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Abbreviated Update

I keep meaning and meaning to write, but have had so much on my plate lately.  It’s like my life went from zero to sixty after my surgery.  In fact, I had the surgery and just continued on as if nothing had changed.  In fact, it gave me a stable base, I feel.

I was so worried about what a roller coaster post-op would be, but I think that’s mainly the norm for RAI patients.  For me, the roller coaster was the part where I came to peace with my decision and finally went at it with some grace.  Physically, though with RAI, there’s no way to fully know how much or how long it will take to kill off some/all of your thyroid cells, so there is major fluctuation between what your thyroid is producing and the meds.  With surgery, once it’s out, you can calculate that it is producing exactly zero thyroid hormone and you start with a simple formula for replacement medication:

1.7 mcg/kg/day

So, if I weigh approximately 66.5 kg, I multiply that by 1.7 = 113ish

I started on a dose of 112mcg/day and am due for my labs at the end of the month.  Actually should be sooner, but my Endocrinologist is out of the country until then and it’s a fairly simple calculation – and she is flexible with my requests because I’ve been such a responsible patient, and she’s seen me every 3-4 months for the last 6 years….

But, I feel pretty good. Here are the bullet points that may or may not be related to the actual surgery or synthroid:

  • Skin has been more sensitive – more prone to contact dermatitis from a specific pair of shoes that were mildly irritating pre-surgery
  • Went through a period of intensely dry lips & cracking on the corners – have a feeling it was any combination of the following: hard to keep hydrated no matter how much water I drink (strange sounding, I know, but don’t ask me how I figured this out); slight anemia during one week that coincided with my worst symptom; good bacteria had not grown back sufficiently after all the harsh drugs and prophylactic antibiotics (was having severe digestive issues for the first several weeks)
  • Have added B-12, probiotics, and Vitamin D to my daily regimen

Hard to remember the transient symptoms, but bloating easily from any food by the end of the day.  Frequent, persistent stomach aches (these come and go already, but they were more frequent).  Sensitive skin & dry lips feel related to me.

Also, for the last couple of weeks, I’ve been having the weirdest sensations at my incision site.  I think it’s the nerves growing back together.  I was aware that the skin above the scar would be numb for several months and it has been.  First it started as a weird itching directly on the scar, like dry skin that’s being stretched, it itches but some shea butter would make it feel so much better.  So that’s what I did, I applied shea butter and it made it feel less itchy.

*I should note here that I bought Mederma, but haven’t really been using it.  It seemed too harsh to put something that dissolves layers of skin somewhere that’s trying to grow new layers.  I’ll try it a bit later, just seemed too soon even if the package says it’s okay.*

Now that itch has turned into a pinching/burning sort of sensation that lasts for 20-30 seconds at a time.  Then it disappears and comes back randomly throughout the day or night.  I really think it’s the nerves growing back together because when I rub the numb area, I’m starting to feel it a tiny bit nearer to the either end of the scar.  It’s very similar to when you go to the dentist and they numb you.  As the feeling comes back little by little, just imagine it dragged out over the course of several months.

I have to say, if these are my only issues, it’s not so bad.  The dry lips thing is highly irritating, but it’s better than palpitations and panic attacks.  It’s like the layer of skin is tight over my lips, it’s not cracking and peeling, or anything really gross.  You couldn’t even tell by looking, it just feels annoying.

So, sorry for the disjointed post, but in winding down from work, with the limited brain capacity I have after a Friday night of non-stop action, I thought this might be the best use of my time since I can’t really do anything too demanding.  I’m not even going to bother re-reading and editing, which I normally would do because now I’m tired and need some sleep.  I hope most of my sentences aren’t too awkward.

P.S. – Go back one post and look, I added a picture of my accidental dessert for breakfast.

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Amalgam

This process so far has been surprising me left and right.  I’m very thankful for all the support I’ve been receiving through different avenues over the last few weeks.  Texts, emails, blog comments, phone calls, even hand written letters!  It’s given me a feeling like people are rallying around me, supporting me through this.  The surprising part is how alone I have begun to feel in all of this considering the massive support I’ve been receiving.

Wednesday, the fear started to set in.  I’ve been working on my self talk to get me through it and though I’m not where I want to be, I have faith that when the shart hits the fan, I’ll pull through like I always do.  It’s taking some serious, conscious effort to keep talking to myself and keep steering my focus.  Yesterday I started on Lugol’s solution – basically straight iodine, like the kind you’d use to disinfect topically – three drops, three times a day.  This is the stuff they give after radioactive fallout to protect the thyroid.  It’s also used, in my case, to prepare the thyroid for surgery.  It decreases the vascularity of the thyroid so that there is less bleeding during surgery.  It also blocks the thyroid from making thyroid hormone, so I figured I could expect to feel somewhat hypo, though I’m not sure if I’d feel it in a matter of ten days.

I started on it yesterday and the stomach upset was not too bad, but all of the sudden, while brushing my teeth, I had extreme sensitivity in several teeth.  One in particular.  A few years ago, my dentist noticed a dark spot on an x-ray at the base of one of my bottom front teeth.  She thought it indicated a dead or dying tooth and that I would need a root canal even after tapping and ice confirmed that the tooth was very much alive.  Fortunately, as I sat in the oral surgeon’s chair, he confirmed the viability of the tooth and sent me home saying I didn’t need one.  It must just be an anomaly and to keep an eye on it.  Well….  that’s the one that’s the most sensitive.  Being that one of the more worrying side effects is tooth/gum pain, I’m attributing this one to the Lugol’s.

The other side effects I’ve noticed so far are headaches at the base of my skull; metallic taste in my mouth; and mild stomach irritation.  I’m not prone to headaches, so when I got one shortly after taking my second dose last night at work, I was none too thrilled, though that wasn’t the worst effect.  For some reason I felt hyper symptoms within a short period after my second dose.  My hands were visibly shaky, my heart and respiratory rate went up, anxiety reared its ugly head and all I could do was keep working, breathing, pretend none of this was going on while presenting my happy face to the customers.  Fortunately it passed, the night ended, and now I have a day off.  It was such a surreal moment at one point.  I looked around, realizing that everyone was in their usual work pattern, probably feeling like it’s just another stressful night, nothing seems different.  To look at me, you’d probably think the same of me, unless you know me well.  No one had a clue what was happening behind the smile.  I felt so alone, strong, fragile, sad, powerful, scared, and vulnerable, all at the same time.

This is the part where the people who love me want to do everything they can to help, but they just can’t ease or maybe understand certain burdens. This part I have to do alone and be alone in my body as it endures this process.  As I write this, 40 minutes after taking my first dose, I can feel the back of my skull starting to ache.  I also began the lady pains something fierce yesterday, a uterine migraine, if you will.  So my whole lower abdominal region hurt; my lower back ached; my knees have been particularly painful lately, just squatting down – which I do a lot of in my job; the base of my skull felt tight and sharp and achy; my teeth hurt when I brush them; my fear comes in waves; and on top of that, my ability to care for myself seems to have halted.  I’ve been better.

Last week, I was having these cleaning urges.  I kept feeling like cleaning, organizing, purging useless clutter.  It felt like a really good sign of my internal status.  I cleaned out two closets, reorganized half of my soap room, cleaned out under the bed (half the stuff my cat put there), kept my bedroom, living room, kitchen quite free of daily clutter…  Then, on Wednesday, the fear struck and that all stopped.  My clothing from the last couple of days is strewn about the bedroom, my bed is left unmade, my sink is full of dishes.  It’s not disgusting yet, but if I don’t do something today, I’m going to feel pretty awful.  My pre-op appointment is at 7 a.m. tomorrow and I’d like to wake up to a clean home before that.

So, as part of my conscious effort to stay positive and focused.  As I end this post, I shall proceed immediately to the kitchen, where I will do my dishes, and from there, the clothing in the bedroom shall be put in its proper place and I shall clear my dining table of the debris its collected over the last few days.  You see?  I still have fear, I still feel alone, I still feel frozen and overwhelmed, but only until I say “enough already” and do something about it.  I’m still scared but I have to do only what I can do and then “let go all holds” and trust.

 
 

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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.

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

 

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