What Happened When I Went Back on T4

What Happened When I Went Back on T4featured

Dear Friends… I wish I could tell you I had a happily-ever-after ending to the post I wrote a few days ago on T4, T3, reverse T3, and diabetes…

But when I was pregnant with Golden Top, I was seeing a different endocrinologist… and he compelled me to switch back to T4.

How did he convince me to go me back on T4 again?

Essentially, he said many doctors don’t treat their patients TSHs to a low enough value. He said he treats many patients TSHs into the lower range to relieve their symptoms.

More importantly, he told me it’s possible I have an issue converting T4 to T3.

So I really felt he believed this so called “Wilson’s syndrome” – even if that’s not what he called it – could exist in some manner.

He reassured me I could go back on sustained release T3 if I needed to but he made it clear he wouldn’t recommend it! He said he could only think of one study that supported the use of T3.

This info, plus a little bit of scare tactic, stating it would be better for the pregnancy to go on T4, was enough for me to give it a trial run again.

Oh and by the way, here’s one study that supports the use of T3. The title gives a good summary of their findings: Levothyroxine Monotherapy Cannot Guarantee Euthyroidism in All Athyreotic Patients. 

Aka… T4 medication doesn’t work for everyone.

Surprisingly, on T4 I felt fine… for a while.

8 months pregnant photo of self

Here I’m 8 months pregnant! I may look like a beached whale but I felt great :)

The funny thing is, I felt better in the 3rd trimester of pregnancy than I had in years.

Now, here is where the story gets interesting… 

Around August 2013, I noticed I had very little stamina at the gym. I started to blame myself and beat myself up saying things like:

“You’re so lazy, can’t you even make it through a 30 minute circuit? You really are unhealthy and unfit!”

It took until December 2013 for me to finally say to my husband, “I think it’s back.”

I really felt discouraged. I felt like something in my life finally fit into the category of easy to treat.

In late December, I paid for the blood test to measure Total T3 to Reverse T3 and had it sent to the US. (Sidenote: can you believe they can’t test this in Canada?!)

I waited and waited… and waited for the results. And since it was Christmas, I had to wait for my doctor to return from her break.

I started a new addiction during this period of absolute exhaustion. I started to drink coffee daily… it was like a drug to me and it literally pushed me through the afternoon.

My husband works from home and he’s been a huge life saver! He takes Golden Top in the morning so I can sleep in… until as late as 10 am some days.

But even with a solid 9 hours of sleep, I never wake up refreshed.

Coffee latte

My guilty pleasure… except triple the size and add more whip!

Our plans to have more children had been delayed too (until a month ago… when my T4 levels looked safe enough to start trying).

The Total T3 to Reverse T3 Results

When the Total T3 to Reverse T3 ratio came back at 3.2, I was not surprised in the least (it’s supposed to be over 10!). Here’s why testing total T3 to Reverse T3 is important.

Since January 2014, my family doctor has tried to find the correct dose of T3 and T4 for me.

That’s right, she wants me on T3 and T4 this time.

She told me T4 crosses the placenta, but not T3. So for the baby (we God willing hope to have!), I will need T4 levels in an adequate range.

It’s been a slow process though. Here I am 4 months since starting my T4 and T3 combination therapy and I’m stilling not feeling great. I still feel pretty tired most days, only a slight improvement.

Although, I did notice within a few weeks of starting that my anxiety was gone and I was sleeping much better at night.

It’s just so hard. Sometimes I say to myself:

“This thyroid converting disorder is worse… so much worse than diabetes.”

Type one diabetes makes me feel like a superhero sometimes… because I can overcome it!

superhero with needle

I can’t believe I could find a superhero with a needle… so random :)

Look at me: I’m in school and going to have a tough job as a nurse BUT I can do it… even with diabetes.

Look at me: I’m pregnant and having a baby it’s tough BUT… I can do it!

Look at me: I’m a mom and I can do it even with diabetes!

But I can’t say the same about this thyroid disorder.

“Hun, do you mind if I sleep more… do you mind if we order in… do you mind if we don’t visit anyone this weekend. I just can’t muster the energy,” I’d tell my husband.

I know deep down there is a beautiful surrendering that comes in moments like this… but I’m human and want to get better fast. I want to get back to being a great and energetic mom.

In a few weeks when I see my family doctor I may try and convince her to put me back on sustained release T3 exclusively. I’m beginning to wonder if the T4 is preventing my body from clearing the Reverse T3.

Why my Endo was Wrong…

The Endo I was seeing when pregnant with Golden Top was wrong. He said he treats TSH levels into the lower range by increasing T4.

But as I mentioned in my last post, excess T4 gets converted into Reverse T3 in the body. And Reverse T3 blocks the receptor sites and doesn’t allow your body to use the active form of thyroid hormone T3.

So, while I felt better for a short period of time… my body was slowly producing more and more Reverse T3… and receptor sites were getting blocked.

So here I am… cleaning up the mess and hoping to get better soon.

8 months is a long time to feel exhausted when your a busy mom with type 1.

Piggyback ride for my son

My joy, Golden Top! There’s always a tad bit of energy left for a piggyback ride!

But I’m hanging in there. And I feel relieved thinking maybe others can be helped through my long journey.

If you’re looking for a doctor to inquire into whether you have a T4 to T3 converting issue check out this Thyroid Info website.

There are doctors listed across the world who are willing to do full thyroid hormone profiles and to prescribe T3 meds if needed.

Just be prepared if you’re going to your usual doctor, they will likely think you’re a little wonky… I can attest to that!

Think of me as the wonky of wonkies if you want… I just want my life back!

Do you have a holistic doctor who believes your symptoms? I’d love to hear where you’re from and even who your doctor is!

About the author

Melissa Shannon

Melissa Shannon is diabetes obsessed! She's a diabetes nurse, diabetes advocate, and person with type one diabetes. Melissa loves sharing stories about life with diabetes and is a passionate speaker and diabetes evangelist. Melissa's motto is: "Let's not let diabetes rule our lives, let's have diabetes to go!"

Add comment

Leave a Reply