Gisele’s thyroid therapy journey

Shouldn't our health care systemThis guest post is authored by Gisele Gautreau, a Canadian thyroid patient who has given us permission to share her image and story.

Gisele:

For those questioning the plight of thyroid patients in this country, the following is my story:

I’m in New Brunswick, and I was diagnosed with a thyroid autoimmune disease called Hashimoto’s Thyroiditis in 2014.

I had not been feeling well for 8 years. My TSH was checked every year, the result would always fall within the accepted Canadian range, so I was considered “normal.”

The last few years before diagnosis, I couldn’t exercise anymore. I had been exercising regularly since 1983. Any physical exertion would make me nauseous. I was brain-foggy, achy, cold, and exhausted!

I remember my doctor checking my pulse during a visit. It was around 56 bpm, and she exclaimed with great enthusiasm that I had the pulse of an athlete! Couldn’t she see I was sick? I felt like I’d been hit by a train and most likely looked like it, too.

When my TSH test result finally increased to a level out of the normal range at 6.7 in the fall of 2014, I was prescribed Synthroid, with the promise that I would feel better in no time.

I did get a little energy boost 6 weeks later, but within 4 months, I was back to feeling exhausted and miserable.

I had been doing my own research and was reading that additional blood tests, especially Free T3, should also be checked.

After a year of begging for this test, my family doctor half-heartedly agreed, stating that “after all, you pay your taxes.” If only this test would’ve come with the promise that my family doctor would know how to interpret the result. It came back low at 4.9 pmol/L. The accepted “normal” reference range for that laboratory was between 4.3 and 8.1 pmol/L. I was within the range, so it was considered normal again.

My family doctor was dismissing my symptoms at this point, so I knew I needed to find someone else.

I paid a bunch of money at a clinic in the area that came with great reviews, but unfortunately, they were lacking in knowledge regarding thyroid hormones.

After two years, I was still trying to make my family doctor understand that I still wasn’t feeling good on what she was prescribing (Synthroid). I was not only still exhausted but now super anxious at the same time. I was a mess! I couldn’t function like a normal person.

With the research I had done, and with my one Free T3 result, I suspected I was not converting T4 to T3. I mentioned this to my family doctor who poo-pooed all Google research and said that her treatment was the only treatment she was allowed to give, and that she was bound by New Brunswick provincial standards. All her other patients on Synthroid were fine and I should be fine too! 

Soon after, I heard of a doctor who had opened a private practice and specialized in hormones, including thyroid hormones. At my first appointment I described my symptoms and gave her copies of my blood tests. She suspected that my T4 (Synthroid) was not only NOT converting to T3 (the reason I was exhausted), but was instead converting to Reverse T3, which was the reason I was so anxious. She said the only medication that would clear this Reverse T3 from my body was T3 medication. She prescribed Cytomel (synthetic T3), and told me to start it right away, saying that I should feel better in a few weeks. She ordered Free T3, Free T4, Reverse T3 tests, and several others. As suspected, my Free T3 and Free T4 numbers were too low for health, and my Reverse T3 was too high.

With Synthroid + Cytomel, I began to feel a lot less anxious a couple of weeks later. I also began to have some energy. I had forgotten how nice it felt to feel good about getting out of bed in the morning.

She kept me on a combination of Synthroid/Cytomel for a year, but I still had problems. I was better, but I often had slumps of exhaustion, and I was losing a lot of hair.

I was reading wonderful things about Natural Desiccated Thyroid (NDT), so I asked if I could try it, and she agreed.

I can’t describe enough how my life has changed since being on NDT. I have my life back after 12 years of misery!

I’ve been on NDT for 3 years and doing really well. I take good care of myself through diet and exercise again. My hair loss had stopped and is actually growing again. My husband says my personality has returned. All in all I feel really good.

I’m keeping up with research and try to help people who have also been diagnosed with thyroid disease.

A few months ago my heart sank when I received an email from my private doctor stating that she was retiring. I think she was pressured, similar to other doctors in this country because of their unorthodox thyroid treatment.

This pressure originates from Provincial Colleges of Physicians and Surgeons backed by The Canadian Society of Endocrinology and Metabolism, and Choosing Wisely Canada with their strong push to de-legitimize important thyroid blood tests. This unorthodox treatment consists mainly of requesting a few more blood tests than just TSH and prescribing T3 or Natural Desiccated Thyroid, which is approved by Health Canada and sold by ERFA Canada as a brand called “Thyroid.”

Some people feel great taking Synthroid, and others prefer Desiccated Thyroid instead.

It all depends on how one’s body responds.

We are all unique and shouldn’t all be treated with this one-size-fits-all approach.

Preventing doctors from treating thyroid disease properly is devastating to me and countless other patients who are now feeling healthy.

More than likely, if this trend continues, we will all have to go back to our family doctors who only prescribe Synthroid.

There is something really wrong with thyroid care in Canada when one has to suffer for years because doctors–and let’s be honest, endocrinologists (after all, they make the rules)–don’t know how, and refuse to learn how to treat thyroid patients effectively.

Doctors will freely prescribe antidepressants. If one type doesn’t work, they will gladly prescribe another. But they won’t try another Health-Canada-approved Thyroid medication other than Synthroid and other brands of Levothyroxine.

I would guess that more than half of those affected with thyroid disease are not treated properly. When patients complain of symptoms, they are told it’s because they’re getting older, or it’s menopause, or it’s all in your head, or you have fibromyalgia, depression, or chronic fatigue syndrome.

This insanity has to stop!

Shouldn’t our health care system be concerned with the money spent when thyroid disease is not treated optimally?

There are so many people suffering, and most don’t even realize their other medical conditions could be related to their thyroid condition not being treated optimally.

Last October 2018, someone very dear to me was seen by Dr. Ron Matsusaki in Nova Scotia, who did the proper blood tests and subsequently prescribed NDT.

Within 2 weeks her health had improved; she had more energy and less pain. Her life was changing, and she was very excited about her future.

After 6 months on NDT she’s a new person after suffering for 47 years on Synthroid!

But now, like me, her new-found health is threatened because Dr. Ron’s thyroid clinic in Digby has been shut down by the NS College of Physicians and Surgeons for doing proper tests and for prescribing NDT. [See thyroidpatients.ca’s earlier post: Dr. Ron Matsusaki’s license to treat thyroid suspended April 17, 2019 ]

Our Canadian provincial Colleges of Physicians and Surgeons, the Canadian Society of Endocrinology and Metabolism (CSM), and Choosing Wisely Canada are keeping us sick.

Thyroid patients have to pay out of pocket or have to travel for hours to find doctors who will listen and treat them properly.

CSEM is digging in. They refuse to change their protocols for thyroid testing and treatment. By pressuring and hassling doctors who care and treat correctly, they are blocking our only path to health and well being.

It is absolutely appalling!!

~ The end ~

Thank you Gisele!

Feel free to express your appreciation or your own stories in comments, not naming any doctors by name, unless they give permission or are already in the public eye for their thyroid therapy practices.

2 thoughts on “Gisele’s thyroid therapy journey

  1. threehappypenguins

    Thanks for sharing your story! I am in the midst of investigating whether I have Hashimoto’s. It’s like pulling teeth, trying to get the tests I need. I was even falsely told by a Nurse Practitioner that only specialists are allowed to order thyroid antibody tests (I called the QEII blood lab who confirmed that this is not true).

    My Free T3 was 3.64 pmol/L, and it wasn’t flagged because the reference range changed in May 2018 in Nova Scotia, where it’s now 2.89 to 4.88 pmol/L. And my TSH was 4.85, yet it was completely dismissed and I was told to just take iron supplements (my iron is also low). It’s so difficult to navigate a system that is completely against you, especially when you’re TIRED and nobody is listening.

    Like

  2. threehappypenguins

    Oh, and I wanted to mention… anyone who is running low on their meds, could perhaps attempt to get a prescription of T3 or NDT from a doctor on getmaple.ca. You get an online consultation from an Ontario doctor, and they can prescribe medications where you can just pick up the prescription when they send it to your pharmacy of choice. If the doctor can’t (or refuses to) help you, you don’t pay (it’s $50). You can actually just try again another doctor right after that and see if that doctor will help you (I’ve spoken with Maple customer service and they’re excellent; they suggested that to me when I was trying to get a prescription of a medical device for my daughter; the first doctor wouldn’t do it, but the second doctor did).

    Like

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