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Time flies by when you have no thyroid…

Hi.  It’s been nearly two years since my Total Thyroidectomy in April 2012.  I am doing well.  I moved to Denver in the fall of 2012 after traveling to Africa for three weeks – something I didn’t think I’d have been able to do before the surgery.  The thought of sitting on two 7-hour flights in a row knowing that if I had a thyroid storm, I wouldn’t be able to get treatment 30,000 feet over the ocean, and I’d die was too much to risk.  That sucks for someone interested in international travel…

So here I am in Denver, I found an Endocrinologist named Eric Albright who spent a full 30 minutes with me on my first appointment!  He’s knowledgeable, listens, informs me of things I’d never even heard of, even after 6 years of obsessive information searching for anything thyroid related.  I have appointments at 6-month intervals for the first time in almost 8 years.  I just realized that I’ve been going to an endocrinologist at least every two months for over seven years.  That blows my mind.

I’ve been steady on 125mcg plus an extra half pill on Fridays – which is very close to the 137mcg dose, but I’m fine with the extra half.  I lost almost 10 pounds last spring – intentionally, by recording my food intake – to get rid of what had built up during the roller-coastering.  I’ve been keeping it off, but it’s a little hard in the cold, snowy weeks interspersed in a Colorado winter.  My activity of choice is running.  The stability of the post surgery levels has allowed me to make steady progress.  In the last six months of casual jogging, I’ve been able to double my mileage and decrease my average pace by a full minute per mile and hit a couple of personal records while I was at it.  And that’s on top of a full time MBA program with a 3 hour commute each day.

That’s another reason for my disappearance – I just finished my first semester in the MBA program at CU Boulder.  As someone with little to no background, this has been a really intense learning experience, and not just academically.  It’s the hardest thing I’ve done since the decision to remove my thyroid.

I got a really sincere comment recently and wanted to address it before the semester starts up again and it gets lost in the shuffle.

Just came across your post… Wondering how you are doing now post surgery.. Also wondering why RAI wasn’t an option. I was diagnosed with Graves’ disease 2yrs ago and just ended 2yrs of methimazole on 12/30/13. I’m scared for what’s next- hyperthyroid symptoms coming back. I have felt good with the treatment (except for the awful mood swings & craziness) and got my fitness back. Our stories sound similar; I run and have had three pr’s in the last year since thyroid levels normalized. I don’t want to start over again. So, if you wouldn’t mind updating me on how you are doing, I would really appreciate it. My endocrinologist is not as understanding or receptive as I initially thought. Hope you are doing well :)

 

So, I’m doing great!  I’m in a really intense and stressful period with grad school and facing my fears about this huge financial risk I’ve taken.  Without the stability, post TT, I doubt there’s any way I could be dealing as well as I have been, and believe me, it’s not been very graceful.

Stability.  That was the main reason for my choice to finally have a TT after six years of the roller-coaster that is Graves’ Disease.  I can’t believe my relationship survived those mood swings, though I did lose others.  Perhaps more disturbing to me were the body changes.  With each recurrence of hyperthyroid, my thyroid got a little larger and more visible; I lost muscle tissue and even if my weight did not fluctuate much, I gained a larger percentage of body fat as a result and lost a lot of fitness.  I just had to wait for my levels to come down before I could even do muscle building exercise, let alone make any progress.  I also lost a lot of the fatty tissue underneath my eyes at one point, and though I feel some of it came back, I think the disease aged me faster than time.  Given the nature of the disease, how could it not?

Another form of stability present since my surgery is that my anxiety has all but disappeared.  I may have said this previously, but I’d like to reiterate.  I used to have to talk myself down from panic attacks all the time.  I’m so grateful for that to be gone.  It used to happen, less so, but still happened even when my levels were “normal”.  Also, no palpitations.  My heart muscle was stressed and now it’s not unless I do it on purpose with strenuous exercise.  It’s a huge relief.

There were three main reasons why I decided that RAI was not an option for me.  First, there is evidence that Thyroid Eye Disease – the bulging eyes – occurs more frequently in patients who have undergone RAI.  Some endocrinology surgeons have suggested that removing the thyroid rids the body of the antigens, thereby decreasing incidence of TED.  Not sure how much credible, peer-reviewed research has been done on that, however.  Second, the stabilization period is much longer and more frustrating with RAI.  You still have a slowly dying organ in your body making thyroid hormone at unpredictable rate and levels, respectively.  It’s often the form of treatment recommended by the medical community, because to them, it’s relatively cheap, “convenient” and definitive – a relief to the medical community, but not to me.  I didn’t suppose it to be any of those things, except for cheap compared to my shite insurance deductible.  The third reason I chose the surgery over RAI was that my thyroid was enlarged and visible.  It changed the way I interacted with the world.  I withdrew and couldn’t get past feeling like a circus freak.  If I really believed it was the best treatment, perhaps I could’ve found a way to deal with that aspect, but considering the other two, it didn’t seem worth it.

I have to admit that sometimes it freaks me out that I have to take a pill to stay alive, but those are the circumstances I chose based on the cards I was dealt, and I am still content with my decision.  For the first year, I was on a high, so much relief.  I felt human again.  I felt like I could engage with the world again.  I was high on happiness and relief.

That’s my story.  That’s where I’m at.  School starts in a week and it’s probably a safe bet that I’ll disappear again for a while, but do know that I receive email notices when someone comments, and I will respond.  I know how difficult it is to navigate this disease, particularly when the internet contains mostly people’s horror stories while the success stories are so few and far between because we are then allowed to go on with our lives rather than living in a world seen through the lens of thyroid disease every moment of the day.  So I’ll leave you with that run-on sentence and please feel free to contact me personally at kat (at) sudstress (dot) com.

I wish you all the best and keep moving forward one day at a time.

 

 

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Reply and Update

I just received the following comment and wanted to write a proper response, so I thought I’d make it a post rather than a short comment. I’ve been meaning to write anyway, so this is a great reason to do so. I swore I would keep up, but alas, life keeps moving swiftly.

Hi Kat

I’m curious how you’re doing now. I’m having a TT for Graves Disease on Jan 3rd and I’m soooo anxious about life without my thyroid. All of the horror stories on the Internet have me so scared. Your story seems like a positive one so far. How are you doing now? I’m hoping that the few posts/updates means you’re out there living your life and not worrying about your thyroid anymore!!! Please let me know there is hope after TT!!!

Jen

Hi Jen, thank you for the comment and for the nudging me to update my story. I have indeed been living life like crazy for the last few months, which is why I haven’t written. Since July, I’ve done/am doing the following:

  • moved from my apartment of 6 years into my boyfriend’s house
  • studied for/took the GMAT
  • quit my job (to travel and move)
  • received immunizations for Polio, Typhoid, Yellow Fever, etc.
  • traveled within Africa for 3 weeks
  • was on anti-malarial preventative medication for a month
  • sold my car and half of my furniture
  • traveled back and forth from Atlanta to Denver/Boulder three times to piece together a multistage, cross-country move
  • moved from Atlanta to Colorado via moving van for three days
  • finishing up my application for an MBA program

I’m still in the process of getting settled, looking for a job, finding my way around, writing application essays, dealing with car insurance bureaucracy for a complicated car-borrowing situation, looking for a new endocrinologist, etc….

Indeed, living life.

Things have been a little irregular with my TSH levels, but I attribute that to the travel and transition from Atlanta to Colorado that is still in a bit of upheaval.  I realize you probably deal more with T4 and T3, as I did since my TSH was pretty much at a constant .01, so relying more on TSH is something you’ll get used to after your TT.

I started with 112mcg of Synthroid (brand specific!) and my TSH shot up to about double the “normal” range.  I was then put on 137mcg (two notches up in dosage) and at 6 weeks my TSH was headed back down toward hyper-range, and I was put on 125mcg.  This seemed like the Goldilocks method (too little, too much, just right) so I figured we’d found our stable dosage.  The catch is, I left for Africa the week I started on 125mcg and had little control over what I was eating – and we were all eating A LOT!  Go figure.  There could have been soy oil in everything for all I knew.  When I did my labs (at only 4 weeks due to out of state circumstances) my TSH was way up and she wanted to put me back on 137mcg.  This did not make sense to me because I was headed toward hyper on that dosage just weeks earlier.  (I may be one of the few people you hear of that refuses a higher dosage, but I was having heart palpitations on 137mcg like I did when I was hyper naturally)  So I held off and did my labs a couple of weeks later (again, still too soon, but necessary due to circumstance) and it appears as though my TSH is headed back in the right direction on 125mcg.  Another kink in the chain, I was on Malarone – an anti-malarial for almost 30 days and that could’ve had an impact on my absorption.  The color of the pill looked like it had pigment made from iron oxide – and that could have interfered with absorption.

As you can see, there were way too many variables to really be messing with dosage.  I have to say, I’ve felt great and not great on each level of medication I’ve been on.  It’s been so long since I’ve lived without an awareness of thyroid levels that I forgot what used to be “normal” for me.  I’ve always been hyper-aware of changes in my body and when my levels fluctuated while I still had my own thyroid hormone, I could predict my lab results based on various physical symptoms, my menstrual cycle, and anxiety levels.  With Synthroid, my T4 hasn’t fluctuated as much as my TSH, and perhaps that’s why I don’t feel the changes as subtly as I did previously.

Since my surgery, my menstrual cycle is exactly 28 days no matter where my levels are.  That’s kind of weird.

Since I’ve stopped living out of a suitcase, remained in one time zone, and resumed cooking for myself, I am starting to feel better.  I had put on a couple of pounds before I left for Africa, looking back, it seems stress related, but nothing anyone besides myself might notice, and then added about four more in Africa.  I started to freak out, wondering if this was going to spiral out of control.  I think indeed it easily could if I continued to eat road and restaurant food I while remaining sedentary as I couldn’t help but do, whether due to the moving truck, sitting on one of my 13 plane rides or even in Africa where it wasn’t safe or possible to go out for a jog among the hyena of the Masaai Mara or get lost out in the the middle of the Great Rift Valley in a little place called Ewaso.

So, as my life begins to stabilize, I predict that so will my TSH.

If I could offer some words of encouragement…

I would tell you not to be scared, but I know that’s impossible.  I was absolutely terrified before my surgery.  The best thing that I did for myself was finding a way to just let go.  It was the ultimate lesson in learning to stop trying to control.  You are the only one who knows what your personal lessons are surrounding this and it is a huge opportunity for personal evolution and growth that many people do not have the chance to undertake.  Perhaps that sort of perspective can help calm your mind as it did mine.

Aside from the fact that I wake at 4 a.m. to take my pill every day, Graves’ Disease has been MUCH less intrusive in my life than it has been the last six years.  I still feel relief.  I still am thankful and find it difficult to believe that I have already gone through surgery.  It still feels like a weight has been lifted.  I still have $14K in debt, but after the initial sticker shock, that even feels okay.  I’m alive, I’m functioning well, I feel positive about my future.  I don’t have a single, miniscule thread of doubt or regret about making the decision that took me the better part of three years to make.

My scar is longer than most people’s because my thyroid was pretty big.  It’s still red, but I haven’t bothered with Maderma or anything to minimize it.  As soon as I find it, I’ll start using it.  I kind of liked the novelty of it, it was something awesome to show for what I went through.  Now it just clashes with necklaces…  I don’t really have any hang-ups about scars, so it’s not an issue for me like it can be for a lot of people.  My concern has always been the weight, muscle-wasting, and heart damage issues.  I feel the surgery definitely mitigated those for sure!  One more thing…  I’ve stopped obsessively searching the internet for answers that don’t exist.  What a relief.

I hope what I’ve said encourages optimism in you.  I feel that above all, my greatest asset was my positive attitude that came from I don’t know where, just in time for the surgery.  I think it was a gift that I was too sick for the original surgery date, as I was not in the proper head space for the best outcome.  Attitude will be your best ally.  That does not mean you can’t be scared, but you can feel the fear and still have a positive outlook.  There is no other way to look at it.

If you want more detail regarding any aspect I may or may not have mentioned, ask away!  I’m very open to sharing, just busy 🙂

I wish you the best of luck, Jen.  You will be fine.  Just take it one thing at a time.

Sincerely,

Kat

 
 

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Film Degree Comes In Handy For First Time In Decade.

Monday has been careening towards me like one of those dolly zoom shots in the movies…

I somehow manage to keep this distance in my mind while emotionally connected and even, dare I say, looking forward to my appointment.  Tomorrow will not be particularly eventful on the physical plane, but tomorrow I set the date.  It’s when the lingering possibility of the future becomes defined.  The countdown to the end of this way of life begins.  Though I feel mostly hopeful and optimistic, even excited, there remains some ambivalence.  This week has seen me through a few seemingly unexplained mood swings.

One day I found myself to be quite grumpy and irritable, though I hadn’t been conscious of it until I opened my mouth and heard the tone I had towards my Mom.  It was a short conversation, I apologized, explained, and thought better of interacting with anyone until necessary.  On another occasion, I couldn’t shake the mental fog surrounding me at work.  It’s unusual that I can’t shake it at some point during the evening.  This time it just lingered.  A few days ago, I had my first moment of genuine excitement.  It blindsided me, though I was grateful for the feeling.  I’ve spent enough time feeling fear and helplessness, it’s quite time for hope and action.

My version of action and participation are small actions that I can take to help ease myself into my new life before the stark shift that will occur with surgery.  Every time I put my hair back and feel self conscious about the lump in my throat, I instead imagine a scar there and try to place myself in the feeling of “after”.  Anything I can do to mitigate the shock of one day having my thyroid and the next, not, is constructive.  I plan to prepare myself as much as possible, participate in any way I can to receive my new way of life.

One thing I know is that there was a grieving process upon diagnosis and I can tell that another has begun upon taking real action with this new decision.  That in mind, the mood shifts I’ve been having this week seem more predictable than inexplicable.  So, tomorrow, I plan to go to the appointment; take some time to absorb and reflect; take a walk with my boyfriend; take the day as it comes and the emotions as they come.  Tomorrow will be all about relaxing, loving, laughing, and being grateful for life as I know it, for even if I wasn’t scheduling surgery, there are no guarantees, and life as you know it can change in an instant.  I plan to be thankful for the chance to prepare for the unknown.

 
 

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Pivotal moment, achieved.

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.html
I 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
Of course I am inclined to avoid the dismantling of my body, but the truth is, it’s already made the choice for me.  For a long time, the better choice for me was to keep the gland and take poison medication to control the condition and the dangerous roller coaster ride of symptoms that would eventually kill me if not for pharmaceutical intervention.  There are several logical factors that led to this decision, but ultimately it just had to be that mental shift that cannot be forced.
Anytime I have faced a decision to let go of something that’s been a big part of my life – usually a relationship – I’ve spent a long time making sure I was absolutely sure because I aside from difficulty in letting go of people, emotions, ideals, etc. without a mental struggle; I rarely look back once I’ve come to a decision and look to avoid regret.  I think that method will serve me well in this instance.
One of the things I had to let go of in this process was an idea.  For a long time, I clung to the idea that an act so severe as the removal of one’s thyroid should not be based on such superficial platforms as cosmetic appearance or financial resources.  However, I am comfortable with the fact that those are my two main motivating factors in this decision.  I only accepted that after my brain shifted.  My logical reasons are as follows:
  • 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.

 
 

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