Has anyone quit taking Tegretol/Tegretol XR because it gave them Hypothyroidism?

[forward2007]

I have been on Tegretol or Tegretol XR for 22 years. I didn't know it until recently but I now have Hypothyroidism. I recently read that long term use of Tegretol leads to Hypothyroidism in some people. My Neurologist added Lamictal to my seizure meds about three years ago when my seizures were not under control to the point that they had been for twenty years. Until then, I was only on Tegretol. I am thinking of seeing my Neurologist to see what they think about me getting off of Tegretol and use only Lamictal now that it looks like the Tegretol gave my Hypothyroidism. I am only 41 so it is not that common for someone to get Hypothyroidism at that age.

 

[epileric]

I've been on Tegretol for over 30 years (possibly 35) & I've never heard about it leading to hypothyroidism. Now that I think of it, I did bloat put on weight very suddenly but I'm pretty sure that was just age & too many white chocolate brownies at the restaurant.

Thanks for mentioning the hypothyroid connection!

 

[RobinN]

Just thinking... because Rebecca also had issues with Tegretol, which was the first med she was put on.
The liver needs to be checked often with this drug. I think in some people it just overwhelms the system. Rebecca had severe vision problems, and her seizures increased. Unfortunately I didn't realize it at the time. I thought the increase was just Rebecca's system out of control. Of course it was, but due to the toxins in her system. The meds were certainly toxic.

Do all that you can to, heal from the inside out.
Rebecca is now seizure free for 7 months

 

[rejoicing in hope]

Yes, Tegretol can cause hypothyroidism. I have been on it for 20 years and have just discovered that I have thyroid issues as well as several others from taking Tegretol. It is tough when you HAVE take the meds in order to control seizures but they cause so many other things as well. Hope this helps!

 

[Krista2882]

I do know that Tegretol caused me to gain tons of weight. Before I started taking it about 10 years ago, I weighed about 140. Now I weight about 175. The good thing is that I'm tall so I don't look "fat". But I know how many fat rolls I have and I really don't like them. LOL. My doctor wants to have me come off of the Tegretol (I'm also on Keppra and Lamictal). That would be great if I could lose the weight I've gained! PLUS It would be safer for me to have kids when that time comes around. AND I wouldn't be in danger of developing Osteoporosis down the road. And hopefully I won't be so tired all the time. :banana:

 

[Dottie]

I know I gained weight about 20lbs on Tegretol, and was sleepy and would have a hard time waking up in the morning, and now have osteoporosis in my back and hips. I've also always had eruptions on the skin in odd places, face, legs, arms and chest that leave scars that look like burn marks. Now that I've stopped Tegretol last fall I'm still waiting to see how long it will take to stop getting them. Has anyone had trouble with their skin on Tegretol? Did the problem go away after stopping the med?

 

[SlimBlue]

I've been on tegretol for 17 years, with kepra and lamacital for 15 years, and a few years ago I was diagnosed with hypothyroidism- but no mention was ever made about a possible connection to the AEDs.

I'm male and I've only just turned 40 myself, but it seemed to be taken as a fairly common condition (whether it is or isn't I actually don't know!)

 

[trillium]

Yes tegretol effects the thyroid. If you Google tegretol and thyroid, there is a lot on the web about it, it decreases thyroid function according to the drug manufacturers web site.

 

[LMReggcellent]

I was taking Tegretol XR for seven years and my doctor took me off because of hypothyroidism. It was pretty expected since my mother and all of her sisters have it, but my doctor said Tegretol could have made it worse. I have it now but I haven't been taking Tegretol for eight years.

 

[Belinda5000]

I've been on Tegretol since it came out in 1975 and the only problem I had with it was in the beginning when I got fatigue and Tegretol XR sends my sz's through the roof.

 

[C0urt]

i cant take xr, it makes me sick, i take the highest dose of generic tegratol. but i have problems keeping weight on. it is my own fault, I am lazy and dont eat right. I went from 180+ to 140, no with a bit of effort back up to 160, that's as high as I will get with out weight powder and serious effort exercise.

 

[kirsten]

I didn't get hypothyroidism on tegretol but I did get hyponatremia. I had no idea that that was a risk, so I spent a whole year feeling ill before it was accidentally found through a routine blood test. I'd spent a very long time with encepalopathy as a result, and my doctors tried to treat the hyponatremia without taking away the tegretol but it just wouldn't work, so I had to stop taking it entirely. I didn't gain weight as such but I did have a lot of water retention, which I later found was because of my sodium imbalance.

 

[trillium]

I have been on Tegretol or Tegretol CR (controlled release) for 32 years for tonic clonic sz. It was strange, my blood tests never went past barely therapeutic level and my dose kept being raised to 1000mg/ day until I had a bad reaction last year (still showing barely therapeutic range in my blood). My neuro has been slowly decreasing my tegretol dosage over the past year. I'm now taking 400mg/ day with the same results as far as seizure control. I have lost weight (gone down from xl size clothes to medium), my body/ brain are slowly healing after the decrease in the tegretol. Healthier and feeling better than I have in a long time.