15 Things which Thyroid Patients should teach their Doctors

Screen Shot 2015-08-07 at 4.28.31 PMMany thyroid patients will tell you they have, or have had, doctors they love! I, Janie, have had many of them.

But it doesn’t take away from the fact that those in a medical profession have been sorely lacking for decades about correct knowledge on how to diagnose and treat hypothyroidism or Hashimotos, besides have inappropriate familiarity about all the issues related to being hypothyroid. Even their knowledge on how to correctly read labwork has been lazy.

Because of that poverty of correct knowledge, patients were forced to take the bull by the horns and figure things out for themselves! Stop the Thyroid Madness, the flagship of “patient experiences and wisdom”, represents all that wisdom!

Here are 15 things that any thyroid patient not only has to learn, but needs to teach any medical practitioner the best way they know how:

1) My fatigue and weight gain is not simply because I need to exercise more and eat less.

Granted, we know that exercise and how we eat is important! But being undiagnosed hypothyroid, or poorly treated due to Synthroid or any other T4-only medication, or being held to the TSH, keeps many of us with a low metabolism. The latter results in very easy weight gain, or the failure to do the kind of exercise which would help us!

2) Depression is strongly related to continued hypothyroidism!

We know there can be a variety of reasons for depression, but for most thyroid patients, our depression is a sure sign that we are either undiagnosed due to the lousy TSH lab test, or undertreated due to being on only one of five thyroid hormones like T4-only, or being held hostage to the TSH, a pituitary hormone.

3) The TSH lab test has been a failure for too many years.  

Yes, though a seriously low TSH can detect if we have hypopituitary, for most of us, we’ve had a “normal” TSH yet obvious hypothyroid symptoms. Additionally, when we are optimally treated on Natural Desiccated Thyroid, T4/T3 or T3-only, our TSH lab test is always below range without one hint of bone loss or heart problems. We want to go by the free T3 and free T4, plus symptom removal and a good heartrate and blood pressure instead. http://www.stopthethyroidmadness.com/tsh-why-its-useless

4) To figure out if I have Hashimotos,  BOTH antibodies labs need to be tested, not just one

To detect if we have the autoimmune version of thyroid problems, patients saw right away that one antibody could be high, but the other one not.  So we need both the anti-peroxidase AND the anti-thyroglobulin lab tests. And by the way, many Hashi’s patients soar on Natural Desiccated Thyroid if they raise it correctly. See #5.

5) Natural Desiccated Thyroid (NDT) has been changing patient lives for years now, just as it did for decades before Synthroid hit the market. 

Though some patients do better on T4-only meds than others…at first..there is simply too many reported experiences by patients for 15+ years that it’s not the way to go. And those same reports show that being on the five hormones that NDT gives makes much more sense.  Even adding synthetic T3 to synthetic T4 has produced better results.

6) I can’t wait six weeks before having a raise!

Thyroid patients found out the hard way that if they stay on a starting dose of NDT (which is usually one grain) longer than a few weeks, the feedback loop causes hypothyroidism to come back with a vengeance in some way or another. So we raise every two weeks and start slowing those raises in the two grain area or close to three to start finding our optimal dose. http://www.stopthethyroidmadness.com/natural-thyroid-101

7) My lab results are not about being in the “normal” range.

This was a huge discovery by informed thyroid patients as they kept observing each others lab results for years: it’s about “where” the lab result falls that tells the story…not just because it falls in a suspicious “normal” range based on the testing participants the lab facility chose. http://www.stopthethyroidmadness.com/lab-values

8) If I react poorly to NDT, it’s not because NDT isn’t right for me. 

Patients who have had problems with NDT found out that there are five correctible reasons for most of them:  a) being kept on lower doses far too long b) not raising high enough because of being held to the TSH range c) having low iron d) having a cortisol problem 5) having Lyme. This page explains: http://www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

9) Yes, there really is such a thing as adrenal fatigue/adrenal insufficiency/hypocortisolism.

Easily more than 50% of thyroid patients end up with a cortisol problem, either due to being undiagnosed for years thanks to the use of the faulty TSH lab test, or being put on only one of five thyroid hormones–T4. And to learn more about it, one of your doctor’s own colleagues has written a brilliant chapter as to biologically why we get low cortisol, found in the Stop the Thyroid Madness II book, chapter 15. And this:  http://www.stopthethyroidmadness.com/adrenal-info

10) Saliva testing for cortisol is far more accurate than blood testing

Saliva is said to be testing one’s cellular levels of cortisol, plus it does so at four key times during a 24-hour period, which is important to know. And patients found that the results (from reputable companies) fit their symptoms! Whereas blood cortisol testing is measuring both bound and unbound cortisol, and most of the time does NOT fit the symptoms, showing high cortisol when we are really low, or vice versa. http://www.stopthethyroidmadness.com/adrenal-info

11) If some or most of my saliva cortisol results are low, there are safe and effective ways to treat it. 

The adrenal area is one which thyroid patients took great time and care to learn, based on what we read from experts, plus our repeated experiences and wisdom. This is where our doctor, need to be open-minded enough to learn from Stop the Thyroid Madness, both on the website and in the revised STTM book, chapters 5 and 6.

12) If I have acid reflux or stomach problems, it’s usually due to low stomach acid caused by our hypothyroid state, not the need for Prilosec (Omeprazole). And some of us need to be off gluten, especially if we have Hashimotos.

i.e. what we need is to restore a better level of acid in our stomachs, which our hypothyroid state lowers–the latter which causes problems in absorbing vitamins and minerals. That’s why we need to put lemon juice or apple cider vinegar in the liquids we use to swallow our meds and supplements. And a large body of us with Hashimotos need to be off gluten.

13) I’m not stupid just because I didn’t go to medical school, plus I live in my own body. So I need you to see us as a team. 

Because of what Stop the Thyroid Madness gives me, both the website and the books, it’s important to me that you see us as a team–BOTH my knowledge and your own.

14) No, thyroid cancer is not the easy cancer.

Thyroid cancer patients hate their cancer as much as anyone does…plus it’s worrisome, surgery nor RAI is not a picnic, and recurrence is on our minds. http://www.stopthethyroidmadness.com/2015/01/31/thyroid-cancer-easy-cancer-thyroid-cancer-patients-appalled/

15) My thyroid labwork should be done before I take my thyroid meds for the day. 

Patients discovered that the T3 is NDT will peak about two hours after meds are taken, then a slow fall. If patients are on T3-only, it’s a 4-hour peak. We want to measure what still lingers in us, not the peak or rise.

What else do you think our doctors need to learn?


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41 Responses to “15 Things which Thyroid Patients should teach their Doctors”

  1. Carol McDowall

    I would like some info on raising NDT to bring my labs into the optimal range. I have a very good doctor who has followed STTM protocol in all things, but one. She seems fearful of letting me raise my NDT dose over 2 grains even though my T3 and T4 are at the lowest end of the range. All because my TSH is suppressed. She claims that it could be other issues, like food allergies, though I am on a strict paleo diet. Is there any credence to her claims? I took a blood test for food allergies to placate her and will hold off for another thyroid panel in a couple of weeks. I need something to fight her with.

    • Stephanie

      What are her concerns? If bone issues, I think there are studies that show that the calcitonin in NDT is helpful, so this fear is unfounded.

  2. Emily Summer

    I have tried to talk to my doctors about my hypothyroidism until I am blue in the face. It is possible to get desiccated thyroid from Thailand with no script. Just sayin.

  3. Marilyn de Santos

    I am one of the lucky ones who responds well to thyroxine. that said, If I go over or under according to my blood test, I will automatically be cut by 25 mgs or increased by 25 gms. Since I am currently on 100mg, I could be over or under by 12 mg but be adjusted by 25 mg since this is the weight of the tablets available in the UK. For example, say my blood test says that on 100mg I am going towards over-active by 9%, my dose is cut by 25% putting me under by 16%. This is not an answer but one that has been proposed to me by my otherwise good doctor and I have argued against.

    • Sheila

      Marilyn, I was on Synthroid until last week, and my pills were scored, so they were easy to break in half by setting on a countertop and pressing down with the fingertip of my forefingers on each side of the line. Splitting pills in half gave my doctor more dosing options.

  4. Gina

    I have just discovered STTM and the alternative treatments for hypothyroidism. I’m looking for a doctor in Spain where I live that will prescribe NDT. In the meantime, I want to ask for a new blood test since I was last diagnosed as being “a bit hyper” so my dosage of Euritox was lowered from 125 to 100mg. I was always told to take the meds in the morning as usual before having the blood test. Now I am wondering if that is correct? Thank you.

  5. Kim

    Is there a printable version of this that I’m just overlooking?

  6. Audrey Causton

    I have graves disease and I am gaining so much weight walk every day no bread or soda for month what else can I do to stop this weight gain

  7. Rhonda

    I was diagnosed with Hashimoto well over 12 months now. I took myself of medication as I felt no better and got really REALLY depressed, over a time the black mood went but over time my throat felt like a lump had formed so I went back to the doctors had more blood tests done with a stern talking from doctor as to why I stopped taking my meds. I’ve since gone back on Thyroxine it’s now 5 weeks on medication and already that nasty mood is back and it scares the crap out of me. So so black I cannot seem to get past it and doctor is no help, just you need these meds
    Help pleaseeeeeee does anyone else suffer these same feelings or has, is there others options

  8. Buba

    Hi 😊
    I have Hashimoto diagnosis for almost 3years. I am taking med.Letrox 100 now. Before my diagnosis i did feel tired, light sensitive, my eyes were swallowed.. now i feel lightly better. Still i feel the symptoms. So with my daily dose of Letrox (same as eutirox they said) i went on gluten free diet for 2 weeks and i felt AWESOME.but I live in Bosnia and Herzegovina, and there are no gluten free stores, then i got lazy on everyday cooking for my self 😖 anyway, now i am drinking natural homemade sirup. It is easy to make, you need geen walnuts(40 pieces) and honey(1kg). You cut them, put it in a bowl in dark for 40 days, stir them from time to. Then you drain it and store it in the fridge and take one spoon a day…maybe two chek it online..You can Google it it must be there, its also good for immune system and other stuff, but specialy for the gland. So, i am going back on gluten free from time to time. I really felt alive and full of energy. Good luck .. i am going to fallow this page and be my doctor but still i am staying on medications because if i didnt i might be worse and do more demage to my gland. But in the meantime i am checking my gland hormons, hopefully my dose will go down… I hope. 😁

  9. reatha Tillman

    Just diagnosed two years ago. Take levothyroxine 75 mcg. Never seems a priority to test often. Solution go to counselor to talk about depression. She shows me range and says im in there. Duh. T3 t4 tests and one other. But I know there r more available tests. Suggestions. I’m 67. Never been in bed this much my whole life. Had never been tested till I complained about tiredness. Taught high school 38 year. Raised four kids divorced.

  10. Rajan

    I’m a 30 year old male and I’ve been on thyroxine since I was 22. My dose of thyroxine is currently 175mcg and I take Vitamin D. I’m an extremely active person but have had fatigue problems, anxiety, extreme dizziness, joint pain etc. My cortisol levels are apparently normal, if not slightly high according to the endocrinologist and he says my body is creating enough free T3. If I am creating enough T3 would it still be wise to take NDT? I still don’t feel right but the endo was very much against me switching. Would it make my thyroid less efficient given that it is producing some stuff so to speak? Any advice would be greatly appreciated.

    • Janie Bowthorpe

      Rajan, now you understand why thyroid patients have so little respect for Endocrinologists. For one, just because your free T3 is in range, doesn’t mean you are optimal. Read this: http://www.stopthethyroidmadness.com/lab-values

      Second, the symptoms you mention clearly tell you that your treatment is not doing the job, because you now appear to have adrenal problems, as well. If your Endo is going by blood cortisol, that’s a problem. Because blood measures both bound and unbound, it can look high, while you are low, or vice versa. The only way to really know what your cortisol state is is to do saliva testing, not blood. .

      Third, there are simply far too many people who were on T4, then moved to NDT, and reported much better results.

      So yes, we’ve found out repeatedly that NDT is a far better treatment. But you may now have cortisol and iron issues to take care of due to being on T4.

  11. Dr. Matt Dixon

    Janie, awesome blog! Many patients do not want to go thru the hassle of changing doctors. So they can at least try to “change” their doctor. I tell my eyecare patients who are suffering that although they have an excellent physician, unfortunately the proper treatment of HT is not something they know how to do. Clearly, since levothyroxine is the number one Rx’ed drug in America, change will not be easy. Once patients are empowered to tell their doctor how they feel and how much they continue to suffer, change may begin to take place. However, many HT patients will have to seek treatment with someone new. Your coaching is really a huge help. This Eyedoc is on Armour and symptom free!

  12. Andrea Hardee

    I Had I’m Otis Disease. I was having lot of indigestion, burning in my throat and felt like I had a lump in my throat when my I swallow. Always diagnosed with Thyroiditis. Read article about HAYLIE I and had Dr. Test me for it. I was tested positive and treated for it. Now I actually feel normal.

  13. Carol Applegate

    I Have just had blood work done and told that my thyroid level was showing hypothroid. Scheduled for another round of blood work. After searching I have found that his may have been my troubles for several years but never tested. I was given this site from a family member. My problem is there is too much info for this tired brain. Can I get a simple “what to ask and know in the beginning”. I know this may sound lazy but right now I am. Thanks so much

  14. Molly

    I just had a runaround with both my doctor and an RE. I’ve had a laundry list of hypo symptoms for YEARS, and just last year started taking Raw Thyroid by Natural Sources. I have since, after arguing with doctors because while my TSH was in their “optimal” range, my free T3 and free T4 were in the very low end of normal, ordered the Thiroyd supplement from Thailand because they refuse to treat what they admit are “not optimal” free T3 and free T4 labs and a long list of symptoms, as they’re “not comfortable.” THEY’RE not comfortable, but they seem to think that _I_ am comfortable feeling like I’m too tired to do anything if I don’t take something to help my thyroid. Unbelievable. I will be happy to finally have a supplement that will help my thyroid and help me feel better, that will take care of my issues, and allow me to live normally again! I just wish doctors would be more receptive to listening to what their patients have to say, instead of ignoring them and insisting that they know best when logic defies their statements (such as the going by TSH argument. Logically, it truly makes zero sense to base the function of one gland on the hormone from another!)

  15. Valerie

    I am so happy to have found this site!! I am newly diagnosed with hypothyroidism (5 weeks ago). My TSH is 6.78, but T3 and T4 are within normal range. Now that I know the symptoms I suspect I have had it a very long time and did not know it. I was started on 12.5 mcg of Synthroid, which has basically done nothing for me. This week upcoming I get my levels re-checked. I work in my doctor’s office and hope she will listen to me if I ask her to try NDT, but who knows. I just want to feel better, I’m tired of feeling tired!!

    • Janie Bowthorpe

      We’re so glad you found STTM, too, Valerie. It’s all based on years of solid patient experiences and wisdom. Hope you can trust it, because though you may feel a bit better by raising that Synthroid, there is just too much reported patient experiences which show it’s not enough, and problems either are there from the beginning, or crop up bit by bit. Make sure you learn about NDT so you can guide your doc if she will agree to put you on it: http://www.stopthethyroidmadness.com/natural-thyroid-101

  16. Monica Koziol

    Once again I am at a place with a person calling herself “doctor” who says my “thyroid is fine” although she would not order any antibody tests and barely ordered a free T3w/ reverse T3 ( I am an 11 on the scale to 25). She was chomping at the bit to suggest I take some antidepressant drug to “take the edge off” and asked if I’ve made any headway with finding that endo through Medicaid. I told her no on both counts. She allows me to get a B12 shot now every week instead of every TWO weeks for three sessions and then wanted to put me on once a month! My B12 test was 150 in June. I said I want not only to feel better but for her to understand that I do not have a slow thyroid, but Hashimoto’s…to which I received a smirk. The last shot I got was delivered with a comment of “enjoy that”!
    I am 58 years old and feel like I’m in my 80-‘s…I care for my mother who has vascular dementia, SHE also has Hashi’s after pressing her doc to take the tests I recommended, he also realized that she has Hypopituitarism, after having been tested SINCE surgery w/TSH and T4 only as the TSH was at the lowest point of the testing scale. I pointed out that her brain suffered damage in surgery! I am unemployed for SEVEN long years since my mother’s heart bypass surgery in 08. I have been feeling like my energy is not coming back but in small batches that barely get me through a day, let alone the week.I didn’t have goiter, but I totally understand how Sylvia feels!!! My energy spikes up and down, and my doc said that I should be feeling better after seven weeks of B12 and wants me to be tested for EBV.( I’ve never had mono, or knew anyone who did), but I said ok and have paid for antibodies testing (BOTH) and plan to sneek THAT in to the testing results. I take 120 mg of NDT with 400 mcg of selenium (next month I’ll take 200mcg.) When I wake up at 4am I take an additional 30mg of NDT and fall back to sleep. My sleep schedule is disturbed and my doctor decided I should have a sleep analysis as well. Apparently it can be done at home. BUT she does not believe that the thyroid is my main problem, and wants me to be on BP meds as well. I asked her why she didn’t test my homocysteine levels..She said it wasn’t necessary and thyroid issues are beyond her scope as a PCP and she was at her three minute allotment of time to visit with me and off she went…until next week…I sit for 20 minutes. I get weighed in, my BP is taken immediately, and a few times because it has been so erratic, I sit for another 10 minutes and the great doc enters the room… and comes up with myriad tests for me to take, and things to do including diets, and salt restrictions, and Echo-cardiogram, and she’s off after 3 minutes! She is the closest medicaid accepting “dr.” available to me in a five mile radius. W/O your books, especially the latest one, and Dr. Mark Starr’s book, I would be doing everything wrong and would be on way too many rx’s that would enslave my body’s functions. I am going to try using lemon water with my NDT, or cutting the tabs in half. She gave me a temporary RX until I see an Endo because according to her, Armour Thyroid is “outdated” . I almost went into shock when I heard those words, because she took me right back where I started 18 years ago! I guess I just need to vent. I am fighting for both my mom and myself. My life is complicated. Thanks for reading and any suggestions are always welcome.

    • Janie Bowthorpe

      Any doctor who called Armour “outdated” is actually outdated herself. Hang in there. You’re with friends who understand! And by the way, sounds like 2 grains is underdosing you, thus potentially your BP problem and sleep issues.

      • Monica K

        Back in 2008 – 2009 when there was a NDT shortage, I was w/o Armour thyroid for a little over two months while mom was in crisis with her heart issues. I was still getting labs from HealthCheckUsa and since I was feeling so absolutely horrible, I got labs done only to discover that my antibodies…both, were incredibly high. So high they were highlighted by the lab at 3600 TPO, [cannot remember the other], with a note to see my doctor immediately. Currently, I am extremely deficient in B12 and have been receiving shots 1 x per week. AT MY insistence. This doc recommended once every two weeks for three sessions, then once a month. I said after two administrations that this protocol was not enough. I am reading your book and it is a valuable resource for me. For the progressive state Colorado claims to be, I have had the worst medical care of my life, and I am only a medicaid beneficiary for the last year and 6 mos. This was true for my dad, and my fiancee; both now deceased, and now for my mother. It is astounding to me the lack of care for Medicare and Medicaid recipients. But then again as far as the latter, I have been told that beggars cannot be choosy. So there you have it. Thank you for your kindness and your constant vigilance. I’ll hang in there.

  17. Kelsey

    I was born without a thyroid and have been on synthetic T4 since I was 15 days old. I am 32. Last Thursday I visited my endocrinologist to find out his thoughts/feelings/willingness to prescribe NDT. I do not like the way levothyroxine makes my feel (profuse sweating, jittery, tachycardia, shakiness). He said he strongly believes those symptoms would be worse on NDT. He stated he was open to prescribing NDT but first wanted to try altering my dose of levothyroxine by lowering it to 100 mcg for a month. (He lowered my dose from 200 mcg to 175 mcg last fall after discovering I was all of a sudden hyperthyroid). I am a hot (literally!) mess and told him I’ve been living in my body for the past 32 years and we have to, at least partially, start treating this based on my symptoms. I recheck my labs in 3 weeks and we’ll go from there. Until then I’ll be stalking this site for info.! 🙂

  18. Donna

    I have been fighting this battle with my Dr for about 4 years telling him there was a problem with my thyroid. In a matter of weeks I could go from 117lbs up to 139lbs and he said stop eating so much and exercise more. When I lose the weight again I don’t sleep, I am miserable to live with and severe anxiety attacks. I feel like it swings back every 3-4 months. I finally was diagnosed with Hashimotos and the endocrinologist is not going to treat me she said come back in a year. I thought well maybe my primary will do something now. I went to him the other day and he told me I am in the normal range on TSH so Hashimotos is not causing my symptoms. I was floored, I have every symptom there is and he said well you are getting older too things slow down. The endocrinologist said well your fatigue is low iron but my iron level came back fine. I have an appointment with a different endocronologist on Monday only because I forgot to cancel it. I am going to print the paperwork. I want a second opinion. About 8 years ago my primary at that time told me for future reference you test a false positive for Lupus. Could this have been when it started. They have thrown so many antidepressants at me to count. I seem to feel great in the mid weight range about 123lbs. I can run, walk long distance and I sleep. When the weight jumps up I can’t stay awake.

  19. Annomally

    Consider this:
    If you went out to buy a car, would you accept the salesperson telling you that the big giant scratch down the side of the car is within the tolerance for damage caused in shipping – and there is nothing they can do about it? Would you accept the lame excuse of the mechanic telling you that he found nothing wrong with your vehicle when it was in his shop, but you know well and good that there is a blue exhaust coming from the muffler? No you would not!

    Yet everyday, all around the world we listen to those educated in the study of medicine and health care and never really challenge the opinions we receive (and pay for as customers!), even though we know the information is not relevant or opposite of our unique situation. People – doctors PRACTICE medicine. They all go to school and obtain a base set of facts, but the person with the lowest score is STILL CALLED DOCTOR when they graduate. They never have to take another course the REST of their careers!

    Think of a doctor as a body mechanic. You would not trust the lame excuse in the first paragraph when it comes to your vehicle – why then must we accept the limitations of the education limits of doctors. They do NOT know everything!

    Taking control of your health situation sometimes means firing your doctor and looking for another one. That may be very difficult in areas with limited health choices, this is understood. You are the customer and your own advocate. Today we are all very fortunate to have the ability to locate online laboratories and testing kits what we can perform at home to help guide us, as well as research and support from others going through the same experiences as we are.

    When I got sick, I had no idea what was happening to me. Doctor Number One identified me with Graves Disease. I was extremely ill, unable to walk, with tremor, fatigue and more. I did radiation therapy and despite living in an area with bountiful heath options, I wound up over medicated on Synthroid, ( I had tried taking it every OTHER day, every fourth day…nothing made me feel better), quit the crazy heart medicine I did not want or need, gained 30 pounds in four months, water bloated beyond uncomfortable, fatigued, losing my hair, now with a horrible skin complexion, sometimes passing out at the drop of a hat, cried for no reason, after eating my body temp would fall to a teeth chattering 94 degrees, raging angry for no reason at all, and worst of all had just relocated back to my hometown where I started a new job with people who did not know this was not the REAL me! My friends did not recognize me, were genuinely worried and concerned for me – they had no way to help me. I felt like i was dying. I WAS!

    When I stopped the evil Synthroid after visiting new Doctor Number Two and seeing first hand the test result that confirmed I was poisoned, three weeks passed before I began to feel more like the old me. Yes you read that right – I stopped and it was the best thing I ever did up to that point.

    I was still sick that is for sure, but now I had regained my mental clarity (I did not realize I suffered with brain fog!) and my ability to reason and research – onward to find a new path. Although I cajoled and Doc Two did write my first NDT script (progress!), I let him go to find Number Three when he refused to run anything other than a TSH level on me. I saw and subsequently traded-up doctors each time when they refused to listen or consider the facts about ME that I laid out.

    I made sure I had enough medication (simply call the pharmacy and get them to call the doctor for a refill) while I ran my own online lab tests and found my cortisol to be askew, my adrenal system in fatigue, and most importantly, my iodine levels so depleted that there was no way I could synthesize ANY medication at all. Basic chemistry explains that your body needs iodine molecules to employ the thyroid medicine you take – not enough iodine in your body, then you do not get the full effect of your medicine!

    I added a barrage of natural supplements from Ortho Molecular to help with Iodine, water retention, stomach acid balance, and Adrenal fatigue. This concoction helped and I began to have more stamina. In fact, I raised my body temp three degrees – I am a normal 98.6 most of the time – HOORAY – METABOLISM kicked in gear!

    But…. it was clear to me that even with iodine supplementation my body was simply unable to convert T4 to T3 . I needed more T3!

    Now with Doctor Number Four I found that even with WP Thyroid (NDT) taken at night, I was unable to feel 100% better. Still a bit skiddish when I bring in my test results, I told Number Four that I believed the solution was to add Cytomel T3 in the morning. I started upping the dosages in small increments AT MY OWN DIRECTION reducing the 6 week sprints of blood tests and more, until I felt normal and viola – I am much better today.

    A word of Caution: Brand name medication is best. Did you know that differences in generics can mean a 20% variance in value between generic brands and this is considered within normal tolerance by the FDA!

    Despite my latest doctors urging, I simply cannot increase my WP thyroid because the increase of the T4 even so slightly, get me raging. Even taking it every other day, for some reason my body stores that stuff! If only RDP made an increment of 2mg then I would be set. She will be upset with me again but this is the best I have felt in a year. I even get up before the alarm clock, and can stay up after a long day at work. My energy is returned and my stamina too. I must be on to something!

    Its hard to push forward when you just do not have a lot of energy to begin with. The next time you go to the doctor and wonder if they are the right doctor for you ask them if they remember how cholesterol used to be measured. Do you remember? It used to be one number- a LEVEL and it was either HIGH or LOW. Today your cholesterol is broken into a PANEL of three or more values.

    Then ask this: Why then do you Doctor, continue to look only at one number: TSH LEVEL – when you can get a PANEL of many values that can help us both see what is really going on: free T3, free T4, Reverse T3, T3, T4 and TSH – throw and iodine in there for good measure too (that one is a urine test you can do at home!)

    Just ask and wait and see what they say. If the doctor does not consider your question reasonable and will not order the labs, say thanks and ask for your file. You will need that information when you see the next doctor on your list. (I started with the Best Doctors list in my hometown magazine – called them to ask if they prescribed NDT even before I made a visit) With the advances in telemedicine, you may be able to be treated by someone not even in your geographic area – all you have to do is ASK!

    Good luck to you – if I can find my own path back to normal (well as normal as I can get!) – you can too!

  20. Lucy Doll

    I have been on Armour thyroid for about 12 years. I recently had my tap water and urine tested for glyphosate (Organic Consumers Association/Feed the World’s first public testing). The tap water (which I don’t drink, but cook and make coffee with) came back negative. The urine came back off the charts with glyphosate. Since I mostly consume organic foods, I think it’s possibly coming from pigs fed RoundUp-Ready corn. I would like to hear from others about this. Other than that, I have no problems with Armour thyroid medication. I was on the synthetic for a very short time and did not like it.

  21. Debbie

    I am so glad to have stumbled upon this blog, It helps to know I’m not alone in my frustration. I was diagnosed many years ago with thyroid disease (hypo). In the past four months, my levels have fluctuated. I went from being hypo to hyper. I am totally exhausted, dragging to work (teacher), and coming home to fall into bed until the next day. I ache all over. Even the bottoms of my feet hurt. I hobble like an 80-year-old woman. Despite a TSH level of 125 and going to several doctors in tears, I have been told that I simply have to wait for the levels to adjust (yes, even by the endocrinologist). No one has offered a CAT scan or taken measurements of any of the other levels. I had to fight for a referral to another endocrinologist. My primary physician and the present endocrinologist were totally against this. The problem is I can’t see the new doctor for a month. What am I to do in the mean time? Do I have to pass out in a doctor’s office before anyone takes me seriously? Go into a coma? I just don’t know how I can make it another month? Any suggestions?

  22. Mandy

    Im just blazing at the moment reading all the stories of shoddy treatment of thyroid issues. Im in Australia and fuming that I have suffered
    for 18 years with an undiagnosed hypothyroidism. I have very strong family history of thyroid disorders, My grandfather, my Mother and Aunties.
    So I knew what to look out for and armed with a dozen symptoms of being underactive have been to every gp, endo for all this time begging for
    some relief. TSH within normal range. These doctors actually let you walk out of their office with a host of symptoms and actually get away
    without explaining what is causing it. The thing is if I said that my symptoms were Menopause related they would give me a script for HRT no
    questions asked, no blood tests either. I have actually got a script for HRT in this manner. HRT is a hormone treatment for a depletion in
    estrogen and Testosterone, so why the $#@% cant the doctors try you on a low dose of thyroid hormone if you are displaying EVERY
    hypothyroid symptom in the book???. I imagine it is because Doctors don’t get struck off for prescribing HRT unlike NDT. I wont go into every
    doctors story ect, but Ive been to a physchiatrist who cant treat me either on big doses of anti depressants. He just cant help me, nor does
    he believe I have a thyroid condition. “So why cant you treat me then” I said. He couldn’t answer me. He has even given me another anxiety
    medication on top of that, doubled it twice, still not effective. Out of desperation I saw a Natripath who hooked me up with a Dr in the USA who is
    actually treating me for sub clinical hypothryroidism. I have gained 40 kilos in 18 years. I am naturally slim, 57 kilos. 96 now and gaining. No, its not
    my thyroid. The amount of Australians that have to go to this medical practice is a travesty all because they are held hostage to a lousy TSH test
    results. It should be on Sixty Minutes because it is medical negligence!

  23. Joseph Davis

    I was taking 225 mcgs of Synthroid for 3 years.
    Beginning of this year doctor said stop taking it.
    I had been thru hell with gluten, corn ,dairy, I had lost 4 inches in my waist. I month later Dr. Put me on 100mcgs.I started losing more weight.. my liver, pancreas started hurting.I had an ultrasound found I had a 4mm stone in kidney.
    Every month Dr gives me grief filling my prescription. ..( have been at the low end of TSH.9 but felt I was on speed.my appetite has been ravinious. I eat and eat all day and am losing weight. So I have used old medication. ..cut pills in half and am down to 50mcgs…I went from 100mcgs to 62 mcgs to 50mcgs.
    Some side effects stiff neck, little swelling under eyes…I’ve been supplementing with iodine,glandulars,pituitary, adrenals,thyroid…my body wasn’t digesting fat..loose stool, I went on brat diet, taking bitters and ox bile. I’m wanting to go off thyroid altogether, but every lower dose my pituitary my head gets a little wonky. I’m an ex bodybuilder and my muscle cells not regenerating. ..but the lower dose I go I lift harder and my arms are showing improvement. I’m 57 yes old..I plan to confront my Dr. And get TSH.9 test.
    I think I developed a thyroid problem five years ago because of the stress and abuse of caffeine pills, after my mother my father in law my brother in law and two of my brothers, and the mother of my son passed away. Do you think that I can go off thyroid, and my body will adjust and adapt and then I might have a full functioning thyroid gland? Thank you in advance I written to other people online ,with never getting a response, very frustrating, have read books on Hashimoto’s and thyroid problems and a have been educating myself.


    This is all well and good, but WHERE ARE THE DOCTORS PRESCRIBING NDT? In a city of over 4.5 million people (Phoenix area) I STILL can’t find a legitimate practitioner with an MD, DO, NMD or Nurse Practitioner degree who isn’t a quack (Edgar Cayce medicine? Hypnosis? Chelation? No vaccines? And don’t get me started on homeopathy…), or a shameless shill front for overpriced supplements and “bio-identical hormones” ($3,000 testosterone pellets, $500 vitamins, $85 bottles of Arnica oil, anyone?), or combination doctors/med spas (get a facial peel and a nice mani/pedi wile we diagnose your thyroid!), or anyone who takes insurance. There has to be some truth to all these patient stories, all over the web. And the insurance is not a deal-breaker. I’m so miserable, I’d gladly pay cash to find a scientifically-based medically-trained doctor who’d simply be willing to run the full spectrum of thyroid tests, and dose to my symptoms with natural desiccated thyroid. But these doctors don’t exist, apparently. So far I’ve vetted over 200 medical professionals from various Facebook pages, many compounding pharmacies, and dozens and dozens of chat rooms. Let me ask you this: why do the only MDs and DOs who show up on these lists also require that you buy your NDT hormones and all your supplements directly from them? And why, for that matter, DON’T any of these doctors take insurance??? I think these are legitimate concerns. I can’t be the only one out there who would like to try the natural thyroid path to see if it works, but still has my feet planted firmly on the ground of provable, science-based medicine. Is anyone else running into this? More importantly, can anyone in the Phoenix area throw me a bone?

    • Janie Bowthorpe

      Marycat, that is a powerful comment and it’s passion is appreciated. And I have to say this based on personal experience and observation of others: the most powerful way to find a doctor to to prescribe NDT and still who still takes insurance has been to call every single pharmacy from closest and all the way out, and ask who prescribes NDT and is an MD, DO, NMD or NP who takes insurance.

      But to make sure readers see your last comment…I’m going to repost it here for you: CAN ANYONE IN THE PHOENIX AREA THROW MARY A BONE??

      She wants an MD, DO, NMD or NP and who also takes insurance plus prescribes NDT.

    • Clem

      OMG!!! You described EXACTLY my situation, but I live in Mexico
      I´m getting so tired of visiting doctors, endos, funtional, homeophatic, nathuropathic and its the same $%&#$. Most of them want me to do $500 tests, sell me lots of their own made supplements, they say NDT dosen´t work or worst, NDT simply doesn´t exist in my Country. I´ve been on levo for 8 years and no one has ever asked me for my antibodies tests…
      I´m sad of being sick….
      This saturday I have an app with another endo…. I´m taking all my exams including both antibodies and lots of questions for him

      This is a very though road, but I.m sure I will find my right path…. so as all of us


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