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

 

The TSH Thyroid Test. Think you have hypothyroidism or other thyroid disease? Why your thyroid test might be wrong and what to do about it.

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.)

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.

What to Do About Thyroid Problems

If you have thyroid problems, after getting proper testing here are a few more suggestions for getting your health on track.

1. Find a doctor who will not only complete the appropriate tests, but will also medicate you appropriately. I suggest finding a doctor who is comfortable using natural desiccated thyroid hormones (as opposed to synthroid or levothyroxine). The doctor should be determining medication based off of the above tests as well as how you feel.

2. Cut out gluten. Gluten is highly implicated in autoimmune thyroid disease. 90% of thyroid disorders are autoimmune in nature.

3.  Optimize Vitamin D levels. {From Adrienne. I have been learning that apparently you need to have good adrenal health before increasing vitamin D so please be careful and don’t self-prescribe.}

4.  Read this list of 5 Foods that Can Wreck Your Thyroid – Are you eating any of these?

{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 subscribe to my blog to make sure you get this information.  It’s crucial.

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.

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  1. Stephanie W. says:

    ‘Good post on what tests to get! Having Hashi’s and knowing what I know now, it’s hard to believe that some doctors still totally rely on TSH only (like my mom’s family doctor–still relying on outdated tests). Actually, some doctors who are “more in the know” don’t even look at TSH; they only look at Free T3 and Free T4. It’s also important where those numbers are in the ranges. Optimal Free T3 should be in the upper third of the range, and optimal T4 should be in the upper half to upper third of the range. Also, yes, vitamin (hormone) D3 is important. I’ve learned from the Magnesium Advocacy Group on Facebook that magnesium is the conductor of this and many other hormones, enzymes, etc. So, optimal magnesium levels are important. If D3 levels are low, there is also a magnesium deficiency that needs to be addressed.

    • Good points! It is important that people pay attention to where on the range they fall. I believe it’s very important to find a doctor who will not only look at the appropriate labs, but also one who will listen to symptoms and how you feel. Having hypothyroidism for this long, I can typically tell when my levels are off and my “optimal” level may not be your “optimal” level.

      • Stephanie W. says:

        Yes, I definitely agree that lab numbers do not tell the whole story and may actually be “off” from what is actually going on in the body. I’ve been dosing myself for quite some time, because I know how I feel and waiting six weeks for a lab test doesn’t work for me! It is a different journey for everyone, for sure.

    • Great post! I have Hashi’s, too and was un-diagnosed for over 20+ years. I was first put on Levo for a year and that made me worse, because my Dr. didn’t recognize my LOW Adrenal Fatigue. Ugh!!!! I know all of this information, Trisha, but you wrote it so eloquently. Very easy to read and understand. Thanks! :)

  2. Hi Trisha,

    Great article. Another very bad way to ruin thyroid function is to eat a lot of soy products. I did soy products for years thinking I was being “healthy.” Little did I know that I was destroying my thyroid. I wound up with hypothyroidism and now have to take Armour thyroid for the rest of my life. After developing this condition, I did a lot of research. The soy connection totally made sense in my case. I never ate another soy product again and avoid them like the plague, reading labels religiously to keep anything remotely resembling soy out of my body.
    Just thought I’d throw that in because I feel that soy which is now almost totally genetically modified is a poison masquerading as food.

  3. Nan McClain says:

    Thanks for the great post, Trisha and Adrienne! Eliminating soy products could be #4 on the list. The book, The Whole Soy Story was loaded with information about that.

    • You’re so right… eliminating soy should also be on the list of things to do for anyone with hypothyroidism. In my opinion, really soy should be avoided by everyone. Lots of problems with soy!

  4. You forgot one of the most important tests: reverse T3!! Especially important is the relationship between free T3 and Reverse T3. And Thyroxine Binding Globulin. That is another one you didn’t list.

    Here is where you can get a comprehensive thyroid panel for under $200. And that is WAY cheaper than you can get it at the doctor’s office unless you have amazing insurance.

    http://www.lef.org/Vitamins-Supplements/ItemLC100018/Comprehensive-Thyroid-Panel-Blood-Test.html

    That doesn’t include the Thyroxine Binding Globulin, but you can find that test at Life Extensions as well.

    Without my reverse T3 test my hypothyroidism would never have been diagnosed.

    • Thank you for mentioning Reverse T3. I know that some people do need to have this test done to get their levels regulated, so is a good idea for those people whose T3 and T4 levels look good, but still aren’t feeling up to par.

      • I have been trying to get my Reverse T3 checked but my insurance won’t cover it, my doc never heard of it…then she got differing opinions about it..the hospital blood taking people never heard of it. what a mess! I can’t afford the almost $200 for the above test. I guess i have to start saving money for it. I would like to know what it is. My doc always ‘forgets’ to order the Free T3 also…so annoying.
        sorry for venting!

  5. Good stuff! Thanks for putting this together. I acquired non Hashimoto thyroiditis in 2007. Have been on the path of healing and have learned so much since then. Nearly all of my “problems” are autoimmune related. Cleaning up my diet and detoxing my environment has helped greatly!

  6. Eva Coleman says:

    For years, my doctor would swear that I had a thyroid problem. But, the test always came back normal. I have recently been diagnosed with Hypothyroidism. I have the low vitamin D and the high cholesterol. At the end of all the testing, the final diagnoses is Insulin Resistance! This may be something that doctors need to look into for their patients.

  7. My doctor tested for the T3, T4, etc. mentioned above and also something he called “reverse T3.” (Maybe that’s one of the antibodies you were talking about?) This “reverse T3″ apparently blocks the T3 receptors. In my case, my thyroid was fine, but I had low thyroid symptoms anyway, because my body was producing too much of this, so it couldn’t USE the T3 it had, even though there was plenty.

  8. This post may have saved my life. I was diagnosed with fibromyalgia, and resigned myself to a life of anti-depressants and feeling like death warmed up. It turns out that I have hypothyroidism (not Hashimoto’s, thank God!). I have been exercising two hours every day and living on 1500 calories a day for the last four months, I even started a blog on my experiences trying to get into shape, and I have actually GAINED weight. I had the recommended thyroid tests run, and sure enough, hypothyroid. I have had this since I was 23. Hopefully, with treatment, I will lose this 60 pounds that I have been fighting to get off of me.
    I cannot thank you enough!

  9. Such good info, I was just about to get blood work done for thyroid, I will be requesting these tests! Thank you!

  10. Oh, wow! This is super helpful for me and my readers. I am a member of the infertility group of vloggers on YouTube and thyroid levels are critical for ovulation and egg quality. I am passing this info on my readers on Facebook and pinning for future reference. Thank you so much!

  11. Jennifer B says:

    Great post! Just discovered all of this about myself about a month ago. And, it really is incredible to learn how many people deal with this and how many go undiagnosed! My doctor gave me a couple books by Dr. David Brownstein. Check out his book Overcoming Thyroid Disorders! It has everything you have discussed here, but, adds his years of research on iodine deficiency – iodine & selenium being key to the conversion process T4>T3. Turns out we need more iodine than RDA because RDA doesn’t take into account the toxic halides which are in our food and clothes and mattresses etc.. The halides are similar to iodine and the body absorbs them in its place causing not only a deficiency but when prolonged plenty if other serious health problems. Putting the iodine back in can allow some people to go off thyroid medications or can optimize the use of Armour thyroid. I am so excited to be on this path myself! People in the office started commenting after 1 week how I looked like I had lost weight which surprised me and I am starting to see how my face is looking less puffy around the eyes in particular. I’ll try to remember to come back and update in my progress, but, add a link to this book too if it helps fund your blog and you find it useful. It has definitely changed my life.

    • I appreciate your comment but would like to just add that I am not a fan of Dr. Brownstein’s use of antibiotics that tends to be a little too “free” in my opinion. Also, it is said that about 90% of those w/ hypothyroidism have Hashimoto’s and most Hashis can’t tolerate iodine, especially when they have leaky gut. I have been reading this quite a bit. Thanks! I am so glad you are doing better though and perhaps Trisha has some thoughts as well.

  12. Thank you for writing this post. The more people who know about this, the better our hope for change in the blind, ignorant, cruel medical community. I’m one who suffered for many years with raging thyroid symptoms, at my worst being bedridden. I’ve always had optimal TSH and low in range FT3 and FT4 so I’ve always been declared normal/healthy. Once I ordered my own TPO, TgAb, TSI, and reverse T3 tests, my shockingly high test results on all of those convinced my doctor to do a thyroid ultrasound to find out that my thyroid is almost completely destroyed. My TSH remains optimal and I still can’t get thyroid treatment from a mainstream doctor because I pass their “gold-standard” test and that invalidates any other test. I have to use alternative doctors and I take T3 meds; I can’t tolerate anything with T4 in it including NTH. As the site says, stop the thyroid madness!!!

  13. This is great information, thanks for sharing!

    You ROCK for linking up this week to Tip Me Tuesday. {high fives}

    Just a heads up, Tip Junkie can help you index your blog more effectively if you upload at least 2 images, 2 steps, and blog post URL into your Tip Junkie craft room!

    Simply login and click “add a project” on your profile page to get started. {yep I’ve got your back!}

    ~ Laurie {a.k.a. the Tip Junkie}
    Link ~ http://www.tipjunkie.com/how-to-add-a-craft-room-project-on-tip-junkie

    • Hi Laurie! Glad to see you again–I’d missed your linkup. (found you on G+ as well). I’m a little confused what you mean about the 2 images and 2 steps. I just start my own login in the craft room? I’ll go and try…hope I’ve got that right :). Take care!

  14. Thanks for writing this. I am newly diagnosed and trying to treat it without getting overwhelmed with all the info!

  15. I live in Perth WA and have been very frustrated with finding out why my weight is gaining and psoriasis is at an all time high. In addition, hot flushes, dry skin etc.
    Anyway went off to my doctor to ask for a THS, T3 and T4.
    I received results for the following (with no idea of what TPO and TG are) –
    THS – 2.26
    TPO – 12
    TG – 18
    While I asked for T3 and T4 to be tested, there was no results returned for either of these.

    Can anyone advise what the above results mean?

    I have found another doctor who apparently is very good. His name is Dr Ismail Salim and I see him in late March (earliest appointment).

    • I am not a doc but your TPO is a little high so that would indicate hashimotos if I am not mistaken. I can’t medically advise but i have read going off iodine and I containing foods while you heal your gut, plus going off gluten, is huge.

    • Hey can anybody tell me where dr salim works now?

    • Hi Julie, just wondering if you have a contact for Dr Ismail? I cannot seem to locate his practice no matter how many phone numbers I’ve tried from googling!

  16. I have been dealing with stupid doctors for 8 years. I have Hashimoto’s and they will not treat just wants to play the waiting game. My lab results are Thyroid Perx AB is 905 Anti Thyroglob is 4 TSH is 1.0451 FT4 is 1.10 Vit D is 30 high cholesterol enlarged thyroid is right lobe 5.4×2.2×1.3 left lobe is 5.3×2.4×1.7. I have been to all the endo’s that my insurance will cover and my pcp doesn’t know anything and wont do any testing. I have so many symptoms but no body will listen and I don’t know where to turn

    • Gina, I’m SO sorry to hear that you’ve been dealing with these problems for so long and no help from doctors. Unfortunately, I hear stories like this all too often. I’m not a doctor, but I can say it appears from the labs you’ve listed that there is definitely something wrong.

      Tomorrow, you’ll need to come check out the post on my site Intoxicated on Life that will give you 3 steps you can follow to find a good doctor (it’s work, but it’s worth it!) and also there will be a post here on Whole New Mom about questions you can ask your doctor once you find one that will help you decide whether they’re a good one for you (no point in wasting a bunch of time on tons of appointments if they end up not being a good fit).

      Are you gluten free? If not, I’d really encourage you to ditch the gluten. It’s implicated in Hashimoto’s. You can read more about that here –> http://intoxicatedonlife.com/2014/01/31/thyroid-gluten-connection/

  17. “Optimize Vitamin D levels. {From Adrienne. I have been learning that you need to have good adrenal health before increasing vitamin D so please be careful and don’t self-prescribe.”

    Can you please give more details on needing to have good adrenal health before increasing vitamin D? I am pretty sure I have adrenal fatigue. I took some vitamin d a couple months ago, and I think it made my insomnia worse. Any input you can offer would be much appreciated.

  18. Jo E Reynolds says:

    Thank you for this article. I have been dealing with thyroid problems for years and yeats. My doctor keeps changing my meds and I am getting worse and worse. I am so tired, my skin is so dry I am scared ect ect. This has given me courage to try a different approch hoping I can get feeling better. I have add magnesium and feel it is helping. Again, thanks Trisha and all the others who left comments.

  19. MomGrandma says:

    Didn’t post my name as their maybe legal implications …. Thanks for the info. My daughter had a deadly botched delivery. One twin lived & is 9 months old. She has gained extreme amount of weight. She is getting blood tests on friday. Thank you for the specific information! Praying for the health of my daughter and my grandson. (We still don’t know how the extreme delivery has affected him.)

  20. Cathy S. says:

    Just found your article, I have been fighting with my doctor for a couple years about this. He only orders the TSH test. And that comes back normal. I have had both my thyroids removed due to large growths on them. I am taking Levothyroxine (.05mg.). I tired all the time, my hair is falling out (it is very thin now, almost bald in the crown), my skin is very dry, I am having a very very hard time losing any weight (I had a gastric bypass in 2000, and did not lose that much weight), I feel lousy all the time. I am making an appointment with my doctor and requesting the tests that you mentioned in your article. Hopefully this will get him to listen to me. Thank you for writing this article.

    • I sure hope your doctor will run some more tests. If you have no thyroid at all it is SO important for you to be regulated well. You may also consider asking about switching from the synthetic T4-only thyroid to a natural desicated thyroid like NatureThroid or Armour (I currently take NatureThroid because the new formulation of Armour doesn’t seem to work as well for me). Anyhow, these thyroid replacements more naturally mimic your own thyroid because they also contain T3 in them along with the T4. Many people have much better results on these medications, but everyone is individual and will see different results.

      If your doctor is not willing to run these tests and/or consider different medication options I’d HIGHLY suggest you begin looking for a new doctor. Do not forget that your doctor works for YOU. I’ve written a couple of posts on this topic you may want to read.
      • 5 Questions You Need to Ask Your Doctor (here on Whole New Mom) http://wholenewmom.com/health-concerns/got-hypothyroidism-5-questions-need-ask-doctor/
      • 3 Steps to finding an Awesome Doctor to Treat Hypothyroidism (on my own site) http://www.intoxicatedonlife.com/2014/02/27/3-tips-finding-awesome-thyroid-doctor/

      Let us know how it goes! I hope you’re able to get your levels in check.

  21. Jasmine says:

    I am curious. I am hypothyroid, but I recently started on Reliv, a nutritional supplement based on non-GMO soy. My Dr. Says he doesn’t believe good soy is a problem. I know everything you read says to avoid it like the plague. I don’t want to make anything worse by taking it. Does anybody know anything about Reliv or have you benefited by taking it?

    • The prevailing info out there is that soy is not a good thing for the thyroid. I have heard some say that small amts of fermented soy is OK as long as it is organic / non GMO. This isn’t medical advice but I don’t think I would do it.

      • Hi Adrienne,

        Do you live in Perth? Just wondering what doc you see for your thyroid condition?
        Anyone know where Dr Ismail is now?
        Thanks

        • I don’t. I am in the US and am consulting w/ a natural practitioner via Skype and email. I do not know who Dr. Ismail is. I am happy to give you my practitioner’s info if you would like to email me. Thanks. wholenewmom at gmail.

  22. I just talked to my doctor and found out that, ever since I was diagnosed with hypothyroidism 9+ years ago he has NEVER tested me for anything but TSH. When I asked him why he never did the other tests he told me the answers I’d get from t3 and t4 tests would have a range that would be too wide in scope and that the TPO and TgAb don’t apply to hypothyroidism-only to hypErthyroidism. Then when I asked about Vitamin D he told me everybody generally has low D levels and we should all take Vitamin D daily. (I do know that he tested my cholesterol… for whatever that’s worth.) Does anybody know if any of these responses are even remotely accurate? I haven’t done much reading about the tests yet so I feel like some support would really help. :)
    Thanks

    • I can’t medically advise, but that sounds very odd to me. Why would antibodies to your thyroid only apply to hyper and not hypo? Has he heard of Hashimotos? I was told to be careful about vitamin D b/c it can affect Mg and Ca levels so I am going to try getting outside more and working on my gut health rather than taking D – we’ll see. Cholesterol is important from what I have heard b/c you need it to make hormones. Mine was apparently too low. I would be happy to tell you the email of the lady I am working with. I am hopeful – my antibodies have dropped to almost normal levels but I have a way to go on all of it.

  23. Great post! I am linking up to it in my post that will go live tomorrow. I had been telling my doctors for years that I thought I had a thyroid problem but they only ran a TSH, which was normal. I went to a naturopath last week who looked at my symptoms and said “you have a weak thyroid.” It took her two seconds to identify what doctors never would.

  24. I have been diagnosed with hypothyroid for years. The first time at 30. I am now 57. I was at the boarder. But I listened to them and started sythoid. I gain so much wieght. So I quit. I lost wieght. Hmmm. Over the years at a physical they tell me to take thyroid meds. I tell them no. I gain wieght. And they all say. No you loose weight. No. So not true. And again list last month. I listened to them again. Started Levon…. Sythoid. I have already started gaining wieght. In one month. I work out. 1.5 hours hard almost every day. I should not gain wieght. I eat super healthy. No gluten. ( almost none ). No sugar no proceeded anything. Only fresh foods.
    So anyway. I quit the medicine. I will be adding. D and magnesium and iodine. Anything else I can do to take care of this naturally. I just hate doctors. Why can’t they just listen to us. I do know my body better than they do.
    Whoo got that off my chest Thanks for any good advice.
    Anyone one gain wieght from the synthetic thyroid ??

  25. I’m 39 years old and for about a two years now I have felt like im 20 years older. I have every symtom of an underactive thyroid and my doctor say blood test come back in normal range.. It is getting so hard to live like this. I always feel tired gain weight , went from 140lbs to 200lbs. what seemed like overnight. And all i was eating was a turkey sandwich for dinner a salad fir lunch and oatmeal and toast for breakfast. I have no drive to do anything.. I have two sons 14 and 10 and i feel iam neglecting because of the way i feel… My skin feels horriable i get constapated often and the fatige is a nightmare i have no drive or ambition. So what i was wanting to kniw is for these tests do know what the numbers are for normal , below ranges are?
    Thank you..

    • I am not a doctor, but did your doctor test you for TPO thyroid antibodies? Have you thought about going gluten free? I can’t medically advise but gluten is often a problem with thyroid people.

  26. I have been diagnosed with hyperthyroidism and not sure why? I have multi modular goiter, I am tired all the time and the endocrine doctor shrugs me off, but the ent doc. Thinks I have hashimotos?

  27. Hi! Thanks for info! I’m from Russia and have this Hashis too! My doctor prescribed me levothyroxine. What is desiccated thyroid hormone? What medicines do you take?

  28. Debra Clark says:

    I have had cancer of the thyroid. I am always looking for more information on the thyroid because I will be on medication the rest of my life. I have to have my medication levels checked every 3 months.

  29. One answer I’ve been scouring the Internet for is how to wean off of Synthroid. I was experiencing years of symptoms related to thyroid issues, plus as a runner I was frequently carb loading and therefore eating lots of gluten, which I now know was aggravating my condition.Needless to say I began to feel exhausted, always cold, foggy headed and more. My primary care doctor, who I only see for routine physicals – took a blood sample, told me I had an autoimmune disorder and wrote me a prescription for Synthroid, 25 mcg without really telling me much about it. I read up a little on it, and was made very uneasy by it – and even with expressing my concerns to my doctor and my obgyn they both assured me its what I needed to do.

    Obviously, since I found out I was pregnant I overhauled my diet and did tons of research. Since starting Synthroid 3 years ago, I’ve stayed at the tiny “introductory” dose and have never shown need to increase the dosage – however, I haven’t felt any better either. In fact, it makes me sick to my stomach thinking of how I carried a pregnancy to term and am currently nursing a baby while taking a foreign substance. I never even take Midol or Tylenol – yet here I am using synthetic hormones!

    I refuse to believe that its impossible to wean off of this drug once you’ve started it. Especially since its such a low dose…can you direct me to any sort of guidance in this manner? Naturally I’m afraid of the consequences of stopping the drug, but I wonder if giving up gluten and continuing my regimen of quality nutrients and fats like coconut oil, avocado, etc would take care of the issue?

    • I weaned myself off by gradually reducing the dose but I wouldn’t do so again without the consent of my physician. Of course you would try other physicians to see what they say. Now I am still dealing w/ thyroid issues but I have not been prescribed the hormones. Hoping to continue getting better.