Twenty plus years ago I was told I had Hashimoto’s. All I remember a the time was being told it was an autoimmune disorder and that I needed to make sure we kept my thyroid levels in balance. Given that I’ve been on thyroid medicine since about four months after Em was born didn’t seem life altering.
What I didn’t know over the ensuing twenty years of fighting to keep my thyroid levels stable through insurance insisting on generic thyroid medicine my body didn’t respond to (and being told I was crazy because I thought that), ups and downs in my levels due to weight gain and loss, hair loss, dry skin, and just general life was that that diagnosis meant my body was attacking itself and slowly killing off my thyroid.
In December of 2022 my company changed insurance companies. What ensued was the gluten free thyroid medicine I had finally gotten stable on for almost five years no longer being an approved medicine. Being shoved onto generic thyroid hormone that sent my body into a cycle of weight gain, hair loss, and general yuck. When Tim and I got married he did the research and we figured out how to go back to the right medicine albeit it of pocket. Though that was fall of 2023 we’ve fought all this time to get my thyroid to stabilize. Finally in February after another off kilter set of labs my GYN said “you have to see an endocrinologist”. Back story there – I hate endocrinologists. Between the fact that they are insanely smart humans usually who don’t know how to relate to you and listen to you when you talk and the one that prescribed Fred medicine and didn’t follow up on him thus leading to his kidney failure I’ve got no patience for them. My GP and GYN have managed my thyroid for years.
I procrastinated until end of February and finally got a referral sent to Tim’s endocrinologist. The ONE I actually like cause he listens to Tim and isn’t a condescending human. We expected it to be months before I could get in and after ten days without a phone call was surprised to finally get one Monday – with an opening the next day. Still calling that a God thing.
Dr. Burney walked in, sat down, and said tell me what’s up with your thyroid. IMMEDIATELY went to food…doctors don’t do that…and explained that Hashi’s patients can’t eat gluten. It inflames the gut and limits the absorption of the medicine. Do you know how many other docs had dismissed my saying I noticed a difference when I didn’t eat gluten even though I was negative for Celiac???
First change he made was saying from here on out it’s a strict gluten free diet. Also an unprocessed chemical free (whole foods) as much as possible. Hashi’s patients bodies attack foreign stuff and get inflamed and that prevents absorption of the medicine. Next up is continuing with getting some more of the weight off. The goal is to get me to ONE pill a day of the thyroid medicine so that if I’m going to pay for it out of pocket it’s not three boxes every six weeks to the tune of $185.
Then he took a look at my thyroid. It’s dead and gone. Shriveled up and fibrotic. The out of control Hashi’s has done its thing and I’ll be on the hormone therapy the rest of my life. As it has sunk it that how I feel will be a direct correlation to how I take care of myself for the rest of my life the more overwhelmed I’ve felt. Those close to me can tell you – the one thing I am worst at is taking care of me. And there is something different between choosing gluten free and being told it’s not an option anymore. As much as we travel it makes it a challenge.
I’m still exhausted, still have very little energy, and that’s as much mental exhaustion as it is physical. I have so much I want to do and right now nothing is cooperating. I am trying to lean into the amazing support that my hubby and kids are being but it’s hard. I am also angry. The ONE thyroid medicine most effective for Hashi’s patients most insurance companies don’t like and thus won’t pay for. To me that’s like saying you won’t pay for insulin for a diabetic. How dare you? Who made them God? It’s maddening.
If anyone with Hashi’s is reading this – your diet is as important as the medicine. You have more control than just the medicine. Take control and keep your thyroid functioning as long as you can.
Blessings y’all – Amy






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