Recent Posts

Wednesday, June 1, 2011

You're your own best advocate

With everything I've learned as a birth nerd, I've come to realize that no one advocates for my health better than I do. Or, at least that should be the case. In getting my thyroid issues diagnosed, I was preparing to face hurdles and roadblocks based on what I've heard and read from other patients: that doctors are often unprepared or unknowledgeable when it comes to diagnosing thyroid disorders, and this was my biggest fear. Knowing something was totally not normal here, I was afraid - especially of having to fight tooth and nail to figure out what was wrong with me.

I had my primary doctor order blood work and called back to get the results. The very nice secretary told me politely over the phone that all my levels looked fine, and the Pretend Doctor interpreted my results as "normal" and perhaps the result of a virus. I was skeptical, considering I hadn't been sick. I cringed when I heard that Pretend Doctor, a physician's assistant, had read my labwork and deemed me healthy and perhaps we should just monitor things and be on our merry way.

Now, normally I'm sure physicians' assistants are perfectly fine people. I do not have a problem with them, per se; just this one. On a professional level, I think she's a total moron.

About two years ago I saw her for a mysteriously swelled neck. My throat hurt, but not like a sore throat, turning my head was painful, and since I'm a side sleeper, it hurt just to rest my head on the pillow. I was scared and had no clue what was going on. She did a blood test for mono (which later came up negative), but in the meantime, prescribed me antibiotics. I was exclusively breastfeeding Tater Tot at the time, who was three months old.

Being the sleep-deprived mom that I was at the time, the brain wheels were turning about those antibiotics; I should have said something right then and there that taking them for mono, if that's what I had, was perhaps the stupidest idea ever. However, I think that rational thought process was perhaps eclipsed by the fact that she told me to stop breastfeeding temporarily because I might transmit whatever it was to the baby. I panicked inside, because my baby was still very small and I knew I wanted to nurse him as long as possible. While I was concerned that I could possibly be quite sick, the chances of me giving him whatever I had probably would have happened by now, since we were in immediate contact with each other basically 24 hours a day. My BS detector went into overdrive and in my head, I pronounced her an idiot.

After the test came back negative, no one followed up and nothing more was done. It eventually went away and I returned to my normal crazy mom self, whatever that is.

So when the very polite secretary told me that Pretend Doctor had read my results, I was like, "Oh nooooo...!" I kindly said to her, "Then what about the symptoms that I'm having?" I rattled off another endless set and she politely told me she'd call me back after speaking to the Real Doctor. I was nervous and not sure what to do, other than collapse into a sobbing heap once I hung up the phone.

In the meantime I had her fax me the results of the blood work because I wanted to see them for myself. I waited for them to call back, and when they did, Polite Secretary informed me that Real Doctor thought my levels were quite high. How we go from "your levels are fine and don't warrant treatment" to "You need to be treated" is a mystery to me, but all I know is I won't be setting foot within 30 feet of Pretend Doctor ever again.

I also requested last year's blood work so I could compare. I knew then that my antibodies were elevated but had no idea what that meant, or what was considered "normal." Further research told me that with the presence of a normal TSH and hormone levels, but elevated antibodies, I probably had Hashimoto's thyroiditis, which meant I could swing from low to high and back again. I also realized it would continue to slowly destroy my thyroid gland if I didn't do anything about it.

I was able to compare my levels (which are currently at 111, and normal is 35 and under) from last August - then they were around 88. While it's higher than it should be (and obviously continuing to climb), I've heard that some people's levels are in the thousands - signifying that clear destruction of the gland is probably well underway. Looking back to two years ago, I probably had a freaking goiter and Pretend Doctor totally missed it.

Real Doctor decided to order me Synthroid (at my request, knowing the track record of name brand versus generic) and I started on it about a week ago. Within the first three days of taking it, I had more energy all day than I have in as long as I can remember. I don't know if it's the meds alone or what, or perhaps I'm just on the upswing - but for now, I'll take what I can get.


Holly Wilson said...

I understand. I was diagnosed with "thyroid disease" 6 years ago but it was only 5 months ago that the Hashimoto's thyroiditis was finally discovered. It is so frustrating to be under the care of an incompetent physician.

The Deranged Housewife said...

What are you doing to treat yours? I'm so afraid these meds will work and then nothing - sometimes I don't know what to do and am worried I will spend months under the care of a doctor who isn't "doing enough." i'm also worried about ridiculously long wait times in getting in to see an endo. :(

Well-Rounded Mama said...

You might also want to have your ferritin levels tested. Many people with hypothyroidism also have very low ferritin levels (stored iron).

Also, some people do better with Armour thyroid than with synthroid-ish meds. Might be worth checking into at some point.