Why Your Thyroid Test is Wrong–And What to Do About It.

The information provided in this post is for information purposes only and should not be construed as medical advice.
It is not a substitute for your doctor's care plan or advice.

Do you or someone you love have thyroid disease? Thyroid Disease is Epidemic. Many doctors rely on the TSH Thyroid Test to figure out if their patients are sick or not. But they might be totally wrong. Here's what you need to know about thyroid tests and what to do about this problem.

{More and more, people are being diagnosed with thyroid issues.  From Hypothyroidism to Hyperthyroidism to Graves' Disease to Hashimoto's, it seems like issues pertaining to the thyroid are everywhere.  I myself have had several diagnoses over the years and never realized the implications of how important it is to take care of your thyroid — because the health of your thyroid affects so many things. 

I'm thankful to have Trisha from Intoxicated on Life here today to share with us some ways to work with your doctor to insure that you are getting good care for your thyroid — and for yourself.}

Thyroid disease is rampant these days and since the thyroid is affects and is affected by many things, including the food you eat and your adrenal glands, it's important to get informed about this important gland as much as possible.

I've struggled with hypothyroidism for years. I started noticing severe fatigue, dry skin, weight gain, and joint pain when I was just 22 years old.

I wasn't old enough to be feeling that bad. I went to the doctor on a few occasions and described my symptoms telling her I just didn't feel well.

She blew me off and told me I was perfectly healthy.

Long story short, I was able to begrudgingly get my doctor to run a TSH test. (This is the standard test pretty much all doctors run to test thyroid function. I didn't have any idea what it was at that point.)

Two days later I received a call.

Low thyroid levels.  Supposedly I had hypothyroidism.
The plan? Start synthroid (that was the first problem, but more on that later).

I started my meds and waited 6 weeks.

I still felt bad.

We tweaked my meds. Waited 6 more weeks.

I still felt bad.

Round and round we went until my search for information (and a new doctor) began.

(Before we get started, I want to let you know that I am not a doctor or any sort of medical professional. All of this information I have gleaned from my own research and should not be used for any sort of diagnostic purposes. Use common sense, do your own research, and talk to your doctor before making any changes to your diet, supplements, or exercise routine.)

TSH:

The Useless “Gold Standard” Thyroid Test

In this search for information I've learned that the standard TSH test that most doctors rely upon for both diagnosis and treatment does not give a complete picture of what is going on with your thyroid.

You see, TSH, which stands for thyroid stimulating hormone, is actually a test of what the pituitary gland is doing.

That's right, it isn't even testing any of your thyroid hormones.

In theory, when your body does not have enough thyroid hormone, your pituitary gland should be releasing TSH to signal to your thyroid that you need to make more (sort of like a wake up call for your thyoid). Those with elevated TSH levels should theoretically have low thyroid levels and those with low TSH levels should have enough (or too much) thyroid.

So, what's the problem? It seems pretty cut and dry, right?

Wrong.

There are many many reasons why doctors should not diagnose or treat a thyroid patient based on TSH levels.

Some people simply have a malfunctioning pituitary gland and this is why it is not producing TSH. Unfortunately, it is beyond the scope of this post to go into all of the reasons as to why TSH is not an effective marker. You can read countless stories of hypothyroid patients who were not diagnosed for years and years because of doctors who simply tested TSH and refused to listen to symptoms and do further testing.

In theory, the TSH test isn't so bad. But, in reality it isn't so good.

What Lab Tests Will Help for Thyroid Problems?

So, if TSH isn't the best lab test for diagnosing and treating thyroid disorders, what is?

First, I want to confirm—in case you haven't already guessed—there is no test that can substitute for a doctor who will listen to how you feel.

You need to be seeing a doctor who will listen to you and will place great value in your symptoms when diagnosing and treating you.

Below are the tests that I believe are essential for anyone who is struggling with thyroid problems or believes they may be struggling with thyroid problems.

GREAT RESOURCE

Additionally, there is currently a Free Resource called The Thyroid Secret.  I HIGHLY recommend it.  I met the creator of this series a few years ago and she is very very knowledgeable.  In fact, I recommend her book just a bit further down in this post.

The Thyroid Secret -- Learn about Thyroid Disease in this Free Series by Pharmacist Izabella Wentz

{From Adrienne: This is a seriously important post.  I have been doing a lot of digging into thyroid research recently, for reasons which I will share soon.  So many people have issues with their thyroid and they don't know where to go or what to do. If you haven't already, please stay tuned to make sure you get this information.  It's crucial.  You can subscribe to my site by grabbing this Essential Oils free book here.

In the meantime, I would highly recommend the following books.  I am not saying this is the advice you should follow (i.e. this isn't medical advice), but it is very very interesting and was very helpful to me.  By the way, the links to these books are affiliate links, so if you make a purchase after clicking on it I might make a commission. Your support of my blog is much appreciated and helps keep this free resource up and running.  Thanks!}

One of the best books on thyroid health in my opinion.

One of the best books on thyroid health in my opinion.

Why Do I Still Have Thyroid Symptoms?

Don't sit back and let the doctor dictate to you. Ask questions. Make requests. Be an advocate for yourself!

Luke-Trisha-150x150Trisha Gilkerson is a homeschooling mom to four crazy boys. She blogs with her awesome hubby Luke at Intoxicated on Life where they talk about faith, homeschooling, and health. They’ve authored the Write Through the Bible curriculum and family Bible Studies and have recently released their first healthy living book – Weeding Out Wheat: A Simple Faith Based Guide. They love connecting with their readers, so be sure to follow them on their blogFacebookTwitterGoogle+, and Pinterest.

These comments do not necessarily reflect the opinions of Whole New Mom, LLC.

Comments

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  1. Tivra Marks says:

    Hi-

    I had my thyroid removed after finding follicular cancer. Long story and so frustrating resulting in three surgeries within 3 months. Anyway, I had my year ultrasound and blood work done yesterday and I am feeling disappointed because my levels are weird and I expected them to finally be normal. My medication dosage has changed like 5 times and each time my doctor lowers the dose I go through a couple weeks of re-experiencing all my hypothyroid symptoms.
    Basically my blood work says I am hyperthyroid now! My T4 is high, and my TSH is low. Ugh, I have no hyperthyroid symptoms though, I was finally feeling like myself again. I am now lowering my dose again.
    Also, one of my cancer markers got higher by a little from my last blood work 6 months back.
    I had cut gluten and while I am eating some sour dough bread I am trying to eliminate as much white processed flour and sugar as possible.
    I am curious if anyone has had this same strange blood work happen to them? I just don’t want to go back to feeling like one of Ursula’s lost should, exhausted and half awake all the time!
    Thanks!

  2. Christine says:

    I am almost 62 and started losing my hair about 2 months ago. So much – and I have had thick hair my whole life. At first I thought is was new brand of color my stylist was using. Well, yesterday I had blood work done and my TSH is 2.58. Also, RBC is 13.2 – range is 12 to 16.5. Hgb is 12.2 – range is11.5 – 15.0. I emailed my doc requesting T3,T4. Hopefully she’ll do it!!!
    About 10 years ago my RBC was 13. – my doc said normally he put people in hospital at this low number or transfused them. I went to an endocrinologist – turns out my iron was just low….as I hope that’s what it is now. I was told since I was about 20 that I needed to take iron. I poo-pooed it. I didn’t know what it meant – now I know that it also mean I do not have ENOUGH blood in my system. Any ideas what this is?
    Think good thoughts for me…..
    Hopefully not thyroid – altho it does run in my family – mom, 2 sisters, nephew.

    • Hi there. Sorry you are having so many troubles. I am sorry but I don’t knwow what you mean. You are saying that they are telling you that you don’t have enough blood or not enough iron?

      Praying for you right now.

  3. I agree with them testing your T3 and T4 but are they looking at your Reverse T3? Have them run an entire thyroid panel including a RT3.

  4. For almost 9 years my thyroid levels have been all over the place like a proverbial roller coaster. I was evaluated by an endocrinologist in 2015 and ultimately, due to a goiter, I had my thyroid surgically removed in December 2015. My levels, as of 1-20-17 are still not under control. My TSH levels indicate that I’m severely hypoactive (my TSH is 83.02) and my new endocrinologist did a clinical evaluation and said that he thinks that my TSH number is “deceptive” and that going forward he thinks that running tests only on my T3 and T4 will be an adequate set of tests in which to adjust my Synthroid if/when it needs to be adjusted. He stated that the clinical evaluation did not give him any reason to believe that my TSH level is correct as I didn’t appear to be experiencing clinical symptoms that indicate that level of hypoactivity other than the extreme fatigue, excessive sleepiness and dramatic hair loss.
    Is he correct in stating that he can adequately treat me using only my T3 and T4 levels while dismissing the TSH levels or should I begin looking for a new endocrinologist after only 2 visits – he’s the endocrinologist I was referred to by my previous endocrinologist after I informed her that I was requesting a referral for a new endocrinologist because she seemed dismissive regarding my concerns and frustrations as it related to the fact that I was not getting any better under her care and due to her repeated insistence that I give things “more time” after I told her that the level of fatigue and sleepiness had significantly worsened after I had surgery to remove my thyroid. I have no problem with “firing” another physician if that’s what is necessary in order for me to get the best medical care that I can so that I can have the quality of life that I deserve because right now I’m not able to enjoy the little things in life like going to the movies with my boyfriend because I’m still dealing with excessive sleepiness, so staying awake while sitting still for the duration of a movie is very difficult.
    I appreciate any advice/assistance you can provide.

    • Hello Linda. I’m really sorry for all you are going through. I don’t know what to advise b/c I am not a thyroid expert. This practitioner helped me through some of my issues and then I moved to another one. Perhaps reaching out to her would be a good starting point? She wrote this post: https://wholenewmom.com/health-concerns/thyroid-disease-hypothyroid-what-causes-hypothyroidism/

      I know that liver work was very important for me and I think it still is.

    • Hi Linda, I have the same thing that you do, and after dealing with this issue for six years, I looked at the ketogenic diet to help me with the tiredness. Search it out under nutritional ketosis.
      I have been doing it for 2 months, and I don’t feel tire, nor my mind is foggy and forgetful like it was before. Good luck to you!

  5. I’ve been searching for months for any help. My doctor says I’m hyperthyroid. I’ve have multiple blood test over the last 2 years, mainly TSH and Free T4 and my TSH never gets above 0.03. and T4 has been 1.96 (highest) and as low as 1.33. I’ve never had a symptom and I’ve refused to take any meds and also asked for an appointment with an endochrinologist which she did get me an appointment but we only have 1 in our area and couldn’t get an appointment until February 21st. My doctor is still constantly on my case to take the meds. Any ideas or thoughts on what other tests might help me figure this out.

  6. I am not a doctor. But a woman who has gone from a very poor thyroid situation to a very controlled healthy woman.
    There are so many Factors involved and it is not over night.
    Stress. Clean diet up including toothpaste. NO chemicals. Lots of supplements. Clean liver. Tweek medicine regularly. FIND A DOCTOR who will listen to you and not only treat thyroid panel numbers but symptoms. I take 10K vitamin D daily. To get get Vit D levels and B12 levels up I did shots for awhile. You will never bring up those number drinking milk. It took me a couple of years to really feel good. Patience and persistence. KNOW your body and learn everything you can about thyroid.

  7. Sick n Tired of being Sick n Tired says:

    To the author of this article, are you taking the medication needed for hypothyroidism?

  8. I was not aware that my doctor was testing me for TSH, but come to find out mine was 20.14 – I was then tested for FT4, which was at .8 ng – did not seem to be a problem. Then I was also tested for Thyroid Peroxidase Autoantibody which is at 564. I just completed a full C3 through C7 cervical fusion with a metal plate – could this of damaged my thyroid at all? I am not starting on 50 mg of medication. Last year my vitamin D was nothing and started taking a supplement, which I am still taking. I had 3 surgeries last year and lost my job and then started a new job with many other stressful things happening in my life – could this all be a trigger.

    • Hi Cynthia.

      I am not at all a thyroid expert, nor a physician, but my practitioners have told me that stress for sure affects the adrenals and thyroid. Sounds like you have been through a lot. My practitioners had me work on removing stressors — and it’s very hard. And things like toxins, foods that you are sensitive too, etc., are all stressors.

      I hope that is helpful.

  9. An ultrasound shows that I have an enlarged thyroid. My doctor thought that I may have hypothyroidism. He also ran a test for my TSH levels.

    The range is .45- 450 my TSH level was .538
    The ultra sound was multi nodular
    He said that I do not have hypothyroidism. He did not refer me to an endocrinologist but to a surgeon. As I read the posts, my T3, T4, TPO, or TgAB levels have not been tested? I want to respect the doctor’s advice but I’m thinking that I may need a second opinion about my treatment options.

    • I personally would want those other values to be known. Best wishes.

    • kayleen says:

      I am no doctor. I do follow a dr on fb. He states the tsh should be 1.0 or below. I do know from another dr the free t3 should be on the higher number. Vitamin d should be around 60.

      • Blessings! What is the name of this dr? I have really low tsp and would love to hear her/his perspective on low tsp. Thanks!

  10. I felt fine and went to my Dr. for a totaly unrelated issue. My Dr. gave me the your 40 and need this blood test. He then told me that I have a thyroid problem – here is script for sinthroyd. After 6 weeks of feeling like crap he gave me another script. After another 6 weeks and feeling like crap another script. I never filled the last script. During this 12 weeks I started doing some research and talking to friends that have legit thyroid issues. Every thing I read and was told – more testing and research is needed. But my Dr. (who is no longer my dr.) told me that all that research was for nothing that he knows best. When you start to read about how everything in our bodies work together it was educational. I still have no new Dr. but I am trying to eat better and move (exercise) more to start. I still feel fine. My sister has been told by her Dr. that her thyroid is large by feel and has had many of the basic test – with her #’s coming back ok. My mother just recently was told that her #’s are off and was asked a bunch of questions (by her Dr- the same as my sister). Come to find out more blood test and my mom is low on Vit. D! She doesn’t drink enough milk- so now takes a vit D supplement and she is now ok.
    Lesson learned- if your dr. doesn’t want to listen to you or ask you a bunch of questions and you know something is wrong or off – find another Dr. and don’t take any pills until all possible tests are done.
    After all we are told that we know our bodies best and that we are our first dr. to say something is not right.

    • I’m glad you are finding answers. The only thing I would add, and this isn’t medical advice, is that I have read in many places that vitamin D can drive Mg down so I take Mg with the D all the time. There is conflicting information out there about vitamin D. Hard to know what to believe. Take care.

    • You can still have normal levels and still be hypo , if you didn’t go to him about your thyroid then he’s a quack . There’s six test you need for the thyroid FreeT4, FreeT3, RT3 ( reverse T3) TSH , and two others I can’t recall . But look up what thyroids do I need and links will pop up.

    • I think this is happening to me as well, like Terri described. I went to my family doctor with a completely different issue that was really scaring me. Then – long story short hopefully – later that night I was waiting for my doc to e-mail me the name of the doctor we agreed I should see for my new issue. But there was no name there. Just a quick, maybe 2 line msg, saying “your TSH is yadda and now you must forever take this medication I have already called into your Pharmacy. You will need to take it every day for the rest of your life”

      WHAT??? No. I came to you with scared and in so much pain, and THIS is what I get? Why?

      I looked it up online, it was too late to call anyone, so I was up all night reading (and crying and feeling overwhelmed) about this, especially the medication. the name did not sound good, I always do the Heal With Food (I am 47 and have had a bit of Everything. And most of it healed or “resolved” with a change or addition to diet) – anyway, not loving the thought of another medicine, hello, I am allergic to Everything and now I have to take a thing that says “synth” at the beginning?

      My next problem/fear is that my resting heart rate for the past few years has been scary high. 150 bpm, I think from my last doc visit. And the side effects of this med are increased heart rate? My dad had a massive heart attack, his dad passed away so young from a heart issue and my doc said recently that I need to go see a Cardiologist. No way am I taking this, I am so scared!

      Crazy how the same people who tell us we are wrong, our research is wrong, are the same people who are overpaid to tell us we are Not Doctors and therefore, we know nothing! I am completely overwhelmed. My heart. My non-reproductive system. Now I have to take synthroid, even though it is clearly not safe for me? 🙁 I live daily with Fibromyalgia, have every day of adult life (25 years) I wake up every morning, eat a quick bite so my migraine meds will go easy on my tummy, then I take migraine and allergy meds. I have night meds as well.

      Synthroid has to be taken in the AM, on an empty stomach, & my acid reflux med is on the list of stuff to not take when taking the thyroid thing. But … I don’t have these symptoms of hypothyroid. I have almost photographic memory (which I need – my precious Mother’s is slipping away from her, she is a very young and newly 69). I have a thick head of waist length hair. My skin is dry because it is winter and I am inside with a family member who has the heat on 24/7. My muscles hurt if I over do it, but that has always been with me. Since I was freaking 22 and no one knew what Fibro or Chronic Fatigue were. There is mold in this house – when I leave which is rare, I don’t have migraines and allergy symptoms. Living elsewhere is not a possibility.

      What do I do? I am afraid to “challenge” my doc & not take these horrible sounding pills. Is this an urgent need, so we know? I hate this fear, and I am so sorry to dump this on strangers. But when I saw Terri’s post, I knew I was not alone, that this might be over-diagnosed and wondered if anyone has advice. I am so tapped out, I think my sweet kitty who is asleep on my leg has the right idea. 🙂 Except I think my leg fell asleep… God bless all of you, so much, I hate that anyone has to hurt.

  11. If your tsh is abnormal your doctor should test for a full thyroid panel. This is protocol for where I live. Tsh is strictly a screen.

  12. Hi does this all apply if you have no thyroid. Mine was destroyed by radio iodine treatment in 1995. I cannot find one doctor in the UK who will listen to me. I’m menopausal too and I know both conditions almost bounce off the other. It’s hell. But no one in the medical profession wants to know. My doctor refuses to refer me to an endocrinologist as she doesn’t see the point. Does anyone know a doctor in the UK private or otherwise who knows and understands these matters. Would be so grateful for any info.