Thyroid Disease… What a Bitch!

The New York Times has a nice piece today on the various types of thyroid disease. It’s collection of audio clips from people with Graves disease, Hashimoto’s, and the vanilla versions of hypo- and hyperthyroidism.

All of the patients do a great job of describing their experiences and how they dealt with them. Dana Smith, in particular, does an excellent job of recounting the faux depression of hypothyroidism and how difficult it can be to identify the disease when the symptoms are so similar to “just feeling blue” or “eating too much” or maybe even “getting older.”

I’m coming out the other side of an 18-month fight with my thyroid – first, having it partially removed and recovering from the surgery, as well as the resulting fear and physical scar (so much for ignoring mortality, right?)… and second, finding that I was hypothyroid and monkeying around with doses of synthetic hormone until I feel “normal.”

It’s difficult to admit, but I don’t know what “normal” feels like. That leaves me to the work of defining my new normal. (Hello, Erika!) I’m relieved to report that it seems the endocrinologist has found the correct dose of synthroid to put my TSH levels where they should. They physical part is falling in line, so the rest is up to me.

I encourage you to listen to the stories in the NYTimes “Patient Voices: Thyroid Disease.” It might help you understand yourself or what’s happening with someone else you love.

If you’re new to my blog, you can read all of my posts about my exciting thyroid adventures, a.k.a, the Frankenneck, right here.

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  • el_twirpo says:

    thanks for posting this, melissa! i'm tempted to listen to all the stories right NOW, but i should probably get more work done.

    i bought the book Could It Be My Thyroid? when i was first diagnosed, referred to me by my husband's cousin who also had grave's disease. lots of different stories of people's experiences – some that are quite extreme.

    this kind of eased my mind about what to expect and what to watch out for. and thankfully this is still a very manageable (albeit annoying) disease.

  • Shari says:

    Ditto on that title!!

    Just found your blog. Thank you for sharing your story. I have hypothyroidism (Hashimoto’s)and it’s been, uh, FRUSTRATING!!

  • Sylvie says:

    Hi Mel – I just came across your blog while searching for Paleo friendly recipes when I came across a post your battle with thyroid disease. I’ve been battling it for years, and unfortunately, hadn’t been getting the care that I needed and was riding the thyroid crazy train for a loooong time! I decided I had to educate myself so that I could be persistent with the doctors who had been letting me coast at above normal TSH ranges and telling me it was fine (I was at 8 in Feb!)and recently read the Thyroid Solution. Boy did it ever make me feel better! I really thought I was losing it for a while and didn’t understand why the slightest thing stressed me out and why getting myself to the gym was so freakin’ hard. Luckily, I’m on the mend now – my last test showed my TSH at 3.4 and my synthroid dosage has been upped again to bring it down even further, but what a battle it’s been! Thank you so much for posting about this – I need to get to it and share my story soon too, now that I actually have the energy to do it! I’m loving your blog, your funny posts, your honesty and your recipes too!

    • Mel says:

      Good golly… 8! That must have been really hard. Whew.

      They Thyroid Solution is a really great book. What a relief to find I’m not nutso — at least not in THAT particular way.

      Sending you wishes for lots of energy and lower TSH. Take care of yourself!

  • Dana (Smith) Schillawski says:

    I found your site while researching Paleo Diets, and found your Whole9/Whole30 and your personal blog (theclothesmakethegirl…who can resist that title?)…anyway… the past 5 years have been crazy for me (healthwise). I thought I went through menopause early (at 40) w/o symptoms. I am now 50. I found out I have Hashimoto’s after gaining 40lbs in 3 months, and having an allergic reaction to prednisone. I am taking Nature Throid (similar to Armour) and I use bio-identical hormone cream. Through a series of doctor visits, tons of symptoms, and feeling like a guinea pig, I still have issues. I started my period AGAIN after 10 years of no period. My hormones are off the charts (low), and I constantly feel like I have peanut butter stuck in my throat (enlarged thyroid). I have gone gluten and sugar free, but haven’t gone completely grain free (still eat some rice and corn chips), and I still eat dairy. I want to start the Whole30. One of my brothers (super physically healthy) recently had a massive heart attack. It SHOCKED the whole family b/c he appeared as the picture of health. After a triple bypass, and a miracle, he surviced. He is now Paleo and feeling fantastic. He won’t go back. He was also found to have Hashimoto’s (after his heart attack). I used to be very physically active, involved, etc., but the past 5 years of major change in my life have revealed some unfortunate things. I want to move forward and get healthy again. Thanks for your information. It is very encouraging and motivating. I look forward to reading more of your story, and hopefully finding a good endocrinologist and GYN who can help me. The problem is that most all doctors want to just prescibe a pill. I also bought your books (All about food, and cookbook). Thanks
    BTW – I’m not the same Dana Smith as you mentioned earlier…interesting. I’ll check out her story.

    • Mel says:

      I’m glad you found me — and sorry to learn about your health challenges. It’s no fun, that’s for sure. But I share everything I learn and I hope it helps readers like you a little bit. Hang in there! I think the #1 thing is to keep researching and experimenting on yourself AND finding the right docs is imperative. Good luck to you! Keep us posted on how you’re doing!

      I cannot recommend the Whole30 enough. Try it! You will feel like a new woman.

  • Sarah says:

    I’ve got graves but its alright really. I quote like it apart from my muscles and bones go ridiculously shit each time i relapse. Still, i’m not having a scar and my pills are a pretty pink colour. I do get down about the whole being a bitch/general twat thing though. As soon as youve calmed down its like…what the hell was i doing, and ‘sorry i’ve got this odd thyroid thing’ jist sounds like you’re making excuses for yourself. But i totally am so to hell with it.

    Always look on the briiiight siiide of life *doo doo, doo doo, doo doo doo doo!*

    Except i’m not even thin. BALLS!

  • Jeannine says:

    I’ve was diagnosed with hypothyroidism about 15 years ago. My levels are always changing and so are my meds – I really can’t tell when I’m feeling better or not. I don’t know anyone who has this disease so no one close to me can relate which is incredibly frustrating. My friend recommended your site and I’m really excited to try out this clean way of eating in hopes that it curbs my weird mood swings, GI issues, fatigue and horrible joint pain. Thanks for sharing your story/experiences and for all the great paleo advice and recipes.

    • Mel says:

      Paleo eating definitely helps a lot with thyroid management. You might even want to try a Whole30 to get you started — the difference in how I feel when I eat super clean is AMAZING.

      Good luck to you — let me know if you have any questions.

  • cdc says:

    Just wanted to say hello and that you are not suffering alone with your thyroid condition! Just remember that you can be optimal and not to settle for anything less. There is a great online community on Facebook–Thyroid Sexy–that has some good information about living with a thyroid condition and you can find people with the entire spectrum of experiences. I’m just coming out of my own personal hormone pit, and I really appreciated reading your blog….so thanks for sharing!
    Best in health, c