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  1. What do you do if you have a great doctor, tests only T3 and T4 now because we have realized that my TSH doesn’t tell the truth. I’m still tired, gaining weight, non-motivated, emotional, depressed. I’ve been diagnosed for years and just don’t know if this will ever even out.

  2. You forgot one other thing… Doctors that tell you nothing is wrong other than you are depressed and then write out a script for anti depressant pills. I went through this for years doctor handing me a script for anti depressanrs and me handing it straight back to him. Eventually I saw a doctor who looked back over my many tests, listened to me telling about my symptoms and said yes, we are talking under active thyroid and started me on thyroxine. Sadly that doctor is no longer available and I struggle now to get doctors to see that I need my dosage putting up. All they do is look at the TSH results, for that is all that is tested here in the UK, and do not take any notice of my symptoms. My hair has all but gone on my head. I haven’t shaved my legs for 4 years, I shave under my arms about every three months. I barely eat, literally, so that doesn’t help my energy levels but my weight is going up. I could go on but I’m sure you get the picture.

    1. I’m rooting for you, honey. Hang in there and keep looking for answers. You deserve to feel better!

    2. blank Denise Swartz says:

      Wow. I can relate to so much of what you’ve said. Hair loss over your entire body. Although I really don’t mind having to shave too often. Lol
      Eating well but still gaining weight, constant fatigue, joint pain are no joke. Hoping you find the right combination of meds to help you feel better. It does take some time and experimenting with different doses. Good luck!

  3. This is a classic experience of being a chronically ill patient with Thyriod & Parathyroid struggle. It is a highly underrated the whole body impact and under studied by doctors. They just vomit out the outdated surface information in a chapter of medical book on endocrine. Its not even a disease Endocrinologist focus on in practice. Diabetes is the main practice of Endo. Doctors and it’s difficult to find one that understands the Thyroid. I switch through Endo. doctors the second they start scrutinizing how I’m taking meds. They have been brain washed to believe it’s never the medication it’s always the patients fault.
    We have to be our own advocate and study the medical world of thyroid, be aggressive about asking for tests & denying dumb treatment changes. We are just guinea pigs and every change takes months to integrate. They aren’t seeing the suffering of living those rollercoaster of changes. The saddest part is we learn to suffer in silence. Being uncomfortable is the norm because we get only resistance & bare minimum medical treatment.

    Did you know the problem is really in our brains? The Hypothalamus & Pituitary glands that signal & regulate thyriod/Parathyroid hormones functions?
    The T4/T3 meds are inadequate in replicating the hormones in the natural endocrine process. The meds are fooling our brains.
    No doctor ever talks about your brains role.

  4. blank Aaron Scarpa says:

    Thank you for this post. I am sorry that you experienced so many instances of people being rude about hypothyroidism.

    Last summer (May 2017), I was suffering crushing depression. I chalked this up to bring burnt out after my first year of medical school, and the psychiatrist I visited told me the same. His recommendation was exercise. Made enough sense, I played two varsity sports in high school and was in outstanding shape until a point a few years back that my father reassured me was “just my metabolism catching up with me.” My doctor scoffed when I suggested checking my thyroid.

    Come February, I get these pesky headaches that won’t go away. Low and behold, it was Hashimoto’s! While things are way better with replacement therapy (more energy, testosterone levels up, and now having the energy to train for a half-marathon), I still have moments. If I feel too tired after a long day, my friends will say something like “take an extra levo!”

    Some good has come of this though. When I see patients and hear their stories, I feel like I can make a better connection with them. It’s a tough fight we face, but we’re all in this together!

    And yes, thyroid affects us guys too!

    1. Thank you Aaron,
      I will be 72 this Wednesday. I was 28 when I was pregnant with my third son. He was born in 1977. I believe my thyroid blew during this pregnancy. I gained double the weight than my first two pregnancies. Then I noticed the 1/2 of an egg protrusion on my neck a year or so later. Then my doctor watched for years and treated with Synthroid. Finally, about 1985 they removed then had to go back in two day later when cancer was found. They removed 90% of my thyroid lobes. It has made this lifetime difficult. In the 1980’s the only book I could findAN was written by Dr Broda Barnes, HYPOTHYROIDISM, THE UNSUSPECTED ILLNESS. Dr Barnes believed in treating symptoms, not T3 & T4. He believed in taking your Basal Body Temperature to determine hypothyroid illness. Dr Barnes strongly believed that doctors cannot make money on a basal body temperature, taken at home, by the patient. It was my feeling that greed caused doctors to stop treating symptoms. It was free. No profit to be made there. Much better to draw blood, send to a lab and charge insurance and patients huge amounts. I SCRATCH YOUR BACK, YOU SCRATCH MINE. DR BARNES DID NOY SAY THIS, BUT MY BRAIN STILL WORKS. THANKS TO DR BRODA BARNES, EVEN THOUGH I’ve never met him, I’ve understood what was happening. TAKING YOUR BASAL BODY TEMPERATURE IS THE BEST TEST YOU CAN DO.

  5. blank Janice Rowe says:

    I also had thyroid cancer thus total removal of my thyroid,I am on 75 micrograms of Eutroxsig daily,my Doctor seems to think this is fine!..I wonder is it?..I am still so tired and my weight keeps piling on,I do exercise well, I walk for 20 minutes a day any longer and my ankles ache!..I don’t over eat and still I cannot lose any weight,I am so depressed and feel so fat and lifeless all the time..

  6. So true! Been there …done that! Frustrated. . …for YEARS! Can relate to so many of you. My heart hurts hearing that you were there too. Can relate to the Hashimotos. I must have had it for many years. So glad for the AWARENESS! Keep talking & working towards even more awareness & understanding. I am doing well on the New Zealand bovine desiccated hormone. Could feel her pain in article. Don’t suffer in silence! (Would tell her the extra language detracts from her good message.) God bless You dear fellow travelers.

  7. blank Elizabeth Sweeney says:

    I feel so sad and angry reading these stories, so much unnecessary suffering.
    I would never have know I had Thyoid problems until I read an article in Marie Claire.
    I was tired, overweight , sluggish, painful joints etc. However my GP dismissed my blood tests airily as being ‘borderline’ and we don’t bother to treat that !
    After reading the article I was amazed to see that I ticked all the boxes. However I had no idea how to proceed . At the end of the page long article contact details for International Thyroid Group (now known as Thyroid U.K.) were listed. I rang the no listed and spent over an hour talking and listening to an amazing lady.
    Her name was Betty Bell and I am forever indebted to this wonderful woman ( that was almost 18 years ago!)
    Betty informed me that she needed some information ie whether I was Hypothyroid or Hyperthroid . Of course I had no idea , I barely knew where the Thyroid was located at that
    stage. I hitailed it to My GP s surgery : where a young locum doctor looked up my blood
    test. She informed me I was ‘borderline’ Borderline what? Oh hypothyroidism or underactive Thyroid.
    When I enquiried what the treatment for this was she simply said Oh we don’t bother to treat borderline hypothyroidism .
    I contacted Betty again and she sent me a pack of incredible information on Hypothyroidism . It was eye opening, all my symptoms pointed to underactive Thyroid.
    Where to go then. I picked up that what I needed was a referral to an Endoctrinologist.
    I attended a private Clinic. The Ulster Independent Clinic, where Prof Atkins prescribed 150 mcg Thyroxine. This is a simple synopsis of my history. I have had many ups and downs , especially when dose was reduced. However I have found many supplements which while not medicinal, do support the Thyroid . I would happily share this information privately , because while many work for myself they may not work for everyone .
    Unfortunately T3 is not prescribed in this country , although it is commonly used in other European countries such as Germany .
    I feel well and healthy on my present regime, but have had to research extensively and work hard to keep on top of the underactive Thyroid .
    I wish you all well and have great sympathy for those of you who are finding it all challenging

    1. They do prescribe T3 in the U.S. I’ve been taking Liothyronine for about 3 years. I got it from a naturapath, ordered from a compounding pharmacy. It made a huge difference. Levothyroxine sent me to emergency twice with horrible anxiety, and high blood presssure. It didn’t change from T4 to T3 like it was supposed to, so the T4 kept going up and the T3 kept going down. I finally had my doctor change my prescription as the compounding pharmacy was way too expensive. I don’t have the anxiety any more, but I’m still dead tired.

  8. blank Sharlene Hamilton says:

    Omg all these stories resonate strongly with me. Im 56 yr old female was diagnosed with hypothroidism after the birth of my third child. I was 30. Have been on levothyroxine ever since. Have been diiagnosed with everything mentally from bi-polar2 to bpd to depression to anxiety. I have been on most psychiatric drugs to “tame” my so called mental illness and am now drug free. I always thought that it was my thyroid causing these problems. I am almost through the change of life thank God. Thank you for your website and msybe now I understand that Im with like minded women suffering with the same hellish disorder. Bless your heart, Sharlene❤

    1. blank Kay Fisher says:

      At 33 yrs old I started having hand tremors than one day in front of my husband I had a serious seizure. In the ER a doctor realized it was my thyroid. I was diagnosed with hyperparathyiodism. A ultrasound showed tumors on my parathyroids. The doctor had to do a parathyriodectomy, removing all four of my parathyriods. Now my thyroid didn’t have those helpers anymore to function properly! But no doctor told me at that time I would need medication for my thyroid. I suffered years of depression, feeling like I was in hole I couldn’t get out of and cried in the shower bc I hide my feelings from my sons 18,16 & 13 and husband. It wasn’t there fault I thought I was losing my mind. It was over twenty one yrs later at 54 yrs old that finally a doctor listen to my symptoms, she took a blood test and was horrified when she saw my thyroid levels. She told me she didn’t know why I haven’t killed myself. I told her I didn’t have the strength to do that! That’s when I enter the world of Synthroid medication and starting feeling like my old lively self, laughing again and watching my sons get married and now 3 wonderful grandchildren, one on the way! One thing I did learn from this experience is don’t aloud other peoples comments like the ones in this article deter you from being proactive about your health! I did and it took me too long to get my help for my now hypothyroidism. I’m 63 now and the last ten years have been good.

  9. Thank you all for showing me I am not alone, my doctor says I am all fixed,will not send me back to the hospital and that I am imagining it,I am crying now and don’t no how I can go on.
    But I will try,thanks again.

  10. blank Joan Poletti says:

    Don’t forget about checking for Reverse T3! If you are under stress (lol, who isn’t?) then your T4 may be converting into reverse T3 instead of T3. It’s your body’s faulty idea of how to de-stress you by making you tired so you rest instead of do too many things! Kind of like when you didn’t have enough thyroid hormone your body made you hungry so you’d eat and then “you could have energy.” I remember having a perfectly good lunch and then feeling like I could eat it all over again. And I could eat a dozen doughnut for breakfast if I let myself. It was amazing when I got thyroid treatment that I could feel full after a normal meal!

  11. blank Martha Hill says:

    I was diagnosed with hypothyroidism about 3 years ago and put on thyroid medication 1.25mg. My TSH levels have returned to normal with the medication, but the symptoms continue. I have never felt my condition was controlled even though the blood work indicates normal as all the symptoms remain and even worsened. My doctor says my fatigue, brain fog, hair loss, brittle nails, skin conditions, facial hair, intestinal problems, weight gain are the results of other reasons; namely, lack of exercise, depression, diet, or my imagination. My medication has never been changed since it was prescribed 3 years ago, My doctor tells me my thyroid is fine and largely ignores my symptoms. Except for controlled hypertension and osteoarthritis, I am otherwise in good health. I am 76 years ol and barely existing, I have no energy to do anything even if I was motivated to participate in life. Just trying to cope with all the body changes and the inability to think properly is all I can manage right now. What should I do? I feel helpless and lost in this fog with no help or hope from my doctor.

  12. I had part of my thyroid removed in 1979 and have almost all of the above things said to me by well meaning friends and doctors. I have my T3,4 and 7 checked annually and there are times when my dosage has to be adjusted because the numbers are off. You do get accustomed to the problem and I still get questions about the scar on my neck. Thank you for the article.

  13. blank Kathy Calhoun says:

    I have Graves’ disease and I struggle with joint problems and weight gain.Crave sugar really bad.Wish I had more answers

  14. Was ‘nuked’ at 13.
    Never diagnosed.
    Entered my 20s … Was going ballistic. Still no diagnose.
    My 30s were about: loss of right eyebrow, bulging eyes, gastrointestinal issues, fatigue beyond me, swelling, hot , cold, hair didn’t care , southern region didn’t want any participation with the rest of the body. Was diagnosed Hypo- Hashimotos.
    My 40s , roller coaster ride on my thyroid levels and then my ‘Darth Vader’ voice made it’s appearance, twice in a year…
    Felt like I had something in my throat and it hurt to swallow.
    Went over to the Endo, ultrasound and needle biopsy. Results: cancer. Action taken: thyroidectomy.
    Now in my 50s..?
    No idea on how my body will react on the next day!
    I’m in the fitness field and it’s hell to keep up with the fatigue, the cramping, the heart, the brain fog and especially how my muscles respond… Which sometimes it’s: STAY IN BED BECAUSE WE AINT MOVING!
    Now… I depend on a small blue pill to keep me ‘normal’ because my ‘ butterfly ‘… Has gone to far away gardens!

    1. blank Joyce Mccrory says:

      What did you mean “ you were nuked at 13”?

  15. blank Helen berry says:

    I have lost count of the number of times people have said (and yes sadly most of the time people close to me) ‘if you just went and did something physical you would feel better’. ‘Stop eating so much crap and you might lose some weight’. Now I just don’t bother telling anyone and just smile and nod when they start doling out life advice.

  16. TSH IS FINE = So no reason for the weight gain. Need to exercise more. NO SORRY it was Thyroid Cancer. There is one that I hate more than anything and have heard several times. “Oh don’t worry you got the GOOD cancer” erghhhhhh…. No cancer is every good and would swap places with them to live one day without a thyroid and then try saying that to me again.

    1. blank Shannon Davis says:

      Totally agree. Same thing happened to me. Very frustrating. I had to research everything myself, and finally found a FNP that diagnosed me. Good luck, and take care.

    2. I got the same thing said to me. Talk about insulting. I’m sorry but just knowing it is in your body is horrible enough. I had the same reaction when I had Cervical cancer and especially when I had Malignant skin cancer. Yes, that was a great cancer, especially with the 7 inch long and inch wide scar going down my back and a scar by my armpit because there was 6 nodules in my armpit they had to get out that were cancerous connected. Now I am permanently numb from shoulder to elbow. People are ignorant and if they don’t have it then it just doesn’t exist. People throw around words like Bi-polar making fun of people if they get in a bad mood all of the sudden. I don’t have it but would never be so sensitive to say anything like that. It’s so awful-!!!
      Sorry, I went off a little bit I’ve been told things before, even by my husband and it hurts to the core. I’m very passionate about this. Good health to all and huge hugs!!!

  17. blank Martha Morris says:

    I have been on thyroid medicine since 1972 (when I was 24) and suspect I had it long before that. I have always been a lot more tired than my sister’s, have had a terrible weight problem (all these years yo yo dieting), and not being able to keep a stable weight. My mama always told me i was lazy. I recently had a thyroid test and my tsh was .569 which in on the very low end of normal. Would it not occur to my doctor that with my symptoms that maybe I need for my tsh to be more toward the high end of normal just to try to help me feel better. I don’t eat pasta, bread, rice, potatoes and go to exercise classes 10 hours a week. Some of the classes are really strenuous. I’m absolutely exhausted after these classes. I will be 70 in March and would really like to have a normal life.

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