Thyroid Diagnosis: Hashitoxicosis

Finally, a firm thyroid diagnosis and a plan: Hashitoxicosis and (hopefully) surgery to remove my thyroid.

Hashitoxicosis is a relatively rare thyroid condition, but R and I tend to fall on the rare side of the odds when it comes to health issues, so that doesn't really surprise me.

It's just such a relief to finally have a name for it. I've been reading about hashitoxicosis today, and it's so weird to read stories of others who have it and think "That's me! That's me!" as I'm reading what they're describing. Basically, it's an autoimmune disease in which antibodies will attack the thyroid intermittently, causing it to spill excess thyroid hormone, which creates a hyperthyroid state. However, since it's intermittent, it's also possible to have times the thyroid is normal and even times that it's underactive.

My endo made the diagnosis based on how my thyroid-related hormone levels have repeatedly fluctuated significantly in relatively short periods of time (one month or less), and a thyroid uptake scan done this week that showed my thyroid was definitely taking up iodine at too quick of a rate.

The most common treatment for it is a high dose of radioactive iodine to destroy the thyroid. That usually creates a hypothyroid state, which is much easier to control than a rapidly fluctuating overactive thyroid. However, I had some major concerns about that:

- you have to wait at least a year after the RAI before getting pregnant
- it takes 3 to 6 months to determine if it was enough RAI to do the job, so if it wasn't, you have to take another dose, which means it could be even longer than 1 year before trying to get pregnant
- there is very inconsistent information out there about how long you have to stay away from other people after receiving the RAI (the radiologist who reviewed my uptake scans said 3 days, endo said 5 days, I've read anywhere from 2 to 11 days on the Web)
- I've read lots of stories from thyroid patients who have taken RAI who have had other issues crop up afterward that they attribute to the RAI
- my family doc, and more importantly RE, recommend against RAI
- RE says his patients who have taken RAI have only had success rates that are about 50% compared to his thyroid patients who didn't take RAI

I brought up the one-year wait issue, and endo asked how I would feel about waiting that long or longer before doing a transfer. I pointed out that we've already been waiting 7 years, and I'm in the latter half of my 30s and would like to try to have two kids before 40 (the original goal was two before 30!), so she was very sympathetic and agreed that surgery would be a reasonable approach in my case given all of that. The question is whether the surgeon will also agree to that. Since a surgeon's whole job is to operate, I'm hoping he will.

I'm so happy to have a diagnosis, but on the other hand a bit of me is angry, too. Hashitoxicosis patients are often misdiagnosed as having emotional issues or told that they're being hypochondriacs. There are so many times I went to my former family physician with issues that he couldn't explain, and he just told me I had anxiety and don't handle stress well. I mentioned some of those to the radiologist and to the endo, and they both said they suspect it was my thyroid causing the symptoms (onset of major tremors, racing heartbeat, etc. that developed out of nowhere over the course of a week). Part of that anger is directed toward myself, though, because I knew my complaints were being dismissed, and I didn't stand up for myself.

But mostly, I'm just hopeful that getting the thyroid issue resolved will help me to be much healthier. It won't guarantee a successful, healthy pregnancy, but it will give us a better shot at it.