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.

A Good Week

There's definitely some truth to the idea that sometimes the anticipation of something is worse than it actually happening. The first week of being 35 has actually been a pretty good week.

Nothing particularly exciting happened; I've just been in a good mood for some reason. On Monday, a co-worker who is trying to get pregnant brought in a book to show me - Dr. Robert Green's Perfect Hormone Balance for Fertility. And while I've been content to think of a transfer as something far off in the future, the energy to deal with infertility is actually slowly returning.

I ordered the book, because I have his Perfect Balance: Look Younger, Stay Sexy, and Feel Great, and when R and I followed the book's 2-week sample menu for a couple months, the results were amazing. We lost weight, my skin was the clearest it's been since about the 1st grade, R's incredibly sensitive stomach was sensitive no more, and his nails went from being brittle and cracked to totally normal. So I'm interested to see what the fertility book will bring. It didn't look like it has a menu, but my co-worker said it's the best book she's read on fertility so far.

I've also lost just over 20 pounds as of this past week, so I'm happy about that too. Ideally I'd still like to lose another 80 pounds (dream weight), or at least another 60 pounds (very healthy weight), but realistically I'll be lucky if I lose another 40 pounds (still technically "overweight" according to all the charts) between now and whenever we do a transfer. But at least "overweight" is better for a pregnancy than "obese" is, which is still the category I fall into at this point.

My thyroid is still freaking out. Last month's test showed my TSH was 0.005, which is very low. I'm actually quite glad, because at least I'm not going crazy imagining symptoms, they really are happening. I'm supposed to have a thyroid uptake scan this week or next to determine if it really is thyroiditis or if it's regular hyperthyroidism.

My dad is doing ok. I'm probably going to see him again in a few weeks, possibly to accompany him to his next doctor's appointment. His first round of chemo pills last month reduced the cancer cells to 6% of his blood (down from 25%).

However, because he didn't go completely into remission, he's been kicked out of the study he was in. His doctor has given him a couple different options. It sounds like the preferred route is another round of chemo pills, but this time for 17 days instead of 7. Since he's no longer in the study, the pills aren't free, so he's trying to find out if his insurance will cover them. If not, it's about $10,000 for the 17 days, and it's not guaranteed that he won't need additional pills.

The other option is a more aggressive form of chemo taken as a hospital in-patient, but I don't think it's been determined whether insurance will cover that, either, and it's more risky because it could damage his kidneys and start to shut down his organs.

Overall, though, he's handling it with amazingly good spirits, which makes it easier for me to handle, too.

Here's hoping for another happy week this week.

Turning 35, Feeling Fragile

In less than 12 hours, I will officially reach the age that makes REs hyperventilate.

I've actually been doing pretty good about it - mostly just ignoring it. Non-IF pregnant women in their ignorant state of bliss haven't annoyed me any more than usual this week. I had lunch with a friend today, and she told me about a former co-worker whose wife had their first baby a couple weeks ago. They got married less than two years ago. Yea, hooray, whatever. Not a single tear of self-pity welled up.

Then R's dad called tonight. We celebrate my birthday and R's brother's birthday together, because his birthday is the day after mine. I picked the restaurant, so it's R's brother's call for the movie.

The (32-year-old, single, childless) man wanted to see "Up". I'm sorry, but I'm going to be downer than "Down" if I have to spend 2 hours of my 35th birthday sitting in a theater surrounded by children, thinking about how I'm now 7 years older, 50 pounds heavier and $100,000 poorer than when we started TTC. I don't care if it's the best movie of the year, the most fantastic example of animation ever created - I can't do it.

We're going to see "The Hangover" instead. And although I've never been drunk before (I don't like the taste of alcohol, so can't drink it fast enough), I may just decide to end the day with a hangover myself.

P.S. I appreciate all of your thoughts and prayers for my dad, and I'll update more about him soon. A quick synopsis: He had another bone marrow biopsy this week, and he's supposed to get the results next Thursday, so we'll have a better sense of what's going on then. The pills his doctor gave him last month did, in fact, turn out to be chemotherapy. He tolerated it very well, and he is very proud that he still has his hair. I'll be going out to see him again soon, but I don't know exactly when yet. (KayJay, thanks for asking. And, congrats on beta #1!)

Thyroid Levels

I've been promising to post my thyroid test results for about 8 months now. Clearly I've been lazy about it, but for those of you who are into this sort of thing, here they are, finally. I'm including the test names exactly as they are written on the lab results, with the normal ranges in parentheses and abnormal results bolded:

Sept. 2001 (family physician, part of bloodwork for a routine physical) - T3 uptake 35.8% (23.4-42.7); Thyroxine (T4) 7.9 (4.5-12.5); T7 Index 2.8 (1.2-4.3); TSH 0.19 low (0.40-5.20)

Sept. 2002 (family physician, part of bloodwork for a routine physical) - TSH High Sensitivity 1.10 (0.40-5.20); Free T4, Non Dialysis 1.0 (0.8-1.9)

March 2003 (ob/gyn, for irregular cycles after starting TTC, got diagnosis of PCOS at this time) - TSH High Sensitivity 0.51 (0.40-5.20)

April 2005 (endocrinologist, regarding PCOS while on a break from TTC) - TSH High Sensitivity 1.18 (0.45-4.50); T4 Free, Non-Dialysis 1.5 (0.8-1.9)

October 2005 (family physician, part of bloodwork for a routine physical) - TSH High Sensitivity 0.41 low (0.45-4.50); T4 Free Non-Dialysis 1.6 (0.8-1.9)

July 2008 (RE, one-day workup) - TSH 3rd Generation 2.29 (0.40-4.50); T4 Free 1.1 (0.8-1.8)

Sept. 2008 (different familiy physician, part of bloodwork because she thought something was up with my thyroid) - TSH 0.092 low (0.45-4.50); Thyroxine T4 8.3 (4.5-12); Thyroxine T4 Free Direct S 1.30 (0.61-1.76); Triiodothyronine T3 188 (85-205); Triiodothyronine Free Serum 3.3 (2.3-4.2)

Oct. 2008 (endocrinologist) - TSH 3.19 high (0.30 - 3.00); Free T3 3.8 (1.5-4.1); Free T4 1.28 (0.80-2.00); Total T3 76.8 (65.0-185.0); T3 Uptake 32.3% (25.0-40.0); Total T4 6.3 (4.5-12.5); FTI 2.03 (1.13-5.00); Anti-TG Abs 69.2 high (0.0-40.0); Anti-TPO Abs <10.0 (0.0-35.0); TRab <1.0 (0.0-40.0)

Nov. 2008 (endocrinologist) - TSH 4.95 high (0.30 - 3.00); Free T3 5.7 high (1.5-4.1); Total T3 225 high (65.0-185.0); T3 Uptake 23.7% low (25.0-40.0); Total T4 10.5 (4.5-12.5); FTI 2.49 (1.13-5.00)

I'm no longer seeing the endocrinologist who did those last two rounds of bloodwork, because my company went with a new health insurance plan this year, and he isn't on it. I had an appointment about a month ago with a new endocrinologist, and I'm hopeful that she will be a good doctor to work with.

She was very patient and listened to my whole story. She was also encouraging about the baby thing, saying that "when" I get pregnant again, she wants to see me immediately and then will continue to monitor me every 6 weeks or so throughout the pregnancy. She and her husband tried for four years before they were able to conceive, and she just had her baby this year, so she really relates to us wanting to get (and stay!) pregnant.

She said she thinks I have a rare form of thyroiditis called Hashi-something-something-thyroiditis. (Not Hashimoto's.) She said a virus or other triggers may be causing my immune system to attack my thyroid occasionally, which leads my thyroid to dump all the hormone it's holding, initially causing my TSH to drop and then rise slightly abnormally high before settling down again. That kind of makes sense, because when I had the really low TSH level in September, the blood for that test was drawn about two weeks after I had a really bad cold.

My next step is to go back to her in August. I'll get the results of the bloodwork I did last month at that time; I'm guessing it was normal based on how I was feeling. She also wants me to repeat the bloodwork in the meantime if I think I'm feeling significantly hyper or hypo, but so far that hasn't been the case.

From there, she'll continue to monitor me every 6 weeks to 2 months until my bloodwork shows three consecutive normal levels. At that point, we'll look at doing a transfer, depending on how things are going with my dad and how I'm feeling about my weight and overall general health.

'Couple's Lov.emaking Session Sets House Ablaze'

Note to self: Buy a proper candle snuffer, so that the local media isn't forced to print a photo of us next to a headline like that.

Because we infertiles rarely have enough laughter in our lives, I will share the story of our near humiliation with you. (Just don't tell R, because he will not be happy with me for sharing, even in this relatively anonymous forum... :-) )

As you know, one of the silver linings of infertility (albiet one that we would of course trade in a heartbeat) is being able to sleep in during a weekend morning because there is no pitter-patter of little feet wandering around the house. Well, yesterday morning after sleeping in, we were in an amorous mood. So, even though it was daylight out, R set the scene by lighting a bunch of candles in our room.

Afterward, I got up and was in the bathroom when I heard the sound of running feet. I looked in the mirror, and there was R, dashing toward the bathroom, one of his hands held high in the air and orange flames leaping from the top of it.

When we extinguish candles, we use an unbent paperclip to extinguish the flame by pushing the wick into the melted wax, because it doesn't create smoke in the process, like a candle snuffer does. When R was lighting the candles, he noticed that the paperclip had been left in one of them last time, and the wax had hardened around it. (He swears it was me who left it there.) When he saw that, he decided to just leave it, figuring that once the wax melted, he'd just be able to use the paperclip as usual.

What he didn't count on was the fact that a paperclip, being metal, absorbs heat.

When he went to extinguish the candles while I was in the bathroom, the paperclip was hot. So he decided to grab a Kleenex, fold it up and use that to grasp the paperclip.

It was an approach that worked well...until he reached the last candle. As he lowered the paperclip to the wick, the flame caught a corner of the Kleenex, setting it on fire while R was holding it. Not wanting to burn the furniture, and having no bucket of water immediately handy, R decided to race across the carpeted room to the bathroom. He was about four feet shy of the bathroom when the charred Kleenex bits began to fall to the floor, catching it on fire.

Flames, it turns out, really can dance. And apparently, so can R, when the floor is on fire.

I stood there with my mouth gaping open, trying to comprehend the scene in front of me, particularly the facts that our house had just been literally set on fire and that the flames were moving rather rapidly across the carpet. By the time I came to my senses and whirled around to fill a glass with water, R had stomped most of the fire out with his (bare) feet. Then he was dancing around because his feet hurt, although thankfully he didn't get any significant burns.

Our light beige carpet had some black spots, but somehow between using carpet cleaner, a scrub brush, and the vacuum, R managed to return the spots where the burnt Kleenex melted into it to a nearly normal color. Thanks to the ceiling fans in our bedroom and bathroom, as well as some frantic fanning of the air, we also managed to prevent the smoke detectors from going off.

We were particularly grateful for that, because how would you explain that to a mother who lives with you (like mine does)? "Um, well, we were in the mood, and I guess things just really heated up..."