5 reasons conventional doctors can’t fix your thyroid

5 reasons doctors can't fix your thyroid

Why did I create Hypothyroid Mom?

I have spent countless hours over the last 5 years pouring over published studies on hypothyroidism. I have scoured the Internet every day searching for the very best thyroid experts and doctors. I have answered email after email and social media comments and posts from people struggling with hypothyroidism at all hours of the day and night. I have devoted my life to this blog that I created called Hypothyroid Mom. And you may wonder. Why?

Rage.

Yes I said rage.

On a cold, snowy day in New York City on January 20, 2009, I lay on a medical exam table on what would be one of the worst days of my life. I had miscarried at 12 weeks and was being prepared for a D&C, a surgical procedure to remove my baby. A technician had just taken an ultrasound and walked out of the room to reconfirm to the medical staff that my fetus had no heartbeat. I sprang off my bed and ran to the image on the screen. I felt my body shake and my fists clench as I stared at the image of my unborn child. From a place deep in my soul came a wail, “What happened to my child?”

I had unnecessarily lost my unborn baby all because my doctors had not read the Endocrine Society guidelines for pregnancy. Yes. Seriously. A TSH of less than 2.5 in the first trimester was clearly stated in the 2007 guidelines and mine was close to a whopping 10.0 with raging symptoms.

Why had I trusted my conventional doctors to have the answers?

Why had I not done my own research and been my own advocate?

Why had I not told my doctors to go to hell when they insisted that my symptoms were all in my head?

I should have fought like a ferocious lion for my child.

And I have to live with that regret for the rest of my life.

I will tell others.

I promised myself as I lay on that medical exam table.

I will let the world know.

I promised.

And Hypothyroid Mom was born.

I was determined to get to the bottom of this. I wouldn’t rest until I got myself well again and all my Hypothyroid Mom followers with me.

I searched high and low for thyroid experts when I first created Hypothyroid Mom in 2012. At that time there weren’t as many health experts and doctors writing about thyroid as there are today. I had to really search for the best information and I struck gold when I landed on this man.

Chris Kresser.

I hope he knows how many people he has helped. Including me.

I recently had a chance to connect with Chris and ask him some of my lingering thyroid questions. I know there is much written about thyroid but I wanted to dig deep into some of the issues that are not usually covered.

Written by Chris Kresser, M.S., L.Ac

1. The upper limit of the laboratory reference range for TSH is TOO high

Thyroid-stimulating hormone is the hormone that’s secreted by the pituitary gland, and its job is to tell the thyroid gland how much thyroid hormone to produce. The pituitary is kind of like the control tower that monitors thyroid hormone levels in the blood, and if they’re low, what it will do is produce higher amounts of TSH, or thyroid-stimulating hormone. On the other hand, if thyroid hormone levels are high in the bloodstream due to hyperthyroidism or maybe doses of thyroid medication that are too high, you’ll see TSH drop because the pituitary is naturally trying to limit the amount of thyroid hormone that’s produced by the thyroid gland.

Anytime you go to most conventional medicine physicians, and even if you just look at your lab results, you’re going to see that most commonly the reference range for TSH goes up to an acceptable limit of about 4.5.

How was the limit of 4.5 initially established?

The initial study was on the NHANES cohort, the Nurses’ Health Study. A lot of research has been done on that group, and not only did they not exclude people with undiagnosed hypothyroidism, they didn’t even exclude people with diagnosed hypothyroidism, which just seems crazy. So they took a whole bunch of people and they measured their TSH, but they included people with known and then undiagnosed hypothyroidism, which would skew the range much higher than it should be otherwise.

Then more recently, in the last 10 or 15 years, they’ve done studies where they excluded anyone with diagnosed hypothyroidism, which is just basic, but then they also used different methods of screening for hypothyroidism that didn’t involve TSH to determine whether people had undiagnosed hypothyroidism, and if they did, they excluded those people as well. And they basically found that a normal TSH for people that don’t have any thyroid problems is somewhere between 0.5 and maybe 2.2 or 2.5, depending on the study that you look at. As you can see, that’s very, very different than 4.5 being the upper end of the limit.

 Lab markers are a snapshot in time, and you never want to rely exclusively on lab markers without assessing the entire clinical picture. And that’s especially true if we see people with thyroid symptoms or symptoms that could be attributed to poor thyroid function.

2. T4 to T3 conversion problems are NOT thyroid problems

T4 is 94% of what the thyroid gland produces in terms of thyroid hormones. Then that T4 has to get converted into T3, because T4 is not very active metabolically. T3 is the thyroid hormone that really activates the cellular receptors and does everything the thyroid hormone is supposed to do. So the thyroid gland produces most of the T4, and then elsewhere—not in the thyroid gland, but elsewhere around the body like the liver and the gut—that T4 gets converted into T3, which is the active form.

What we often see is people who have either normal or low normal T4, and then they have low T3. What that indicates actually is that the thyroid gland may be functioning okay, but the conversion of T4 to T3 that’s happening all around the body is not working well. That’s a really important thing to understand. T4 to T3 conversion problems are not thyroid problems. They’re not problems with the thyroid gland. They’re problems that are caused elsewhere in the body that affect the thyroid system. They affect the cell’s ability to receive T3 thyroid hormone. They’ll manifest in hypothyroid symptoms, but they’re not actually a problem with the thyroid gland. It’s crucial to understand that, because it completely informs how we address T4 to T3 conversion problems.

For example, giving the patient a whole bunch more T4 medication is probably not a great idea in that situation, because the T4 is not being converted into T3. But that’s the standard treatment for a lot of thyroid problems, is just to give Synthroid or levothyroxine, which is a T4-based medication.

So what’s going wrong in this situation? It’s usually three primary causes: inflammation, poor gut health, and very low-carb diets.

3. Sensitivities to thyroid medication are OVERLOOKED

Another common question that is hotly debated is whether bio-identical or synthetic hormones are best. The answer is: “It depends.” In general I think bio-identical hormones are the best choice. A frequently perpetuated myth (in Synthroid marketing, for example) is that the dosages and ratio of T4:T3 in Armour aren’t consistent. Studies have shown this to be false. Armour contains a consistent dose of 38 mcg T4 and 9 mcg T3 in a ratio of 4.22:1.

However, in some cases patients do feel better with synthetic hormones. One reason for this is that a small subset of people with Hashimoto’s produce antibodies not only to their thyroid tissue (TPO and TG), but also to their own thyroid hormones (T4 and T3). These patients do worse with bio-identical sources because they increased the source of the autoimmune attack.

Another important consideration in choosing the right hormone is the fillers contained in each medication. Many popular thyroid medications contain common allergens such as cornstarch, lactose and even gluten. Most hypothyroid patients have sensitivities to gluten, and many of them also react to corn and dairy (which contains lactose).

Synthroid, which is one of the most popular medications prescribed for hypothyroidism, has both cornstarch and lactose as a filler. Cytomel, which is a popular synthetic T3 hormone, has modified food starch – which contains gluten – as a filler.

Even the natural porcine products like Armour suffer from issues with fillers. In 2008, the manufacturers of Armour reformulated the product, reducing the amount of dextrose & increasing the amount of methylcellulose in the filler. This may explain the explosion of reports by patients on internet forums and in doctor’s offices that the new form of Armour was either “miraculous” or “horrible”. Those that had sensitivities to dextrose were reacting less to the new form, and experiencing better results, while those that had sensitivities to methylcellulose were reacting more, and experiencing worse results.

The best choice in these situations is to ask your doctor to have a compounding pharmacy fill the prescription using fillers you aren’t sensitive to. Unfortunately, insurance companies sometimes refuse to cover this.

4. Studies show that 90% of people with hypothyroidism are producing antibodies to thyroid tissue

90% of people with hypothyroidism are producing antibodies to thyroid tissue. This causes the immune system to attack and destroy the thyroid, which over time causes a decline in thyroid hormone levels.This autoimmune form of hypothyroidism is called Hashimoto’s disease.

Most doctors know that the majority of hypothyroidism is an autoimmune disease. But most patients don’t. The reason doctors don’t tell their patients is simple: it doesn’t affect their treatment plan. Conventional medicine doesn’t have effective treatments for autoimmune disease.

The standard of care for a Hashimoto’s patient is to simply wait until the immune system has destroyed enough thyroid tissue to classify them as hypothyroid, and then give them thyroid hormone replacement. If they start to exhibit other symptoms commonly associated with their condition, like depression or insulin resistance, they’ll get additional drugs for those problems.

The obvious shortcoming of this approach is that it doesn’t address the underlying cause of the problem, which is the immune system attacking the thyroid gland.

What the vast majority of hypothyroidism patients need to understand is that they don’t have a problem with their thyroid, they have a problem with their immune system attacking the thyroid. This is crucial to understand, because when the immune system is out of control, it’s not only the thyroid that will be affected.

Hashimoto’s often manifests as a “polyendocrine autoimmune pattern”. This means that in addition to having antibodies to thyroid tissue, it’s not uncommon for Hashimoto’s patients to have antibodies to other tissues or enzymes as well. The most common are transglutaminase (Celiac disease), the cerebellum (neurological disorders), intrinsic factor (pernicious anemia), glutamic acid decarboxylase (anxiety/panic attacks and late onset type 1 diabetes).

5. Antibody tests are NOT reliable in diagnosing Hashimoto’s

The first-line test you do for Hashimoto’s, typically what I do, is antibodies. By antibodies, I mean thyroperoxidase and thyroglobulin antibodies, these are the two antibodies that tend to be elevated in Hashimoto’s. Thyroperoxidase is elevated a lot more often than thyroglobulin.

I know some practitioners will say anything above zero is abnormal, but I don’t actually think that’s true. A small amount of antibody production is actually not pathological or abnormal. I do use the lab range. If it’s getting close to the top of the lab range, I will definitely be paying attention, because the cutoffs are always somewhat arbitrary. They’re based on research and prospective studies, and I’ve seen some prospective studies that suggest to me that the lab range should be, perhaps, a little bit lower than it is.

The problem with thyroid antibodies is, like almost any lab test that you can mention, they’re not 100% reliable as a way of diagnosing Hashimoto’s. For example, in a study of 100 South Asian Indian people that had Hashimoto’s confirmed by histological analysis—meaning actually looking at the tissue and seeing for sure that they have Hashimoto’s—about 89% had TPO antibodies and 65% had thyroglobulin antibodies. That means that 11% of people with Hashimoto’s would have been missed if you were only looking at TPO antibodies, and a full 35% of patients with Hashimoto’s would have been missed if you were only looking at thyroglobulin antibodies. What we can say from these numbers is that anywhere between 11% and maybe 30% of patients, if you run TPO and thyroglobulin antibodies that have negative results on an antibody test, may still have Hashimoto’s, even if you run that antibody test multiple times. So that’s really important for clinicians to understand, because I’ve seen a lot of patients who’ve been to the doctor a few times before they came to see me. They said, “No, I don’t have Hashimoto’s. I had an antibody test, and it was negative.” Well, you can’t really conclusively rule it out just from an antibody test or two.

I always recommend that people do two to three tests over time at least, to see if we can catch it. And I have seen that with patients, where they’ve come and they’ve had one or two negative tests. I test them a third or fourth time, and we catch the antibodies elevated on the third or fourth time.”

About Chris Kresser

Chris Kresser is a globally recognized leader in the fields of Paleo nutrition, and functional and integrative medicine. He is the creator of Chris Kresser [dot] com, one of the top natural health sites in the world.

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About Dana Trentini

Dana Trentini founded Hypothyroid Mom October 2012 in memory of the unborn baby she lost to hypothyroidism. This is for informational purposes only and should not be considered a substitute for consulting your physician regarding medical advice pertaining to your health. Hypothyroid Mom includes affiliate links including the Amazon Services LLC Associates Program.

Comments

  1. I was diagnosed with Hashimoto’s at the age of 12 but my mother refused to get my prescription for Synthesis because she didn’t want me to take it for some unknown reason. She, herself, had Hashimoto’s, so I never understood it. Anyway, I was exhausted and suffered from depression and anxiety for many years until I finally developed a large goiter when I was in college. (I was also unable to get warm. I slept in a winter coat in an arctic sleeping bag under my bed covers, with the heater on in the summer). I could barely swallow. I went to an endocrinologist and he did blood tests and called me to tell me my tsh levels was through the roof. He said I must have been feeling worse than I thought I was. I have on Levothyroxine for 30 years and have had the dose adjusted from 150mcg – 200mcg. I am angry that I had to suffer for so many years for no good reason. (We had health insurance). Now I have much more energy, though I still struggle with my weight.

  2. Kristine B says

    I diagnosed myself 7 years after a very tough pregnancy, and it turns out, MY THROID was the reason.
    I have since gone through 3 endocrinologists and am finally feeling like a human being.
    The combination of Synthroid 88mcg plus 5mcg of Cytomel made all the difference.
    I had a miscarriage and my son now, has ADHD because I had not yet been diagnosed.
    NO thyroid test is ordered when you begin pregnancy and I do not understand why that is since it is so important to the health of the baby.
    I got my period 4 weeks after giving birth, while NURSING!
    I had vomited morning, noon and night during the first 3 months, yet I gained so much weight! All the male OBGYN said was “stop eating burger king.”
    I do not eat “fast food” and I was appalled at the arrogance of this physician.

    Thank you for this article.

  3. nancy kelly says

    related to this article – how do you treat the issues related to item two in this article? I suspect that is the basis of my issues but can’t find a doc that gets the bigger picture! thanks

    • My gen practitioner put me on NP Thyroid because it has higher dosages of T3. The biggest changes tho, still only happened after going to a functional medicine practitioner.

  4. Rachel Reyes says

    Hello everyone reading I hope I get some answers or help someone else . I was trying to get pregnant about 3 yrs ago not sure if I did but that month I had a really bad period . I was dizzy , fever to 103 , heavy period , and lower stomach was sensitive to touch . After that I felt like crap for about two months and at that second month I had to go to the doctor because I couldn’t even stand or focus . The doctor check my blood and said that my thyroid was unleveled and I needed iron pills . I started taking levothyroxine at a low dose of 25 m and it started giving me bad side effects that lasted for a year , i was in bed. I changed to synthroid same dosage and I got my life back for a few months but I would have bad brain fog at times and would get anxious . Right now I’m taking half of the 25 m pill and the brain fog is gone but I get irritability and I get scared thinking I’m going to have a panic attack and I start to panic about it . I’ve noticed it happens around my period before , during and after . I’m going to see a gynaecologist Tuesday to check all my hormones levels and I hope I get results because I’m so tired of not being able to live my life and stuck in the bed .

  5. Hi my name is Alida and I have a goiter .
    My Thyroid shows all normal but it stays
    Swollen . It is now more than a year , I had sonars done every 6 months , somedays it is more swollen then other.

  6. Is there any chance you could please give more information to those of us that do not have a thyroid gland at all now. Mine was removed because l had 18 nodules …the largest one was poking out the side of my neck. Also my windpipe was squashed so l wasn’t breathing too well at night. l have struggled since 2012 without the gland and have weight problems and over heating all the time. amongst other issues. Can you give us any findings on studies done after removal of the gland.Thank you

    • I’m in the same boat. Seems most articles are for.people with a thyroid. I had a total thyroidectomy in 2016. Have struggled with weight since then.

  7. I don’t see where you mention the 24 hour urine test for diagnosis. That’s how my low thyroid was caught. Was started on Armour and it was literally, like night and day for me. I couldn’t get out of bed in the morning before that. Felt drugged until about 11 am everyday. After my first week on Armour, I called my new functional medicine dr, to tell him it worked, I was crying. Blood tests never picked up my low levels. Now on Armour, my blood tests are always still in normal range. I do well on the lowest dose! I was lucky to find a doctor, after years of complaining, who reads and doesn’t just do what mainstream medicine says. All the other endocrinologists were like, “sorry, you’re normal, it’s not your thyroid. Too bad, suck it up, buh-bye”.

    • I also take Iodoral iodine, every other day. I did get some hives on liquid Iodine. No problems on Iodoral.

  8. Interesting! My doctor wanted me to take an iodine supplement due to my TSH being 2.26. I am frequently fatigued, don’t sleep well, and have achy muscles and joints so I thought I would try them. Now I’m wondering if I should stop since my levels don’t seem off at all. I’m also 49 so there could be some hormonal issues.

    • Alison Hillier says

      I was diagnosed with thyroiditis which continued a long time, eventually the consultant arranged for me to have my thyroid removed. But I’m still feeling ill, with flu like symptoms daily and night sweats, joint pain now is a new symptom and I wake feeling awful every morning. I’m on 75mcg thyroxine and they say my thyroid levels are fine. Originally on being diagnosed my thyroid perioxidase antibodies were 1300, and I keep asking them to re check but they will not!! I’m sure me feeling so poorly is something to do with the very high antibodies. They are now testing for lots of other things including sarcoidosis!! 3 years this has been and I’m exhausted in fighting it constantly!!

      • brenda foster says

        test your RT3 along with Ft3 FT4 & tsh & join the TAWKI group. they have tons of great info & of great help.

  9. My daughter was diagnosed with hypothyroidism at age 12. I had taken her in three times and doctors refused to do lab work. I took her back when she was so tired, she couldn’t even climb the stairs to her room. I demanded a blood test. They discovered the hypothyroidism and sent us with an RX of levothyroxin, and repeated blood tests every three months until her levels “normalized.” I am new to this. I feel like it’s a guessing game on how she feels day to day and is now having a ton of stomach issues that led us to an endoscopy, showing inflammation in her stomach (not celiacs – they tested). I am wondering if the medicine could cause this? I wish there were a more natural option for her. Anybody have any advice? Her skin gets red patches and she misses so much school with the stomach issues. So frustrating! Any help is appreciated!

    • Hello, I feel like you just described what I went through as a child. I was constantly in trouble at school for falling asleep at my desk until my mom demanded a blood test. My levels were so high I was hospitalized.
      I am 55 now and struggled all my life with this. I have full-blown Hashimoto’s disease and all I get from my doctors said is “well most hypothyroid sufferers end up with Hashimoto’s. There’s really nothing you can do but take your Synthroid “. My hair is extremely thin and even when I am on a 1000 cal diet I cannot seem to lose weight. I recently read up on how to treat auto immune disease and have started staying away from lectins, glutens, soy, and foods that might contain these items that animals might have eaten such as dairy. I find I feel a little better and I sure wish I would’ve known this back when I was 12 years old. Start looking for a doctor to treat her for an auto immune disorder and you will probably do much more good for her in the long run.

    • Jennifer K Blanchard says

      I have been taking Armour Thyroid for 10 years and while I still have some bouts with tiredness I don’t have nearly the side affects I read about other people having on the synthetic thyroid. You have to tell the Dr. you want Armour because they will NOT write it if you don’t tell them to. My Dr. still tries to make me switch every year and I refuse.

    • Hi Alena.
      my daughter was also diagnosed around this age after being undiagnosed for a very long time. She was a very unwell little girl. Extreme Pain in the stomach with bouts of diarrhoea was an intermittent symptom she suffers. She is now 23 and can link this (mostly) to her stress levels and anxiety. It has taken many years for her to stabilise her hashimotos but what has helped her a lot is the correct anxiety/depression medication, seeing a psychiatrist and being on the contraceptive pill. It seems the stronger / stable she is psychologically she is the better she is physically. It has taken quite a few years for her body to develop and adjust but I think the further away from puberty she got the better she is.

      • Linda moon says

        I take the minimum 20 mg Lexpro with my 1 mg hormone pill and I feel leveled. Also 50 mg for levothyroxine. Lexpro needs to be researched with your doctor. I am just suggesting it. It worked for me. Lexpro is great for anxiety and depression. My symptoms are worse at the time of my menstrual. I truly believe it is the change in the hormones. I am 49 and take 1 mg of estrogen for menopause. I have trialed and error but like I said see what your doctor thinks. I wanted to share to make a suggestion only. Once again tell you endocrinologist all your symptoms and try to treat each one. Feel better.

  10. I have high tsh is started at a level of 26. I was put on synthroid and it went down to 4 but then spiked to 39. I am on 200mcg of synthroid and my tsh level is still high.
    I am infertile and after several doctors I can not get my level to go down.
    Any advice ?

    • Make sure when they check her thyroid they do a T3 AND T4 NOT JUST A TSH. I HAD AN AREA ON MY SKIN WHETE THE SKIN WAS HURTING AND I MEAN REALLY HURTING . I USE JOSIE MARAN ARGON OIL ALSO AT QVC.COM. IT DOESNOT HAVE ALCHOHOL IN IT AND IT REALLY WORKS YOU USE EVERY DAY ALL OVER YOUR BODY FOR 2 WEEKS AND THEN EVERY OTHER DAY. QVC.COM HAS BETTER PRICES. IT IS VERY IMPORTANT THEY DO A T3 ANDT4. MY SON IN LAWS BLOOD WORK WAS FINE THEY ONLY DID A TSH HE THIUGHT HE HAD PNEUMONIA WENT TO ER FOR XRAY. LONG STORY SHORT HE WENT TO CLEVELAND CLINIC BECAUSE THEY WEREN’T SURE WHAT KIND OF CANCER HE HAD. HE HAD STAGE 4 MEDULLARY THYRIOD CANCER A TUMOR ON HIS LL LUNG AND IT WAS REMOVED THEY REMOVED HIS LYMPH NOTES ON LEFT SIDE. TODAY HE HAS BEEN CANCER FREE 4 YEARS.

      • Linda moon says

        I am glad to hear he is better. It is so scary how you can have such a scary condition and the doctor not pick up on it . Stage four and it did not show before then? Bless him. I use the Argon Jose oil lotion too and it worth every penny for cost. I have severe dry thyroid, menopause skin and this product is the answer to feeing like beautiful skin again. I order and break down payment through QVC too.

    • Victoria N. says

      Test Free T3 and Free T4. I bet one or both are low.

  11. Thank you so much for all of your advice. I read your book over the past year as I prepared to conceive with hypothyroidism. I was diagnosed with hoshimoto hypothyroidism at age 12 and fertility was on my mind way before I was ever thinking of starting a family. I found your book very informative and helpful. I found a new doctor at an integrative medicine family practice who is very thorough. We got my tsh down to 0.2 and added in cytomil. I was already eating gluten free for many years. I read your recommendations for ingredients in prenatals and my new doctor approved. I got pregnant the first month of trying which was amazing. We saw baby’s heart beat at 7 weeks but when I went back a week and a half later (1 week ago tomorrow) baby had barely grown and the heartbeat was gone. Our world shattered. I feel like the cause of miscarriage was likely something different from thyroid but the one thing still lingering in my mind is my antibody levels. My TG Ab antobody levels prior to pregnancy were at 15. I was worried that they were above the recommended window in the lab notes. 8 weeks into pregnancy they were down at 9. (My other type of antibody, I cant think of the name,was at 0 or 1 and is not a concern). I went back to your book and I’ve decided to add in 100 selenium with my doctors approval to hopefully help these levels prior to my next pregnancy. My question is, do you think my antibody levels were a possible contributing factor to my miscarriage?

    It is worth noting that I am more concerned about a dip in my progesterone from 27 at week 4 to 14 at week 8. And of course it could have been many things. Including chromosomal abnormalities.

    I know that I may never truly know why but I am trying to do everything I can to make sure I’m identifying any possible sources of problems in my body.

  12. Thank you for sharing this information.

  13. My thyroid panel still looks great, with a TSH of 0.9, and my ft3 and ft4 within range, but my thyroglobulin antibodies are over 70 when the normal range is under 20. My doctor keeps telling me that means nothing, even though my thyroid is swelling. Should I start Hashimoto’s prevention protocols?

  14. I had a hysterectomy 10 years ago, my thyroid stop working been under levothyroidzine and gain too much weight they can not seem to fix me I’m t3 t4.
    I am depressed , anxious, with panic attacks

  15. Sorry to hear about what you went through!! You are a true warrior! 💜 we need more people like you! Not related to this particular article but Just wanted to share that I am very grateful to have found Anthony William who wrote 4 books including Thyroid Healing!! A must for everyone searching for the truth!! Look him up his information is priceless!! Much love to all of you! 💜

  16. Found out I have hosi’s when being treated for over a year for Lyme disease. Went to endo and was put on levo. My tsh went from 96 to 3.35 T4 is now at 1.19. Told everything looks good. I feel better than I did but still really tired at times hair is not falling out as much but very dry. Crepe skin and lots of joint pain and depression better but still there Asked to have t3 and rt3 checked. Nurse prsctioner made an ass out of me and told me it is stupid to check those numbers. She got me mad so I insisted on it. Free t3 is 2.9 T3r is 20. Of course since they didn’ want to run these test she will not say if numbers are good or bad. Told her I’m still have symptoms she said it probably the lymes. Told her according to thyroid asdoc my tsh is still high she said not for my age (will be 60 soon,) Theyvdo not wantbto damage my heart. I’m so tired of fighting drs. Between the Lyme’s the hosi”s and anything else that pops up. My GP is finally taking me more serious with my joint pain and feeling like crap most of the time, since she has been diagnosed with hosis and other autoamune issues. Its a shame that they think its in your head until they have it. So tired and defeated.

  17. Erica Easley says

    Diagnosed with Hashi’s a few years ago. Was on Nature-throid (sp) for quite some time, but never felt any better with it and stopped taking it. More because I forgot and then time went by, we all know how that goes. But TSH always “in range” in the 3’s.

    Fast forward to a couple of weeks ago. Started feeling weird, super nervous in the pit of my stomach, exhaustion hitting an all time high. Then Monday was having chest tightness and throat constriction and ended up in the ER. Had mentioned the Hashi’s so they ran the TSH. It was 80 (not a typo). I was admitted. They were looking for something called a thyroid storm, which apparently I was not having (thank God, I googled and that did not look like fun). So after 24 hours of monitoring my heart, they put me on 150mg of levothyroxine for right now and a follow up appointment in a couple of weeks. They want to do scans and biopsies and all of that.

    I’m freaking terrified. They were trying to get an endocrinologist in to see me, but couldn’t. Then the doctors said to just come and see them, they could handle it just as well without the 3 month wait for an appointment. I prefer the idea of a more functional doctor, but that didn’t seem to do much good the last time. So I don’t know what is the right answer here.

    I know nobody can give me a true answer, but a directional pointer would be greatly appreciated.

    • I wish they would of admitted me in 2009 when my TSH was 98.9 but they just kept sending me home telling me to take the Levo that made my skin craw. Just keep taking the meds your TSH will
      Lower in the meantime while you wait for the endo. Is terrifying but you’re going to be ok.

  18. Angelica says

    I was taking armor thyroid medicine and went back to levothyroxine. My doctor does not handle armor thyroid and she told me that my auto immune is attacking my thyroid. I dont know if to go back to armor or to stay on levothyroxine. Can you please give me some advice?

  19. Pamela Grissinger says

    I went into OB looking for help with my heavy periods, so because of my age she ran blood work an ultrasound then uterine biopsy, last but not leading a thyroid blood work too
    TSH Level was 16.9
    After googling thyroid symptoms and issues
    I see why I had three miscarriages in the past two years , this truly saddened me to know they were preventable
    Heading to family Dr tomorrow
    Scared of how to face this issue
    So Glad to have found you and your amazing insight, wish me Luck tomorrow

    • Hi Pamela, This is Dana Trentini from Hypothyroid Mom. I am very sorry to hear about your miscarriages. The very reason that I started Hypothyroid Mom was because I unnecessarily miscarried my baby because my doctors did not read the guidelines set by the Endocrine Society for pregnancy with thyroid disease. I wrote a book all about this so that every woman with thyroid disease will know the thyroid lab tests, ranges, medications, supplements, dietary changes, and more to have miracle babies. It can be found at Amazon titled “Your Healthy Pregnancy with Thyroid Disease”.

  20. Hello to all,
    I have been on Thyriod replacement for 38 years.
    I thought I had mono when I went to the Dr to find out what was making me so tired and I was gaining weight for no reason. I did not eat sugars or bread much.
    Once I found the problem my life has changed and I was able to conceive my daughter. She is being tested now but I am sure she will show the same condition I have. It’sa combination of both conditions Hoshomotes and Graves. My Thyriod decided to stop working and began to push itself so that it looked like my problem was non existent. I am so thankful for the Dr. In Decatur GA who went the distance and two weeks after blood work and her review she told me my Thyriod has stoped producing.
    After just two weeks on Armor Thyriod I was completely better. I have been on levotheiod because the Dr says it is more reliable in dosage.
    I still have to tell my Primary Care Physican every year to run the complete profile or they will call me saying I don’t need my meds any more. Be your own advocate and teach your family to do the same! Your life dependents on it

  21. I can’t believe how similar our stories are. I am so sorry for your loss. And great job informing yourself and taking over your own health. Your are doing a great job sharing information with others. Knowledge is power!

  22. I’ve been on LDN for a year, my numbers are still high,in particular my cardiac AB are high and that is scary that my body is attacking my heart. At what point do I encorporate both an endocrinologist and a nature path together to try and get this under control

    • Hi Jessica, Given that you are talking about heart issues, I would personally seek multiple medical opinions from different points of view to hear all the possible alternatives. Good to have you at Hypothyroid Mom.

  23. Sandy Wilson says

    My labs always show low T3. I’ve tried every form of T3 available and I get horrible insomnia. Even at low doses. I’m so tired of being tired and not doing the things I love. I can only tolerate synthroid. Any insight?

    • Hi Sandy, There are three common reasons why some people react poorly to T3 medications that you should look into. First, if I take my T3 medications too close to the late afternoon, I can’t sleep. I take mine no later than 2pm. The other two things to have your doctor check: your adrenals (saliva testing to measure cortisol) and full iron panel. Good to have you at Hypothyroid Mom.

  24. i was diagnosed on my 50th birthday with hasimoto…I was put in the hospital also with fatty liver disease…i spent 3 weeks being poked and prodded…mri scans..i hated it…they finally put me on levothroid…1.5 mg..the doctor says im doing fine according to the tests…but i feel lethargic all the time…had to go on disability which pays very little…i watch and read all kinds of articles and tv shows for answers…i want my life back….but for guy its a slow process..any tips how to deal with my situation would be appreciated…

  25. I bought a book by the Medical Medium, Anthony William on Thyroid and he explains that your thyroid is being attacked by the EBV (Epstein-Barr virus) at some point that entered your body. he recommends to cut out wheat gluten, dairy (especially eggs), pork, canola oil, corn and soy. Also recommends getting tested or thyroid anitibodies (TPO). thyroid meds don’t heal thyroid, they help with symptoms we all have here. I am going to try to detox the heavy metals and all other impurities via special juices added to my diet in the book and we shall see. It’s a good read.

    • Ellen-Sue Diamant says

      I’ve had Hashimoto’s that originally presented as just hypothyroid as that’s all that was tested since 1989 after the birth of my second child. It wasn’t diagnosed till 2014 (via lab tests for antibodies etc.) when my weight went up suddenly, hair fell out section by section till nearly bald let alone all over my body, fatigue, brain fog and insomnia (since 2006). Doctors said it was probably ‘just’ perimenopause. Anyway, I’ve done EVERYTHING suggested in all the providers books, including the Medical Medium, Wentz, Dr K etc. Even went off wheat/eggs/gluten/dairy for a year w/o improvement- in fact, my antibodies ALL increased! The latest ‘fad’ in thyroid treatment is to just use T3, one reason being that T4 is converting to reveres T3 now. My antibodies remain about the same. I dutifully take all the supplements, get in daily hikes/light snowshoes/walks but only for 45-60 minutes due to my severe spinal stenosis which got worse from a 2014 fall (originally fell and hurt my lower back in 1972), and only eat up to 100 whole grain carbs a day and 1 apple to control blood sugars, and eat healthy fats like avocado/olive oil. I do not eat the typical SAD and haven’t since 1973. I’ve had toxins tested etc. I’ve had mold tested. I’ve even spent hundreds on Lyme testing (came out negative). So my latest naturopath and I are working on titrating a good enough dose of T3 for me, bit by bit as trying plain T3 at 25 mcg alone 2x a day produced adverse symptoms within a few days- like feeling like I was on speed and kept me awake for a few days. I’ve also done adrenal testing (blood and saliva which conflict in results) and am now titrating cortisol. I had to retire from work early at 61 2 years ago and forgo getting full social security and am in the very long process of applying for SSI, being rejected twice already (which is typical). My actual in person hearing is this July. The additional $300/400 a month would really help me afford my T3, cortisol, and acupuncture, which insurance doesn’t cover. Next year I’ll be 64 and Medicare doesn’t cover acupuncture. Without acupuncture, I wouldn’t be walking as the pain is referred pain down the back thighs. I can’t sit/stand for more than 30 minutes at a time. Getting to medical appointments ( 1 1/2 hr drive each way) is very difficult and my husband always has to drive as I never know when a stabbing muscle pain will hit. So, does ANYONE have any other concrete suggestions? At this time, I spend 7 hours sleeping at night (finally!), 2-3 hours napping nearly every afternoon as my brain literally shuts down (whether or not I do my hike/snowshoe that morning or not), and spend 15 hours of the 24 flat reading or watching TV these past 3 years and I’ve NEVER been a big TV watcher!

  26. If my thyroid was removed and I have Hashomotos what is being attacked.

    • Read Chris Kresser’s information on ‘polyedocrine’ dysfunction and the fact Hashi’s is an immune system disorder NOT a thyroid disorder.

  27. Brenda Andreani says

    Hi,I’d like to know what being on a low carb diet has to do with hypothyroidism please?I have had my thyroid removed because of cancer and am on thyroxine replacement.My doctor keeps telling me to lower my dose because of the lab results for the tsh , but I feel great where they are.Mystery?This is the first time I have heard of this.I hope my question is not too hard for you

  28. Brenda Andreani says

    Hi,I’d like to know what being on a low carb diet has to do with hypothyroidism please?I have had my thyroid removed because of cancer and am on thyroxine replacement.My doctor keeps telling me to lower my dose because of the lab results for the tsh , but I feel great where they are.Mystery?

    • I’m curious about this, as well. I did low carb for years and I wonder if the diet could have caused my current problems?

  29. Hi. I have Hashimoto disease. My doctor recommended I remove gluten from my diet and he prescribed a diabetic medication called Metformin. My systems were very much like others, tired all the time, gaining weight a a rapid pace, Hot flashes, hard time falling g asleep, etc. Have you heard of anyone taking this drug before? I did cut out gluten and dairy. I just want to have my life back!

  30. I was diagnosed with Hashimoto’s 2 years ago and finally found relief with Armour Thyroid and a bevy of supplements. However, over a 5-year period, I’ve lost 2/3s length of my hair with absolutely no new growth. The condition of the hair is good, just breakage and no growth. Iron, biotin, zinc, selenium, hair vitamins have had no effect.
    I could use help from Dana and this community. Thanks.

  31. My thyroid was removed over a year ago and my TSH level/value is 9.66. What should I do to bring this level down. I have tried Synthroid, Levothyroxine and am now taking Armour Thyroid. Please help!

  32. My daughter has Hashimoto’s Thyroiditis and remains symptomatic. In the Uk people have to wait until their TSH levels are at 10 and the Thyroid almost destroyed before treatment starts with T4. My daughter has the most common symptoms and yet, Doctors and Endocrinologists ignore this and continue with T4 because: There is no medical evidence that T3 or NDT works. If anyone has been prescribed T3 or NDT and they feel better it is a placebo effect and wishful thinking. Remaining unwell and getting worse on T mono-therapy means a) the patient is not taking the medication or b) due to non-absorption. If it is non-absorption it is just one of those things and continue as usual with T4 only,but more likely the patient is in denial and not complying etc……
    Unless one can afford the prohibitive cost of private treatment one is at the mercy of the medical profession. Private Health insurance is not available because my daughter’s TSH levels are not stable. Angry, frustrated and frightened at the likely outcome -watching my daughter deteriorate week by week and unable to do anything about it. Dietary changes and vitamin supplements etc have made no difference because she has a faulty gene and is unable to convert T4 into enough T3. I contacted politicians, newspapers and TV all to no avail. Not even the courtesy of an acknowledgment. Hypothyroid patients are viewed as disposable.

    • Kate, I’m always so sad reading the experiences of hypothyroid people around the world receiving suboptimal care. Proper thyroid testing and treatment should not require us to dish out hard earned money from our pockets to pay for private care. This is a topic I think about writing at Hypothyroid Mom all the time. It should all be part of routine testing and treatment in mainstream medicine. I share your frustration.

    • Join Thyroid UK and look at their forum on Health Unlocked. It is fantastic with loads of information. It looks like your daughter will have to self medicate, like a lot of us Hashi people have to do. It’s easy and cheap. The Paleo Autoimmune Protocol is a tried and tested way of dealing with autoimmune disease. There are solutions out there. Don’t rely on conventional medicine. It’ll get you nowhere.

  33. Sheryl Olson says

    Hi,
    Hi have been struggling with debilitating nausea for 2 years. My thyroid has not been regulated since 2006. I was diagnosed with Hashimoto’s/Hypothyroid. I take Tirosint I n the morning with Cytomel and Cytomel at bedtime. I think my nausea is thyroid related. Is this true?

  34. Jean Aitken says

    Anyone help with my latest blood results please
    TSH. 2.34
    T4 Total. 77.0
    Free T4. 14.20
    Free T3. 4.55
    All normal acc to range
    Ferritin. 158.0
    High acc to range
    TPO ABS 294.0
    TGB ABS. 140
    Both high acc to range
    Vit D. 44
    Low acc to range

    • Sara Blazo says

      Looks like Hasimotos to me!!!

    • TSH should be below 1. Are you being treated? T4 and T3 look low in range, but without the ranges, it is difficult to assess. Try giving up gluten and dairy for a month to see if you feel better. I follow the Paleo Autoimmune Protocol which has been miraculous. There is lots of information about it on the web and of course. Paleo Mom is fab!

  35. Lori Ramirez says

    Anyone know if a good dr in the Houston/ League City area? I have just been using my gp.

  36. Thank you for your site. I have finally found me an endocrinologist that is worth anything. I’m on week one of my new meds and I feel great. Better then I have. And I got my diagnosis of hashimotos disease after 12 years of living with this disease. Of course, I used to be a size two and now I’m far from it, but I hope that changes with this new medicine or at least gives me some energy to work with to start working out again. This is the first time my attitude has been positive in the way that I feel. I love the article.

  37. Renee Weathers says

    My TSH W/RFX to free T4 is 5.690

    Thyroxine,Free (FT4) is 1.24
    What does this mean ?

    I am more depressed than normal and can’t seem to shake it off.

    • In my opinion, it is very likely (80-90%) you have hypothyroidism with 90% probability Hashimoto is the cause. Again, in my own opinion, with a high TSH of 5.69 I would expect your T4 to be low (closer to 1.0) but it isn’t so something is most likely not right. I would demand a full Thyroid Panel (TSH, T4, T3, REVERSE T3, TPO&ATG antibodies) to confirm my opinion.

  38. I have had Hashi for years and cannot find a doctor who is willing to do T3 or LDN. Have ALL the symptoms and looking for answers. Do supplements of Selenium, Iodine, a couple of others, glutathione and looking for Catalase. Any words of wisdom ?

    • Call pharmacies in your area and ask what docs prescribe those things. There are a number of great facebook (of all places) groups for thyroid and LDN and you can ask for recommendations there. I get my LDN from Belmar in Colorado. You could probably call them and ask who prescribes in your area.

      Don’t give up! After 3 years of being very ill, T3 changed my life.

  39. Anonymous says

    Dana, your story is so touching and infuriating. I am so sorry for your loss. I can’t even imagine how that must have felt, and how it continues to make you feel. Thank you so much for sharing and for your devotion to your cause. You have helped me and countless others. ❤

    • Thank you so much. Hypothyroid Mom has healed the pain I felt from unnecessarily losing my child. A wonderful thing has come out of a terrible loss. I know my child watches over me when I work on articles and answer comments like yours. Wonderful to have you here.

      • Rose Dandaro says

        HI Dana,
        I discovered I was suffering from Hashimoto in 2012, but having symptons since 2006. However, no treatment from convenctional doctors until 2017… I went through a lot and visited many endocrinologists that in my opinion shouldn’t be doctors at all.. I just got help when I found your blog and discovered the tests I should request and the right questions to ask and how to convince my current doctor the improtance of these tests to help me heal… You helped me so much, and if I am feeling much better now is the result of your articles in this blog . Huge Thanks.

  40. debbie campbell says

    at what stage do you recommend iodine testing for thyroid symptoms? Before or after starting thyroid medications?

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