Endocrinologists Take a Backward Step in the Treatment of Hyperthyroidism

When I became an endocrinologist in 1981 I was truly excited about the field. At that time it seemed that the science of endocrinology was expanding rapidly and new discoveries were on the horizon particularly in regards to the way hormones effect the brain, mood and the immune system. Was I ever wrong! It’s thirty years later and none of those expectations were realized. In fact, I find that the field of endocrinology has barely budged since then and in some areas has actually lost ground.

Bringing on this round of pessimism on my part, is a recent “development” in the area of treatment for hyperthyroidism (over active thyroid). Ever since I was in training there have been two medicines, propylthiouracil (PTU) and methimazole (Tapazole), which are the mainstays of medical treatment for hyperthyroidism. Both medicines have been available since the 1940’s and show excellent efficacy and tolerability (and they are cheap!). Almost all endocrinologists I have met use these two drugs interchangeably although in pregnancy propylthyiouracil is favored due to rare birth defects in fetuses exposed to methimazole.

The “development” which I find so discouraging is the recent action by the FDA to place a very strict (black box) warning on the use of PTU due to the possible occurrence of a rare form of liver injury attributed to the drug. After almost 70 years of exemplary use, this has given rise to extensive debate in the endocrinology literature about how to restrict PTU use.

While it is true that methimazole is equally as effective as PTU to treat hyperthyroidism, I have personally seen numerous cases of fairly severe allergic reactions to methimazole. Fortunately it has been easy to continue medical treatment by simply switching to PTU. If we can’t use PTU freely then the only other options are surgical removal of the thyroid or eradication of the thyroid using radioactive iodine, neither of which is free of potentially adverse outcomes.

I have never encountered severe liver injury with PTU nor has any of the colleagues I have polled. It has to be very, very rare. This is obvious because it has taken 70 years to get around to recognizing it formally. Can we really call it progress that we now have one less simple option for treating hyperthyroidism, a common and relatively benign disease? Let me take my cynicism to the next level. I won’t be surprised if a major pharmaceutical company soon announces the development of a new drug for treating hyperthyroidism. If I’m right the new drug will add nothing of real value that wasn’t previously available but is many times more expensive then the drug it replaces.

So goes endocrinology into the new century, the stogy old lady of medicine.

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  • Christine Potthast

    In 1993 after the birth of my first child, I developed a severe form of Grave’s Disease. I was so ill, my resting pulse was 120. I was exhausted just from carrying the baby and I was hungry all the time although I ate around the clock and still lost a lot of weight, eventually dropping to 52 kg. Consulting a well known thyroid specialist, Dr. Emil Steinberger, in Houston, he recommended radio-active treatment. My situation was difficult. I had a newborn baby, lived outside of Houston and did not know anything about thyroid disease. He had given me two options of treatment, thyroidectomy or thyroid removal (thyroidectomy). I was very much opposed to radioactive treatment for several reasons (mainly cancer in my family) and fought heavily over this with him. His institute specialized in radioactive treatment, so that was his method of choice, of course, and since my case was a very serious case of Grave’s Disease, he would have loved to use his treatment option. After weeks of struggling without any treatment, I finally insisted on surgery. I was so desperate and weak, I yelled at him and he reluctantly agreed. I was given PTU in preparation of the surgery for 8 weeks. During these 6 weeks all my symptoms disappeared, and I began to feel very good. Looking back, I never again felt as balanced while taking thyroid replacement medication as I felt during the time when I took PTU. Apart from the fact that my severe symptoms disappeared and I immediately felt better because of that, I also felt very well balanced. There was no fatigue, no anxiety, no sleep problems. I was calm and could have gone on like that forever if that would have been an option. – However, PTU as a third treatment option was not recommended. Dr. Steinberger advised against it since I wanted to have a second child. He cautioned it could cause birth defects. – What happened to me during and after thyroidectomy? – Well, I almost died the night after my surgery. The surgeon had to remove most parathyroids and I went into sever calcium deficiency. After 5 hours or so in tetany, my neighbor finally found a nurse who was familiar with the complications of thyroid surgery and I was rescued last minute while my face was already getting numb. By that time major parts of my body where cramping and they could only move me from one bed to another by stretching the sheets. Since that night, I have a paralyzed vocal cord. Intense speech therapy gave me a voice back that is ok. Since my thyroidectomy 18 years ago, I have used Synthroid. For years, I have been very tired, had memory problems and problems concentrating and I have taken anti-depressants for years. I complained to my endocrinologist, Dr. Shapiro, in Houston for two years until she finally took a vitamin D test. My vitamin D levels were very low. Taking vitamin D helped for some time and improved my memory but it did not solve the issue long term. So, I consulted another endocrinologist, Dr. Wheeler, in Houston. He diagnosed hypoglycemia and low T3 levels and prescribed Metformin and Cytomel. I was not willing to take Metformin and began treating my hypoglycemia by changing my diet to a gluten free diet for about 8 months. During the summer of 2010, I felt better than I had for a long time. I attribute the gluten free diet to that as well as the fact that I was now getting T3. While I felt much better and lost weight, my anxiety was still there. A huge construction issue (after our house flooded in 2009) added to my stress level. I was not able to continue my strict diet and fell back to eating wheat after 8 months. Since then, I have not felt as energetic any more. My memory has become worse again. I read two books ‘The Hypothyroid Sourcebook’ and ‘Overcoming Thyroid Disorders’. Both helped me to understand the complexity of thyroid issues. After another source, not a physician advised me not to take Cytomel for too long and pointed to the benefits of Armour, I began reading about Armour and tried to find a physician who would prescribe it. This was the beginning of 2010 and coincided with my first visit to Dr. Wheeler. I asked him about Armour, and he informed me that it has been taken off the market and that he could proudly claim to have been part of that. (That is all I know as I never consulted him again. – He has a degree as a lawyer as well and may have been part in whatever commission was involved in banning Armour. He may have been hired either by the manufacturer of Synthroid or by the FDA, who knows). Finally, I found an endocrinologist who is willing to prescribe Armour. His name is Dr. Amin Jamal. He is also in Houston. I have taken Armour now for 3 weeks. Interestingly, my intense anxiety has disappeared. My memory and my concentration have still not improved and I still worry a lot but I can manage it much better. The intense anxiety is gone. Also, I am still tired, the dosage may not be right, yet. The new endocrinologist started with only 2 grains as he worries for my Graves Disease to flare up again – as it turns out one side of my thyroid gland has grown back. My endocrinologist of 15 years never thought of taking an ultrasound. – What my story tells are how patients are kept in the dark about their treatment options. It is always advisable to get a second opinion from another endocrinologist. – I was never aware that Synthroid only contains one of four thyroid hormones. The only reason why I never found out is because of my utter trust and confidence in this highly acclaimed endocrinologist, Dr. Shapiro. She is well known throughout Houston. I never questioned my medication but looked for other things that could be wrong. If I I had researched thyroid medication earlier, I may have had a chance to try the old Armour formula. My case also shows how incredibly complex thyroid issues are. I have not even talked about the stress on my adrenal glands, there may also be a deficiency in the parathyroid hormone. I feel comfortable with my new endocrinologist and more tests have been scheduled. Some of my excessive stress in my life is decreasing and I am determined in trying to find the best treatment option for me. I have no idea how the old Armour would have worked for me, of course. If the new formula will not make me feel better, I am not sure what else I can do other than trying to get Armour from Canada. – I wonder how I would feel today if I would have continued to use PTU. From what I understand you would not have objected to the use of PTU during pregnancy. – I could continue my story… I was nursing during the time I used PTU… my baby was 7 months old and I had to get a blood test for him every week for 8 weeks in order to be allowed to use PTU. It was a nightmare.

  • Christine Potthast

    My previous post was very long. However, there is one more aspect that I need to add. Right now, I am trying to find out whether my thyroid issues could be related to food allergies. Since I felt so much better while I strictly followed a gluten free diet, I am wondering about the connection of thyroid disease and allergies.