Survey by Thyroid Patients as to How They View Their Doctors — not a pretty picture!

Screen Shot 2014-04-03 at 11.42.37 AMRecently, Stop the Thyroid Madness LLC implemented a survey to discern thyroid patient observations and opinions about the medical professionals they have used. And the results of this poll present alarmingly negative opinions by 1,870 thyroid patients about doctors they have used.

Of course, most informed thyroid patients aren’t surprised by the findings of this survey. But to see the responses, and especially the comments made in response to questions 2 – 5, it all certainly underscores how deep the problem is.

As far as which doctors gave the worst treatment according to patients, Endocrinologists led the pack with MD’s following in second. Conversely, Naturopaths gave the best treatment, even though they barely got 1/3 of the responses.

Comments made by patients in response to Question 3 (see below–actions which would have raised the opinions of patients of doctors) were the most enlightening. They ranged from having better knowledge about T3 or desiccated thyroid, understanding the right lab work instead of the TSH, listening to their patients (stated frequently), better understanding of thyroid symptoms, ceasing to tell patients to eat differently or exercise more, not being so afraid of higher doses of NDT, understanding nutrition, stop with the labeling/dismissiveness/arrogance/patronizing, respecting educated patients…and a great deal more which you can read under #3 in the linked page below.

The survey’s five questions with responses were:

Question 1: How satisfied have you been with the way the majority of medical professionals you have seen over the years have treated your thyroid problem? (Choose one response only)

1) VERY SATISFIED – Most medical professionals have helped my thyroid issues.

2) MODERATELY SATISFIED – Some have done well; others have not done as well

3) NEUTRAL – I have no opinion one way or the other

4) NOT SATISFIED – the vast majority of my experiences with doctors have been
negative when it comes to helping me

Question 2: If you chose #1 above, why do you feel very satisfied about your thyroid treatment by the majority of medical professionals you have seen over the years? (Choose any that apply)

1) I feel much better than I did before

2) I have no more symptoms that I understand are related to hypothyroidism.

3) The majority of those doctors were good listeners

4) The majority of those doctors seem to know what they are doing.

5) The majority of those doctors respect my opinions and see me as a partner in my healthcare.

6) Their fees were affordable

7) Other (133)

Question 3: If you chose either 2, 3, or 4 in the first question above: which of the following actions by medical professionals would have raised your opinion of the thyroid care you had gotten? (Choose any that apply)

1) Paying more attention to my symptoms rather than putting focus solely on lab results.

2) Understanding how to read lab results

3) Being offered Natural Desiccated Thyroid or T3 rather than T4-only

4) Going more by the Free T3 and Free T4 plus symptoms, not the TSH

5) Understanding the reality of cortisol problems, plus saliva testing and treatment

6) Understanding the problem of low iron, reading iron labs, treatment

7) Being more open-minded about non-traditional therapies

8) Understanding that my depression could be related to my hypothyroid state.

9) Other (395)

Question 4: When thinking about the types of health care providers you have used over the years, please choose one type that you feel did the WORST job in your treatment.

1) Endocrinologists

2) MD’s (Medical Doctor)

3) DO’s (Doctor of Osteopathy

4) NP’s (Nurse Practitioners)

5) PA’s (Physicians Assistants)

6) Naturopaths

Comments (122)

Question 5: When thinking about the types of health care providers you have used over the years, please choose one type that you feel did the BEST job in your treatment.

1) Endocrinologists

2) MD’s (Medical Doctor)

3) DO’s (Doctor of Osteopathy

4) NP’s (Nurse Practitioners)

5) PA’s (Physicians Assistants)

6) Naturopaths

Comments (565)

TO SEE THE RESULTS OF THIS SURVEY, head on over the SURVEY: Hypothyroid patients view of their doctors page.

Seize the wisdom!!

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20 Responses to “Survey by Thyroid Patients as to How They View Their Doctors — not a pretty picture!”

  1. Kris Lathrop

    I am in need of a good endo or thyroid doctor. I have recently moved to Florida, while living in NY I was diagnosed with hyperthyroid and was on methemazole to control it. Tried to get in to see a doc when first arrived in Fl and could not find one or get in to see one for too long. During the time I was looking, my symptoms of hyper seemed worse so started taking more methemazole then originally prescribed eventually led to hypothyroid. Finally got in to see an endo who now says I have Hashimoto’s disease. I have had my thyroid checked in the past for idodine for cold and hot nodules and nothing came of it all tests were negative. Now this doc wants me to go through all this again. Is it possible to go from hyper to hypo because of over medication and also to suddenly have problems with iodine and can a nodule change from a previous hot nodule to a cold one? Thank you for your help.

  2. Tracy

    Hello, I continue to be frustrated by this disease…I was diagnosed hypothyroid at age 12, but not treated until age 13, because no child can possibly be hypothyroid… forward 36 years later…still suffering. Now that the Hashimoto’s diagnosis is confirmed (my levels came back at 125…and normal is less than 9), I was taken off my small dose of levothyroxine and accused of being a ‘number-chaser’ because my TSH, T4 and T3 are all within the normal range. I’m told my symptoms mimic every 40-something and I should just deal with it.

    • Jacqueline


      My suggestion would be to find a new doctor. Anyone telling you you need to just “deal” doesn’t have your best interest at heart. I’ve been seeing a Naturopath with good success. I know not everyone likes their methods. I see one near my home, but I started by going to Bastyr which is a naturopathic school/clinic in Seattle. Once I figured out what they were all about I was able to find one closer to my home. I was told last year by my OB after she laughed at me about my concerns that I was getting older and I needed to just deal. I went through 3 other physicians that said the same thing. I finally found a new dr that sat and listened and didn’t laugh. I probably scared her because I went in with labs and a calendar with a chart of all my symptoms, because I was so used to doctors dismissing my concerns. I finally have a diagnosis and a plan. Don’t give up till someone actually listens and helps you! It’s horrible and I haven’t even been dealing with it for a fraction of the time you have under your belt:(
      Best wishes!

      • Aubryn

        Please tell me who you saw. I am in Home WA. Have no health ins due to plan cancelled via “healthcare reform” Canno afford to make a mistake as all is cash.

    • Nell

      Tracy, I had sub clinical hypothyroidism and didn’t know it. Despite having normal vitals, I slipped into depression, severe fatigue, gained weight, got puffy, and it felt like I had razor blades in my stomach. I was managing a health food store at the time, ate very well, and was taking supplements, probiotics, the works. I did a lot of reading and wondered if it was a thyroid issue. I finally located an MD who was willing to prescribe Armour thyroid. The change was immediate! I woke up refreshed and happy again. The puffy eyes vanished. I lost weight. I started my own business. Oh, and I regained my libido for the first time in years, and lost vaginal dryness.

      People don’t realize how important thyroid is. I now feel the reason doctors can’t pinpoint why so many elderly patients slip into dementia even though they don’t have Alzheimer’s is because they’re not getting enough thyroid hormone. And this because their test criteria are screwy and need to be re-evaluated. I wonder how many more people have to suffer when the fix is so simple and inexpensive? How many are being put on harmful drugs when they could eliminate a host of problems by taking a simple natural glandular?

      I hope you find a good doctor/naturopath who will help you regain your health and vitality.

      • jennifer

        I am convinced that current standard medical practice is incapable of dealing with hypothyroidism effectively.

        I just visited my new endo for the second time. Backtrack to 5 yrs of seeing several different docs to be told everything is normal…you just have a multi nodule goiter which is common. ok but then why do i have all the symptoms of hypothyroidism? Ive suffered enough! No explanation.

        Fast forward to now..desperate and feeling like i was dying, i took my MIL’s 100 mcg Levoxyl , cut it in half to 50mcg and within a week, every day, felt better and better and goiter actually decreased in size. Was on it for a month..never felt better! Seriously night and day. Decided i needed to see a new endo so that i could get a prescription of my own. First visit was great, she listened, she jotted down, was not happy i took someone else’s meds but it was what it was.

        She has me take a blood test, my TSH was 1.14, T3 2.9, T4 1.52, she calls me and says your numbers are lower than past reports but still in normal range but if you feel better than i recommend you stay on them..GREAT yay! Sounds good to me…BUT if you want me to see your thyroid function without meds to see the real numbers than come off of them and be tested in 5-6 weeks. I DID JUST THAT! It was the worst 5 weeks of my life! Every symptom came back and then some and goiter got larger again.

        I started medication the day after my blood work due to feeling so horrible. Within 5 days im back to feeling great and goiter is back to decreasing again. I saw doc yesterday to be told that she never told me to come off medication, that she cant really tell if my levels are true reading, my feeling better and goiter decreasing has nothing to do with the medicine, hypothyroid symptoms are very non specific and i dont have hypothyroid, all my levels are normal, TSH 2.52, t4 was 1.07 and T3 is maintaining at 2.9 or 3.0!

        When i asked her than why do i feel horrible off the medicine all my symptoms come back and my goiter gets larger, but while on it all is better, she proceeds to look at me and say Im not going to argue with you! I nearly died inside when she said that…i looked at her deep into her eyes and said I am not arguing with you im simply asking you questions as the patient and I have every right to ask whatever and however many questions there may be about why i feel a certain way! I know my body and how it feels you just look at numbers and base your narrow minded findings off of that!

        Needless to say she knew i was not happy with that and she wrapped up our visit with more tests slips and more ridiculous comments as i sat there dumbfounded by her ignorance! I got my records and walked out. NEVER seeing an endo ever again!

  3. Melissa

    I am 24 years old with a 4 year old daughter and recently my life changed for the worse. One Friday night about 2 months ago, I suddenly got heart palpitations and went directly to the emergency room, shortly after I was experiencing vision disturbances. The test showed that I had high levels of TSH making me hypothyroid and my levels of T3 were low. I never had a primary care doctor so when I finally saw one some time after, he checked my levels twice and told me they were in the “normal high” and did not need to be treated. That time I was in the hospital my level was 5.7. I complained to the doctor of this pulsing blurred vision and heart palpitations that were going on 24/7 and he insisted that I had developed anxiety disorder and that the thyroid was possibly doing this. He put me on anti depressants, mirtazapine 30mg to be exact. Another night I went to the hospital because I wasn’t getting any relief from the dizziness, eye symptoms, and heart palpitations and they said my tsh levels were high at 6.4 when I went back to my doctor he decided to put me on a low dose of 0.025 of levothyroxine. I explained to him that my t3 levels were low and it’s important for those levels to be elevated for my mental health in order for my anxiety disorder which I supposedly developed to get better and I insisted on explaining that sometimes t4 (levothyroxine) does not convert properly into t3 and maybe that was my problem. He nodded his head and insisted that it was all nonsense. Here I am 2 months later, not in school, not living a normal life, crying every single day because the antidepressants make no difference, the xanax only gives me relief for 3-4 hours and at the end of the day all of these medications for my anxiety disorder only cause relief but are not the actual cure. If I want to be cured I need a doctor to take my thyroid problem seriously, do every single test possible, give me the proper medication. I need to somehow stop taking these anxiety disorder medications and try to conquer and battle this mental illness the natural way in order to rid myself of it for good. I need help, If there is any good doctor out there willing to help me please I am crying out for help, someone please help me, I beg of you. I’m a single mom of a 4 year old currently not in school or doing anything because of this chronic illness that has got a hold of me. Whether the thyroid made the anxiety develop or whether they are 2 seperate problems, I need a smart good doctor that can help me. Also I was slightly anemic and my vitamin D level was very low.

  4. Dianne

    My Endocrinologist has been the worst of all the doctors I’ve seen. She doesn’t listen….enough said.

    I have been on methemazole this past 3 years and have had a whole host of problems including severe hair loss, weight gain and my stomach hurts regularly. What I find interesting though, is that I’ve had a hyperactive thyroid for 15 years and never had a tremendous problem with it until the last 3 years and a steady diet of methemazole. I have developed eyes problems, not just with my vision but with bulging of my left eye. I’ve have 2 eye surgeries this past year to take care of that.

    Recently my Endo. changed me over to propylthiouracl. I don’t know if the hair loss or weight gain will be any more or less with this but it is making my urine smell absolutely horrible.

    I also have quite a few other health problems too. Sleep Apnea, fibromyalgia, diverticulitus, IBS, and mental illness, (I’m bi-polar- no psychotic episodes, mostly depression). I’ve decided on all my health issues to take the bull my the horns and make some dramatic changes including, firing most of my doctors, getting more exercise, changing my diet, and using natural supplements. Is there not any natural supplement I can be taking for my hyperthyroidism? According to my ex-Endo. doc it’s methemazole, propylthiouracl, surgery or some kind of radioactive iodine treatment. I think it’s important to mention that I have nodules in my thyroid too. They tested them 3 1/2 years ago to make sure they weren’t malignant.


  5. Nell

    After moving from CA to another state, my new doctor refused to renew my Rx for Armour thyroid at the dosage I’d been on for many years due to my low TSH. We argued about it for weeks. Then I was left without any thyroid for several days because I couldn’t get an appt. with anyone else. Suddenly I got severe tinnitus and lost part of my hearing in one ear. Fatigue set in, and I lost mental acuity–feeling totally spaced out. Couldn’t find my car in the parking lot…getting lost while driving. Forgot to pay bills or take care of myself or my husband.

    I told the doctor about all this, but she still insisted I needed a reduced dosage, even though when I first came in, I was in perfect health! I asked for all my records and saw that all my stats were normal. I have no diabetes, no heart issues, I’m not overweight, I don’t smoke. So, it’s just one number keeping me from having the only supplement critical to my well being! Unbelievable! I have been doing my due diligence and have found out how conflicted the “experts” are about the studies, and resent being denied what is critical for my health by people who aren’t willing to think outside the box, or read up on the latest.

    I have aged 10+ years in three months, and have finally located an integrative medical group locally. I strongly suggest if you have to move, be sure to find a provider beforehand. You might not find someone who will write your scrip. Hopefully my hearing will come back. If not, I’ve paid a high price due to my providers ignorance!

  6. Dr. Craig A. Maxwell

    In my 30 years of practice, I have had thousands of frustrated patients walk into my office completely frustrated with the care they’ve received by doctors who should, by all rights, be better trained in treating thyroid disease. Hypothyroidism is one of the most common yet under-diagnosed autoimmune diseases in the United States. Oftentimes, a combination of key dietary changes and supplements are all that is needed to get the thyroid back in balance.

    • Aubryn

      Thank you for your post. Do you know of anyone experienced in treating hypothyroidism W Washington State?

  7. Lyn

    I have an under active thyroid and have been taking oroxine for 20+ years. I started with 50mg and am now on 200mg (for about 15 years). My doctor (of 5 years), in a last ditch effort to discover why I’m still suffering from chronic fatigue, sent me for a RT3 blood test. She’s a regular MD, not an endocrinologist and is ready to try anything to help her patients. Unfortunately, she moved to another state to care for her grandchildren before the results came back. My new doctor — who admits he doesn’t have much experience with thyroid patients — gave me the results today. The RT3 results were well over the upper level. The lab also sent information about the results of the RT3 saying higher readings are not unusual for patients suffering from chronic fatigue or chronic arthritis (I have both). This new doctor/patient relationship looks like it might work out, because he wants to know more about the alternate thyroid medications. My Pastor’s wife was the first to alert me to Desiccated Animal (“natural”) T4 /T3 products as she also has an under active thyroid. She was the one who told me about your web site and your STTM book. So, I’m looking into getting a prescription for Natural T4/T3 from my new doctor and having a compounding chemist make it up for me. Hopefully, this will be the start of something good.

  8. Lyn

    Oh, I meant to say, about 20 years before I was diagnosed, I was waiting to see the optometrist when his last patient (a Chinese gentleman) walked up to me, looked in my eyes and said, “You have thyroid problem.” I didn’t take any notice at the time, but wish I had.

  9. Alicia

    Can you provide a list of endocrinologists/naturopaths in the Winston-Salem/Greensboro, NC area?
    I’m looking for a doctor who will listen and consider NTH, but don’t know of anyone around here that
    I can ask for a referral.


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