a heart to heart about hashimotos

I have learned so much about my body in the past year. Here are some the ups and down post-diagnosis. | via The Spirited Violet

Last year at this time, I found out that I had Hashimoto’s and graduated from grad school all within the same week.  I spent a lot of time wondering if there were enough hours in the day to sleep as much as I felt I needed.  I wondered if I would always need a heating pad to sleep through the night and I felt highly skeptical that a thyroid could cause so much havoc on how I felt.  I was constantly inflamed, I had nerve pain in the weirdest places, chronic pain, and I had horrible brain fog all of the time.  I walked around for months completely confused feeling and flu-like.

The diagnosis itself was stressful, but also so relieving to have a name for what I was experiencing.  So much of my life has improved, but ironically, the hair loss was what was hardest for me.  I spent more time covering up the bald patches in my hair than I actually did fixing it for a long time.  Thankfully, my hair started growing back almost immediately after my improved treatment began.  As it is now, my hair currently feels like someone buzzed everything close to my scalp and it is incredibly itchy.  However, it is pretty amazing how our bodies start to repair.

I’ll admit that I was a little naive though.  I thought that my medicine would be a quick fix and my levels would return to normal again and quickly.  However, medicine side effects are sometimes just as bad and incredibly hard to separate.

Have you ever used the bathroom on yourself in public?  Well, I have now.  Four times.  I never thought it would be something I could laugh about, but it is, and one story in particular is pretty humorous.  I’ve spent months nauseous with flu-like symptoms with people constantly asking me if I’m actually pregnant (and tummy checking me!).  I wouldn’t use my autoimmune illness as a means to hide pregnancy and after repeating myself several times, I finally just started taking pregnancy tests on my period to validate to people that nope.  This has really brought home that invisible illnesses are hard to explain to others.  Admittedly, I would have never understood prior to this and now I do.

All in all though, it really hit home a few months ago that this is chronic illness and doesn’t have just a super simple fix.  Sometimes my body and how it is acting feels very foreign to me as I begin searching internet forums to sympathize.

There have been weeks where our house is a disaster while I’m having a flare up.  I’ve had friends offer to bring me food.  I’ve had to say no to things I otherwise would have done or service I would have rendered because I’m just too tired.  I’ve learned that intense exercise that I used to love makes me incredibly inflamed.  I’ve taken more several hour naps during the day than I can count.  

However, I’m also learning things about my body I never knew before.  I’m learning to reduce my flare ups with food modification.  I’m learning that stress literally hurts me because I can feel it in my body and I have to find ways to relieve it.  I’m seeing how chemically based so much of anxiety is as my body is beginning to ease up on my thoughts for the first time.

There are so many things that have been a surprise and I’ve had a lot of blood vials taken at the Doctor’s office.  What I’ve found is that there is an amazing community of people with autoimmune illnesses.  I’ve reached out to others who have been figuring this out for years and I’ve received messages from others who have felt lonely in their recent diagnosis.  I feel gracious for a husband that gives me the rest I need and lacks resentment for the many issues I have had.  I feel especially grateful that I have had a great Doctor who listens and responds to my needs when so many people in this community have been ignored.

I would never wish an autoimmune illness on anyone, but I’m happy for the things I have learned in this past year and I hope to continue learning.

  • Glad you have found a community of support! That is the most important thing when going through something tough (and it sounds like you are a great support to others as well!).

    • Thanks Davi! I hope to put info out there so more people can start figuring out what they have sooner than I did. It took me years to get diagnosed! By the time you have symptoms, you’ve had the autoimmune illness for enough time to cause pretty extensive damage. It has been so helpful to me to read other people’s experiences and be in this community!

  • Glad you have found a community of support! That is the most important thing when going through something tough (and it sounds like you are a great support to others as well!).

    • Thanks Davi! I hope to put info out there so more people can start figuring out what they have sooner than I did. It took me years to get diagnosed! By the time you have symptoms, you’ve had the autoimmune illness for enough time to cause pretty extensive damage. It has been so helpful to me to read other people’s experiences and be in this community!

  • Oh man, even though I can’t relate 100% with all your symptoms, I can definitely relate to all these feelings…it can be so frustrating! For me, a strict diet combined with strong medication (methotrexate/prednisone) was what finally put mine into remission, but it still was a long process…from start to finish (or at least, from start to remission), it took about a year and four months, and I always have a little worry in the back of my mind about when it’s going to return again. Like you said though, it’s taught me to finally listen to my body and not push myself too much (or at least, I’m way better at not pushing myself too much than I was before). And that’s super interesting what you said about your anxiety being chemically induced…I never thought about that before, but I guess it makes sense. It makes me wonder if some of mine might be linked to my AI stuff as well…I’ll have to look into that!

    • For remission, does that mean it has completely gone away or does it mean the symptoms have just subsided? I have an endo and gyno appointment in two weeks and I really hope it figures stuff out. Now that I am over this flare up, I literally feel like a million bucks. It is so nice to feel good after you haven’t in a looong time. Before I got diagnosed, I started having panic attacks out of nowhere and had developed a tic… they have completely gone away now that my thyroid medicine is correct. It was really shocking to me to see how much stress my AI was putting on my body just from that.

      • How I understand it is that AI diseases never fully go away…they just have periods of remission and flare-up. Currently, I’ve been in full remission for 6 months, and I’m hoping it doesn’t flare up again…but I just don’t know. Some people with my disease haven’t had a flare up in over 20 years (according to the doctor I see), but some have flare ups every time they get really stressed out. It does seem like stress is a major factor, as are lifestyle choices like diet and such. At least in my case, anyway. Hope those appointments coming up give you some good answers! And I’m super glad you’re feeling better—it really does make such a difference because you appreciate it so much more than before 🙂

      • Remission will look different depending on your particular AI disease, but like Torrie said, they never fully go away. For me, remission looks like mild symptoms on maintenance-level medication, with flares not lasting more than a few days and not happening frequently. I was in remission from about 16 to 25, although I did actually have a brief hospital stay during that time. Now I’m a few days shy of 30, and my Crohn’s is still active.

  • Oh man, even though I can’t relate 100% with all your symptoms, I can definitely relate to all these feelings…it can be so frustrating! For me, a strict diet combined with strong medication (methotrexate/prednisone) was what finally put mine into remission, but it still was a long process…from start to finish (or at least, from start to remission), it took about a year and four months, and I always have a little worry in the back of my mind about when it’s going to return again. Like you said though, it’s taught me to finally listen to my body and not push myself too much (or at least, I’m way better at not pushing myself too much than I was before). And that’s super interesting what you said about your anxiety being chemically induced…I never thought about that before, but I guess it makes sense. It makes me wonder if some of mine might be linked to my AI stuff as well…I’ll have to look into that!

    • For remission, does that mean it has completely gone away or does it mean the symptoms have just subsided? I have an endo and gyno appointment in two weeks and I really hope it figures stuff out. Now that I am over this flare up, I literally feel like a million bucks. It is so nice to feel good after you haven’t in a looong time. Before I got diagnosed, I started having panic attacks out of nowhere and had developed a tic… they have completely gone away now that my thyroid medicine is correct. It was really shocking to me to see how much stress my AI was putting on my body just from that.

      • How I understand it is that AI diseases never fully go away…they just have periods of remission and flare-up. Currently, I’ve been in full remission for 6 months, and I’m hoping it doesn’t flare up again…but I just don’t know. Some people with my disease haven’t had a flare up in over 20 years (according to the doctor I see), but some have flare ups every time they get really stressed out. It does seem like stress is a major factor, as are lifestyle choices like diet and such. At least in my case, anyway. Hope those appointments coming up give you some good answers! And I’m super glad you’re feeling better—it really does make such a difference because you appreciate it so much more than before 🙂

      • Remission will look different depending on your particular AI disease, but like Torrie said, they never fully go away. For me, remission looks like mild symptoms on maintenance-level medication, with flares not lasting more than a few days and not happening frequently. I was in remission from about 16 to 25, although I did actually have a brief hospital stay during that time. Now I’m a few days shy of 30, and my Crohn’s is still active.

  • Sharting is a time-honored tradition of Crohnies. I always pack a LOT of extra underwear when I travel, just in case. (Luckily it’s been a few years since I last sharted).

  • Sharting is a time-honored tradition of Crohnies. I always pack a LOT of extra underwear when I travel, just in case. (Luckily it’s been a few years since I last sharted).

  • Cindy Fox

    I’m thankful Autumn for the community to support you, for others who understand and been there. It’s sounded like your medication is getting balanced out better. I apologize for commenting on Instagram about a certain way to make chicken that might agree with you and not realizing you have autoimmune problems.
    I’m looking forward to following what your learning and will share anything I find that might be helpful.
    The added fatigue, stress and it’s adding to the flare up, etc has to make life a roller coaster ride. I hope things will balance out more and even food modification will be a great help.
    @homeathearth

    • I’m not offended at all by your food suggestion, I loved that you sent a recipe!! I am really working now on figuring out my trigger foods and I am substituting a lot of things in recipes that I used to eat for alternatives. (Regular flour for almond or coconut flour etc.) I’ve had so much hope the last month with having a huge reduction in my autoimmune symptoms; as soon as I stopped doing it in order to accommodate to having a house guest, I had a pretty big flare up. This was really eye opening to me and definitely helped me see what kinds of things I should reduce in the future!!

  • Cindy Fox

    I’m thankful Autumn for the community to support you, for others who understand and been there. It’s sounded like your medication is getting balanced out better. I apologize for commenting on Instagram about a certain way to make chicken that might agree with you and not realizing you have autoimmune problems.
    I’m looking forward to following what your learning and will share anything I find that might be helpful.
    The added fatigue, stress and it’s adding to the flare up, etc has to make life a roller coaster ride. I hope things will balance out more and even food modification will be a great help.
    @homeathearth

    • I’m not offended at all by your food suggestion, I loved that you sent a recipe!! I am really working now on figuring out my trigger foods and I am substituting a lot of things in recipes that I used to eat for alternatives. (Regular flour for almond or coconut flour etc.) I’ve had so much hope the last month with having a huge reduction in my autoimmune symptoms; as soon as I stopped doing it in order to accommodate to having a house guest, I had a pretty big flare up. This was really eye opening to me and definitely helped me see what kinds of things I should reduce in the future!!