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Tuesday, January 31, 2012

Thyroid disorders: overcoming the myths and bad advice and getting treatment

"As your doctor, I know
much more than you do.
So why don't you just
trust me? You're
just the patient!"
Some of my family members have been bugging me to see an endocrinologist to treat my Hashimoto's Disease. I've thought about it, but honestly, am not looking forward to it. After my post on "Stupid Crap My Doctor Says," and reading this article, you might understand why.

The article, called "Understanding Thyroid Problems," is ironic - because it's written by someone who doesn't understand. As a writer, I strive to make sure I understand the topic I'm writing about and I want it to be accurate - but apparently this person doesn't. Her method of dealing with her Hashimoto's - complete with fatigue and stubborn weight gain - is to exercise more and drink more coffee.

Her headline strikes a very dismissive tone - she mentions people who "peddle" advice and it's clear she thinks well-educated thyroid advocates (whom she even quotes in the article) are not responsible enough to register an opinion. In other words, "You're not a doctor so I'm not going to trust anything you say. I'm going to ask my physician!" 

Well, that's fine - except the doctors she interviews for her article are even more dismissive. One mentioned what is basically subclinical hypothyroidism - and suspects that many patients aren't really hypothyroid at all.
"A review of the literature shows up to half of people with a TSH in the 3 to 4 range either don't have hypothyroidism at all or have only the earliest phase, where there's no clear benefit from treatment," he explains.
In other words, it's all in your head. Here, take this anxiety pill. And while you're at it, there's one for depression, too. Now go home.

Like I've said before, and like many sites do say, you are not the same as someone else. Because your TSH is higher than mine doesn't mean you will feel worse than I do. I haven't read any of the studies he's referencing, but I suspect that patients are on such a low dose that yeah, it doesn't really work. But unfortunately the patient is allowed such little autonomy in matters of their own health that we may never know what works for them because we simply won't allow them to ever reach that point.

Based on the author's information, you have to have a TSH as high as 10 to 15 before it's worth treating. (But... I thought 5.0 was the high end? What about that?) Interestingly, mine was around 2 something and my physician said it "still wasn't where he wanted it to be." Thank God I don't have a doctor who thinks I should only be treated when my TSH is exploding off the chart.

Dr. Worst-Case-Scenario goes on:
"There's no compelling evidence that medication helps patients whose TSH is in the 5.0 to 10.0 range," says Dr. Daniels, though if you have other problems, such as infertility or depression, your doctor might suggest medication. Similarly, for those who also have Hashimoto antibodies, the decision to treat may depend on other factors. If you have debilitating symptoms or develop a goiter (a protrusion of the thyroid itself), "it might make sense to try medication for a few months," says Dr. Daniels. "Occasionally symptoms improve; often they don't."
I'm not an expert, but I don't consider a TSH as high as ten "subclinical." It means you are full-blown hypo at that point, I would think, but again, it's different for everyone. I can't imagine the number of couples who have struggled needlessly with infertility because some jerk endocrinologist painted everything as a disaster and refused to treat.

If your TSH is that high, I'd suspect you're too damned tired to care about being infertile, because you're too tired to have sex in the first place. I'd also like to ask him why I felt better once starting thyroid medication when my TSH was quite low, by his standards.

When they start talking about medication options, of course synthetic hormone is mentioned first. Even though natural desiccated thyroid has been in existence for centuries, the author mentions those "natural advocates who tout" the product as if it's snake oil. And in piling one myth on top of another, the doctor says, "There's a perception (read: all in your mind) it's natural because it's animal-derived, but the potency can vary." Yeah, about that. Apparently the potency can vary in synthetic medications as well.

The author's closing blow is to be "wary of on-line advice." What, like the crap she dished up in her article? Perhaps there is a grain of truth in that, but it's probably the same for any medical problem. And unfortunately the information put out by many major advocacy groups (like The American Thyroid Association) and doctors is often laced with the same errors she claims everyone else is. Their top recommendations often include, "Your TSH is fine. You do not have a problem. Come back in six months to a year and we'll reevaluate you. Synthroid is your only option, but I'm not going to disclose that they are a major sponsor of our website."

The author admits to a family history of Hashimoto's disease, but says even if her levels "had nudged up a bit" she'd "still opt out of treatment." Not exactly sure why, but perhaps she doesn't mind - or doesn't understand - how the thyroid slowly gets destroyed over time until the damage is done and you're completely hypothyroid. Perhaps one of the great endocrinologists she interviewed recommended that she do nothing, because, after all, it probably won't work - right?

The bottom line is that people treat their doctors like they are gods. Unfortunately, some doctors think they are, too. No one - not even your physician - is perfect. When they're willing to admit it, that's great. When they're not - but instead are reluctant to try new things, accept new and different ideas, or at the very least, listen to their patients - they stand to make people a lot sicker instead of better.

In closing, I'd make the following recommendations based on my own experience:

• Read all you can. Medical journals, support and message boards, books, articles, even patient blogs that detail their experiences and frustrations. It might be eye-opening in the following ways:

1) you'll learn more about your body, and that's never a bad thing
2) You could learn about possibly new and unusual symptoms that you're experiencing
3) You'll get more support from people who've been there, rather than be told "You're just imagining it!" or  dismissing you
4) You'll learn about the disparity of information out there about other treatments, like natural desiccated thyroid, supplements and other methods
5) You might just find out certain groups and people are not always acting in your best interests
6) You'll find out there are a lot of myths, conflicting ideas and misinformation about thyroid disorders that just won't go away!
7) You'll be exposed to possibly cutting-edge studies and information that your doctor won't, which could really help your diagnosis 
8) And most importantly, you'll be a more informed patient who can weed out the good from the bad advice you might be hearing

• Get copies of all your blood work and keep them on file for comparison purposes. It's nice to know what your numbers are and where you stand. This could also include pharmacy records, so you can see what dosage you were on when and gauge how you felt at the time. 

• Keep a journal of your symptoms. Compare it with your medical records. 

• Don't be afraid to ask questions and demand answers. Your doctor works for you, not the other way around. He is not the boss of you, or your "daddy," so don't be afraid to speak up and advocate for yourself. 

• Be wary of those who say you should only take T4 meds (like Synthroid). Know and understand the intricacies and quirks of synthetic medications and they, too, have their faults. Know also that many organizations are supported heavily by the makers of Synthroid, which is a conflict of interest. 

• Conversely, be wary of anyone who says you should only take Armour Thyroid (or other natural desiccated thyroid). I'm in the middle of the road on this - even though I take Armour, it might not work as well for some as it does for others. The same goes for T4 - many people do well on synthetic medications. But many also do not, and are only taking it because it seems like the right thing to do. If you've ever taken both and have a way to compare, only then can you decide which one is right for you. Along with the point right above this, be aware of those who try to discourage you from taking Armour and why they discourage you - either because they believe in the myths or because of financial incentives from drug manufacturers. 

• If you feel that your doctor isn't adequately addressing your concerns, don't be afraid to fire him (or her) either. If at all possible, try to find someone who - while not perfect - pays attention to YOU and how you feel, rather than boss you around or dismiss your thoughts and ideas. 

• Most of all, be patient. It's not going to happen overnight, and medication changes are bound to be necessary. Take the opportunity to educate others around you; it can be a frustrating journey, and if necessary, don't be afraid to have a good cry once in awhile. Don't give up! 

More reading:
Don't worry, no good deed goes unpunished: thyroid advocate Mary Shomon ripped this article to shreds. Read it here!