Sunday, September 14, 2014

Hashi's and Me: my experience with a thyroid disease (part 3)

I have Hashimoto's Thyroiditis, an incurable autoimmune disease that involves the thyroid gland. In a series of 3 posts, I am going to detail my experience with this disease to date. It is my hope to raise awareness and understanding of the disease, as well as provide a bit of support to fellow sufferers. I am not an expert or a medical practitioner; I am simply a person who is trying to live with this disease.

Part 1 covers the When: the timeline of my diagnosis.
Part 2 covers the What: definitions, descriptions, and symptoms.
Part 3 will cover the How: resources I have used and methods of maintenance I have attempted.

How do I treat Hashimoto's Thyroiditis?

There is not a straight-forward answer to this. No clear-cut path to healthy living. Every person with this disease experiences a different assortment of the common symptoms (refer to Part 2 for the list), plus they often experience a symptom or two that is not common. This may also be combined with other illnesses and diseases with additional symptoms. And the treatment method varies from doctor to doctor. I often wonder if instead of treating this as a thyroid disease, the doctors should instead treat this as an autoimmune disease. Would that make a difference?

From the time of my diagnosis in 2006 until 2013, I put complete faith in my primary care doctor and then in my endocrinologist that I was being given the best care possible. But years of monitoring my blood-work and adjusting Synthroid was helping with the levels, but I was still not feeling healthy and then symptoms seemed out of my control. When my daily exhaustion became too much to bear, when I had to keep two sets of clothing to compensate for the 20 pound roller-coaster every 6 months, when snapping at my children became more than just unacceptable, I realized I needed something more.

On a visit to my primary care doctor for a separate issue, I asked her if she could recommend a dietician or nutritionist who could help me to regulate my symptoms through food and supplements. Surprisingly, she sent me to a health food store to speak with the owner. I went immediately to the store following my appointment and had a great chat with the owner, who is diagnosed with Graves disease. We commiserated over our symptoms and she handed me iodine, chelated zinc, b12, selenium and natural thyroid. Over the next 2 days, I noticed an immediate change in my energy level and mood swings. I continued taking these for the next few months. At my next endocrinologist appointment, I brought along this list of supplements to share with her... and she essentially told me that she did not support some of it. She told me to immediately stop using the iodine and just rely on iodized salt. She told me to stop using the natural thyroid due the risk of allergic reaction. She "allowed" me to continue the other supplements as long as they were making me feel better, and she did recommend the best times of day to take them for best results.

Over the past year, I have debated these supplements. Sometimes I stop taking them for a few weeks when I doubt they are actually helping with my symptoms. Then when my symptoms are annoying enough I take them again. I have also done online research for what else I can do to help manage my symptoms. Of course, there are many contradictory articles (broccoli or no broccoli, for example) so it is still hit or miss whether the advice will help me with my symptoms. But I'm willing to try.

Sometimes it is extremely challenging to follow one of the recommended food plans. I am primarily pescatarian (veggies, fish, eggs, but no meat, mainly because meat does not agree with my gut) so then eliminating other items really limits my food choices. There was a moment this past spring that I honestly felt there was nothing I could eat!! Currently, I am attempting to be dairy-free, soy-free and gluten-free as much as possible, as well as avoiding many of the veggies mentioned in the second link below. There are still some days that I feel it would be easier not to eat than to figure out something I can eat.

So feel free to pick and choose from the following resources. I have read MANY more articles regarding thyroid disease and treatments, however most repeat the same info or are useless. Some of the useful info I have tried, and some I want to try in the near future. I have set an appointment with a new endocrinologist in 3 weeks; perhaps I will get some new/better advice to try. If you have a resource worth sharing, please comment with the link and your experience. Good luck and stay hopeful!

Bauman College Holistic Nutrition: Scroll down and there is advice on food & supplement choices, as well as an excellent list of books and additional websites.

Jill Grunewald, Holistic Nutrition Coach: Set-up as questions and answers, scroll down for food & supplement suggestions.

Stop the Thyroid Madness: Lots of info on understanding thyroid test results and available treatment options (this site promotes natural desiccated thyroid). There are also 2 books available to purchase.

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