QUESTION:

Dear Dr. Heller,

I noticed someone emailed you asking about long term use of Tegretol, so hopefully you can answer a question for me.

I'm taking Tegretol (and have been about 20 years now) for Petit Mal Seizures. It's been doing a wonderful job in controlling them. I have not had one for over 10 years now. However, since the day I started taking Tegretol I noticed a shortness of breath, tiredness and fatigue (which I know are common side effects) but as the years go by I'm finding myself more and more tired - lack of energy (I can't even vacuum an entire room without having to sit down and catch my breath). It feels like my muscles are weakening (can't even peddle a bicycle anymore), tightness in my chest and getting more shortness of breath as each year goes by. I've also put on about 60+ lbs. since being on Tegretol, which I know is another side effect. I'm still gaining, yet probably more, because I'm too lifeless to do much anymore. It's been a wonderful life since not having seizures anymore, but I don't want to live like this.

Tell me, is it the Tegretol that's doing this to me? What can I do? I feel as though I'm slowly losing my life to live. I'm scared.

DR. HELLER'S ANSWER:

Approximately 18% of BPD patients put on Tegretol develop "melancholia". This is almost always reversible by adding thyroid hormone. The same phenomenon occurs in Tegretol patients who don't have the BPD.

Tegretol can cause you to become hypothyroid (low thyroid). Symptoms of low thyroid can include: fatigue (which can be severe), numbness and tingling, reduced memory and concentration, constipation, weight gain (even with strict dieting and exercise), dry skin, puffiness around the eyes, hair loss, coarse hair, slow heart rate, high cholesterol, fluid retention, PMS, cold intolerance, orange skin color, large tongue, low body temperature, anemia, depression, progressive changes in personality, seizures, and eventually coma and death.

Low thyroid is monitored by blood tests, although the TSH is usually normal or low. This is referred to as "non primary hypothyroidism."

The shortness of breath and chest tightness could be due to your heart. What I normally do with a patient like you is check lots of lab tests (CBC, CMP, UA, FTI, TSH, B12, lipid, ESR), get a chest x-ray, EKG, and a referral to a cardiologist for an evaluation.

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