Tag: erfa

O 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 former 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: //www.stopthethyroidmadness.com/things-we-have-learned And perhaps the new Prime Minister, Justin Trudeau, will have listening ears?

• 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 was active for quite awhile 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.