The Time I Found Out I Have An Autoimmune Disease

As you all know, I’ve been struggling with my health recently. From stomach aches to broken toes to thyroid issues to mood issues (#PoorBen) … it’s been a weird ride!

Finding out I have Hashimotos Thyroiditis | The Time I Found Out I Have An Autoimmune Disease
I’ve known I have hypothyroidism since I was 23 – so about six years now. I’ve been taking a medication and was basically told, “You get to live with this forever!” and sent on my merry way. At least once per year I had to have my levels checked and basically when anything BIG happened, my levels would skyrocket. Think graduating college (when they found it), breaking up with my boyfriend of 4 years, moving to Green Bay, moving to Chicago, switching jobs because I hated my job so much …

You kind of get “used” to feeling like shit. I was used to being tired all the time. I was used to needing at LEAST 9 hours of sleep to function. I was used to gaining weight really easily and struggling to get ANY off. I was used to the dry hair and skin. I was used to the constant constipation and gut issues.

But “that’s just the way it is”

In October I finally decided to take my life into my own hands. I was sick of being sick all.the.time. so I scheduled doctors appointments and did an elimination diet. My PCP tested my thyroid levels a couple of weeks ago and told me my T4 and TSH were fine, but she took a look at my T3 levels and they were low, which she said made no sense. She referred me to an endocrinologist.

On Monday, I went to the Endo (weird guy … drew lots of pics) and he took one look at my results and saw my antibody levels from a test in March of this year and said, “Oh, this is easy. You have the autoimmune disease called Hashimotos Thyroiditis” and then he said:

Not a big deal, not a big deal, not a big deal.

In fact, he said that same phrase, that same three times about 15 times throughout my doctor appointment

The basic info is, not much will change. I was being treated for hypothyroidim, so I’ll stay on that medication and he’s re-checking my results to see if I have a rare form that is difficult to explain but again NOT A BIG DEAL, NOT A BIG DEAL, NOT A BIG DEAL.

If you’re interested in learning about the difference between Hashimotos and Hypo, this article explains it (though I’m still confused).

I left the appointment with a swirling brain, a bunch of badly drawn pictures #doctors and a donut, because I was trying to make myself feel better and there was a Stan’s Donuts in the bottom of the hospital. 😂

I got home, told Ben about it and started doing some research. I wanted to know what I could do BESIDES taking a bazillion more pills that haven’t helped me for the last 6 years, so how are they going to help now? I read about people with Hashi that need to go gluten-free, dairy-free, soy-free … AKA the damn elimination diet that I was eating a few weeks prior. Then I read that food doesn’t help people at all – they just recommend trying to eat healthier. I also read that exercise is good, but not *too* difficult because it can stress out your body. I read about adrenal fatigue and goiters and all these things I don’t understand.

So here I am … waiting for the test results from the doctor and not knowing what to do after this. I’ll keep y’all updated, but know that the frustration is REAL and if you have any background, I’d love to talk with you. ❤️

17 comments

  1. Torry says:

    I know it’s a huge shock at first. For me the next day when I went to the grocery store I cried bc I just didn’t know what I was doing being #glutenfree but in the end the changes you have to make ((and thankfully its not TONES of medication)) are super easy and we are lucky, it could be WAY worse!

  2. Megan says:

    I’m so glad that you finally have an answer as to why you’ve been feeling the way you’re feeling. But.. how frustrating that your doctor wasn’t too helpful about it. I have known two other people recently diagnosed with Hashimoto’s. I’m not entirely sure what all they are doing besides cutting out gluten and dairy though so I’m not very helpful there! I do recommend Aldi if you are going to start cutting out gluten. They carry some pretty good GF items! Some are even better than non-GF stuff and it’s way more affordable than the regular grocery stores. Hopefully the next results will give you some more answers too. 🙂
    Megan recently posted…Getting back on track.My Profile

    • Jessie says:

      Thanks, lady! Everyone keeps recommending Aldi just in general – I definitely need to find one here! My doctor finally emailed me (today) and basically just told me to go on a Vitamin D supplement. SO, I’ll be finding a new endocrinologist, just because I’d like someone to help me with the dietary and lifestyle aspects, which he doesn’t seem to be interested in helping with. 🙂

  3. Lei says:

    I was born with Hypothyroidism and at 32 years old and been through lots of stress and 2 pregnancies I feel totally fine. I’ve never had an endocronologist tell me to eliminate food or do anything differently but take synthroid every day. My levels did change a couple times in my 20’s and theres always a little fatigue, cold and down feelings but I never let it define me. I know everyone is different so my issues aren’t the same as yours but keep trying things and don’t let it bring you down. I’ve always been thin so never dealt with the weight gain part of this thyroid thing but I also don’t make excuses for it. My parents growing up never treated it as a problem so I never thought of it as a problem. I really enjoy watching your journey but its also hard to watch because you seem to give up easily. Best of luck and cheers to Health!

    • Jessie says:

      Hi Lei! Thanks for the comment. I’m so happy for you that you’ve been able to keep your hypothyroidism under control and you don’t feel many of the side effects – I’m so envious!

      I think for me, I absolutely refuse to live a “half life,” which is how I currently feel. Where I can’t control my mood swings + any time anything crazy happens in my life (good OR bad), my thyroid gets all out of wack. The thing with Hashimotos that’s different than hypothyroidism that I’ve found from my research is that even when my levels are “normal,” I still won’t feel “normal” most days because my antibodies are still attacking my thyroid unlike with strictly hypo. And that’s I’m just too stubborn to believe I’m meant to live feeling yucky “most of the time”! I’m lucky to have an autoimmune disease that I’m able to take a medication and hopefully supplement it with any healthy supplements and lifestyle changes to make me feel as good as you feel (or anyone feeling more “normal” and “fine”)

      I do have to say, your comment about thinking that I give up easily really made me sit back and think, so I appreciate that. Those are words that I’ve definitely never heard from anyone. I find myself quite determined (in fact, to a point, pretty stubborn LOL) when I want to change something. That’s why I’ve been able to follow my dreams in so many aspects of my life. I’m so happy to have a diagnosis of Hashimotos because now I can really get my head wrapped around what I can do to feel normal and fine. For me, that means finding an endocrinologist that’s talented with my specific autoimmune disease. That also means that sometimes I may come to my blog – my safe place – to talk about my frustrations with all of you who feel like my friends. Thanks for bringing it to my attention that you feel I give up easily – definitely is something I’m going to be more aware of when it comes to how I portray myself. Hope you’re having a happy weekend!

      • Lei says:

        Happy to shoot straight to someone who gets the little things. I just look back to when I followed you from beginning alone in WI and you had such great determination and willpower. I admire you in both places though so glad you didn’t take that wrong. Prayers and peace for future healing!!! And I went to school in WI so I like you even more than other bloggers😁

  4. liz says:

    Yes- this is exactly what I was thinking! I wish I could remember the Wellbelly blog (it was on my old bloglovin- maybe I could log in to that!) who has Hashimoto’s and controls it well with her diet. Weren’t we just talking about low FODMAPS diets or AIP? Even though you are dairy, gluten, and soy free- you still ate a bunch of high FODMAP foods every day. All the stuff I was talking to you about was from Hashimoto’s sites. I believe 100% that autoimmune disorders are exacerbated by diet and starts in the gut. I’m sure there won’t be ONE thing you can find that will work perfectly for you, but at least you know what you have. Blood typing can be used too to help decide what type of diet may work best with you… If you know your blood type, you can read about blood type diets. I know you get SO MUCH ADVICE and like I said last time, you don’t have to listen to anything I say, haha. But I’d just start finding the inflammatory foods and make a list of them. Make a list of foods that tend to help heal the gut. And create a diet based off of that. Do a better elimination diet (that is more researched for your specific condition) and then go from there. People with autoimmune diets can respond so well to diet changes if they are really done right. I really believe that if people with autoimmune disorders do not feel better with a certain diet, then they are STILL eating an inflammatory food (for them). It just takes time and diligence and frustration, but there is power in knowing 😉 I wish you could find a good holistic doctor who could help you get this down. I would sooo love to do all this research and map out the inflammatory foods. I probably love this type of stuff because I don’t HAVE to do it, but I just loooooooove food research! To think a pill can be ingested and work magic is silly to me (general statement- not directed to you!), especially if somebody believes that food WOULDN’T make a difference. We use so many organs and chemicals to break down foods and our GI tract is tied to so much. How could what we eat NOT affect our entire body? Okay, I totally need to get back to writing my paper! But I am totally serious about looking into dietary stuff more and even seeing if I can find some good peer reviewed articles (I have access to my school database still) IF you want me to (once the semester is done in 2 weeks). I love reading about the science behind food and how it interacts with your body.

    • liz says:

      I totally sound like a crunchy person here, haha. And to think, I’m really just a nurse who gives all types of meds that I don’t agree with 😉

    • Jessie says:

      Girl, I love your long comments! 🙂 You da best. I’d LOVE any help! I keep doing all this research and I just get so frazzled because everyone says something different!

      My doc did finally email me back today saying my levels are normal so “you’re fine!” 🙄 but my Vitamin D was low, so I should take a supplement of some sort for that. I do think I’m going to try to see another endo for now (since naturopaths aren’t covered by my insurance BOO). I joined a few Facebook groups and a lot of the women in them have Endos that work with them in finding out differently lifestyle changes they can make to feel better. I’m thinking of at least starting with the Vitamin D and going as gluten-free as possible. I noticed with the elimination diet, it was just TOO much all at once. So for now, I’ll start with gluten-free (and soy free since I’ve been eating that way for a year now anyway) and minimize milk (which I’m already doing). Once I get that under control, I’ll start on something else. BUT I’d love to hear any research you find that’s intelligent and something I can trust – of course, once you’re done with school! haha!

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