Q: Please share your thyroid journey from diagnosis, to treatment.
A: In 1992 I was diagnosed with Graves’ hyperthyroidism. That happened after a lot of years where I had seasons with complaints and seasons when I felt well. The diagnosis was a great relief.
In all those years I first had an inadequate general practitioner who prescribed kelp and later desiccated the thyroid.
After a pregnancy with desiccated thyroid, my new general practitioner wanted me to stop with the hormones in 1986. My second child was born in 1988. In 1990 I began to feel worse. And in 1992 the TSH was 0.01 and the T4 was 350 (thus not free T4).
My endocrinologist explained all the treatment options. He was in favor of 131I. And that is not usual in the Netherlands. I agreed with the treatment. The first attempt didn’t solve the hyperthyroidism. The second treatment with 131I was effective. And after four months I started with Levothyroxine.
After a few months my new general practitioner took over the treatment. And steadily I needed more Levothyroxine and I felt well.
Q: What have you learned along this journey?
A: I learned that a good MD is of great importance. I experienced the dreadful blunders of my first general practitioner. My second GP had the thyroid as a hobby and that helped me very, very much.
My endocrinologist explained me a lot and that was also very helpful. He gave me the choice of treatment. And also of importance: I had the luck that I felt my diagnosis was a relief. I could be the normal wife for my dear husband and the mother I wished to be for my two little children.
I love to read and I am curious. And I can say that because I read very much. That became clear: thyroid became the topic I read about.
Q: What do you hope people will learn from your story during National Thyroid Awareness Month?
A: My motto is more or less empower yourself. Learn about the thyroid. Learn about your illness and your treatment. Knowledge makes you less uncertain.
For a lot of years I was a volunteer of two patient organizations. I was invited to give comments to the thyroid guidelines from a patient’s view; I was editor of the magazine and of the website.
I learned a lot in all those years. In January 2012 I decided to start my blog http://schildkliertje.blogspot.nl. I hope I can help people with all the information on there.
Faces of thyroid awareness
Throughout January 2013, which is National Thyroid Awareness Month, Boston's Thyroid Health Examiner will be highlighting some of the many faces of thyroid awareness. If you have a thyroid patient story you’d like to share please contact Stacey here.
If you would like to learn more about National Thyroid Awareness month click here to read a recent press release written by the American Association of Clinical Endocrinologists.