Please Be Careful with Patient Advice

I don’t want to disparage the value of learning about your medical condition online, especially when getting proper treatment from professionals can be so frustrating.  I’ve certainly had my share of terrible doctors, and I wouldn’t have found proper treatment for Hashimoto’s thyroiditis if it weren’t for patient advocates like Mary Shomon, and the books and surrounding community of Stop the Thyroid Madness, among other sources.

HOWEVER, lately I’ve been noticing a lot of people seeking specific medical advice from the internet, and I think that’s dangerous.  Maybe it’s because all of the posts from thyroid patient Facebook groups are suddenly showing up all over my timeline, but it seems like every day someone is asking a question they should be asking to a doctor.   For example: “I ordered iodine supplements in the mail.  My doctor told me to only take half a pill; should I go ahead and take the whole thing?” 

NO, you should take half a pill, like your doctor said – the one who has a medical degree and knows your personal patient history!

“But Jen, lots of doctors are terrible.  What if this doctor doesn’t know what he’s doing?  Why should I trust this doctor’s advice when other patients are giving me different information?”

Then please, please find a new doctor.  I know it can be hard.  I know it can take a long time to get an appointment.  I know that some people live in areas where good doctors aren’t accessible.  I get it, and I know what it’s like to be so desperate to feel better that you’ll literally try anything.   But it’s scary when I see people asking for advice that could be potentially dangerous.

I know that patient communities aren’t allowed to give medical advice, because that’s illegal.  You’re supposed to say “patient experience has shown…”  But that doesn’t stop people from posting about a miracle supplement they tried that made them feel better, which leads to other people in the group ordering that supplement from the internet and taking it without consulting a physician.  Iodine is a good example, since its use is controversial - however, many patients online will tell you it’s not controversial and everyone should take it.  This weekend, I saw someone tell a patient who has a rare iodine allergy that her doctor is wrong and she should take it anyway.  Natural thyroid hormone is another example – I’m always seeing people post about ordering their own from the internet, and getting advice from other patients about dosage.  People will specifically post that they are going against their doctor’s dosage and ask other patients how much they should be taking.

I actually did the same thing when I started taking dessicated thyroid hormone.  My doctor prescribed a specific dosage, and I increased it on my own based on advice from the internet.  I ended up severely hyperthyroid, because I misjudged my symptoms as being hypothyroid symptoms instead of the opposite, and I was over-dosing.  I was told that the hyperthyroidism had put so much stress on my heart that I was at risk of heart failure.

Of course, there are success stories too.  People post every day about how they got their lives back, and they couldn’t have done it without support from the patient community.  There are some extremely intelligent, knowledgeable people in these communities, who work hard every day to fight for other patients to get the proper medical treatment they deserve.  But there is also bad advice, people who parrot things they’ve heard without doing research themselves, and people who think that if something worked for them, it will work for everyone.

So, make use of these communities, but be keep a few things in mind:

  • The people in thyroid communities are patients just like you.  They have struggled like you, and some of them have recovered.  But they are not medical practitioners.  Some of them are extremely well read and knowledgeable, and you should use their advice to educate yourself so you can work with your doctor on a treatment plan.  Finding a good doctor should be priority #1.  If this is an obstacle, then just be careful with the advice you follow.  (For instance, ordering medication on the internet without a prescription and dosing yourself based on advice from a stranger who knows nothing about your medical history is generally not a good idea.)
  • Thyroid treatment is not a one-size-fits-all solution.  Thyroid patients should understand this, since most of us have gone through the “Synthroid is all you need” treatment plan at least once.  So, if someone tells you “this combination of diet, supplements, and medication worked for me, so you need the exact same thing,” remember that you are a different person who likely requires a different solution.
  • Not every thyroid patient is an expert just because they post in a community group, just as not every doctor is good just because they have a medical degree.

Be smart!

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