cause for concern.
i take 50,000 units of vitamin D a week.
vesper
how much should I take??
I wonder if Gabapentin does the same. My vitamin D is low and I am taking supplements.
Hi Jamie
Thanks for this post. Makes me realize how little benefit I'm getting by way of total medical advice from my Neuro. Never once have I received any advice or warnings for this. My GP tests me regularly but I've found recently that his concern for the high tegratol level in my blood (60-65) as well as the lab who called him at 2:am to report it did not match the neuro. The GP called the Neuro and she told him she was not concerned. Now what!?
Deborah
If you can do so, then finding a new neuro seems advised, Jamie. I'll also bet that you haven't been having blood tests which include a liver panel every 90 days -- which you need to, if your Tegretol dose is high (say over 600 mg per day). This med is effective for many patients, but it is not without risk. Your neuro should know that and take prudent steps to ensure that you are not being subjected to toxic side effects.
Regards, Red
I wrote this post almost a year ago. Since then I've continued to struggle with illness. I'm now in the process of working with a doctor who does more in depth testing to see why my immune system isn't working properly. I'm being tested (through special testing [Igenex]) for lyme disease. Of course I'd been tested through the normal blood work your PC would do already for this but come to find out it doesn't show up in most blood work. TN happens to be one of the symptoms of lyme disease. Your PC is probably unaware of this. If any of you have TN/ATN and have also been diagnosed with chronic fatigue syndrome, fibromyalgia, POTS, chronic epstein barr, etc. then you might want to take a look at this website:
Let me rephrase that...I shouldn't say TN is a symptom of lyme, but that lyme can have TN-like symptoms.