Written by
Jocelyn Winkless

"What an opportunity! And just at the right time.

I had RAI in January and was dumped quite literally into the hands of a very green doctor who had just arrived from South Africa.  He was wonderful. He listened, did research and discussed everything with me.  I dropped like a stone to a TSH of 65. But he used an aggressive approach to replacement therapy and got me back on my feet in 6 weeks with a dose of 150mcg.

Unfortunately after 5 months he resigned. (we are one of those rural Canadian villages that cannot get or keep a doctor) He decided that rather than transfer me to the next town, he would keep me.  He figured that this would work since he knew the new doctor (also from South Africa) and all would be well. It wasn't.

I went to the new doctor to get my blood test results to take with me to my old doctor.  The new doctor promptly dropped my dose to 125mcg.  Within three weeks I was feeling quite ill and worried about going back to teaching in September.  I tried to make an appointment with my old doctor and the receptionist refused to take the appointment because I did not live in the area. After much trouble I got in to see him.  He assured me that he would always be ready to see me. However his receptionist assured me I would never be allowed to see him again. However all was not lost, remember the new doctor was his friend and would communicate all blood tests to him and he would orchestrate my replacement. Joke.

The new doctor refused to carry out his instructions - refused to believe that there was anything wrong with me because my T4 was OK and refused to allow me to up my medication as much as 1 mcg even though I was having trouble with fatigue and body temperature, not to mention a sudden weight gain of 20 lbs.  He even suggested that I welcomed the chance to buy new clothes!!

I finally persuaded him to take a T3 test.  My husband demanded a referral.  I now have a referral for the end of October and today the doctor phoned my husband with my lab results.  He still refuses to admit anything is wrong yet my lab values do not add up.  No TSH  T4 very high normal  free T3  low normal.  I am presently looking for a new doctor and see the specialist selected for me by my Teacher's Society and vetted by the Winnipeg chapter of the Thyroid Foundation, at the end of October. I can only hope that she is willing to find out why my lab values make no logical sense.
Thanks for the opportunity to vent."

UPDATE - November 14, 1997

"I would like to update my story.

As September progressed into October, I began to become more and more dysfunctional. I thought I was going to have to give up teaching and the stress of being 'like this' was exacerbating my condition.  I knew this but felt powerless to do anything about it.  I had to wait for the specialist appointment didn't I? Not true! My counselor called me.  She had made an appointment for me with a physician from the next town. Someone would see me and my problems!!

I went to see the new doctor, he looked at my latest test results- 'normal'- listened to my symptoms.  I had to admit for the first time in my life that I was in trouble and needed help.  Oh joy.  He gave it to me.  He upped my dose to 137mcg. The improvement began two weeks later.  The change in dose plus the relief of knowing someone was willing to listen and help made a great difference.

Finally the long awaited day: a visit with a specialist at one of the big teaching hospitals.  I can tell you I was nervous, after all this was the rest of my life we were talking about. She had already ordered a large number of blood tests three weeks before the appointment. During the appointment she gave me the most thorough examination imaginable - it took an hour.  At the end of the appointment, she declared that my symptoms did not match my blood work!! Silly me had thought that was the reason for my visit. At first she wanted to talk about other autoimune possibilities. She then told me that anyone without a TSH reading is considered over replaced.  My heart fell to my boots.  But only for a minute.  She went on to say that this was not an immediate problem.  I perked up - she wasn't going to drop my dose.  She began to explain that thyroxine must be withdrawn very very slowly from hyperthyroid patients otherwise they feel lousy.  She recommended 12 mcg per week.  I had been dropped 175mcg overnight. Was this the missing information? I hoped so. She ran even more blood tests looking for irregularities but told me she didn't expect to see me again.  She hadn't known about the enormous drop in dose and seemed surprised that I would admit to incredible stress.

I phoned yesterday to see if any abnormalities had turned up in the bloodwork.  All tests were normal. I am now 4 weeks into 137mcg secure in the knowledge that the next drop with the new doctor will be tiny.  Did I suffer 8 weeks of hell  due to withdrawal symptoms exacerbated by stress because a very green doctor from another country did not know the power of thyroxine?  I guess I'll never be given a clear answer, but it sure looks that way.  I now have 100% of my brain back and about 95% of my body so I hope that this is the beginning of the good road to health."

Jocelyn