Everything You Never Asked About Hypothyroidism

Folks, I’m not a doctor. I don’t even play one on TV. And I didn’t stay at a Holiday Inn Express last night. But I have to tell you, I’ve had so many conversations with people lately about this one thing, that I feel like I need to do a public service announcement. I’m about to get on my soapbox and rant a little. But, read it, you might learn something…

Firstly, for the broader public, I want to say please be sure to know your body. Know what’s normal for you, and notice when things change. Tell someone. Tell your doctor. And then if you still don’t feel right and you know something’s wrong, even after your doctor tells you it’s nothing to worry about, pursue it! You know your body better than anyone else, including your doctor, and you need to be your own advocate. (It’s not your doctor’s job to know you intimately. She sees you once a year for 20 minutes if you’re lucky. Just because she sticks stuff up your hooha, it doesn’t mean she knows you better than you know yourself. Trust me.)

I say that to specifically say that I’ve had a bunch of people approach me about hypothyroidism lately, especially if I mention it at all in conversation. It’s a condition that affects “an estimated twenty million Americans, possibly even more” (Shomon, p 4). And yet, doctors don’t tell you anything about it, even if you’re diagnosed with it. Another huge percentage of people are actually affected by hypothyroidism, but are never diagnosed.

I was diagnosed with hypothyroidism about 7 years ago. I was told it wasn’t a big deal, and could be fixed with a medication I could take for the rest of my life.

That’s only sort of true.

What the doctor didn’t tell me is that hypothyroidism can be caused by several different things. She didn’t tell me because traditional medicine treats hypothyroidism the same way, no matter the cause. It’s kind of like always putting salt on your food if it’s bland. It kinda works. But to really treat the problem in the most effective way, you have to know why and the specific course of action to take.

In my case, I went along with what the doctors said for years. I took my little pills. I watched as the doses slowly increased. I got my blood work done regularly to monitor my hypothyroidism indicator. And then I started feeling bad. I was tired and depressed, I gained a whole bunch of weight, I was cold all the time, I had horrible water retention in my feet and ankles.

I told my doctor. She tested my TSH (the standard hypothyroidism test doctors use), and told me I was fine. A year later, when I came in for my physical, she told me I’d gained too much weight in one year and I should eat less and exercise more. I cried. I’m not sure there’s anything more frustrating than to be told that the reason you’re fat is because you’re lazy and you eat too much when you know that’s not true. She tested my TSH and it was too high. Big surprise. Higher dose of pills.

I still didn’t feel better. I felt worse. I went to see a holistic (or “quacky” as we say at my house) practitioner who told me my doctor needed to test me for Hashimoto’s disease, which is an auto-immune disease that attacks the thyroid. If it’s Hashimoto’s, we can work on it. We can do something about it. But we need to know first. There’s a simple blood test. My doctor had never bothered to check it, and I’d never known to ask.

I had to beg, and my doctor didn’t give in until my next TSH test was even worse, even on the higher dose of medicine. She finally got me the test to look for thyroid antibodies (which tells you if you have Hashimoto’s or not) and I was positive. I wanted to email her a quick, “I told you so,” but I refrained.

I’m in the process now of working with an endocrinologist and a holistic practitioner to figure out the best course of action, but I’ll tell you I’m not satisfied anymore with, “Here, take a higher dose of this pill and you’ll be fine.” And if you’re suffering, you shouldn’t be satisfied with that either.

Stuff doctors never tell you about hypothyroidism:

  • It can be caused by several things, one of which is an autoimmune disease called Hashimoto’s. (This is the most common cause.)
  • Hashimoto’s attacks your thyroid and is slowly killing it. That’s why your medicine doses keep increasing. Eventually, your thyroid will die if you don’t address the autoimmune disease.
  • Hashimoto’s is hereditary, usually through your female family members, so if your mom or your sister has hypothyroidism, there’s a good chance you do or will, so keep an eye on your numbers.
  • The standard TSH test is not the only thyroid test that doctors can run. It only shows a tiny portion of what’s going on with your thyroid hormones. To get a complete picture of what’s going on, and to find the root cause, they’re going to need to run more than one test.

There’s lots more to say about it, but I just wanted to give you a quick heads up so that if you’re affected, you can start advocating for yourself. Your doctor has been taught that a pill will fix it, but it’s not that simple, so you may have to fight for what you really need in order to feel better. Don’t be skurred. Fight. You are worth it.

Further reading:

Living Well with Hypothyroidism by Mary J. Shomon

Why Do I Still Have Hypothyroid Symptoms? by Datis Kharrazian

Ask me questions if you have them! I’d be glad to share what I know!

  • BettyFokker

    Holy crap! I have just made a docs appt to check my thyroid (have many, many symptoms) … this is good info to have!

    • So glad it’s timely for you! I’d recommend the two pieces of reading above before or shortly after you discuss with your doc. 🙂

  • Get out of my head!  I just bought Living Well today.  I don’t suppose we’ve had a chance to talk about it, but my TPO antibodies came back high in May, even though my TSH is totes normal (as are my Free T3 and T4).  But I felt totally powerless to do crap about it, because, hey, doctors ignore it.  I’d love to hear about who it is you’re seeing because I’m genuinely having a miserable time.  I was reading Living Well during some free time at work and repeatedly almost started bawling in front of students.  I asked Will to come with me when I go to the doctor to deal with this, to keep me from backing down.  There’s ONE study that suggests preemptive treatment of HT “euthyroid” folks can stop the destruction of the thyroid from progressing and I just don’t trust a doctor to listen to me based on one study.

    I kind of hate everything right now because of this, you know?

    • I haven’t seen the endocrinologist yet, but I will let you know if she’s willing to listen once I do. I got my doctor to give me a referral when she saw my TPO was positive. 

      Haven’t seen the new holistic guy yet but he was recommended by Dr. Draper in Greensboro, who is awesome and who Joanna is seeing, too. If you don’t mind driving to Greensboro, I can give you his info. The other guy is in Raleigh– will let you know when I talk to him. 

      Hang in there! I think it’s a great idea to bring Will with you.

  • Marcia

    Thanks for writing this.   It is good to know.   It is amazing to me how much the thyroid affects.   My Dad had hypothyroid and another family member had to have her thyroid taken out.   It is good to spread the word because thyroid problems can mask as other problems.   I”m glad that you were a strong advocate for yourself.   It is a shame your doctor didn’t have more of an open mind. 

    • It’s a shame I didn’t put my foot down sooner, too. 😉 I think the lesson goes across the board, and not just for thyroid problems. I was thinking of Heather, too, when I wrote that first part about listening to your body and knowing your own symptoms!

  • The reason I love my doctor (yes, here in “socialist” Canada Land) is that even at the times I’ve seen her and she was in a rush, she always gives me what I ask for. Any kind of referral, she doesn’t get all doubty, she just gives me one. Good thing she’s young, hopefully I’ll have her a long time. 😉  I’ll keep this blog post in mind in case the topic comes up with friends.

    • That’s a rare and wonderful thing, Miss Mabel. 🙂

  • Robenagrant

    Excellent info, Sonja. Thanks for the recommended book titles. I researched them and will buy.

    • Great! Glad it was helpful, Robena!

  • Andrea

    My sister went on thyroid medication when she was 4, and wasn’t diagnosed with Hashimoto’s until she was in her 40s. They discovered by accident that she had Celiac disease (sensitivity to gluten), then ran further tests and found out both were due to Hashimoto’s. Also, TSH isn’t the only thyroid hormone. You could have thyroid symptoms and normal TSH due to another thyroid imbalance.

    • Absolutely, Andrea! Thanks for stopping by and adding your comment. It makes me so sad that folks like your sister have had to suffer unnecessarily with this stuff. It’s complicated, for sure, but it’s not impossible to deal with!

  • I have done SO much reading and research of late and I am fast coming to the conclusion that Drs will give you anything but treatment for thyroid.
    I have been told I have a rash (dry skin) fibromyalgia (untreatable) plantar fasciatis, IBS, depression and warty moles on my arms and legs. I have also been told (In the past six months) that NO, it’s not my thyroid and I’m in normal levels. I have had, what I know know is thyroid issues since age 14, at least.
    I am seeing a Dr at a private clinic in five weeks, after I get a FULL blood screen and have tested my basal temp at the correct time.
    I will be causing lots of fuss as soon as I get my diagnosis! I have felt like I was dying more than once in the past 14 years (since I gave birth) and constantly on the past 18 months, since a bout of flu, followed by pneumonia.
    As recently as Wednesday a Rheumatologist told me I couldn’t have Hashimotos as my TSH is 2.28. Up over 1.0 in two years! She said NO to thyroid as it causes bone loss and osteoporosis. I told her Thanks. I would rather die of major organ failure, stroke, obesity and myexademal coma! I love that she referred me to a skin Dr (I’m obviously too stupid to know the word Dermatologist!) for the rash on my knuckles, toes. heels, scalp and legs!
    Did I mention my family history of Hashimotos?????