Part 2 of 13 of Anna’s Story at CanadianLymeStories.com

Around 40, some time after having my second child, my overall health began to decline. I itched. My thinking was sluggish. My recollection of recent events (like where I had left my car) was alarmingly bad. I was cold all the time. I could just not get enough sleep. I would sleep and sleep and sleep and just want more. My digestion was sluggish. I had gained weight around my middle. My skin was dry. I had developed a pronounced social anxiety. Something was wrong with my eyesight.

So of course I went to the doctor and told her all about it. Only I didn’t. It had all happened so incrementally while I had been having babies and nursing and getting no sleep. No one around me had said, ‘something is wrong with you,’ and somehow my mind was not sharp enough to identify the huge hit my health had taken. In addition, my husband was sick. And, really, how many sick people can you have in one house?

My routine checkup identified a pronounced thyroid problem. My TSH was quite high. My thyroid quite low. I remember being upset about the news, especially as it came with news of low bone density on my bone test and other things wrong on other tests. My self-perception was of a strong and healthy person. These tests did not match.

A few Adventures in Health Care later I was identified as having Hashimoto’s Thyroiditis, prescribed .75 mg of Synthroid and told that would be my treatment ‘until you are 70’. Great.

Only not so great. I had been taking Chinese herbs for my adrenals and when I stopped them to take the thyroid meds, I pretty much collapsed. With any change in thyroid medication the new dose has to be taken for 6 weeks before the blood test. After that it was another week and a half before my call from the endocrinologist. I had felt crappy for the 6 weeks before the test, so, when I had done my blood test and was waiting for the result, I took a little tiny bit extra of the medicine. In about 2 days I felt quite a bit better. I was (somewhat naively) looking forward to getting it all sorted out with my endocrinologist.

It will surprise no Lyme patient that my endocrinologist, when he called, was completely disinterested in the fact that on the prescribed dose I was having to sleep from 2pm-5pm, drag myself up to take care of my children, and go back to bed at 10pm. Or that a theoretically healthy 41-year-old woman was, after all that sleeping, still not able to get out of bed in the morning. My TSH was ‘in the normal range.’ End of story.

The conversation completely sideswiped me. I had assumed that the blood test would reflect my experience, but it did not. I reminded the endocrinologist that he had said himself that his starting dose was low and that I was not a person who ever wanted to take more pharmaceuticals that necessary. He listened, but I could tell he was not budging: the test said my thyroid supplementation level was fine. Somehow, in one phone call, I seemed to have gone from the person at whom my OBGYN rolled her eyes for refusing pain medication during childbirth, to a person who was looking for a quick pill-popping solution to my (probably emotional?) problems. He didn’t say that, but I couldn’t help feeling it was implied.

It was such a vulnerable position, and new to me, to feel like I might get off the phone without a prescription for the medication I was sure I needed. I stuck to my guns, but what clinched it was really just luck. I had looked up my recommended dose (on the site for doctors that is put up by the pharmaceutical manufacturer) and I reminded him that my prescription was for much less than was recommended for my weight.

That’s when he asked me, ‘What dosage are you on?’ and I realized that all through our debate (my debate?) he hadn’t been looking at my chart, just the test result. I told him my dose and my weight and he somewhat reluctantly upped the dose a smidgen to .88, and that (to quote Robert Frost) has made all the difference.

It was a good lesson for me. The doctor had been well intentioned and he’d been certain; but he was a very busy, otherwise-occupied person. It hadn’t been safe for me to leave the work of understanding my wellbeing entirely to him.

I realized that it was only because I had argued so vehemently, and done my own research, that my dosage had been upped. I was in a pretty anxious state with all of it, and I just kept thinking, ‘What if I was a 55-year-old immigrant woman (who hadn’t studied science at UofT) and who spoke less English or had more faith in doctors?’ I would have ended up sleeping an extra 5h a day and still be dragging myself around, that’s what.

Because I was upset, I complained about it to my friend while she was cutting my hair. And because she happens to be the mother of a child with an endocrine disorder and had been madly researching, she happened to have the name of a doctor who was constantly referenced with gratitude on the Internet for looking more closely at the issues of thyroid patients. She gave me his name and I called on my way out of her building. And because the Universe was on my side, I got an appointment with a holistic doctor interested in the root cause of autoimmune disease.

The long road to the discovery of Lyme had begun.

On to Part 3: Holistic

Keywords: Thyroid problems, Synthroid, Doctor negotiation, fatigue