Friday, May 14, 2010

Hashimoto Hell

Here's the thing that bothers me about the whole thyroid deal-io.

When you are dealing with asthma, no one is complaining that their meds don't work or that the doctors don't listen (okay, there's me, but I am a very, very small minority and I have horrible karma. The vast majority of asthmatics are off living their lives not whining on the internet, agreed?) For such a common illness, there aren't that many patient bloggers with asthma from what I can find. No one is writing books entitled 'what your doctor won't tell you about asthma' advising things that run counter to current medical training.

Even alternative treatments aren't really big with asthma, mostly because allopathic treatment is so effective compared to herbs. For example, mullein, an herb traditionally used to treat asthma, has never been clinically studied (to my knowledge) so if you are looking for natural treatments for asthma, guess what? You're a guinea pig using an herb based on the cumulative lore of some witch coven from the 1300s. Have fun! Let me know how it works out for you!

The thing is, Advair and Symbicort etc... work. They work well.

Asthma is a disease that does well with mass produced solutions. Just take your inhaler and you're pretty much set. It's very one-size-fits-all.

Thyroid problems are not.

On the one side you have the endos, on the other a lot of really unhappy patients--all of whom seem to have taken to the internet to complain.

"Take iodine," say the informed patients.

"Don't take iodine," say the doctors.

"Take selenium," say the informed patients.

"Selenium what?" say the doctors. "Why?"

This is just the tip of the iceberg. There is not one single thing about treating thyroid problems that patients haven't found a bone (or three dozen) to pick. And then there are the patients that disagree with the rest of the patients, which is really confusing for newly diagnosed patients like myself.

So the big question is, who to believe? Who is right?

The patients just aren't happy. This is a huge red flag for me.

When I emailed my relative with Hashimoto's to inform her I had 'joined the club' she responded with a sardonic 'Good luck.'

Do you know what this all says to me? Treatment sucks and doctors don't want to talk about it. The medical paradigm is out-of-step with the patients. Enough so that patients are taking things into their own hands. Always a bad sign.

Happy patients don't spend hours on the internet grousing. They don't write books to save others the hell they went through. They don't blog. Or start message boards or sign up on Facebook. They just go live their lives.

So it seems we have a significant demographic that is under served and medicine doesn't care.

Yay. Just what I always wanted. More weird medical crap to slog through. How do I get so unlucky?

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