Thyroid Rage: Why I Fired My Doctor and Took My Health Into My Own Hands

February 2nd, 2013 by Dionna | 23 Comments
Posted in Adults, Eclectic Learning, Healthy Living, Just for Fun/Miscellaneous, My Family, natural parenting

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Code Name: Mama - My Thyroid Journey: Why I Fired My Doctor

I made an appointment with the doctor last fall, because I was worried about unexplained weight loss, mild depression, and several other minor symptoms. When I visited with the doctor, I made it clear that it is important to me to find a natural treatment plan, if at all possible. Not only did I want to avoid traditional depression medication, but if I did have any abnormalities in my blood work, I wanted to research natural remedies before starting any conventional plan.

Because my mom had her thyroid killed with radiation due to a diagnosis of Graves’ Disease, we suspected there might be something going on with my thyroid. The doctor (well, actually it was the physician’s assistant I saw that day) ordered blood work, and I assumed she would order tests that would aid in diagnosing a thyroid problem.

I made two mistakes there: one in not doing my research before making my appointment; two in assuming the doctor would order the correct tests. The only related level she checked was TSH, or Thyroid Stimulating Hormone. “The TSH — Thyroid Stimulating Hormone — blood test is considered by some physicians to be the only test needed to diagnose and manage an underactive or overactive thyroid — also known as hypothyroidism or hyperthyroidism.”1

TSH is a hormone made by your pituitary gland. Your pituitary gland monitors the level of thyroid hormone in your bloodstream and releases TSH acccordingly (more TSH if it detects too little thyroid hormone, less TSH if it detects too much). Doctors look at the level of TSH in your bloodstream. If there is “too much” TSH (in other words, if your pituitary is overcompensating because your thyroid is underactive), your doctor may make a diagnosis of hypothyroidism. If there is “not enough” TSH (if your pituitary has slowed down because it senses an abundance of thyroid hormone), your doctor may diagnose hyperthyroidism.2

But there are several problems with checking only the TSH level.

First, the range of “normal” varies from doctor to doctor. For example, my doctor told me that my level (.039, I believe) was “low.” But she was likely using the old standard, which said TSH levels should fall between .05 and 5.0. But in 2002 the American Association of Clinical Endocrinologists recommended a new normal, .03 – 3.0. My level would be “normal” according to the revised standard.3 Read more at TSH – Why It’s Useless. Second, many patients report symptoms that are not in line with their diagnosis based only on TSH levels. In other words, patients who are in the “normal” range still report symptoms that reflect an under- or overactive thyroid; or patients who are outside of the normal range are symptom free.4 Third, as mentioned earlier, checking your TSH level does not specifically tell your doctor how your thyroid is functioning, because it is a measurement of the pituitary gland. There are other tests available that measure the levels of hormones your thyroid is producing – now wouldn’t it make more sense to check those in conjunction with TSH? Read Recommended Labwork and Natural Thyroid Treatment to learn more about the other tests you should request, as well as how to interpret the results.

Code Name: Mama - My Thyroid Journey: Why I Fired My Doctor

So what did my doctor (or, rather, the physician’s assistant) recommend after the one test result that showed my TSH results were normal according to the standard set more than 10 years ago? Knowing that I had requested that we explore natural treatment options before jumping to medications? She had a nurse call me and let me know that they’d called in a prescription for Synthroid. That was it. No explanation, no patient education about the ramifications of starting on Synthroid. Thankfully, I researched before filling that prescription. And I read something that shocked me:

“Generally, thyroid replacement medication is to be taken for life.”5

So after one arguably inaccurate test that showed results within the range of normal, and knowing I wanted medication as a last resort, she prescribed a drug I would have to take for the rest of my life.

And that’s when I fired my doctor.

I talked to friends locally who had also had thyroid tests run by doctors who knew what they were doing. I made an appointment with a new doctor, discussed what tests I wanted ordered, and got new blood work done. She also ordered an ultrasound of my thyroid.

From the multiple (and more accurate) tests she ordered to determine my thyroid’s functioning, my doctor determined that my thyroid was working just fine, thank you very much. No life-long medications needed.

But she also saw several nodules – most benign, one questionable. “Thyroid nodules may produce excess amounts of thyroid hormone causing hyperthyroidism,” which is likely what is happening with me.6 My doctor ordered a CT scan to find out whether the nodules in and around my thyroid are cancerous.

As of the time of this writing, I’m still waiting on the CT scan results and on a follow-up with my doctor to discuss treatment. But at least I feel more confident, having done my research and finding a doctor who would listen to me.

Have you been diagnosed with a thyroid disorder?

Do you take medication, and if so, does it relieve your symptoms?

Have you successfully treated your thyroid disorder naturally – without drugs or radiation?

What websites or groups would you recommend for people researching thyroid disorders?

Here are several resources I have found valuable in my own research:

National Academy of Hypothyroidism

Stop the Thyroid Madness

Natural Endocrine Solutions

Thyroid Book Blog

10 Go-To Facebook Pages for Thyroid Patients

Here are resources my readers recommend:

The Thyroid Alternative: Renew Your Thyroid Naturally

Answers to 5 Common Thyroid Questions

10 Things to Know About Thyroid Disease, Foods and Drinks

Mary Shomon with About.com

Kalish Method

Dr. David Brownstein

The Wellness Way

Divine Health from the Inside Out

Practical Paleo has a chapter on thyroid

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Thyroid photo credit: Wikimedia Commons

Pills photo credit: me and the sysop

Statements on this website have not been evaluated by the Food and Drug Administration. Products and/or information are not intended to diagnose, cure, treat, or prevent any disease. Readers are advised to do their own research and make decisions in partnership with your health care provider. If you are pregnant, nursing, have a medical condition or are taking any medication, please consult your physician. Nothing you read here should be relied upon to determine dietary changes, a medical diagnosis or courses of treatment.

23 Responses to:
"Thyroid Rage: Why I Fired My Doctor and Took My Health Into My Own Hands"

  1. I was first diagnosed with hypothyroidism as a result of pregnancy with my 3rd and then with my 4th. My TSH with my fourth was 150, a wee bit over normal, lol. Even seeing $800/hour endocrinologists, I only had my TSH checked again. I was put on levothyroxin but then it started to make me sick after the baby was born. I was told that levothyroxin didn’t make you feel that way. I stopped taking the levo cold turkey and have never felt better up until a few weeks ago.

    I am thinking I need to have a full thyroid panel done and vitamin D levels check again based on the way I am feeling lately. It might just be a bad case of SAD, we haven’t had much sun this winter and it has been really, really cold here. If I need some sort of help I will opt for one of the natural hormone replacements, not a synthetic.

  2. Gretchen   ThatMamaG

    Good for you for firing your doctor! We just did the same with our pediatrician – doctors/their office staff should be held to customer service standards like any other industry!

    • Dionna   CodeNameMama

      Absolutely. I fired Kieran’s first pediatrician when she recommended I start him on formula for breastfeeding jaundice (sigh).

  3. Great post and I totally agree! While I don’t necessarily mind taking the medication, I agree that patient education is severely lacking. Thankfully I had a doctor who, while not perfect, is willing to listen and does more than just look at my TSH. I even requested additional not–so-common labs like a reverse T3 and they were willing to do it. I’m scheduled for an ultrasound tomorrow, actually! I have Hashimoto’s, which is like one big roller coaster all the time, and find that my physician’s assistant is equally clueless about it, so I completely avoid her altogether. :/

    • Dionna   CodeNameMama

      From my research, it does look like Hashimoto’s is not something all doctors are well-versed in. Good for you for educating yourself and making sure your doctor did more to get to the root of your problem!

  4. Monica

    I have been treated for low thyroid levels and Hashimoto’s thyroiditis since I was a teen. I have found that I feel the best when my TSH is 1.5 or less (and have been lucky to have found a PCP who is willing to treat based on symptoms and a specialist for another issue that is willing to add a TSH on to the other tests he is ordering when I have fiddled with my dosing and want to see if the labs fit with how I’m feeling).

    I have a very strong family history of thyroid issues, with all the women on one side (gma, mom, me, both sisters)having problems. We have all gone the more traditional route, with synthroid or levothyroxine. I am open to the less common treatments, but since this is working so well for me, I am sticking with it for now.

    Good luck to you Dionna. I hope you find the answers you need, and fast.

    :)

  5. tree peters   momgrooves

    I’m so happy you fired your doctor! I actually feel relief. It’s so hard to read about someone getting treated like that and staying or proceeding with treatment that doesn’t feel right. So thank you! My over-developed need to mother everyone I like thanks you.
    I like your new doctor.
    And thank you for reminding me that I have to take care of my own thyroid situation. I’m supposed to have something checked and I’ve let myself forget about it for quite a while now.
    I love your brain that can do all this research. I will check out your links.
    And I’m thinking good thoughts and sending light for your test results.
    hugs.

  6. Elizabeth

    I was diagnosed with Graves’ disease last August. I had been having heart palpitations, sensitivity to light and hair loss. They did an iodine uptake test to determine whether it was graves (in addition to blood work). I am extremely determined to cure this naturally, but I am still on the journey of discovering how to accomplish this. I am currently on methimazole just to keep my symptoms under control but in my mind it is just temporary. The thing that is important to remember with graves is that it is a auto immune disease and no part of the traditional thyroid treatment addresses that component of it. If you don’t address the auto immune issues, you are at risk for developing other auto immune disorders down the road. I have visited two naturopaths so far and am continuing to seek holistic treatment as well as conventional.

    • Dionna   CodeNameMama

      Yes!! I’m hoping I can share more info on the autoimmune aspect of Graves’ with my mom, who has that diagnosis.

  7. Amy

    I was diagnosed with Hypothyroidism with my pregnancy…unfortunately it didn’t get picked up until halfway through, but she turned out perfectly :)
    I was also told I’d have to take meds for life…even though no one could tell me exactly why I have it. I didn’t have any of the usual diseases or anything that relates to it. I never had any symptoms – as a matter of fact, I was quite severely underweight (Hypo-should cause you to gain not lose)…at about 92 lbs about 6 months after giving birth. I blamed that on the pills, but I actually think my Daughter was just breastfeeding more than I could keep calories going in. Anyway, I am on board with the all-natural approach to everything and it kills me to think I have to take this pill everyday…I’m subscribing to the post to see if anyone has any more natural approaches to dealing with it!

    • Dionna   CodeNameMama

      Amy – I’m reaching out to several practitioners/experts to gauge interest in doing a chat, so definitely stay tuned!

  8. Vidya Sury   vidyasury

    Sounds like a nightmare! So important to do the research before visiting a doctor – as we have realized in our family. Doctors usually don’t volunteer information and even if we have relevant questions to ask, I find that waiting to see the doc usually makes the mind go blank by the time our turn arrives.

    I am so very glad you dug deeper. All the best for the CT scan results. I’ll be looking for updates!

    Hugs, Vidya

    • Dionna   CodeNameMama

      Yes, I was taught to trust medical professionals implicitly, but as I’ve gotten older, I realize how human (and therefore fallible) they are! Always research.

  9. thyroid geek

    CT scan will not help to determine if nodule is cancerous; it rather will show its location and shape. If nodule is larger than1 cm biopsy must be used to rule the cancer out!
    Credentials – I worked in thyroid nuclear lab before
    (PS A large nodule in isthmus may look like Adams apple:P)

    • Dionna   CodeNameMama

      Thanks for clarifying for me! After the doctor saw the CT scan, she ordered a biopsy – I’m guessing that’s how we’ll rule cancer out!

  10. thyroid geek

    No probs.
    Best wishes on the outcome!
    Be sure to eat banana before the procedure (banana contains the substance similar to happy pill)
    Also, ask for the copy of the detailed report description (it may be helpful for getting second opinion)

  11. kadiera   kadiera

    Every woman in my family has thyroid issues. My numbers were “borderline” under the old rules (TSH in the 4.5-4.8 range generally) all through high school and college, even though I had many symptoms of low thyroid.

    When getting blood work before starting fertility meds, one test said my TSH was 5.6, one a few weeks later said 0.05, and that got me a nuclear scan and an endocrinologist. The guys at the hospital who did the scan were baffled by my need for it, given that I had no symptoms of hyperthyroid. The endocrinolgist I see did extensive blood work, and my TSH was 12.8 then, so we started meds immediately, and I was diagnosed with Hashimoto’s.

    I’m torn – the meds work for me, and when they don’t, testing usually reveals that my numbers have shifted again. I’d love some other solutions, but messing with something that works seems risky.

    • Dionna   CodeNameMama

      I’m sure you’ve tried treating your Hashimoto’s with diet changes, etc., yes? have you seen all of the resources at the bottom? There may be a couple of new books that might give you ideas. I hope you find some answers!

  12. Amy

    I’ve been doing some more research looking for natural remedies, and it is looking like many people use virgin unrefined coconut oil. I’ve found several websites where thyroid patients were now taking a lower dose of thyroid meds, or completely off of them after incorporating coconut oil. I’m giving it a try myself…not only for the thyroid problems, but it’s got soooo many uses!

  13. DavidEm   info_amowc

    This was such a great article Dionna! Working in an alternative medical clinic, it’s so sad seeing countless patients come in who were misdiagnosed with hypothyroidism or hyperthyroidism after their doctors incorrectly read their blood work :(. I hope that this article can find its way into the hands of those who need this information and thank you for putting it out there.

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