Canadian Thyroid Patients disgusted, frustrated and angry…and suffering.

Screen Shot 2015-10-20 at 1.47.36 PMO Canada! Our home and native land!
True patriot love in all thy sons command.
With glowing hearts we see thee rise,
The True North strong and free!

Canada is a proud country situated just north of the United States with over 35 million residents. And when it comes to the nation’s healthcare system, Canadians have stated they prefer their public healthcare system over the US with a strong majority, ranging from 82% to 91%

But….in a Gallup poll more than a decade ago, there were different statistics when it came to the “quality” of that healthcare i.e. only 52% of Canadians felt “satisfied” with the quality of the care, and only 13% said “very satisfied”. 

So how do informed Canadian Thyroid Patients feel about their healthcare system and/or quality of care?

Understand that all Canadians, whether thyroid patients or not, obtain their healthcare via a publicly-funded system, which means most of the care is “free” when they get it! They obtain most services from private facilities or practitioners. In 1984 and under Pierre Trudeau, the government created federal quality standards of care, called the Canada Health Act. Granted, prescription drugs are not covered for most, nor is dental work or glasses. And there is limited coverage for one’s mental health issues or fertility issues. But on the positive side, all basic care is covered and free (including maternity care) and patients can choose their own practitioners.

So to find out how informed Canadian Thyroid Patients feel about their system and/or their care, I did an informal poll in the Facebook FTPO Canada group with four questions, below, and some of the answers. Note that by “informed”, I’m referring to patients who learned the hard way that treating their hypothyroidism with one thyroid hormone (T4) was not the way to go, that there are far better tests than the TSH lab test, that there are clear thyroid symptoms that are ignored, and that they, as patients in Canada, care about far better ways of doing it all!

1) For your thyroid treatment only…do you feel that you’ve gotten excellent care? Why or why not?

  • No. The Endocrinologist I saw was horrible…didn’t tell me anything about my disease (Graves) just presented me with “the only” treatment (RAI)…to be followed by the wonder drug, Synthroid (also told me there were no other options).
  • I wish doctors were educated on Natural Desiccated Thyroid (NDT). The dr’s i have talked to about it have no idea what it is and when they look it up on their tablets, they say stupid things about it. One said its for pigs not humans; another said you could get MAD COW DISEASE!! Another one said he knew of one person on it that died of a heart attack!! Wow they need to be in the know. Education is the KEY. I wrote to ERFA and asked them about visiting these dr’s for an information session which I know the Synthroid reps do. They answered that they have a team but only a few dr’s in Toronto have been visited!! I’m seeing an open minded internist but she has no idea what to do with me, so I see a naturopath for help. Its frustrating that dr’s won’t order the blood work for the ND’s to help diagnose as that way it would be covered by OHIP, when the ND orders I have to pay. Annoying to say the least.
  • We are sick and helpless and they are keeping us sick by not helping us………..
  • No, they look at paperwork and if the numbers are within the range the doctor says they should be in you are fine. They never ask how you are feeling.
  • Terrible care. For 8 years, no doctor would pay attention to symptoms because my TSH was “normal”, even though I was at the high end of the Canadian range, which in my area was still higher than what the US now uses. They told me I needed antidepressants, not thyroid treatment. When I did finally get a couple of results higher than normal TSH, they ignored them, and I wouldn’t even know about those results if we didn’t have access to our online test results in BC.
  • No and also yes. No – not from Endocrinologists or GPs. Yes – from a Naturopath (ND). Endos didn’t run all the right labs, or ignored the labs and my symptoms. Naturopath treated me like a whole person.
  • No. Too much reliance on the TSH. Have clearly been hypothyroid since the mid-80s, but didn’t get treatment at all until 2011. Even then, my TSH was “normal”, but I was desperate and had a dr. willing to at least try me on a low dose since my TSH was near borderline.
  • No. Completely untreated, despite TSH of over 16 because he gets hyper symptoms with the lowest dose of every med (including NDT) and doctors either refuse to believe him or don’t know/can’t be bothered to work to fix it.
  • No. The answer was always another pill rather then believing me when I said I felt it was my thyroid was causing issues. It’s better now that I have a good ND…but he is still limited and get tired of going back and forth between docs to get answers.
  • They care about their numbers. Depression, weight, aches, pains, fatigue, hair loss….no one fought for me and my health. I was treated for symptoms of all the above but almost felt like (with what they implied) it was my fault….lack of exercise, not perfect diet, single mom (at the time so depression was put on that) it’s criminal really what they let things get to!!!
  • No, too many think it all revolves around the TSH
  • No, I didn’t get excellent care – even though I have a goiter on the left side and several nodules, one over 10 centimeters, and a biopsy to check for cancer, I still am not getting treated because my TSH is normal.
  • No, GPs are terrible and I only found a couple that would prescribe NDT, but have no idea how to treat, so useless! Same as the above, only Naturopaths and a few functional Doctors!
  • I have found most Docs I’ve seen…..and there have been a lot…..are completely ignorant about thyroid disease. They rely on TSH and Synthroid and know nothing about conversion issues, iron issues related to thyroid, adrenal issues or much else. They also know nothing about NDT or how to dose and what labs they should be doing. My two Naturopathic docs that I have used (because I could not rely on a regular MD or even a so called “Specialist” who was an Endocrinologist) are very aware of these issues thankfully. It took me many years to realize it was actually my Doctor’s lack of knowledge that was keeping me ill.
  • [And some simple “no’s”.]

2) Do you feel Canadian doctors “as a whole” are informed about proper thyroid treatment, or not?

  • No. My GP was concerned about all my symptoms but had no clue they were thyroid related. Oh, and if the UBC locums I’ve seen are any indication of the future, it’s not getting better.
  • No, I asked about NDT and she did not even know what I was talking about, nor did she know about Cytomel.
  • Not. Also, it’s a very big struggle to get anything except TSH tested.
  • I can’t really say “no” as I don’t think the issue is actually education. The bigger issue is that there is essentially only one insurance provider for each province – and since that provider is the gov’t the doctors are restricted in how they can treat. So even those educated or who want to go outside the guidelines aren’t able to do so (not like in the US where they can just be outside of all networks).
  • No. Just like drs in every other country, they’re all riding the utterly useless TSH and Synthroid train.
  • Hell no…..otherwise we wouldn’t be requesting ndt or endo referrals, blood labs and such. They made me to think it was in my head.
  • Not informed at all.
  • No, they are quite limited in their knowledge, it seems. 3 I haven’t found a good doctor yet – I’m in BC 5. I would like to see doctors be freed up to treat their patients based on their symptoms and not TSH.
  • [And some simply “no’s”]

3) What kind of doctor (specialty) in Canada do you feel gives you the best care as a thyroid patient..even if it’s not perfect, but better than others?

  • GP. I have seen him for over 20 years and he was at least willing to try something different and order the needed tests. He looked at the research I brought him and has even high-fived me about the progress I’ve made.
  • I finally found a naturopath that actually attempts to solve my issues. And he respected my wishes in terms of using natural thyroid.
  • Naturopath – unfortunately they can only prescribe thyroid meds in BC, and in Ontario once they can all get through the exam. See #2 – they can actually be outside the usual network.
  • Private integrative MD $$$ paid by cash out of pocket
  • GP
  • Maybe an ND? (still looking)
  • ND has more knowledge then ENDO/GP
  • Haven’t tried others (others said this)

4) For those who have experienced BOTH Canadian and US healthcare as a thyroid patient only: what did you notice about either?

  • Haven’t personally experienced but know many, many thyroid patients who do – and freedom of choice seems to be the thing Americans have that Canadians don’t. Also a LOT easier to order your own thyroid meds in the US.
  • [None of the other respondents have experienced both systems. Maybe you have who are reading this and can comment??]

5) What would you like to see changed in the Canadian healthcare system as a thyroid patient?

  • Better training. Make it less hard to get NDT…in fact, present that to patients as an option. Make all the tests available to everyone without fees so that we can correctly manage our disease. An understanding that as healthy well treated patients, we have much more to contribute to society as a whole…maybe if the ‘powers that be’ understood that, we could get better treatment.
  • I question the fact that we Canadians only have ERFA thyroid as an option as to the U.S. Having a few NDT manufacturers to chose from. In terms of our healthcare, yes we have free healthcare but since learning about NDT, I’ve had to put out hundreds because it seems the only ones willing to listen to our plight is functional or ND’s. I would love it if MD’s and endos alike stop looking at us like we have 3 heads and listen to out symptoms and relate them to thyroid.
  • There are epidemic number of people with this disease. They need to have specific clinics, so care is more regulated and specific
  • Better understanding of hypothyroidism and its treatment.
  • Discarding of TSH as “the test” for hypothyroidism.
  • Better understanding of Hashimotos, and readily available testing for it.
  • Doctors trained to give a full thyroid panel where the patient’s symptoms are ongoing and they cannot identify the cause.
  • Doctors trained to UNDERSTAND the full thyroid panel, hormone ratios, interactions with iron and ferritin.
  • Doctors educated about how some patients don’t correctly convert T4 to T3 in sufficient amounts. Removal of the vilification of NDT – let the patient choose, and try an alternative if the first choice doesn’t work.
  • Everything. I did not receive any help with my thyroid except given Eltroxin, a T4-only med. The doctors do not know anything about the thyroid and trust the lab’s TSH only. I have not seen or been offered to see any Endo and this has left me in years of depression, bone deep fatigue for years -approximately 20 years. There is no one to turn to and have to travel if I find one.
  • No more reliance on TSH, especially when initially determining if someone needs treatment and when they are being treated by any T3 containing meds including NDT.
  • None of them seem to get that a suppressed TSH is normal when treating with T3. Understanding that a lot of people with hypo even if they are deficient in T4 also can’t convert it to T3 and Synthroid treatment won’t help.
  • Most don’t even seem to understand T4 is useless until it is converted. For most people NDT or T3 only meds should be the first line treatment!
  • Even veterinarians don’t rely on the TSH test! Noticed some doctors of psychology seem to recognize TSH is an unreliable test, so not sure why MDs in Canada are relying on it. Treat according to symptoms with alternate testing to support care that is proven and helping over 300,000 thyroid patients better than current. Note that drugs in Canada not being tested for ingredients or standards say CBC. Cost of testing and treatment needs to be subsidised for Canadians.
  • Free T3, Free T4 and antibody testing as standard for diagnosing and treating with RT3 testing easily available. And it would be really nice if doctors actually *understood* how to use these tests.
  • More understanding, testing and treatment of adrenal issues which are related to thyroid issues. I suspect my husband’s hyper with treatment reaction is due to adrenal issues, but the dr. refuses to test.
  • That ND’s were brought in more for my health care. That Endos/GP’s would actually do some research and learn more about the importance of T3. That Health Canada wouldn’t tie GP’s to sticking with guidelines for treating EVERY patient the same since we are all different. That doctors would get educated that diet plays a huge role in thyroid health. That doctors would understand that my issue is an Autoimmune  disease and there are steps to calm the immune system down.
  • More teaching of symptoms and finding out what works so we can get back to being functioning people again.
  • Options. And to be taken seriously. They obviously care about personal client health…..act like it.

And the summary we can conclude from Canadian Thyroid Patients?

Granted, this was a small and informal poll. But it does give the strong impression that

  1. Informed Canadian thyroid patients are disgusted, frustrated and angry…and suffering.
  2. No matter how great one’s national healthcare system may seem to be, “free” doesn’t equal “quality”, nor do “strong outlined governmental principals” equal “wise treatment protocols”…as we’ve seen with thyroid issues and thyroid patient care.
  3. Canadian healthcare practitioners, just like any other country, need a far wiser understanding of the following:
  • the use of Natural Desiccated Thyroid or T3
  • why using just the TSH is inadequate
  • which lab tests really are most important, like the Free T3 and Free T4
  • how lab results have nothing to do with simply “falling in the normal range”
  • how symptoms are extremely important
  • that it’s not just “all in the patient’s head”
  • to take the patient experience more seriously
  • why Synthroid has been quite inadequate for most…sooner…or later.  
  • understanding how common adrenal issues (adrenal fatigue) can be, and how to properly treat it

It’s all right here, Canadian doctors, if you are willing to listen to the wisdom and reflection of patients: And perhaps the new Prime Minister, Justin Trudeau, will have listening ears?


** Do you live in Canada?? Leave your own comment below this post! (If you are reading this via an email notification, do NOT reply to email. It goes nowhere. Click on the title to get to the actual blog post and comment. 

** Canadians are welcome to join the FTPO Canada group on Facebook.

** Canada’s own version of Natural Desiccated Thyroid is made by Erfa. But unfortunately, patients have reported that some batches have resulted in a return of symptoms. This blog post is still active about that problem with certain batches of Erfa!!

**Come on over to Like the STTM Facebook page to get daily inspiration and information from the FLAGSHIP of worldwide patient experiences and wisdom from which all other websites and groups borrow. lol.

40 Responses to “Canadian Thyroid Patients disgusted, frustrated and angry…and suffering.”

  1. S. Russell

    I would like the Canadian Labs to revise the “normal” range for the TSH test as the current .5 – 5.0. it is just too high, so many of us go untreated / Canadian med schools must offer more comprehensive training on Thyroid issues; provide their students with the list of potential symptoms so when we do come it they think — thyroid — before they offer us anti-depressants, high blood pressure medication, statins / Learn the importance of requesting all 4 iron labs for women and knowing the optimum levels / Routinely test both Free T4 & Free T3, thyroid antibodies, Reverse T3, and be able to recognize optimum levels / Don’t give us prescriptions for PPI’s when we most likely have low stomach acid / Doctors need to realize that T4 medications should not be their first treatment choice & that NDT has proven (in over 100 years) to be far more effective in eliminating symptoms of hypothyroidism / Canadian doctors need to know that when we take NDT replacement thyroid hormones orally our TSH is supposed to be suppressed — our pituitary gland does not need to signal our thyroid gland to make hormones (and medically suppressed TSH from natural desiccated thyroid meds does not cause heart issues)

    • Kim

      Good article Janie. I can relate to alot of this. The majority of doctors I’ve seen think thyroid disease is a very minor health issue. Lol.
      I just wanted to point out that the healthcare in Canada isn’t exactly free. We pay for it through our tax system. The good thing is that in an emergency or if you have to see your doctor regularly, a patient doesn’t have to worry about paying upfront in cash.

      • Janie Bowthorpe

        Hi Kim. Yes, that’s why in that sentence, I explain that it’s “publically funded”….so, no, it only seems free since you pay nothing at the time of the visit…but it’s not.

    • Suze

      The current lab range in my lab is 0.27 – 4.2 for TSH (Vancouver BC). It has changed several times. In 1992 – 1997 it was 0.5-5.5 and 0.38-5.5 based on my notes. Maybe different labs use different ranges? Obviously 4.2 is still too high. Plus the TSH is useless. I felt the same with a tsh of 12, 30, or 5 really. I wish there was a better test. When I felt my best, the free T3 was over the top range. How useful are any of these tests?

  2. Bonnie


    I live in Canada and after reacting to the fillers in Erfa, (slightly nauseated, slightly dizzy and sores in my mouth) I asked my doctor to have Natural Desiccated Thyroid compounded for me and the Pharmacy did that using Desiccated Thyroid USP but I reacted to the Capsule (Avicel). Then they used Magnesium for the filler and Magnesium binds to Thyroid so that was changed to Glycine as the filler. I’ve been using this now for close to 4 years and thankfully it was figured out finally. And with the help of the Natural Thyroid Group and slowly increasing (after posting my bloodtest results) I’m very happy at 2 grains.

    • Dee

      I also react very badly to the new ERFA Thyroid formulation so I’m looking into compounded. I also react to many fillers, as well. If glycine is the filler, what type of capsule are they using for you? Is it a gelatin cap? Thank you.

  3. Lynda C

    My daughter has done even better on T4/T3 treatment then Armour.
    All doctors in both countries need education. From the grace of God we found we found a great endocrinologist in Orange county.

  4. Mary Richards

    I went to my doctor today. She said that Erfa Thyroid was not scientifically studied, therefore would not be liable for writing the script. I think I have had a bad reaction to my last refill of eltroxin, she would have none of it, referring me to the local endocrinologist. If you have a scientific web site I can print for her to look at, it would be much appreciated. We need thyroid specific clinics in Ontario, like Windsor, London, Toronto, Ottawa. If they can have them for the prescribed drug meth heads, surely they could have them for people trying to live a normal life with low thyroid.

    • Mary Richards

      I went to ask my GP for the second time about NDT, she said that no endocrinologist or doctor in North America supports patients taking NDT, and don’t ask her about it again. Something about if she wrote the prescription she would lose her license. So once again, I will ask if anyone in southwest Ontario knows of a doctor or endo that will write prescriptions for NDT, not naturopaths, I don’t have hundred of dollars for testing. Thanks!

      • Janie Bowthorpe

        Mary, the comment by your GP is ignorant. There are now many more practitioners who prescribe NDT (though they still need to learn how to raise it). I would recommend joining the FTPO Canada group: Note that you will need to have either your friends list or comments showing. It’s the only way they can weed out spammers from good people. You can close it all back up after joining.

    • maureen woodrich

      Hello Mary Richards
      I am in Windsor Ontario and am really at a very dark time in my life..desperate to find a knowledgeable naturopath or doctor who will prescribe natural dessicated thyroid…do you know any in this area? thanks

  5. SivCath

    Norway has similar healthcare as Canada, funded by tax and us as taxpayers. It provides “free” healthcare for its citizens.
    We also experience the same situation around thyroid issues as what is mentioned above by the Canadians answering the survey. The training and knowledge of the doctors seem to be the same as anywhere in the world (even in the US), and it lacks common understanding of TSH vs FT4 vs FT3 – and they believe NDT is humbug and “new”, not tested drug. Most of us Norwegians who get to know about NDT we get this from private doctors. These doctors you have to pay in full. The prescription NDT (Armour Thyroid, Thyroid produced by Erfa or Nature-Throid) also has to be paid in full when getting it from the pharmacy – where prices for 100pcs 120mg Armour might be as expensive as 120 – 140 US@. This gets really expensive. Luckily we also have Thyroid (from Canadian Erfa) which gets more affordable. But still… in 2015 with “worlds best healthcare” (as we Norwegians often claim) we still have to struggle to be heard, be treated and to get medicine which keeps us working and living. Its a shame… question is, what can we do about it? I guess sharing STTM page is one big step forward 🙂 But are the docs reading it?

  6. Juli Fialkowski

    These are the same issues found in the USA! Unless you go to a no-insurance accepted naturopath, the endos are tied to the TSH value alone, regardless of symptoms. This is an issue of thyroidism, not the US vs Canadian medical practices. Government pervades with insurance companies in the USA to provide only what they deem as appropriate.

  7. Carol Egerter

    I am from Canada as well and have had hypothyroidism for over 12 years and am on my 3rd endocrinologist!! The first two were marvelous but sadly retired!! The first one introduced me to Cytomel (T3) within the second year of my diagnosis ALONG with Synthyroid as my symptoms were not resolved!! He did try me on NDT but at that time it was not what my body required. The second endo believed in the same standard of care and kept me on the same medications. For over 10 years I was dosed at 112 mcg of Synthyroid and 25 mcg of Cytomel and feeling that it was doing the job…………but low and behold……..once they retired I was in for a battle!! My ‘new’ endo does not ‘like’ me on Cytomel but will keep me on it if ‘I feel I really need it’!!!! Seriously??!! So now she ‘allows me’ my Cytomel but cut back my Synthyroid!! I am soooo tired but she is INSISTING it’s not from my thyroid meds!! So…..I up my Cytomel until I get the results I need………then my T3 goes up too high!! UUgghhh!! My GP will not prescribe these meds so I will have to find a new endo if the battle continues!! And in Canada it could take me 6-12 months for that to happen……if anyone is taking on new patients!!
    And note…………when getting blood work…… NOT take your Cytomel BEFORE the blood test as it influences the TSH & T3 levels within minutes.
    And just recently the popular lab in Ontario changed the references for the T4 levels. They used to be between 9-23 and now they are between 9-19!! Less room for movement when changing doses!!
    Keep fighting!!! Thank you Janie for setting up a wonderful place for us to vent!! xoxo

  8. kristin

    Canadian health care pre-dates 1984 and the Canada Health Act. That is the modern name of law for practices that had been in place since the early 60s. The 1984 bill formalized what had been in place and enshrined the five principles of universal health care: universality, portability, accessibility, comprehensiveness and public administration. Health care in Canada is legislated federally but administration is done provincially. Patient experience has little to do with the federal legislation and much to do with education and training of physicians which is a provincial responsibility. Educating physicians needs to happen at the medical college level by meeting with the colleges or by meeting with the administration of public health care which is done by the provinces.

  9. Ann

    In Canada here. Every time I get my blood tested the doctor says my results are normal. It doesn’t help that I’m easily confused under pressure (10 minute appointments where the DR has one foot out the door) and I can’t really explain or convince her why I believe it’s thyroid related despite the results. This is the second doctor that has passed me off as a hypochondriac and only wants to give me antidepressants now. I went to a therapist to see if it really was in my head, but I still feel sick, achy, and tired every day while my GP thinks I’m fine. She said she doesn’t want to see me once a year anymore because I’m ‘fine’. I’M DEPRESSED BECAUSE I’VE BEEN SICK FOR 15 YEARS AND NO ONE WILL TAKE ME SERIOUSLY! I can’t live my life, study, or start a career because of this fatigue and pain! I don’t know where to get help anymore so I sit at home every day, isolated and having to rely on my SO way too much.

  10. Myriam

    I feel defeated. Every doctor I have gone, same result. No one has been willing to even hear, all get offended when questioned, as if it is written on stone.
    I have just found a younger female doctor in the area I now live. It took me 2 yrs. She does it by the book. She looks at me as if she is considering to keep me or drop me.
    I inform myself, I learned from the greatest: Mercola, Suzy Cohen, etc. but without the doctor to prescribe the right test, the right medicine, we have nothing. Our reality is that the doctors
    Meanwhile, I refuse the synthroid altogether, as it is awful, and the doctor that prescribed it, found that I was being unreasonable when I complain about lost of hair, got fat for the first time in my life, my breast look I am milking twins now, new pain with that too in my back.According to him he was trying to get me back to health never mind my figure…how stupid is that, even with my now foggy brain,
    I take the selenium, zinc, when I remember the iodine (lugol solution) as I am not sure how much to take and Magnesium, B12 sublingual and D3. I started now with vitC 1500mg. I eat 5 days a week wild salmon, only eat at home and mostly organic, still I have reasons to complain, it is expensive,I am exhausted. It will be so easy to work with a doctor until the right amount, with a pharmacy that will compound what I need. Instead I do not sleep well, I am deteriorating not so much by age but by this disease .. When I was on my late 20’s I got fybromyalgia, of course then, it was not known. I ruined my stomach taking pain killer to survive the working day, house and kids. It was in my imagination according to the doctor. My husband accused me of being addicted to tylenol. Ended in the hospital as a side-effect. Voila! One day it got a name: fybromyalgia. Now I know that they are related…How about that. Am I living in the wrong century?

    • Janie Bowthorpe

      Myriam, well written and so many of us identify with your frustrations about doctors. We live in a society that pushes us to ONLY listen to our doctors, as if doctors are omniscient about thyroid disease and all related. Sadly, they are far, far from all-knowing and so many of us found that out as we got worse and worse. And this is exactly why STTM was created. Today, there are some doctors listening better to patient experiences and wisdom as expressed on STTM, but we have to do our homework to find one of them (, and even with those, we have to be willing to direct them on certain areas ( The bottom line is to find a doctor willing to LISTEN. Hang in there. In the meantime, you might want to google ThyroGold, and you’ll need to see if your cortisol is where it should be, as well as iron…we have learned.

  11. Susan Elizabeth Siens

    I started reading the replies to your survey of Canadian thyroid patients. What are we to do about this stupidity? I fortunately have a nurse practitioner who listens to me and fills my request for a three-grain prescription (I am probably undermedicated), but the doctor in the same practice saw my bloodwork when my practitioner was on vacation and called me up to tell me I was going to have a heart attack (due to practically nonexistent TSH). She didn’t even turn the page to see the low-normal T3 and T4 results. Jeezums, I learned how to turn pages before I started kindergarten!

    I have decided if anyone ever tells me they are going to reduce or refuse my thyroid meds, I will simply threaten to sue them for medical neglect (which I suffered for decades anyway). I have found that the threat of suing is very effective with so-called health care personnel – it seems to be the only language they comprehend. However, I think there needs to be a massive lawsuit to END this willful ignorance and the consequent suffering of millions of thyroid patients. Pursuing this one patient at a time is only so effective, and is not effective at all if you have not yet learned to be very assertive with people who call themselves doctors. (I refuse to call anyone a doctor who cannot diagnose glaring symptoms.) It has taken me decades to learn to be assertive, decades of medical neglect and ruined health.

    It is way past time to end this phenomenal stupidity! Does anyone have any ideas on how to engage in group action?

    • April Graham

      I totally agree…just joined a few months ago, live in Saskatchewan. Perhaps if we could come together and even get some legal advice on how to proceed? I create websites for a living, so would offer my services to get started.

    • Marion

      Susan well said I’d be right there with you..
      Been suffering for almost 5 years

  12. Suze

    There was nothing wrong with my endocrinologist. He let me try everything I asked for. He read my detailed notes of symptoms every 3 months and told me what to take to tweak the dose. But I just stopped going to see him because nothing resolved. I have deteriorated since the bad batches of Erfa and the synthetics are not curing me. My GP referred me to a new “young” endo and I didn’t even ask him to. I had given up and was just going to use what made me feel OK years ago (100 T4 + 10 T3). I admit I have some hope that maybe the new dr. will have some idea about my hypo/hyper swings.

    My hatred of the medical treatment of thyroid is not a Canadian thing. They do it in the US also. It’s the radiation to kill the thyroid. I have never recovered. I wish I took the antithyroid pills indefinitely. I read that people are given that as an option now. Masses of people are not coming down from leukemia from it are they? That was the threat I was given. Well RAI is not safe and effective. It made me permanently disabled. What I’m saying is no dose or type of pill ever made me perfectly euthyroid. I am so jealous when I read that Sofia Vergara had her thyroid removed and takes 175 Synthroid daily and feels perfect. If I took that much I’d explode. That is a massive dose that my body can’t handle. Why the huge variation if both of us lost our thyroids? I think it is somehing thr radiation did to me.

    My various doctors in 24 years of this thyroid thing have tried their best based on what they were taught. I do blame them for not reading the current studies. Everyone should know that if a patient continues to suffer, the treatment is wrong. No one ever agreed to test for reverse T3 or antibodies or anything else. I need answers and I cannot afford to pay for my own independent tests. Personally I don’t think the thyroid function is understood. Endos seem to specialize in diabetes. Do they understand that either?

  13. Jennie

    I saw my GP for many years, and only ever got synthroid. I would love nothing more than to try Nature-Throid, but sadly, we can not get it in Canada.
    Now, for over a year, I’ve been paying out of pocket to see a “specialist” in Edmonton. And while he is very good and thorough, I am still completely symptomatic. And only seeing him every 6 months is keeping me rather sick. And because he wanted to start me “from scratch” and dropped my dose to a very low one, I’ve gained 40 pounds since seeing him.
    I just wish more doctors were interested in treating the person and not the labs, were more knowledgable with the swings that hashis patients go through, understood the gut connection more, and we had more options for meds!
    I feel like I’m doomed to be cold and tired and fat forever, in spite of all of my efforts, and all of the money I’m paying.

    • Janie Bowthorpe

      Jenny, see if you can find a Naturopath to put you on Erfa, the Canadian brand of NDT. Or join the Facebook FTPO Canada group for feedback on how to get NDT. 🙂

  14. Franca

    I live North East of Toronto Ontario and suggestion on a good Endocrinologist. I was initially seeing one guy and he almost killed me. Now my GP is treating me. I haven’t had an active thyroid for 6 years now. Currently I’m on Levothyroxine. My problem is that I just can’t seem to lose the weight and i think that switching to something more natural will help but i need to find a good DR. I would love to hear any suggestions. Thank you.

  15. Brenda

    Prescribed Eltroxin a year ago for muscle weakness related to a thyroid condition. I have suffered for a year with severe chronic pain/stiffness in my hands and feet. A few weeks ago, I missed a couple of days of Eltroxin and I noticed a decrease in pain. This led me believe that there was a link to my chronic pain and Eltroxin. I have been off Eltroxin for 5 days and OMG, the pain/ stiffness has decreased significantly. Have I suffered for a year because of a side affect of Eltroxin? I am only 51 years of age and I felt disabled for the past year. I lost a year of my life. If you are suffering severe chronic pain and on this medication. Test going off the med for a couple of days and see if your pain decreases. If it does, see your doctor to discuss other options.

  16. Shelly

    In Canada and not happy. I’ve bought both your books. Are any of these doctors in Stop The Thyroid Madness II in British Columbia? They should put together a list of Drs they know prescribe NDT and those Drs do the same. perhaps we would come up with a list so more could find affordable treatment.

  17. Anna

    Speaking of Canada…Erfa Thyroid and its alledged reformulation. Janie, can I ask if you are still on Erfa, or have switched to another brand? I am on Erfa and so far, so good, but I have no idea if it will remain that way given all the complaints in recent months…

  18. Esther

    Dear Janie ! Can you share with us what type of NDT you are on now? I am still on ERFA and would like to switch … Did my homework ,thanks to you, you are my HERO, decided to go for Thyrogold…
    But One of the ingredients in Thyrogold is Coleus Forskohlii interferes with one of hepatic enzymes which encrease fat deposition in the liver. I am already with fatty liver. So this is not for me .any advice ? I also would like to experiment with Cytomel ,just want to add small dose to Erfa. Maybe it will help to my hypo symptoms. Any advice regarding slow release of T3? Or just regular Cytomel?
    Thank you
    Will wait for your respond

  19. Hadassah

    Janie ,I would like to know PLEASE I was just lowered with my synthroid from 125mcg to 100mcg and added 5mcg cytomel I’m on it a little over a week . My basil body temperature is barely 97.0 Which Med . do I need to raise synthroid or cytomel to raise my basil body temperature .

  20. Hadassah

    Dear Janie , I want to thank YOU JANIE for all that you do for all of us with thyroid issues . You inform us empower us and support us with all our thyroid issues . And YOU JANIE HELP to ease our burden that we have to deal with day in day out that DRs. can’t won’t do for us . Only the very few who care to even understand what we go through are far and few . THANK YOU FOR “STOPING THE THYROID MADNESS” . Janie , how and when do I increase the 5mcg cytomel during the day ? I take my Synthroid sublingually just before sleep. And 5mcg cytomel sublingually at about 6:00 A.M. When do I dose the rest (how much at a time) that it shouldn’t interfere with sleep ? I mean to say what’s the latest time ? Or do you have a better way of dosing . I just do it that way because I take my vitamins for breakfast and there is a few hours apart . My Iron ,calcium the zinc I take with dinner away from the Iron I don’t know if that is right ? THANK YOU FOR BEING YOU !!!!!!!!!!!!!!!.

  21. Hadassah

    Dear Janie , I would like to share with you my blood test results ,
    Magnesium RBC 4.93
    Vit.D 25.2
    Vit B12 1184.0
    TSH 1.931
    FreeT4 1.3
    FreeT3 0.7
    Reverse T3 21.1
    So now based on the results my DR lowered me to 100mcg Synthroid from 125mcg . and 5mcg Cytomel . And have to return in six weeks for retest .
    I am still open to changing to NP THROID or NATURETHROID . All this was due to my arguing with my Dr . that I got this far .( THANKS TO YOU JANIE) I feel better breaking up the 5mcg Cytomel half in the morning and the other half in the afternoon . I was also wondering does one need to supplement with DHEA, PREGNENALONE, PROGESTERONE for hormone support for menopause . I have heard that some use MACA for support instead of hormones . Is that correct ? And who puts out the best MACA . Does MACA interfere with thyroid medication ? Looking forward for your feed back .

  22. Camae

    Well I just started my research into my Thyroid health. I had a thyroidectomy at 31 and I’m now 36yr and I haven’t felt “right in years. On Synthroid about 175mcg and all my test come back perfect. I would like to try T3 but cannot find a Dr. that will really listen to me. I was told its not my thyroid and its a manifestation of my depression that is causing me to feel unwell; I’m tired, sore joints, zero energy and overweight. I just find it odd that I wasn’t depressed before, beyond defeated at this point. Does anyone know of a Dr. in Edmonton that has been open to various Thyroid treatments?
    Thank you!


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