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Another Chronic Disease, O Boy June 17, 2014

Five years into being diagnosed with type II diabetes, I finally felt like I had come to some sort of peaceful relationship with it. I felt like I was managing the best I could, and was really pleased late last year when my endocrinologist decided to discontinue my oral medications. I hadn’t even been considering that as a goal, so when she suggested it, I was both surprised and happy.  She said I was doing great. YAY ME!

I was interviewed (and photographed) by Diabetes Health Monitor magazine (a staple in endocrinologist offices everywhere!) and feeling pretty darned good about it all.

Then, a couple of months ago, things started changing. My blood sugars started bumping up. Then they bumped some more. They went higher than I’d ever seen before. I panicked. I called my endocrinologist and begged her to let me resume the medications.  She said okay, and resumed my lowest dose. Sigh.

Then my weight started inching up at a steady rate, despite my doing basically nothing different than I had in the past five years. Now, I’ve been doing Weight Watchers for a long time. And I’ve learned that when I see a surprise gain at the scale, there’s always been a reason. An indulgent weekend. A sedentary retreat. Any of those things. But I’ve always easily been able to right the ship, and come back on course within a very short time.

This time, not so much. I mean, not at all. That in spite of all my best efforts, the ship was not righting. Every few days I’d step on the scale, and every time, it was higher than the time before.

I was starting to freak out. I was starting to dread my WW meetings (which I LOVE) for fear of being called out as fraudulent, bogus, the works.  I was getting frantic that my clothes were getting to be terribly ill-fitting (or non-fitting). My torso was starting to resemble that of a 2nd trimester pregnancy. And I wanted to sleep, like, ALL THE TIME.

What the hell!

For a while, I was in silent paralysis. I couldn’t discuss it or deal with it at all, I was so freaked out. But then I called my doctor(s) who recommended thyroid testing. (and: lo and behold, thyroid problems can cause out of control blood glucose!) An ultrasound revealed an enlarged thyroid. Next step: blood tests. I had the tests last week and this week, while on vacation with my family, I received emails from both doctors. Normal TSH levels are .5-5, and mine is 9. Bingo.

Diagnosis:  hypothyroiditis, or Hashimoto’s disease. Then I nodded. I had about 90% of the symptoms. Weight gain. Puffy face. Fatigue. Brittle hair and nails. Memory issues. Joint pain. Weakness. Vision problems.

Wonderful.

Sigh.

Well, damn.

I’m trying not to be all WHY ME? about this, but damn. Come ON. Okay. So what do I do. I start taking thyroid supplements. I start figuring out how to manage THIS chronic disease.

Part of me is really, really pissed off. But part of me is relieved. That it’s not worse. (it can always be worse, right?) And that this condition has a treatment. For which I am very grateful. I can’t wait for it to start WORKING! (this could take weeks–>months)

As I did when I first started this blog, and basically with every time I’ve every struggled, I know that reaching out with the struggle is better than struggling alone.  I know that finding community and support is better than flailing around alone.

Even thinking about writing this post has made me feel better.

 

30 Responses to “Another Chronic Disease, O Boy”

  1. Carolyn Says:

    Susan, I was just thinking of you this morning, knowing it was too long since I had communicated with you. So sorry that you have this new condition, so glad it was diagnosed and you are starting treatment. And, I am glad that you are sharing, both for your sake and others. I hope this treatment kicks in soon. I’ll be in touch, Carolyn

  2. Welcome to the Hashi family, Susan! It’s a pain but you’re right that it’s treatable and could be a whole lot worse.

    If there’s anything I can do, questions I can answer – let me know. I’ll be thinking of you next week!!

  3. I don’t have any words of wisdom regarding Hashimoto’s, but just wanted to send some virtual hugs and love your way. xoxo

  4. Pubsgal Says:

    (((hug))) I’m sorry that this OTHER chronic disease got thrown into the mix! That does suck! I know you will face it with your usual humor & grace, and well-supported by family & we your friends. <3

  5. Kris Says:

    You’re never alone :D

  6. You are never alone!
    Our bodies are so odd… it’s the weirdest thing…
    God bless all us kick ass women :D

  7. I think this is what one of my friends has & I will check with her for you because if it is the same thing, she has been dealing with it for a long time… let me check.. So sorry!

  8. Emily Ho Sanford is dealing with the very same. And I was diagnosed with moderate thyroid issues several years ago. It can be managed! Still, when I think about what you’ve had to deal with over the past few years BAH HUMBUG! Big hugs coming your way…

  9. Leanna Says:

    Susan, I am so sorry! But I am so glad it’s no longer a mystery, and now you have a course of action! You are a brave and strong person and I know will get back to glowing health. And it’s also totally ok NOT to be strong all the time. Sending you love and thoughts of gentle healing and caring all around you. xox Leanna

  10. Kat Says:

    Thinking of you and wanting to share that there is hope on the symptom side with medication and dietary changes. I have Hashimotos and am hypothyroid and have been for 18 years. Last year I started to receive acupuncture regularly. After a year of acupuncture, there are no more thyroid antibodies in my blood. I shared my blood test results with my acupuncturist and she told me that Chinese medicine looks at all autoimmune issues as potential food allergens. When I am reducing gluten and dairy the thyroid antibodies disappear. It is an interesting connection, because I feel better too when I am minimizing these foods. My guess is that everyone’s body has different allergens and may need different solutions. I hope you feel better soon! If you need some extra support, feel free to holler.

  11. Tamara Grand Says:

    Susan, while the diagnosis sucks (nobody wants to have any kind of a syndrome, do they?), I’m so glad that you’ve figured it out! I know several women with Hashimoto’s who’ve managed to get it under control and maintain their weight for years and years and years. I know you will too! Sending hugs and happy healing vibes xo Tamara

  12. Anne Pinental Says:

    Wow, a very powerful amount of sharing. Your WW group is there to help you as you are to us. I’m glad there is a reason and look forward to you kicking this in the butt.

  13. Coco Says:

    I totally get your frustration, but at least you do have an answer and it is treatable. You don’t have to be strong, but I know you got this too!

  14. Jen Says:

    I have Hashimoto’s — it is not that bad once you get on replacement hormones. I have asked my endo if there is anything else I need to do and it’s the same stuff you are already doing — eat healthy food, watch calories, exercise.

  15. Susan Says:

    Huge big thanks to all of you. Seriously. oxoxo

  16. Keta Says:

    Oh Susan. Dang. Glad you got a diagnosis to prove that it wasn’t you being bad. I’m certain you’te getting the best of care. Having worked for one of LA’s best endo guys I’d like to share two of the best lessons I learned in the 3 years I spent with him: 1) always take your thyroid meds on an empty stomach at least 30 minutes before eating and 2) always use the same brand or same company. Thyroid replacement drugs are not like other drugs in the sense of bioequivolency because there is too much subtle but important variation in the manufacturing process. The FDA doesn’t recognize this but it is well documented in the literature. Sending you hugs. Love, Keta

  17. Wendy Says:

    Love you, Susan. What’s amazing is how you always meet whatever challenge confronts you, no matter what. I’m so glad you figured out what the hell was going on. Hugs. Please keep us posted!

  18. Laura Rivas Says:

    Animo, Susan! Lo siento and i love and appreciate you so much, too! Thank you for setting a great example about how to resist the self-loathing and alienation that so often happens to us when we most need love, community and support. un fuerte abrazo! -laura

  19. Scrolling madly to get to the bottom of the comments because it’s late, it’s past my bedtime, one eye is already closed, goddammit, and yet I have to respond to this. Brother! Sister, actually. Not fair, but hey, it could be a whole pile of worse. Love you, thinking of you, sending you the best of possible vibes. xo

  20. hopeclark Says:

    Girl, you’re one of the strongest people I know. God probably knows that. Chin up.

  21. Masha Says:

    So sorry Susan. My Mom got this very young (ie I was in middle school) and has managed it up until now. I am so glad you were able to find out what was going on and then embark on a treatable path! Hang in there.

  22. Nina Says:

    Susan, I was diagnosed with Hashi about 10 years ago. I really thought something horrible was going on. Gained weight, was cold all the time,felt like I had the flu,and my blood pressure kept going up. Finally tested me and my tsh was 10. I researched and decided I wanted to take Armour Thyroid which is a more natural thyroid drug. I immediately started feeling better. This is the most informative website you can go on to read all about your thyroid. Mary Shoman has written many books and you will learn so much from her. http://thyroid.about.com/ Hope you feel better soon! Nina

    • Susan Says:

      Thank you so much, Nina! I will definitely be checking out this resource.

      • Mary Says:

        I’m also in the hashimoto club! And second all that Nina says. After a decade with a traditional endo I switched to a different local MD who thinks more holistically and prescribes naturthroid (like armour, a natural thryoid replacement). I ended up cutting dairy and gluten too (sucks but I’m used to it now). Happy to share any info.

  23. Kia Says:

    Love you Susan. It could be worse so I get being grateful about that. However much like your diabetes it is o.k. to be pissed at first as this becomes your new normal. I am wishing you health and improvement as you work with this newest diagnosis.

  24. Susan Says:

    Thank you EVERYONE who posted here and also on FB. I’m so very grateful to have such a loving, supportive community. oxoxo

  25. Kay Lynn Says:

    Yeah, Hashimoto’s disease sucks. I have never felt the same as pre-disease until I cut out gluten despite “good” lab values. There are studies linking gluten to Hashimoto’s if you want to check out that theory.

  26. […] sooner had I gotten over the bummershock of having a faulty thyroid, than I began waking up with excruciating, hobble-inducing, holding-onto-walls heel pain. It had […]

  27. Lyn Says:

    Wow, sounds exactly like my experience!! I hope you find relief as much as I did by starting treatment. After starting synthroid everything has slowly been going back to normal. I hope your treatment works well for you too! You might also want to look into the link between diet and Hashimoto’s. There is some good research going on.

  28. […] absent (again). Yesterday I realized that I’ve been kind of holding my breath, since I got my thyroid diagnosis. I started on medication. And I’ve been dealing with my plantar fasciitis with a variety of […]


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