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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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You can’t hold onto Jello by squeezing it in your fist.

Things have slowly settled into place since my surgery was rescheduled.  My boss at work retooled the entire schedule so that I could work a full schedule up until the day before surgery.  I know that had to be a pain in the ass, so that felt really generous of her.  Even though I did end up with a couple of extra days off the first week, which makes finances a little tight, at least I’m not out of work for a month.  That’s a huge relief!

I was able to reschedule my tax appointment for a day that does not interfere with work.  That was a concern since my tax guy is way out in the suburbs.  To make tax day easier to take, the three of us (my mom, Anto, and myself) are going to head up to Amicalola Falls afterward and make a day trip out of it with a picnic and a hike.  Lovely.

My mom’s original return flight was April 1st.  Being that my surgery was rescheduled for April 6, we looked into what it would cost to change the return date.  Turns out it would be about $350!!  So, I looked to Ol’ Faithful: Clark Howard’s Atlanta travel deals website to see if there were any deals.  It just so happened that Frontier was running a special to Albuquerque, where my mom lives.  We decided to wait a day or two to book the one way ticket, as we were waiting to hear back from the surgeon’s secretary who told us she might be able to reschedule for March 30.  I went to check if the deal was still on the next day and all the information was replaced with a notice that the Clark Howard show was on vacation in Europe and travel deals would resume the following week.  What luck!  If I hadn’t checked it the day before, I’m not sure I would’ve discovered the fare sale.  So we went ahead and booked with Frontier.  It cost $244, including two checked bags which would’ve run an additional $30 for one on the original flight with United.

As it turns out, I may even just get a night or two in the cabin in the woods, yet!  My mom will only be here for one week following my surgery, rather than two, so if we can get it, we’ll go to the cabin just four days after my surgery.  Knowing that many people with desk jobs return to work after one week, I am hoping that a one hour car ride won’t be too much for me.  I think a couple days to relax in the woods will be just what the doctor ordered.  *fingers crossed*

So, it seems that when you just let go, things eventually work out.  I can’t tell you how stressed I felt the moment the decision was made to delay surgery.  Not knowing how difficult each variable would be to change.  I just had to approach it one thing at a time.  When I wrote the last post, I had chosen to let go and felt a tremendous weight lifted.  Fortunately it stuck.  I’ve remained loose.  It had been like trying to hold onto Jello.  The tighter I clench my fist, the more of it that squeezes out through my fingers and onto the floor.  If I just open up my hand and let it be, it’ll wiggle and dance in its gelatinous glory and remain in one piece.  Then, if it still flops on the floor, it’s because there was an earthquake or I fell asleep, either way, due to events beyond my control.  Not the most graceful analogy, but you catch my drift.

 

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Sometimes a pothole doesn’t result in a flat tire, it just shakes you up a little.

It’s funny when you’re looking out for bumps in the road, how you can completely miss a big ol’ pothole that jacks your sh*t up.

Maybe I only think this is funny because I live in the south or because I can mimic it really well…. and because there are some nasty potholes down here! And not just the metaphoric kind.

This remission junk has me all flustered.  I’ve been in remission once, it lasted a year.

Being hyperthyroid sucks.  The first time that led to my diagnosis was great, though.  I had loads of energy, I lost a few pounds, and I felt like I was always on allergy meds (read: speed).  Aside from these signs, the first noticeable abnormality was when a guy I was seeing mentioned that my heartbeat was twice as fast as his.  I dismissed it until my throat swelled and I freaked out and went to the doctor, was referred to an Endocrinologist, and went on anti-thyroid medication.  I didn’t think too much about it once things settled down.  The gravity of the diagnosis did not sink in until two years later when I came out of remission.  I didn’t fully understand what was going on in my body or what it meant to live with an autoimmune disease that would take such a toll on my body, mind, and relationships.

Looking back, even though it just felt like twenty-something melodrama, I had a lot of emotional turmoil that fluctuated with my levels.  Graves’ is associated with anger spells.  I had those.  “Graves’ rage”… I even lost a couple of friendships because of it, though I didn’t understand or forgive myself and them until recently.  Graves’ Disease often gets misdiagnosed as bi-polar disorder because you really do have those high highs and low lows.  I remember a Thanksgiving with my family in Boulder about four years ago and I had this spell of incredible anger/sadness/depression to the point where I thought living wasn’t such a gift.  Thankfully I made it through that, and it’s a place I never want to visit again.  At that point, I was on the same dose of AT’s and wasn’t having my blood work done regularly and I think my thyroid levels dipped too low.  I learned an important lesson and have gotten my levels checked regularly, every 6-8 weeks, since then.

When I came out of remission and went hyper for the second time, it wasn’t pretty.  It aged me about 8 years, instantly.  People have said to me “oh, at least you have the good one where you lose weight.”  …  get ready for an anger spell.  In fact, I did lose weight, but it was all lean body mass, muscle mass, cardiovascular strength, I lost a lot of the fatty tissue under the eyes, making me look like a crack whore.  When I went back on medication, I gained a good amount of fat on top of the muscle loss, I had belly fat overnight – which was something I never had all of my life, so my body composition has changed.  The average weight gain after 4 years from Graves’ Disease regardless of treatment method, is 25 pounds.  So, even though I fear weight gain after a thyroid removal, I’ve manged to keep my weight fluctuating within a range of about 10 pounds, so I suppose I’m doing alright so far.

Other fun side effects of being hyperthyroid include heat intolerance, shortness of breath from simple things such as speaking, fine muscle tremors, heart arrhythmia, and anxiety.  Right when I came out of my pseudo-remission, I tried working in fine dining.  Serving martinis and pouring wine were quite embarrassing.  I had a very noticeable tremor in my hands and was completely uncontrollable.  Guests must’ve thought I was hungover or ‘drying out’.  I’m sure I was judged, but I have a feeling I was being judged just because I was serving them in the first place.   Also, when speaking, which I had to do a lot of, I would run out of breath.  I tried to hide it, but it was as if I’d run a mile before speaking to each table.  We also had to wear jeans, a long sleeved, white button up, and a full body burlap type apron.  As you can imagine, Atlanta is quite warm in May.  The building where I worked was old, air conditioning leaked right out the walls, and forget it if I had a patio section.  I was a sweat ball.  I’m usually the person who is always cold, so this was a new thing for me and I felt like I was suffocating in my clothing.  I didn’t stay at that job for very long.  Also, it was a shitty place to work.

Fortunately, at the age of 19 I experienced a panic attack, which has enabled me to talk myself down from the hundreds of attacks I felt coming on over the last six years.  I know this is directly related to thyroid, because I don’t experience anxiety when my levels are normal.  I’ve been fine for months and months.  When they’re up, though, I’ve felt on the verge of one at work, behind the bar, in the middle of service; on the highway; anywhere it would make a scene, I’ve had to talk myself down from one.  Clearly, that makes genuine, friendly interaction difficult sometimes.  I’m pretty proud of myself for dealing with it through breathing and mental tools, but looking back, MAN is that exhausting.  I think most people would be on Valium, or whatever the patented, brand name anti-anxiety pill of the year is.  (Notice what I’m reading off to the right there, it’s heightened my skepticism of prescription medication.)

Relatively shortly into my relationship with my boyfriend, he surprised me with Ray LaMontagne tickets, which, even though I guessed and ruined the surprise, I was really, really excited about because I’d missed the opportunity to see him live a couple of times and I really like him.  Anthony had worked that day and so we decided to swing by Whole Foods and eat something before heading out to Chastain.  All of the sudden, at the hot bar in Whole Foods, I started having palpitations, like regular, frequent palpitations; unlike the occasional disturbance after exercising or something.  It was very scary, I was literally thinking “I don’t want to die yet, I have so much left to do” while staring at the napkin dispenser and trying to calm down.  Then, by the time things settled and we left for the show, we ended up arriving right at the intermission and were disappointed to find that we’d missed Ray and had to settle for David Gray.  I had to use my mental strength to appreciate what I had (David Gray and an awesome boyfriend who wasn’t my boyfriend yet) and not what I didn’t have (the experience of seeing Ray LaMontagne live).  Either way, I don’t want to put my heart in danger like that ever again.

These are all symptoms that subside once thyroid levels are brought down.  The problem is that the cardiovascular effects become more dangerous as I get older and levels don’t adjust the instant you take the pill.  It’s a long process to get the levels down.  The key to thyroid medication, whether supplementing or blocking, is consistency.  It takes a minimum of 6 weeks to see the effect of a dose, so it can take about a year to get both T4 and T3 into range.  That’s a long time to be dealing with symptoms like these.  I think I’ve had enough of those wild swings.  It’s very disruptive and damaging and after 6 years, I’m looking for some stability.

As many fears as I have concerning this surgery, the one real hope it offers me is a chance at stability.  I recognize that it might be a rough go at first, trying to find the right levels, I may not feel right for quite some time.  I might not ever feel right.  I don’t even feel right, right now.  My levels are so low that I’ve been experiencing hypothyroid symptoms.  Depression, tiredness, lack of energy – I have to force myself to go out for a run and when I do, it’s like I’m running through three feet of water.  Only a few months ago, might I remind you, I came in 3rd in my age group for the Thanksgiving 5K and craved going out for a run.  It’s a stark difference in how I feel with a reduction in my thyroid levels.  My muscles just feel like they’re not getting what they need to work.  It’s a strange feeling, unlike losing fitness from being inactive.  It’s a very strange feeling.  I also have had a little bit of depression, which I don’t like at all, but when I can recognize these as physical symptoms from low thyroid, it helps me to not identify with it and therefore not beat myself up or think something is wrong with me, other than a stupid autoimmune disease.

My hope is, once I find an optimal dose of thyroid hormone after surgery, that I can take those wide swings out of the equation and get on with my life.  It’s taken a lot of mental energy for me to try to maintain any sort of homeostasis, and in fact, mostly I have to fake it to trick myself into feeling balanced.  There’s no denying that I am at the mercy of numbers, but I have a certain element of control if only in the perspective I choose to view my circumstance.  It’s tough in the moment when things are out of whack, and it’s a lot easier to look upon my experience with normal levels of thyroid hormone in my bloodstream.  I’ve made this decision with a level head and maintain my decision.

I don’t want to let this surgery creep up on me while I’m waiting and seeing.  I want to actively move towards it with intention.  Participate, not let it happen to me.  That’s very important in avoiding regret.  I have to approach this with the intention that it is my choice.  I’ll never be 100% sure that my decision is the right decision, and that’s what has kept me from making this decision.  I have to move forward with the attitude that I’m moving forward.  I do not have the option to look back after the surgery, and though I can still cancel it in the next 26 days, I have to take that perspective now.  There are several very good reasons why I have made this decision that don’t really change according to my latest lab values.  I am still scared.  Very scared.  So scared that I have been writing letters to the people I love, just in case….  But I’m moving through this fear and it could be the best thing I ever do.

Maybe it’s all just a big hoax to trick me into thinking I have control of my destiny, but I’ll leave that discussion up to the philosophers of yore and Stephen Hawking, and I’ll just focus on my perspective.

 
7 Comments

Posted by on February 24, 2012 in Graves' Disease, Total Thyroidectomy

 

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Really? NOW?!? wtf

So I just got my labs back.  My TSH is normal for the first time in years.  My T3 and T4 are on the very low end of “normal” which is why I have been feeling tired and sluggish and depressed, I imagine.

I also had my antibodies tested and they are normal!  Normal is considered as less than 110 and mine are 105.

This would normally be a time for celebration, but of course, my TT is scheduled for March 20th and here I am, looking like after 6 years, I could be in remission and I’m weeks away from having my thyroid removed.  My thyroid that is behaving itself, even if it’s a bit beat up, diffuse, and multi-nodular.

The thing is, I still have a goiter and my health insurance premium/coverage is not sustainable for frequent lab work (I hate that this is a deal breaker) and of course, there’s no rhyme or reason to Graves’ and it could come back at any time, thereby necessitating the frequent lab work.  I’m fairly angry that of all the times in the last 6 years, once I resolve to have a TT, my body decides to play nice.  Like my resolve is being tested….

I had this visual last night of my thyroid, like a child being threatened with revoked privileges, pleading with me, saying

“no, please don’t take me away!  I will be good, now, okay?  See?  I can behave!”

Because after all, the thyroid is the victim too.  It’s being attacked and doing what it’s told to do with the gun of the TSI antibodies against its head.  Now the criminal has fled, but what happens when “he” returns to the scene of the crime, and then six months from now, a year maybe, when thyroidia forgets that she was in danger of being sliced, gets caught with her purse open and TSI villain shows back up and I’m sitting here looking at a line-up with heart palpitations, having to wait months for my levels to go back down with a higher dose of meds saying “why didn’t I go for it when the time was right?”.

Thoughts??

 
8 Comments

Posted by on February 23, 2012 in Graves' Disease, Total Thyroidectomy

 

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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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