Dr. Izabella Wentz, PharmD

Thyroid Pharmacist

Why Thyroid Patients Need Change

Why Thyroid Patients Need Change

Medically reviewed and written by Izabella Wentz, PharmD, FASCP on February 4, 2015

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My Top 3 Reasons

I am Izabella Wentz, a pharmacist, Hashimoto’s patient, and author. I believe that thyroid patients are not getting the treatment and attention they deserve from the medical community.

There are three major issues that I see: diagnosis, medication management, and counseling regarding lifestyle interventions.

  1. Thyroid patients are not diagnosed appropriately. The TSH is not a reliable marker of thyroid function as it can fluctuate, especially in those with Hashimoto’s. TPO antibodies may become elevated years and sometimes even decades before a change in TSH is seen and may be associated with fatigue, recurrent miscarriages, and many other issues before the TSH becomes affected.
  2. I believe that patients should be better optimized on their medications. Just because a TSH falls within the “normal” range does not mean the medication is dosed appropriately. We need to treat the patient, not the lab values! Patient symptoms are key! As a pharmacist, I can tell you that there are many medications that have prodrugs (an inactive precursor of a drug, converted into its active form in the body by normal metabolic processes) that do not get converted to the active drugs in the body. T4, by definition, is a prodrug and does not always convert to T3! Sometimes combination medications are needed.
  3. Lifestyle interventions such as eliminating infections, addressing nutrient depletions, reducing sensitizing foods and addressing adrenal function can help reduce or eliminate autoimmunity, yet they are ignored by mainstream medicine.

Here is my story

Before I was diagnosed with subclinical hypothyroidism, I had been suffering from fatigue and quite a few digestive and allergic symptoms.

I struggled with chronic fatigue for almost eight years before I was finally diagnosed with Hashimoto’s.  I had always been an active and energetic individual, but then never seemed to have recovered from the debilitating fatigue after a mono infection during my first year in college.

This fatigue kept me from pursuing my dreams and passions in my early twenties, but eventually, I learned to compensate. I would sleep for 12 hours a night so that I could participate in my classes, study, work and enjoy a social life.

I went to numerous doctors to get checked out over the years and was diagnosed with IBS, depression, allergies, anxiety, acid reflux and told that all of my labs were normal.

After my primary care doctor said all of my tests were “normal,” I consulted with an allergist-immunologist who ran a whole slew of tests for food allergies (not intolerances), environmental allergies and autoimmune markers.

One of the tests that came up positive was Thyroid Peroxidase Antibodies (TPO Antibodies). These antibodies are positive in 95% of those with Hashimoto’s. Mine were above 2000! The normal range for that particular test should have been less than 30.

My TSH was at 4.5, which fell in the “normal” range at the time but is now known to be too high and indicative of subclinical hypothyroidism. I have a note from my physician that says: “Your thyroid function is normal. No need to do anything.”

Additionally, my blood sugar was 53, showing that I had been experiencing hypoglycemia.

The allergist told me that at one point I might be at risk of developing hypothyroidism, but not to worry about it. Instead, I was prescribed three different allergy medications and referred to a gastroenterologist who diagnosed me with acid reflux and IBS and, you guessed it, gave me more medications.

After another year of stomach issues, anxiety, fatigue (sleeping 12 hours per night), a persistent chronic cough, taking my medications as prescribed, I followed up with my primary care doctor again.

At that point, my TSH jumped to 8, which was above the reference range. I was then told that I should start thinking about thyroid hormones.

I don’t blame the doctors. They meant well and were trying to help me, but people don’t always realize what they don’t know. I also didn’t know much … I was a new grad pharmacist at the time, and although my knowledge of pharmaceutical therapies was very much current,  I knew very little about lifestyle interventions that would prevent, reduce or eliminate autoimmunity. I was surprised that there weren’t many established lifestyle interventions for my condition, so I decided to start doing some research on my own.

In a perfect world, where autoimmune thyroid conditions would be treated appropriately, this scenario would have happened instead:

  1. I would have been advised that based on my TPO antibodies, TSH and family history of thyroid disorders I was at high risk for developing hypothyroidism within the next year.
  2. I should have been started on a low dose of thyroid medication to make up for the extra demand placed on my thyroid that was leaving me exhausted.
  3. I should have been tested for food intolerances (IgA, IgG), not just food allergies (IgE) or told to follow an elimination diet for my IBS and acid reflux, which would have helped slow down or eliminate the progression of Hashimoto’s.
  4. I should have been informed about lifestyle interventions to address autoimmunity and inflammation.
  5. I should have been informed that inflammation from my thyroid, gut, and my hypoglycemia was taxing my adrenals, leading me to develop a multitude of environmental allergies.
  6. I should have been told to work on balancing my blood sugar …

My personal mission is to spread awareness about lifestyle interventions and promote further research.

The right diagnosis, the right medication, and the right lifestyle changes have made a tremendous difference in my life. I feel like I have the old me back, after almost 10 years of living in the shadow of my fullest potential.

PS. You can also download a free Thyroid Diet Guide, 10 Thyroid friendly recipes, and the Nutrient Depletions and Digestion chapter for free by going to www.thyroidpharmacist.com/gift. You will also receive occasional updates about new research, resources, giveaways and helpful information.

For future updates, make sure to follow us on Facebook!

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Comments

  1. Thank you for you article. I am also a Hashimoto patient and as you I think a holistic approach is needed for us. Very interesting!!! Best regards
    Reply

  3. Hello! I really appreciate what you are doing. I’m in the middle of reading your book and can’t get enough of all of this wonderful information. I was diagnosed 20 years ago and have been battling with ‘I take a pill but still feel like crap” and why won’t my doctors help me? Or how can I convince them I work out everyday but I’m still fat? I think I’ve been yelling HELP for so long now…I want my life back!!!! I have made huge changes…Paleo, gluten, sugar, dairy free for almost 3 months now but I still don’t see a change. Little things are happening like acid reflux, joint pain, and a tad bit more energy but I want weight lose 🙂 I have been looking for a new doctor who will take my insurance and who will allow testing for T3 & RT3 and then if I need it, will prescribe me T3 supplement. I’m a pharmacy technician and fill and sell T3 rx’s so I know its out there! I am for the ThyroidChange.org and will fight tooth and nail to see things changed so that we all can get the help and support we deserve! So thank for your experience and diagnoses because it will take more people like you, in your field, to help us all be heard!
    Reply

  4. Hi Jenny,
    Thank you for writing and it’s always so greta to hear from another health care professional, especially a fellow pharmacy professional:) I was a tech for 8 years before I became a pharmacist and very much enjoyed the work! I am glad that you are starting to see some positive changes! Keep working at it. If you do not start feeling better, I would explore additional sensitivities, the adrenals as well as your gut function. Many of us have hidden gut infections that many need to be eliminated before things start getting better. Thank you for your support and for supporting ThyroidChange.org, we need more professionals like yourself to support the mission. Wishing you all the best in your journey!
    Reply

  5. I have a thyroid condition I take 85 mg of levotyroxin I can’t loss weight ido you have any advise on how to lose weight?
    Reply

  7. Hi there, I noticed a link a friend had on her FB page and it was your page. I am so grateful for your website. I read through it and it made me teary to read that what I was feeling and that some of my symptoms were experienced by so many others including yourself.
    I have ordered your book on amazon. I was diagnosed with thyroiditis 14 years ago. After suffering for a few years and was constantly told…you have anxiety, you are peri menopausal, your thyroid tests are in normal range etc etc. I was getting symptoms of both hypo thyroid and hyper thyroid and still do on and off….I would have the palpitations sweats, anxious, couldn’t sleep, sore muscles and then I would be cold lethargic, dry skin, tired no energy, aching muscles and would put on a little weight then I would lose a little weight. I then went into menopause and some of these symptoms became worse. Its been a real rollcoaster ride. I was eventually diagnosed with hypothyroid only because my TSH went to 8. and when I had a bloodtest a year or so before that it was 5 and because it was in the normal range, they said my thyroid was OK….
    Looking back I had a flu virus that really knocked me around, had a bad throat and lost my voice and wasn’t well for a few weeks and from that point it slowly went down hill. I also have had acid reflux, and tummy probs for years before but I was told I was I had a anxious tummy and worried too much….also I don’t deal with milk very well, or soy, Regarding grains it depends on what they are, if I have spelt or a wholegrain like buckwheat, quinoa a little rye or barley or a little wholewheat Im not too bad I can have brown rice and basmati rice but if I have Pasta and long grain white rice after an hour or so I feel like I am still hungry I get the hunger sensation in my tummy and that’s not possible after you have eaten a meal so I don’t eat pasta and rice very often if at all. Mild IBS happens on and off….so in effect so many symptoms I can relate too. I try to watch how much sugar I have and it definitely has an effect on me if I have too much, Yes I do take thyroid meds and I started with 50mg and I now take 100mg. I have noticed that my cholesterol has gone up since I started taking thyroid meds and my blood pressure too…
    I remember my doctor say oh you are wired up very differently….and I would think to myself….well most of us are not a standard text book patient!!! We are all different.
    I will read your book and I will definitely change my diet and looking forward to feeling so much better. Im sure this will also help with menopause symptoms like hot flushes and palpitations 🙂
    I have tried a few different diets and supplements and have felt a little better. Its difficult to find a good doctor that understands how you feel, I honestly felt like I was going nuts, no one understood and trying to explain symptoms made me feel like I was a hypochondriac and once given the thyroid meds it was ok well here you go you will feel better and you will have to take them for the rest of your life….
    Thank you again
    Ella
    Reply

    • Ella- Thank you so much for your support. I’m looking forward to hearing your progress on this page. Make sure to take the book slow, take notes, highlight, and establish a baseline when making changes. 🙂

      Reply

  8. What do you think about essential oils? If you think they are important which ones should one use for hoshimotos. I have tried many things only to find my health getting worse. Please any information if great helpful.
    Reply

    • Tracy- Natural essential oils: natural extracts and essential oils enhance antibacterial and antiviral properties of cleaning products. Antibacterial: camphor, cardamom, citronella, cypress, eucalyptus, ginger, juniper, lavender, lime, lemongrass, orange, lemon, pine, rosemary, sage, sandalwood, tea tree, thyme. Antiviral: cinnamon, eucalyptus, lavender, lemon, oregano, sandalwood, tea tree.

      Reply

  9. Hi there, I noticed a link a friend had on her FB page and it was your page. I am so grateful for your website. I read through it and it made me teary to read that what I was feeling and that some of my symptoms were experienced by so many others including yourself.
    I have ordered your book on amazon. I was diagnosed with thyroiditis 14 years ago. After suffering for a few years and was constantly told…you have anxiety, you are peri menopausal, your thyroid tests are in normal range etc etc. I was getting symptoms of both hypo thyroid and hyper thyroid and still do on and off….I would have the palpitations sweats, anxious, couldn’t sleep, sore muscles and then I would be cold lethargic, dry skin, tired no energy, aching muscles and would put on a little weight then I would lose a little weight. I then went into menopause and some of these symptoms became worse. Its been a real rollcoaster ride. I was eventually diagnosed with hypothyroid only because my TSH went to 8. and when I had a bloodtest a year or so before that it was 5 and because it was in the normal range, they said my thyroid was OK….
    Looking back I had a flu virus that really knocked me around, had a bad throat and lost my voice and wasn’t well for a few weeks and from that point it slowly went down hill. I also have had acid reflux, and tummy probs for years before but I was told I was I had a anxious tummy and worried too much….also I don’t deal with milk very well, or soy, Regarding grains it depends on what they are, if I have spelt or a wholegrain like buckwheat, quinoa a little rye or barley or a little wholewheat Im not too bad I can have brown rice and basmati rice but if I have Pasta and long grain white rice after an hour or so I feel like I am still hungry I get the hunger sensation in my tummy and that’s not possible after you have eaten a meal so I don’t eat pasta and rice very often if at all. Mild IBS happens on and off….so in effect so many symptoms I can relate too. I try to watch how much sugar I have and it definitely has an effect on me if I have too much, Yes I do take thyroid meds and I started with 50mg and I now take 100mg. I have noticed that my cholesterol has gone up since I started taking thyroid meds and my blood pressure too…
    I remember my doctor say oh you are wired up very differently….and I would think to myself….well most of us are not a standard text book patient!!! We are all different.
    I will read your book and I will definitely change my diet and looking forward to feeling so much better. Im sure this will also help with menopause symptoms like hot flushes and palpitations 🙂
    I have tried a few different diets and supplements and have felt a little better. Its difficult to find a good doctor that understands how you feel, I honestly felt like I was going nuts, no one understood and trying to explain symptoms made me feel like I was a hypochondriac and once given the thyroid meds it was ok well here you go you will feel better and you will have to take them for the rest of your life….
    Thank you again
    Ella
    Reply

  10. I used to actually feel the pressure/fullness in my throat caused by high antibodies. I used to wear a neck brace just to quell the feeling. It almost felt like a goiter. After going gluten-free iI feel normal again. It’s amazing. My friend is a dietician and told me that going gluten-free is not proven to improve thyroid health. It’s unbelievable that western dieticians aren’t even in the know. Thank you for your good work.
    Reply

  11. I have was told about 15 yrs ago I have hypothyroidism, I take 125 levotyroxin, my test come back in the normal range.. But yet I still feel tired all the time, i have bad acid relux, and this cough that never goes away. Can you tell me what kind of doctor specializes with the Thyroid?? I go to a family Doctor now, I just don’t think this is a priority for them..
    Reply

  13. Izabella, how do they test for hidden gut infections and how are they treated? I have an elevated white blood count and not sure why. It has been that way for some time. I just want my energy back. It’s been 20 years of Dr’s telling me it’s in my head. I have been on Armour but still nothing. Please help. I think I have gut problems but don’t know how to test. Thank you!
    Reply

  14. Izabella, I have a question that I have not seen addressed on follow up tests after diagnoses. Is it still necessary to have TPO tests done? I was diagnosed with Hashimoto 15 years ago. I had my ups and downs going from hypo to hyper until my doctor recommended RAI. I wish I had your book then. I can’t change what has already been done but by following the dietary guidelines in your book I have seen my health improve. I can’t seem to get the doctor to recognize treating Hashimoto instead of the symptom of hypothyroidism. Are all the tests you recommend for treatment or just diagnosing?
    Reply

  15. I was diagnosed with thyroid problems back in the early 90’s. In 1995 I was diagnosed with hoshimoto and I have a goiter . I was told they could not remove the goiter till it protruded and the specialist said no need for me to come back. I feel like I’m choking everyday of my life. In 2012 I was diagnosed with a nodule on my thyroid no need to remove not big enough. I take 175mcg it gets raised every 6 to 9 months when I start to get real tired and can’t work cause all I want to do is sleep . June 19th I went to the hospital thinking I had a abscess tooth and could not swallow they gave me antibiotic and sent me home 11:30 the same night back to the hospital cause I could not swallow my airway was closing I was diagnosed with Ludwig angina they gave me steroids and iv antibiotic did a cat scan and seen the abcess in my airway along with my goiter put me in icu released me the next day the following morning but to hospital emergency surgery to remove abcess 9 days in hospital. Now 2 months later found a ent that specializes in thyroid is going to remove my goiter
    Reply

    • Lisa- Most thyroid conditions result from the immune system attacking the thyroid because the immune system is out of balance. Even when the thyroid is taken out surgically, is ‘dead’, or treated with radioactive iodine the autoimmunity still persists in most cases. Many people will have their thyroids removed, and will develop new autoimmune disorders such as Lupus, Rheumatoid arthritis, etc. The immune system just finds a different target. We need to re-balance the immune system to prevent this (sometimes the autoimmunity can be reversed as well). The gut determines your immune system. With the exception of discussing proper thyroid medication dosing, the majority of my website and my book focuses on balancing the immune system. The info I present is based on my own research and journey for overcoming my autoimmune thyroid condition.

      HASHIMOTO’S ROOT CAUSE BOOK
      http://www.amazon.com/gp/product/0615825796?ie=UTF8&camp=1789&creativeASIN=0615825796&linkCode=xm2&tag=thyroipharma-20

      Reply

  16. I have no thyroid . I take synthroid . But I can sleep endlessly . Tired all the time . Acid reflux big time & take prosolic .
    Reply

    • Debbie- Most thyroid conditions result from the immune system attacking the thyroid because the immune system is out of balance. Even when the thyroid is taken out surgically, is ‘dead’, or treated with radioactive iodine the autoimmunity still persists in most cases. Many people will have their thyroids removed, and will develop new autoimmune disorders such as Lupus, Rheumatoid arthritis, etc. The immune system just finds a different target. We need to re-balance the immune system to prevent this (sometimes the autoimmunity can be reversed as well). The gut determines your immune system. With the exception of discussing proper thyroid medication dosing, the majority of my website and my book focuses on balancing the immune system. The info I present is based on my own research and journey for overcoming my autoimmune thyroid condition.

      HASHIMOTO’S ROOT CAUSE BOOK
      http://www.amazon.com/gp/product/0615825796?ie=UTF8&camp=1789&creativeASIN=0615825796&linkCode=xm2&tag=thyroipharma-20

      Reply

  17. I love your insite and information! This makes so much sense having Crohns the past 40 years and recently diagnosed hashimoto! I have always believed in and used natural supplements and thought I was doing well until recently starting THRIVE! This lifestyle product and change has brought my life to another level!!! It feels so good to feel good! I would appreciate your thoughts if you would take a look at it on my website, I have never experienced anything like this, my body is finally getting what it needs! I no longer crave or need coke or coffee for energy because of constant fatigue. Thank you for what you do!!!
    Reply

    • Debra- Thank you so much for your support!! That is great!! I look forward to hearing your progress on this page!! 🙂

      Reply

  19. My THS level was 28 when I first started taking synthroid. I was taking 125 much at that time 8 years ago. When I took my medicain I kept telling my doctor I felt worse. 6 years later I finally said to him I don’t feel like living any longer. My symptoms were only getting worse. Including extreme hair loss. I have always been they type if I am at home I have to have the tv on. One day during my normal rutene dr oz was on and I could hear a lady talking about all the symptoms I had including hair loss. Well I stopped to watch. Come to find out she had Celiac disease. I was tested the next day and that is exactly what I have. My lab work as far as my vitamin levels so bad several doctors had to look at them. Easy fix vitamin b12 shits once a week for a year finally got my vitamin levels within normal and I actually started feeling like a human being again. My Dr said celiac is so misdiagnosed that most labs now test for it automatically no matter what kind of blood work you are having done machine automatically test for this disease. Oh and have to eat gluten free which I have to say that is extremely hard to do. Can’t find a lot of foods gluten free and time to cook mine separate and can not cross contaminate is to time consuming for me. Just wanted to share is someone is not getting results from mess for thyroid look up symptoms on celiac disease.
    Reply

    • Mary- The Thyroid Bundle Cookbook contains over 100 delicious gluten, dairy and soy-free recipes from me and my favorite thyroid and nutrition experts – available here:

      THYROID BUNDLE FREE COOKBOOK
      http://thyroidbundle.com/

      Also, you may be interested in checking out the Root Cause Recipe Portal. It is full of autoimmune paleo and paleo recipes. You’re able to organize weekly shopping lists, meal planning, etc. Hope you check it out.

      ROOT CAUSE RECIPE PORTAL
      http://rootcauserecipes.com/

      Reply

  20. The last endo I saw told me he didn’t think I had Hashimoto’s because my thyroid ultrasound came back normal. My TPO antibodies were 542 range less than 35 and my anti thyroglobulin antibodies were 880 range less than 40. I’m so confused now. I thought having both those antibodies being high meant I have Hashimoto’s? He says he thinks it’s just Thyroiditis but my research hasn’t found any Thyroiditis that tests positive for antibodies. Does this mean my diagnosis is wrong and I have a different autoimmune disease? My TSH was 5.7 range .27-4.2 mU/L he even went so far as to say that wasn’t really that high and that reverse T3 isn’t reliable when my labs show I’m pooling. I left so upset and confused. I feel like crap even though I’m supplementing with b12, selenium, iron, d3and am full AIP. I’ve yet to find a doctor that knows how to dose my NDT and Cytomel properly 😢
    Reply

  21. Thanks Izabella for all your advice, I’m glad that exist a person like you. I recognize myself in all the symptoms, and it is stressful to be able to get out. I hashimoto’s thyroiditis with hypothyroidism for years and thanks to you I found out that there are alternative methods for this problem. I’m looking for more information on diet, recipes and various tests I can do. As soon as I can I will read your book! I’m from Italy (now living in Scotland), and theres no one know about this world.
    Reply

    • Noemi- Thank you so much for your support. I’m looking forward to hearing your progress on this page. Make sure to take the book slow, take notes, highlight, and establish a baseline when making changes. 🙂

      Reply

  22. My 16 year old daughter was just diagnosed with hypothyroidism and is going to be tested now for Hashimoto’s. We have picked up our first prescription for the generic synthroid. I spend hours reading online and my husband and I have decided to postpone starting her on them as we read that there may be a healthier alternative. Can you tell me the supplements or different things you do to go through this without prescription meds? I don’t want to wait long to get her treated. I know iodine is a necessary thing and I’m not sure she gets any. We use sea salt. So I’m going to start her on Shaklee multi-vitamin which contains iodine. I also read about sugar having a big part in this so I plan to take sugar out of her diet. Looking for anyones thoughts on helping my girl without drugs.

    Reply

  23. Hello

    I have few questions, which i want to ask from you:
    1. How to Approach you for consultation, i mean your Office is in which Country and is it possible to consult you?
    2. I have thyroid Problem, even i don’t know that i have or not because my doctors are good enough to find out the cause. Still i am following your Posts and pages and Research papers. I Diagnosed with Hypothyroid in 2014 not doubt i had some symptoms like hair falling dizziness and something feeling in my brain. From that time till now my TSH is fluctuating but not T3 or T4 , they are every time under the range. And doctor is not telling me proper medication , when he will see it is high , he will high the dose of Levothyroxin and when it is low then he will say now take 50 mg instead of 75mg . so I want to know what should I do ?
    3. I stated selenium last two months back and I was begging these people to check my TPO but they said once you diagnosed that you have Hashimoto’s then there is no need to check after 3 months. Is it true?
    4. Sometimes I think that my root cause is my GUT, because after diagnosed I got 18 kg and then I lost 12 Kg but my abdominal part is getting back to its normal position then I started Probiotic, I saw little bit changes in the size of my abdominal. So how to go for lab test for GUT or acid reflux and other things related to it.
    Waiting for your response.
    Thanks in advance for your corporation.

    Reply

  24. I too receive normal test for T3 and T4 but when I ask for antibodies to be done the TPO is always up and last test TG 126 and TPO 655 but Dr. was happy because previously TPO was 1300 so coming down was considered good??? I aso seem to suffer from allergies intense itching/scratching/burning sensation in different parts of the body. I am currently taking Eurostig (was prescribed at my request) so have no idea if it is what I should be on, or if it is correcting my problems. I also have a multi-nodular goitre (not sure if that is a problem either). Any ideas of what to do next.

    Reply

    • Margaret – thank you for reaching out. ❤️ About 95% of people with Hashimoto’s have elevated Thyroid Peroxidase Antibodies, while 80% will have elevated Thyroglobulin Antibodies. They can both be important in monitoring the autoimmune attack on the thyroid, and can both be used to monitor the effect of interventions. Some interventions will lower TPO antibodies more, while others will have a greater effect on TG antibodies. This can depend on the individual and their body’s response.
      Some people with Hashimoto’s test negative for thyroid antibodies because their overall immune health is so weak, they do not produce enough antibodies. I tested negative for antibodies several times. Now, I insist on a thyroid ultrasound. A thyroid ultrasound can be used to detect changes in the thyroid, associated with Hashimoto’s. Given that Hashimoto’s is one of the leading causes of hypothyroidism worldwide, it’s best to be certain, one way or another. I have written several articles about how to best decrease thyroid antibodies.

      Here are some articles I think you might find helpful:
      HASHIMOTO’S AND THYROID ANTIBODIES: PART 1
      https://thyroidpharmacist.com/articles/hashimotos-and-thyroid-antibodies/

      HASHIMOTO’S AND THYROID ANTIBODIES: PART 2
      https://thyroidpharmacist.com/articles/part-2-mechanisms-reduce-thyroid-antibodies/

      THYROID NODULES
      https://thyroidpharmacist.com/articles/hashimotos-and-thyroid-nodules/

      Reply

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