July 31, 2009

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.


DAVs said...

Wow what a diagnosis. I'm so glad you found one.
I am interested in the info you were given on RAI--I work for a big endo group and we recommend RAI. I'm going to check with our main guy (who's consistently rated the top endo in Texas) and ask about the RAI/pregnancy timeline. I swore it is not nearly that long. And the contact precautions are not long at all...
All the Graves' patients I take care of have never needed to have repeat treatment either, but maybe they've all been lucky?
There's nothing wrong with surgery, of course, and I am so hopeful for you that they can get your thyroid doses regulated quickly s/p thyroidectomy so you can get to transferring!

Lorraine said...

Really interesting - and I HATE that doctors dismiss people as "just anxious" when there may be a serious underlying problem.

A woman I know just had a thyroidectomy and she was back in the swim in no time, doing really well and very happy. Hope it works out as well for you!

MrsSpock said...

I am glad you have a diagnosis, although the RAI/waiting much, much longer option does sound like it stinks. Hopefully a surgery option is on the table for you.

Grad3 said...

I am so glad that you have something to call it- and a plan! GL and as always, keep us posted!!

Rebecca said...

Hi everyone,
Thanks for the encouraging words.

Ashley, with regard to the info about RAI, the timeline stuff (for pregnancy and for contact immediately after the test) came from the radiologist who did my uptake scan, my current endo, Dr. S, and a radiologist I spoke w/last fall. (My family doc wanted me to do the uptake scan then, but I wanted to talk w/someone about the radioactivity first, and ultimately decided to wait until after all retrievals were done.)

Dr. S was the one who alerted me to the fact that sometimes the RAI has to be done more than once. He said he's had a few patients who have had to repeat the treatment. The radiologist from last week said it's about 10% of patients, my endo said 5%. But given R's and my propensity for ending up on the wrong side of rare odds, I'd be tempted to put money on the odds that I'd wind up being one who would have to repeat it! :-)

Here are a couple of sites I saw too:
http://www.endocrinologist.com/Radioactive.html - says no prolonged contact, sleeping in the same bed, watching TV, going to the movies, etc. with another person for 11 days. This site says 6 months before pregnancy, but Dr. S and both radiologists said at least 1 year.

http://next.thyroid.org/patients/patient_brochures/radioactive.html - This site says "pregnancy should be put of at least 6-12 months" "since the ovaries are exposed to radiation after the treatment." It says 5-11 days for sleeping in the same bed, depending on the dosage.

Nic said...

I am so, so glad that you finally know what is going on!

if you have to avoid getting pregnant because your ovaries will be exposed to radiation, does that mean your timeline might be shorter as you would be transferring embryos that have already been created?

Anonymous said...

Dear Rebecca,
reading your description about your diagnosis of hashitoxicosis was very similar to my case. I was diagnosed over the last 8 years with all possible thryoid disorders before finally with Hashitoxicosis. this was a huge relief for me,too! I was wondering if you have undergone surgery by now and how your are feeling? (I am thinking of doing the same). Was your cycle affected by the surgery? How long did your doctor advise to wait with the FET after surgery? I wish you best of luck with the FET!

Anonymous said...

Thank you for your description. I'm in the same boat with having repeated bouts of hyper vs. hypothyroidism and all the antibodies, etc. I'm about to have surgery on Tuesday, and my heart sinks at so much of what I see on the internet about this. But your blog mirrored the unusual situation I find myself in, and I feel a little less like such a weirdo! Hope things are well with you, thank you.