How to be Your Own Thyroid Advocate

I recently realized my dosage of thyroid medication was too high. This was great news, as it means my thyroid gland is coming back to life and doing what it’s supposed to. Although I considered this good news, it took a while to convince my practitioner it was possible for me to recognize a wrong dosage and that blood tests are not the only way to truly tell if a dosage is wrong. 

I will spare you the details and will simply share it took two weeks before my practitioner agreed to change my dose, even though I knew within two days that the dose was wrong. My symptoms were severe enough to negatively impact my ability to function normally. I could not wait two weeks to return to normal, so I changed my dosage on my own without her approval. (Please don’t do that. Always discuss dosage changes with your physician and never make changes without his or her direction and approval.)

Sign indicating thyroid frustration

Every thyroid patient I’ve ever met or interviewed says they know within two days whether a new dosage will work or not. Unfortunately, many doctors and mainstream practitioners don’t believe this and insist on waiting SIX WEEKS before performing blood work and agreeing to change a dose. If your thyroid gland stopped producing adequate levels of hormones, you would know something was terribly wrong within a few days. The same is true for medication dosage changes. Making a thyroid patient suffer for six weeks … or even ten days … is simply not acceptable and indicates a lack of understanding of the severity of thyroid conditions. It also indicates a lack of understanding of how sensitive patients are to what is occurring in their own body. There are multiple Facebook groups and international thyroid support groups that repeat this over and over again. Thyroid patients are tired of having practitioners ignore their symptoms. The fact these groups have hundreds of thousands of members from all over the world is valid proof there is a problem and lack of understanding related to adequately and effectively treating thyroid disease.

Being hypothyroid – or having insufficient levels of thyroid hormones – is a form of hell on earth that no one can understand unless they’ve experienced it. This is why many mainstream practitioners just don’t get it. They think thyroid patients should happily endure incredibly rapid and consistent weight gain unrelated to food consumption, edema that causes “cankles” and makes it impossible to see the bones in one’s feet, bald spots, depression, fatigue, itchy skin, severe aches that resemble arthritis, loss of balance with vertigo, weak muscles, muscle cramps, constipation, irritability, memory loss, slurred speech, feeling cold all the time (even in 100+ degree heat), and more. I’m here to say: NO MORE. (What I would actually say can’t be posted in a family-friendly article such as this one.)

It is estimated that 10-20% of US citizens have a thyroid disorder that requires intervention. Unfortunately, many of these thyroid conditions get ignored due to improper testing and doctors who don’t recognize the common symptoms. There is also a tendency for practitioners to dismiss symptoms, saying things such as, “You work full time and have four kids. Of course you’re tired!” Many doctors assume that complaints of fatigue, weight gain and more are simply “whining” and are not genuine symptoms or are indicators of psychological issues. There is also an assumption that weight gain is related to laziness and that patients who insist they are doing everything right are lying. That attitude, my friend, brings me closer to cussing than anything shared previously.

So what can you do? Be the squeaky wheel. If you know you have something physically wrong or that your thyroid medication dosage is wrong, INSIST your doctor change the dosage. Do your research and share your symptoms, stating the symptoms you are experiencing are obvious indicators the dose is wrong and that waiting several weeks to perform blood work will cause further damage. Be blunt and be insistent. If this doesn’t work, go ahead and get the blood work run early. Although docs insist blood work requires six weeks to show true results, your blood levels of thyroid hormones will show enough change after two weeks to show an imbalance and a need for a medication change.

Let’s review … to truly check how your thyroid is functioning, you must have the following tests run every time:

  • Free T3: A measure of the active T3 thyroid hormone.
    .
  • Free T4: A measure of the less active T4 thyroid hormone. The body should convert T4 to T3 but often does not.
    .
  • Thyroid Stimulating Hormone (TSH): A measure of a pituitary hormone the body uses to stimulate the thyroid gland. Many doctors ONLY order this hormone, which is a grave error. Only measuring TSH – a hormone produced by a different gland entirely – is similar to checking the the temperature of your radiator fluid in order to gauge whether you need more oil or not. It is indirect and very inaccurate. Measuring the true thyroid hormones (Free T3 and Free T4 at a minimum) is the only way to tell where your levels are for sure. TSH levels may also fluctuate greatly in thyroid conditions caused by an autoimmune condition, so their use is highly unreliable.
    .
  • Reverse T3: Reverse T3 is a hormone that counteracts the T3 your body is producing. It is important to test this because your TSH, T3 and T4 could potentially be “normal,” but overproduction of Reverse T3 could cause you to be extremely symptomatic because your body is “killing” the T3 that’s produced. Excess insulin and insulin resistance often cause excess RT3, so it is important to test this hormone each time thyroid hormone levels are checked.
    .
  • Thyroid Peroxidase (TPO): TPO measures the amount of anti-thyroid antibodies in your blood stream and is used to identify an auto-immune thyroid issue. TPO typically should be measured multiple times, because levels vary and it may take several tests before levels are high enough to be identified in a blood test. (Remember that a blood test is a very tiny “snapshot in time” and that the results shown in that instance may not always be 100% accurate for some measures.)
    .
  • Thyroglobulin Antibodies (TgAb): This is another measure of autoimmune antibodies that is typically only used when hyperthyroidism exists.

When a dosage is changed, it is imperative to have new blood work run (TSH, Free T3 and Free T4 at a minimum) within 3-6 weeks to ensure the new dosage is correct. It breaks my heart when people tell me their provider changed their dosage of thyroid medication and told them to come back in six MONTHS for blood tests. Severe physical harm can occur in six months of hypo- or hyperthyroidism. Waiting that long is not acceptable.

Did you notice your thyroid gland makes two hormones? (It makes more, but T3 and T4 are two of the most important ones and affect health the most.) Be aware that commonly prescribed medications such as Synthroid and its many derivatives only contain T4. Your liver should convert the less active T4 into the active T3, but many people’s bodies just don’t do that. This means many people suffer needlessly while taking Synthroid because their bodies desperately need more T3. There is a mainstream prescription, Cytomel, that contains T3. Many people find their hypothyroid symptoms disappear once they add T3 to their regimen. Natural thyroid medications such as Armour and Naturthroid contain both T3 and T4 and work far better for most people. For me personally, switching to a combination of T3 and T4 was a true life-changer. My symptoms began to disappear within a few days and I could actually begin living again.

To receive the best care possible, you must be your own advocate and seek the best care you can. Have you done that? If not, please do!

If you are a thyroid patient who can’t make sense of your blood test results, please contact me. I would love to help you interpret the results and will help guide you to discuss the results with your practitioner. Please feel free to call me at 317.489.0909 to schedule a 15-30 minute test results review consultation.

Please join my newsletter for more in-depth information on natural approaches to wellness: http://ow.ly/bQ62Q

The following two tabs change content below.
Dr. Pamela Reilly is a Naturopathic Physician dedicated to helping people improve their health and eliminate symptoms using natural, integrative methods. She has over 25 years of experience and has helped men, women and children improve their health using a holistic, client-centered focus. She sees clients in Indianapolis, does house calls, and also conducts consultations via Skype or telephone. Please feel free to contact her or visit her Consultations page for more information. Dr. Pamela speaks nationwide on a wide variety of health topics and welcomes speaking invitations.

Latest posts by Dr. Pamela Reilly (see all)

25 Responses to How to be Your Own Thyroid Advocate

  1. Nancy says:

    My husband was diagnosed over 25 years ago with Hashimoto’s and for most of that time he still felt well. 6 years ago he suffered a severe depression which has come and gone leaving him on several meds (anti-depressant and mood stabilizer). He gets his TSH tested periodically and last year was told to come back in 12 months for a re-testing. They want him to stop the thyroid medication for 3 weeks before doing the blood tests and ultra sound scans. In all this time no one has ever mentioned that he should change his diet. We are now eliminating gluten based on what I’ve researched online. Is it safe for him to go off thyroid for 3 weeks?

    • Hi, Nancy. That’s a tough question to answer. Most thyroid patients can’t afford to go off meds for 3 weeks, but maybe your husband’s case is different. The biggest thing I recommend is to INSIST they run a FULL thyroid panel and stop trying to dose based on the TSH.

      A full thyroid panel should include, at a minimum, FT3, FT4, RT3, TPO, and TgAb. TSH is a pituitary hormone. Relying on it alone is like checking the oil level in your car to see if the radiator needs more water – it’s indirect and inaccurate. I sincerely hope you are able to find a doctor who has received further training in thyroid health and who will order the correct tests, know how to interpret them, and order the correct medications.

      Please do a search for “thyroid” here and read my articles that discuss thyroid health in more detail. I wish you and your husband the very best.

  2. V says:

    Dr. Pamela, your personal story resonates with me; and your articles are bringing me hope. I am in a position, for financial reasons after a LENGTHY health battle, where I have very limited choice of doctors. The practitioner I see is a good person and would be willing to work with me if I knew some specific questions to ask or testing to request. I DO have multiple AI conditions, including T1D/IDDM for 30 years, and Hashimoto’s with an antibody count last tested at almost 1350 where normal was <100. I also have MG(US) and have been told I have pyoderma gangrenosum, fibromyalgia, chronic fatigue, etc. I am willing to do the work of reading, researching, implementing, etc. Any guidance toward articles, books, or testing requests to make with my GP would be appreciated beyond words.

    • So sorry to hear of your challenges. I encourage you to read the book “Stop the Thyroid Madness,” both editions. You can find Volume I here: http://amzn.to/1Nhdi01; and Volume II here: http://amzn.to/1NhdmNi. The information contained in those books won’t be enough to bring relief to all your issues, but getting the correct testing and treatment of your thyroid issues will have a profound impact on everything else. For example, I was diagnosed with Chronic Fatigue Syndrome in 1999, but I don’t have it. What I had back then was undertreated hypothyroidism, which was never correctly tested. Getting my thyroid levels to the correct level eliminated my fatigue, brain fog, joint pain, etc. I wish you the very best and hope you find relief soon.

  3. Pamela Noonan says:

    Is there any sort of natural treatment? I was referred to an endocrinologist 18 years ago after the birth of my 3rd child when a goiter was discovered. I was hypo briefly then tested hypo within a few weeks postpartum. Took Levoxyl for a couple of years then decided to stop. I’ve never had any significant symptoms other than the goiter. Was able to lose weight off the meds. At 41 I went back on Levoxyl and was pregnant within 6 weeks. We were not looking to have more but was a pleasant surprise. Still asymptomatic 10 years later but tried to go off meds and TSH shot up. They have said Hashimoto’s is indicated by antibody counts. Any advice is appreciated.

    • There are natural approaches that can be used, but most people still need some form of natural prescription medication in order to feel normal. Hashi’s is a special case that requires a wide variety of lifestyle changes and dietary changes to keep the antibodies down. I have worked with a lot of thyroid patients who were able to greatly reduce their thyroid meds. A few were able to get off of meds completely, but that takes a firm commitment and dedication.

  4. […] find someone else, as it is impossible to gauge thyroid health solely using that test. (Please read How to be Your Own Thyroid Advocate for more information on correct thyroid […]

  5. […] physician to order a complete thyroid panel and a saliva hormone test. For more information, read How to Be Your Own Thyroid Advocate. You can order your own saliva hormone test here: Saliva Hormone Tests. Most people find their dry […]

  6. Carrie says:

    Thank you for your article! It rings so true.
    After three years of feeling progressively ill, exhausted, and eventually fibromyalgia type pain from undertreated hypothyroidism I switched Doctors. I was excited! This new internal medicine doctor seemed to be thyroid savvy. But, after a dosage increase and more than 6-weeks of feeling better the light-headed days, exhaustion, and sharp muscle pains returned. I knew it was time for an increase. I couldn’t get into my doctor for two weeks so I increased my medication. No way was I going to slip down that painful slope again, I had to put a stop to it.
    By day three I was feeling better. I called and left a message for a new script since I would be running out. The snooty nurse told me, “You can’t do that. I will send a message to the doctor and let her know what you are doing.” Believing my doctor understood the terrible road I had just traveled, I couldn’t wait for the nurse to eat her words.
    I was very disappointed when the nurse called back with the Doctors instructions to never increase my meds again. Although she did send in a new prescription. I guess I have to tell my new Doctor that I still cannot fully trust others when it comes to my body. I was miserable for way to long because I put my full trust into a doctor who thought she knew my body better than I do.
    I know what you mean when the doctor argues about how you actually feel.

    • GWWR says:

      Hi, Carrie. I’m so sorry you went through that. Although I understand that doctors are concerned about their own liability, I am sorry yours doesn’t understand that a wrong dosage cannot be allowed to continue. I congratulate you on being able to work through this, and hope your doctor will learn much from you. I wish you the very best!

    • Brenda says:

      I am going through these same battles as you are with my thryoid.Back in 1994 I was diagnoses with hypothryoidism so I was put on Lovoxyl 112.That was fine for a few years,but then things started changing.So they raised my meds to 137.That helped for acouple years.From then on the drs raised and lowered my meds about every year.I had alot of symptoms also like you had.I started seeing an endocronologist after that for a few years,she put me through a biopsy which was torture!They found growths that she wanted to check for cancer,but they were benign.She had me taking 137 4 days a week and 150 3 days a week!!After awhile awhile my hair started falling out all the time.So I decided to just let my family doctor take care of my thryoid instead,because he thought she was keeping me too high as he would say each time I went to see him.Well he dropped me to 125mcg for acouple years now he has lowered me clear down to 100mcg!!I have never been that low in my life.When I talked to him about how I felt,he got snippy with me and said my thryoid levels were just fine!!He doesn’t listen to how I feel,he just leaves me on 100mcg.I have again scheduled an apt to see a different endocronologist,but have to wait 5 months to see him!!I now have sore joints all over my body,muscle cramps in my legs,brittle nails,hoarse voice,fatigue,low energy,and dry skin.I think I might take a higher dose on my own.I dont want to feel this way all summer!I am so tired of all of this.

      • GWWR says:

        Hi, Brenda. I’m so sorry to hear that. I can relate to your frustration. I would definitely encourage you to seek a functional medicine or integrative doctor near you who will check the correct thyroid levels and prescribe based on those and on symptoms. It is worth it to find someone who will do the correct testing and prescribe accordingly. It made all the difference in the world for me. I’m hopeful you can find someone who will work with you and include you in their treatment team instead of issuing orders. My thoughts are with you. I wish you well!

  7. Nakia says:

    My doctor just can’t get it right she sent me hyper. I have been dieting and exercising since September and can’t lose a pound. My new labs has my tsh as 0.03, ft4 1.8 (0.6-2.2) ft3 3.3(1.1-4.7) I’m on 112 of levothyroxine and 5 mcg of cytomel twice a day.my vitamin d is 41

    • GWWR says:

      Hi, Nakia. I can’t provide advice online and cannot interpret blood test results, but I strongly encourage you to find another doctor.

  8. kellielp says:

    I seem to have a hard time getting a doctor to prescribe Armour. Every time I try a new dr they want me to start on Synthroid, which is a bad word in my house. I become severly depressed, over weight, fatigued, cold, and off balance within a week of changing meds. I just don’t understand why they insist on Synthroid and won’t listen. I need help with my thyroid in the worst way!

    • GWWR says:

      Hi, Kellie. I’m so sorry to hear about your struggles. My recommendation is to ask very pointed questions – specifically about thyroid treatment – before scheduling with any doctor. Find one you know in advance will prescribe Armour or one of the other alternatives, and schedule with him or her. You have a right to take the medication you wish to.

  9. mathilda Phillips says:

    I have experienced the same,” just increase meds, then wait for 6 weeks”. I also had diarrhea for weeks.

    I changed Drs a lower dose from 112 to 100 and am doing fine. Am 83 years old, Drs are “know it all ” and want to be “obeyed”!!!

    • GWWR says:

      Hi, Mathilda. I’m so glad you figured out what was causing your problem. Congrats! It helps when people know themselves well enough to recognize when a dosage change is needed. Good for you!

  10. amanda says:

    So where would be a good place for me to start?

  11. amanda says:

    I am seeing a weight lose doc on the 29. I am over my family doc. the weight lose doc is suppose to check alot of labs. What should I ask for for my thryiod? I am only one 50 mcg. Year ago Iwas on 100 mcg. Have been told when I was having my last daughter by the ob doc I might have hasimto.

    • GWWR says:

      Thanks, Amanda. This post shows the tests you should make sure your doc is ordering. The only one you probably don’t need right now is the Anti-TG test. All others should be ordered along with a Basic Metabolic Panel. I wish you well!

  12. amanda says:

    How can I get my doc to do this thryiod level checks?

    • GWWR says:

      Hi, Amanda. I will return your call very soon. Thanks so much! You have a right to request specific blood work from you doctor. We often forget that we are customers and that our doctors are service providers. As the customer, you can request the blood work you think you need. If your doctor refuses to order it, it may be time to consider getting another provider.

  13. Gizelle says:

    You do have the wrong doctor. You need to get to a physician that doesn’t mask the diagnosis (like most western doctors) but finds out why your thyroid is being attacked. You probably have an automimmune disease and your doc needs to find out why it is attacking your thyroid. Until then, the meds will only make you feel a bit better, but your body is attacking tissues and will eventually lead to worse conditions.

    Read this and start searching. [link removed]
    I have my 2nd appt. with a functional physician today and will see the results of my bloodwork and then will be given a fecal test kit and a saliva test kit. Both to further analyze my body chemistry to see what is working and what is not.

    Good Luck

    • GWWR says:

      I do NOT have an autoimmune thyroid condition. I am a Naturopathic Physician and know which tests to request and how to identify an AI thyroid condition. I also know how to reverse thyroid conditions. I use saliva hormone testing and many other assessment techniques. I only see a functional MD/NP to get my prescriptions since I can’t write my own. LOL

Leave a Reply

Your email address will not be published. Required fields are marked *