I’ve made a BIG decision. I’ve decided to finally have my thyroid removed. I’d considered it a year ago, but somehow just backed off from actually taking steps toward surgery. I am still scared, but somehow I keep taking steps. I’ve spoken to work about it and most recently, I sent this letter out to friends, family, and otherwise important people in my process:
Hello All. Some of you are very close to me, some are friends with whom I’ve kept in scarce touch but hold dear, others still are people I may have never met in person, but either share the thyroid/autoimmune burden with you or have simply shared with you the story of my own. Wherever you fit into this spectrum of people, you all have had an impact on me even if it’s simply that I think you are an awesome person with a great sense of humor (Kim) and cared to include you in my support network. I hope you’ll read on and participate in whatever way suits you in this very big step that I’m about to take.The short story is, I’ve been living with Graves’ Disease for nearly six years. I’ve tried and tried to will myself into lasting remission and ultimate health, but I feel my DNA has stacked the odds against me and I’ve made a big decision regarding my treatment. So far I’ve been able to get my thyroid hormone levels under control with Anti-thyroid meds, but my thyroid stimulating hormone is still non-existent. I feel I’ve reached the end of this long battle and am ready for a different method of care. I wish I could’ve had all the resources in the world available to me upon diagnosis so that maybe I could’ve done more in the early stages to get this monster to retreat, however that is not how things have played out. I am finally ready, terrified, but ready to schedule the removal of my thyroid.I won’t get into all the reasons why in this email. If you’re interested, I’d be glad to share. Ultimately, I had to wait until I was ready and that moment occurred a couple of weeks ago when for the first time, I experienced relief and a burden being lifted at the thought of total thyroidectomy. Granted, this will render me unable to sustain life without medication for the rest of my life, but things are sort of that way as it is. Were I to stop my meds, I’d just go in a different way. I’m scared, but I’ve always been scared of this surgery. The difference now is that I continue to take steps toward this surgery even though the gremlin in my brain is holding onto my thyroid with its heels dug in the sand. I allow him to hold on, yet I still move forward.I am in the beautiful state of Colorado currently, visiting my 8 month old niece with the cutest, chubbiest cheeks you’ve ever seen. It is my intention when I return to Atlanta to make an appointment with Colin J. Weber – to schedule my surgery. I don’t know how far out I’ll have to wait, but I’m hoping for the end of February. This particular surgeon is Chief of Endocrine Surgery and personally emailed me back when I emailed him over a year ago asking for his stats. He’s performed over 4,500 thyroid surgeries with 6 nerve injuries. He performs about 275 thyroid surgeries per year. You can read more about him here: http://www.surgery.emory.edu/about-us/faculty_directory/faculty_profile_collin_weber.htmlI am reaching out to all of you for support. Some of you I may lean on heavily, others, I hope that you’ll keep me in your thoughts often and send me some positive thoughts or energy; whatever feels right to you. Often when someone asks me for support, I ask them to define it for me, as different people find different things supportive. Specifically to me, some examples of ways you can offer me support that I would find helpful include but are not limited to:
- a phone call or text to let me know you’re thinking of me or wishing me well
- sharing a story with me about someone you know who has had a positive experience with thyroid removal (this is a BIG one)
- asking questions that might help you or someone you know who is struggling with thyroid disease (it’s common) – feeling helpful to others as a result of my own struggles is also very positive for me.
- an email telling me about what is going on in your life or just a quick note, as long as it’s genuine, the subject matter is not important, it’s the connection.
- anything specific to our relationship that you think may be helpful or supportive
- sharing vegetables from your garden with me, perhaps over coffee (decaf for me)
- anything involving connection and cultivating positive, calming energy.
- a hilarious email about the minutia of life (Kim, Milana, Jimi)I’m sure you get the idea….So, I’ll leave it there and hope that many of you will show up along the way in this journey that I ultimately have to take on my own.I plan to provide details of my experience in two places. On Daily Strength, where you may have to create an account to follow my posts:
- If you’re interested on connecting with me on daily strength, please reply and let me know and I’ll send you an invitation to make it as easy for you as possible.Also, I hope to be posting here:a blog that I’ve neglected quite a bit, but hope to revive as quantitative details provide a platform on which to contemplate, expand, and share my experiences, thoughts, emotions, etc. with others in the hopes of making meaningful connections that help to heal and also to hopefully serve as a positive example in the thicket of horror stories that are out there on the internetz.Thank you for reading all or part of this, or even opening the email and scanning it… when you feel like it, I hope you’ll reach back.Love & Laughter,Kat
- cosmetic: plain and simple, I’d rather have a scar than a goiter.
- financial: it’s just realistic. I have to get my labs done every 8 weeks and see the Endocrinologist (who is lenient with me regarding appointments) every other time I have my labs done. With my current insurance, my lab work is covered. I receive 6 office visits per year at a $40 co-pay, and my deductible is $10,000. Like everyone else, my premium saw a dramatic increase in price and I am now paying just under $300/month for this skimpy coverage.
- also financial: other insurance plans I’ve looked into would not exclude me with a pre-existing condition, however the labs would only be covered up to $400/year, leaving me with the rest to pay out of pocket. The deductible would be $3500 with $60 specialist visits. If I only had to get my labs done once or twice a year once I find a dose that’s somewhat stable, it’s a more sustainable way to receive care.
- risk of thyroid storm: under my current method of care, as long as I still have my thyroid, I’m at risk for thyroid storm. This is fatal unless immediate medical attention is received, which is the main reason I get nervous on airplanes and certain other situations in which it would be difficult to get immediate medical care.
- cardiovascular risk: with the inevitable fluctuation of my thyroid levels – when they’ve gone up, I have experienced arrhythmia and anxiety. As a person gets older, this is much more dangerous, as does surgery.
- athletics & muscle wasting: with each rise in levels, I lose more muscle tissue and it has become more and more difficult to rebuild that muscle. I’m hoping that I can find some balance that will allow me to pursue the activities I love for the rest of my life without having to start from the beginning again.
- weight: ironically, one of the reasons I was scared of the surgery is the stories of dramatic weight gain. However, I have experienced weight, specifically stomach fat gain that appears virtually overnight once I start on a higher dose of medication. People say it’s age related, but that’s the last place I put fat on and belly fat actually functions as an endocrine organ! So I’m hoping some long term regulation will allow me freedom from the fluctuating appetite and fat distribution that seem to be a direct result of thyroid disease.
I suppose I could go on, but those seem to be enough for me now and I feel pretty good about this decision. I feel like I’ll have some relief. I think connecting to people who have positive stories over a year out from surgery have really helped. One woman, the main story I’m clinging to, is a year older than me, lost her methimazole weight and is now 7 months pregnant. (methimazole is the medication I am on and is known as an ATD antithyroid med).
Please feel free to comment with words of support or questions if you or someone you love is living with thyroid disease.