Triticum Turgidum

Lying Dormant and Waiting to Bloom Since 2005

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Location: The Prairie, Illinois, United States

I am a beauty-loving ambidextrous higher-order primate who learned transcendental meditation at 7, statistical analysis at 23, tap dancing at 30, and piano at 35. I tolerate gluten, lactose, and differences of opinion, but not abuse. Or beets.

Wednesday, April 05, 2006

Healthcare Rant

Sorry for the negativity. Chalk it up to lack of sleep. I promise I'll get positive with the next post. In the meantime, I need to blow off steam at the quality of health care in the United States. (And yeah, I realize it's far better here than in other countries around the world.)

My peeve is with how proactive the patient needs to be. Nowhere has this been clearer in my own life than with my thyroid experience. I was misdiagnosed as having an anxiety disorder for two years before I switched primary care physicians and the new one spotted and correctly identified my symptoms on the first visit: Graves' Disease. It's not curable, only treatable, so I opted for the treatment that's heavy-duty in the short term but much more easily managed in the long term: irradiation. My thyroid gland was destroyed with radioactive iodine about six years ago, rendering me permanently hypothyroid. Like a type I diabetic, I am now dependent on supplemental thyroid hormone for the rest of my life, but I'm lucky because I can take it in pill form rather than injecting it.

This means my metabolism -- which controls everything, even a person's thought patterns -- is dictated largely by the dose of synthetic thyroid hormone (thyroxine) I take. I've educated myself pretty extensively on the topic because I have this lingering fear of being incorrectly treated after the two-year misdiagnosis fiasco.

(By the way, putting a hyperthyroid person on anti-anxiety meds is not a good idea. Both hyperthyroidism and certain anti-anxiety meds have an effect whose name I can't think of now, but it's the opposite of constipation. As I told my mom, "If you think you have to fart, think again." Enough said.)

Since my thyroid odyssey began I've had several close calls medically, experiences where I was very nearly mistreated but caught the mistake and alerted my providers. Another one happened today. During pregnancy my thyroxine dose needed to be increased due to the metabolic demands of growing another person in my body. I ended up at a funky hybrid dose of 162.5 micrograms. A recent thyroid test showed that I've become borderline hyperthyroid on this dose, so I called my endocrinologist to let him know. Of course, I could only speak to the nurse, which is supposed to streamline the system by preserving the doctors' precious time but only adds another node in the communication network. I'm sure you can see where this is heading. The nurse left a return message notifying me that the doctor authorized a decrease in my thyroxine to 112.5 micrograms. This alarmed me because I was taking 125 micrograms prior to pregnancy, so dropping me even lower than that while breastfeeding (when one's metabolic demands can be as high as during pregnancy) would almost certainly render me hypothyroid. That would have dried my milk supply right up and made me feel lethargic and miserable. So I called the nurse back and explained the situation. She looked at her records and said, "Oh, I see, he wanted your dose dropped 12.5 micrograms, not dropped to 112.5 micrograms. Okay, I'll call in a scrip for 150 micrograms." Somehow there had been a miscommunication between doctor and nurse, one that resulted in improper treatment that, fortunately, I subverted by being a nosy, overinformed patient.

The thing that irks me about this is what would have happened had I been less informed, had I been one of the millions of Americans who take their physicians' word as gospel and don't double-check like I do. I would have picked up my scrip for 112.5, become hypothyroid in the space of about 6 weeks, stopped making breast milk, and not found out why until my follow-up test, scheduled 10 weeks from now.

I have to wonder how many people out there are suffering because they're being misdiagnosed and mistreated all due to miscommunication problems in the medical system. Even little kids know that the more people you put in a communication network, the greater the potential for distortion of the original message. That's why they play that telephone game, where a message goes around a circle and everyone laughs at how different it is at the end. We the patients -- no, I'll use the empowered word, clients (after all, we're paying for our treatment) -- have to educate ourselves not only to make sure we get treated to improve our health but to make sure that very treatment doesn't jeopardize what health we've got.


Well, the story has a happy ending for me because I caught the error and have my scrip for 150 now. But I do feel bad for anyone out there who is receiving or has received shoddy and even dangerous treatment. Caveat emptor is nowhere truer than with medical treatment.

Rant over. Next post will be frothy.


Blogger PFG said...

Good for you!
All of my aunts had thyroid disease...and one of them was almost killed by an idiot doctor after she had a hysterectomy (no one adjusted her synthroid dose). I am grateful for this story having been passed down in my family, and also for having worked in health care for about 8 years. It keeps me on top of things. BTW, was your TSH odd with the Graves?

11:58 PM, April 05, 2006  
Anonymous jonniker said...

Double, triple amen, sister. And you know, you don't have to be frothy. I like you like this. You're smart and thoughtful and you make us think. What's wrong with that?

As for the breastfeeding - I read it two or three times before I could comment - I can't even tell you how much I wish that it could be better for you, but mostly, I wish for you to give yourself a break, because dude, you are such a great mom and such a great *person*. And Fi couldn't be any luckier if she had a giant, functional boob that grew out of the walls of her nursery and produced magic milk. Seriously.

*and separately? My word verification is quijmwmatwngj. Right.

11:01 PM, April 06, 2006  
Blogger Bela said...

It’s terrible, isn’t it? Not everyone has the resources to study their condition so they can challenge the ‘experts’ and insist on the right treatment. Most Brits don’t want to ‘bother’ the doctor when they have something wrong with them, anyway.

I’ve also been on a low dose of thyroxine for five years (damned menopause!). I should have been on it for even longer, but the GP I saw when I was feeling like death decided I didn’t need it, although she admitted later I’d been hypothyroid at the time (I’d never got to see the test results and couldn’t judge for myself). I have since moved to another practice, where they treat patients less like ignorant nuisances. Although, even there… a while ago, I was told to go to the nearest NHS hospital to have some more thyroid function tests (only a few weeks after the – private – endocrinologist who treats me had said I was ok on my usual thyroxine dosage). I asked the GP (someone I’d never seen before) why I had to have those tests, since I wasn’t in the habit of just going where I was being ‘sent’. We nearly came to blows. It turned out that the private hospital and the NHS one were using different figures and according to the NHS levels I was very hypothyroid. In fact, I think I would have been semi-comatose had my T4 been that low. Obviously, if I hadn’t queried the necessity for those tests, I wouldn’t have harmed my health, but I would have cost the NHS quite a lot of money for nothing. What had bothered me most was the way the whole thing had been done: ‘Go there!’, ‘Do that!’ with no explanation whatsoever.

Sorry about this very long comment. One more thing: on Monday night we were shown the instalment of Morgan Spurlock’s 30 Days, where he and his girlfriend tried to live on the minimal wage. They had to go to the ER at one point and were each charged over $400 just for being there. That’s horrendous. We in the UK (and Europe in general) are so lucky. Of course, like most French people, I have private medical insurance as well (which is where all my money goes): I don’t believe in waiting six months for anything. I also don’t believe I’m queue-jumping when I get treatment.

I’m glad you got the correct prescription in the end. :-)

11:09 PM, April 06, 2006  
Blogger WinterWheat said...

Thanks J & J. :-)

J #1: You crack me up. I know you're going through something like this (the medical part, not the boob part) and it's been causing you a lot of trouble. {{{{J}}}}

J #2: The thing I've learned about thyroid treatment is to always request my TSH # and to keep a record. The population "normal" curve is actually right-skewed, so you can fall within the "normal" range and be quite hypothyroid. That happened to me during pregnancy. My TSH rose from about 1.00 to 3.20, which represents subclinical hypothyroidism. Not a good thing with a developing baby. But the nurse I spoke to said "you're normal." I explained to her that I'd never had a TSH as high as 3.20 and that I was not going to wait until my thyroid function harmed my baby to get my thyroxine dose increased. She got huffy with me and said, "YOU'RE NORMAL." I emailed the doctor directly. Fortunately, she agreed with me and changed the dose immediately. But again, had I not known about statistical distributions and the meaning of "normal," I would have thought everything was fine. You're right that not everyone has the resources to challenge medical authority. I wonder how much of the poor health of poor people has to do not only with lack of treatment, but improper treatment that they are unable to challenge.

8:46 AM, April 07, 2006  
Blogger Bela said...

WW, since I started consulting a private endocrinologist I've been getting a copy of the test results every time so I get to see my TSH and T4 levels. Had I been shown them in the first instance by my NHS GP I probably would have requested some action (I know about hormones: I translated an entire book about them when I worked at the Faculté des Sciences in Nice). Anyway, in the NHS, it is generally assumed that patients are uneducated morons who couldn't possibly understand anything relating to their ailments. Until the different-level fiasco I thought it depended on what area you lived in (the first practice dealt mostly with council block dwellers, whereas my current one is situated in a 'better' part of the area), but I now think it's the same everywhere. By contrast, my endocrinologist discusses my treatment (albeit for three minutes) and, for instance, asks whether I think the 50 micrograms of thyroxine I take is enough for my energy requirements, when I come for a check-up. As we know, what can be ok for one person might not be so for another one.

12:12 PM, April 07, 2006  
Blogger WinterWheat said...

J -- I reckoned you'd keep on top of these things. It's a shame that we have to be so meticulous, isn't it? I have a great endocrinologist now; the challenge is getting past his bumbling nurse.

2:02 PM, April 07, 2006  

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