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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??

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

 

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Quick update…

I’m getting an ultrasound of my thyroid in the morning.  I meant to post the schedule of events leading up to the surgery.  I’ll do that in the next couple of days.  The surgeon wants to get a 3-D image of my thyroid so he can see what he’s dealing with.  I’m sort of looking forward to it since it’s non-invasive and I’m curious to see exactly how big it is. Mainly for my own weird obsession with knowing quantifiable facts regarding my current condition.  I like math and puzzles.  It’s probably related to that.  It will also be an exercise in humility, as I’m always aiming to distract from my neck and I’ll have my boyfriend in the room while they are focusing on it.  It’s good character building exercise and it’s my last few chances to do it with my thyroid, so I’m taking full advantage.  I don’t want to maintain the “get rid of this thing” attitude.  I want to send it off lovingly and with my own brand of integrity.

I was planning on inserting a hilarious clip of 30 Rock character Tracy Jordan singing “My girl has a fat neck”  or   “Fat neck girl…  let me count your neck rings”   …you’ll have to appreciate from memory or pass it off as dumb if you are not a fan or watcher of the show.

 

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Emotional verbosity despite tracheal compression. facetious interlude. material reward.

I have to admit, I’ve felt very uninspired to write a new post regarding the details of my two hour surgery consult last Monday.  I started it, but mostly I’ve preferred to forget about it.  It is a draft that I will pick back up in order to provide those who are interested with a detailed account of my two hour surgery consult.  But for now, emotional rhetoric….

The last couple of days, I’ve been feeling strangled by this lump in my throat.  Not sure if it’s psychosomatic as my surgery approaches, but it’s not the first time I’ve felt this.  Usually, it’s only noticeable when I hug Anto with my chin above his shoulder; when I do chest opening stretches; and when I sleep on my stomach, that I can feel its constricting presence against my trachea.  Yesterday and today, its suffocating grip has been there at every moment of the day, leaving me in a panic to get it out of my body.  Perhaps my subconscious reinforcing the validity of my decision.

Yesterday, multiple times, I had to consciously fight off anxiety that started to creep in.  It felt like generalized anxiety in that I wasn’t sure what was wrong, I just felt easy.  Then, presented with physical symptom (dizziness, light headed/faint feeling, arrhythmia, vision changes), the same thoughts rush to my head:

Is this it?  Is this what it feels like as my thyroid finally decides to abandon ship and dumps all its excess baggage into my bloodstream?  Is this the beginning of a thyroid storm?  Will I be on my way to the hospital soon?  Will I be able to think clearly enough to call for help?

I’m looking forward to tossing that recurring worry aside as I move on with my life.  I’m looking forward to relieving myself of that stifling lump in my throat at all times.  I’m looking forward to joining the living.  I’ve spent too much time feeling deformed, thus unworthy; filled with shame and needing to hide.  Living this way has eroded my quality of life and as I’ve said before, perhaps if I were a more evolved person, it would not affect me in this way and I would forge ahead, unaffected by my perception of what others think of me.  That quest continues, maybe for the rest of this lifetime, but I’m not willing to give up any more of my life and fleeting youth to shame and anxiety, and I’m going to have to keep trying to transcend the ego without my thyroid.

*facetious interlude*

Though I don’t necessarily believe in equating objects with accomplishment, I do have one small material reward that I’m awaiting regarding this surgery.  There is a necklace that I bought just before my initial diagnosis roughly six years ago and have never since been able to enjoy.  That is, unless coveting it hanging in the corner of my bathroom every day for the last six years counts as such.  It’s handmade by one of my favorite local jewelry artisans, Christina from Vivid Boutique in Decatur.  It’s blue topaz – my birthstone – and it’s not that it was expensive, it’s just absolutely beautiful and my neck was, and will be again, so slender that it’s fairly small and it fits too tightly now, never mind that I avoid drawing any attention to my neck.  As an added bonus, it might also lay nicely over the scar.

 
 

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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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You just might find… you get what you need.

So this is my third flare of hyperthyroid since diagnosed with Graves’.  On the previous two occasions, I took methimazole, my levels went down, my dose decreased and eventually I achieved remission or some pseudo-remission anyway.  I’ve never had my levels go back up upon decreasing the dosage after my levels dropped nicely.  Well, I just got my levels back last week and after decreasing to 5mg per day, my levels went back UP!  Jesus Christ.

My levels on 3/4/2010 were as follows:

Thyroxine or T4 – 9.4 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 116 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .05 mclU/mL (normal range .34-5.60)

This lab was when I felt I was coming out of remission, under a LOT of stress, ended a relationship that changed the direction I thought my life was going, and looking back at pictures, I realize I had started to have goiter around mid-February.  Possibly sooner, but I don’t remember and it wasn’t bad enough that I was self conscious, just noticed it from a certain angle in a photo from late February.

I was put on 10 mg per day of methimazole.

Between this time and August, I had a terrible time trying to get medicated properly.  I waited too long between appointments and started increasing my meds because I felt hyper-er and hyper-er, so my prescription ran out faster.  When I was desperate to get a refill, I had a nightmare encounter with a nurse who would not allow me to have a refill without an appointment which got delayed first because I forgot about the bank holiday for which the lab was closed so I had to reschedule in order to do my labwork before my appointment.  Then that appointment was rescheduled for an entire MONTH later because my doctor had a death in the family and had to return to her home country.  I hope it does not sound like I’m complaining about that.  I certainly understand.  The problem was with the nurse and the fill-in doctor and fighting to get my prescription refilled.  I was taking sometimes 10, sometimes 15, sometimes 20 mg of methimazole per day.  I realize now that this was irresponsible, but I was in panic mode and just wanted the symptoms to fucking stop.  I was hating this disease and feeling like a victim.

So, because of a liver enzyme test, which was high, I had two labs within a few days of each other.  My labs on 6/25/10:

Thyroxine or T4 – n/a mcg/dL (normal range 4.6-12.9)

Free T4 1.7ng/dL (normal range .5-1.6)

Triiodothyronine or T3 – 155 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone  <.01 mclU/mL (normal range .34-5.60)

Then my labs on 6/28/10 were:

Thyroxine or T4 – 7.8 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 184 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .01 mclU/mL (normal range .34-5.60)

I’m not exactly sure how they changed this much in a matter of three days, but I was instructed to take 10mg in the morning and 5 at night for a week, then just 10 mg per day.  So I did 5mg twice per day and my levels came back as the following.

Labs for August 10, 2010:

Thyroxine or T4 – 6.1 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 127 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .03 mclU/mL (normal range .34-5.60)

So my levels had come down nicely and my dose was lowered to 5 mg per day.  I was thinking remission might be in store for me soon.  I have not had any relief from my stupid goiter and I’m goddamn tired of wearing my hair down.  I should say as an interparagraphical footnote that I swear when I’m extremely frustrated or very serious and passionate about what I’m saying.  I don’t do it on purpose, it just happens.  The rest of my speech is pretty PG-13.  So, I’m sorry, but I’m bound to use offensive language and if you suffer from Graves’ Disease, I probably don’t need to provide this disclaimer.  I wish I could remember the status of my goiter last time, but all I have are pictures from when I was pretty severe and only just starting on meds.

So after the standard 6 weeks of 5mg per day, I felt my symptoms coming back.  Arrhythmia, fine muscle tremors, anxiety, FUCKING GOITER (which just never left)…  I’d been having bi-weekly acupuncture up until my meds were reduced but things had been really slow at work and I had to postpone treatment and my levels went back up.  Go figure.  Perhaps that was part of the reason.

So my levels from 9/24/10 came back like this:

Thyroxine or T4 – 11.6 mcg/dL (normal range 4.6-12.9)

Triiodothyronine or T3 – 267 ng/dL (normal range 59-174)

Thyroid Stimulating Hormone .05 mclU/mL (normal range .34-5.60)

MOTHER FATHER!!!   I could feel this happening in my body unfortunately, so these results are not a surprise, though I was hoping for one.  So my meds which were cut in half at my last visit have now been tripled.  I’ve been instructed to take 5mg of Methimazole 3 times per day.  It’s surprisingly difficult to space them an even 8 hours apart with my erratic schedule.  The note on the lab work from my Endocrinologist read:  “Your level has gone up some.  More stress?”  Yeah, no shit.  I’m inundated by stress.

I hate my job and am getting too old for my line of work but can’t seem to get anyone to pay me a living wage to do anything else I deem the slightest bit satisfying.  I never even made it through a second interview for a job I felt completely qualified for, which paid $10 per hour.  Since I have a high health insurance premium, a car payment, and no roommates, this pay rate would’ve been unacceptable.

I’m meeting several members of my boyfriend’s family this week on a tropical vacation with this big ass growth in my neck and I don’t want to be consumed by fear and insecurity which would inevitably leave a bad impression on them.  I want to be myself, but I’ve got out of whack hormones and a physical deformity, I don’t know how to get over it so I can just be the person my boyfriend sees.

I’m about to turn another year older and I’m still doing the same unsatisfying job that I was doing at 21.  It’s a younger person’s work and I hate it.  I hate the environment, I hate the lifestyle, I hate the hours…    I feel like I’ll never find healing while I’m trapped in this work.  So I had a small almost epiphany the other night.

I’ve been working to change to more positive thinking, so each night I write down good things that happened each day as a way to dwell on the positive rather than the alternative.  I was reading back at some of the things I’d written and I came upon this exercise where I wrote all of the things I DO want rather than what I don’t want; what I don’t want has driven most of my life’s decisions, big and small up until now.

When I wrote this, I was still in a relationship with the person I broke up with last December and clearly knew was not the right person for me.  Here’s what I wrote:

When I think about my future, I imagine a satisfying, safe, healthy relationship with a man who I love and who is also in love with me.  He validates me, doesn’t judge me based on my humanity, but loves me because of it. …  Each day brings us joy that we get to share our lives with each other; thankful that we can go follow our own paths and then return to the warmth and safety the other provides.  I want to believe that it’s possible for me to create and have this in my life.”

I had completely forgotten about this until I re-read it.  The amazing part for me is that I have the relationship I was talking about maybe a year ago when I was in a different one.  It may seem silly, but after reading this and realizing that it has manifested, I wrote some more things down about my career situation and hope to look back a year from now and say   “Holy Shit!  It happened.  I never thought it would and it has.  I’m doing work that not only pays me a decent wage, but it’s satisfying and fits my lifestyle.”  I actually think it’s possible because I never thought I’d have this kind of relationship that I have now and it just sort of happened.

Around the same time that I wrote the above, I wrote some other things that I’d like to send out into cyberspace so that I may come back and look at them both to remind myself of my commitment to the choices I make to bring these feelings to my life as well as to look back on and say “Holy Shit!  This is my life now.”

“What I’d like for my life is to feel accomplished; to feel proud of what I’ve done and proud of what I’m doing.

What I’d like for my life is to fall in love with someone who is capable of sharing their love with me.

What I’d like for my life is to trust that I’ll be okay.

What I’d like for my life is to feel comfortable financially.

What I’d like for my life is to feel passion and joy for life and be conscious.

What I’d like for my life is to feel inspired and creative daily, hourly.

What I’d like for my life is to earn a comfortable living doing something I love.

What I’d like for my life is to feel safe being deeply, intimate and vulnerable with another person; to feel safe in a relationship.

What I want for my life is to feel positive and hopeful for the future while fully living each moment.

So dear reader, or just me…   Here’s what I’d like for my life today.  I want to achieve balance in my body without surgically removing any more parts from it.  I want radiant health that comes from both food for mouth and food for thought.  I want to be an inspiration to others with “incurable” diseases and help them find the path that’s right for them that may not have already been laid out by another.  I want to defy the odds and become whole and healthy.  I want to write a book.  Yes, that’s right.  I want to write a book and this is the only subject that I can go on endlessly about, so perhaps this will be the subject.  I want to keep my body intact and live free from medications.  I want to channel my stress more effectively so it doesn’t get clogged in my endocrine system.  I want to love life.

 
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Posted by on October 8, 2010 in Graves' Disease

 

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physically deformed vs. unable to sustain life without synthetic drugs

Why should I have to choose?  This is my third flare up of Graves.  I wish I’d kept better records regarding the perceived size of my goiter, symptoms, levels, etc.  I seem to remember the size of the goiter DECREASING after a few months on anti-thyroid drugs.  I’ve been on methimazole (a.k.a. tapazole) for about 7 months so far during this flare up and I swear the f**king thing has gotten BIGGER!?!  Why should I have to choose between being physically deformed (with the added bonus of all the emotional baggage that carries) OR have surgery to remove a vital organ that makes a hormone so essential that without it, I’d slip into a coma and die in a matter of days?   …not to mention the common after effects of weight gain, depression, hair loss, fatigue, muscle pain, brain fog, short term memory loss, etc.

It’s enough to send me face first into my mattress, dampening it with an endless supply of tears on a daily basis.  Or.. it could send me into a rage like it did on Saturday.  I felt so powerless that every time I looked in the mirror, I was greeted with this big fat neck, and I went HOWLING mad.  I tried hitting my bed with a twisted up towel.  That made me angrier, so I tried hitting a chair.  No dice.  I threw some non-breakable things, I slammed some doors, I even slammed one so hard that I was temporarily trapped.  I was so angry at my body and myself for not being able to find a way out, strangled by this gland that I wanted to strangle it.  I knew it was reactive, but I didn’t know what to do with those feelings.  I felt so powerless to provide my body with the right environment for it to balance out that I sometimes feel that I may as well abuse it.  I can’t take back the years of cigarette smoking, the poor dietary choices, the poor sleep schedule that helped this damn gene express itself.  I feel utterly powerless, emotionally isolated with no stories of inspiration that I can ever achieve a lasting remission.  I watch all these assholes around me abuse their bodies while I do the best I can to take care of mine and here I sit, with this swollen gland in my neck, (previously anonymously) typing this blog that no one will read.

This swollen butterfly in my throat has slowly mutated my personality, just as its morphed my physical appearance.  It’s funny how 100 grams of tissue can change me inside and out.  Throw a scarf on and no one’s the wiser, right?  Wrong.  It’s absolutely crept into my identity and I’m no longer the person I was.  Any moment of happiness is quickly evaporated as I am reminded one way or another of this betrayal inside my body.  Aside from the arrhythmia, the hand tremors, the anxiety bordering on panic, it’s turned me into an insecure scaredy-cat with a frog in her throat.  I used to feel pretty, I was pretty..  Now instead of envying the would-be supermodel, I envy the neck of every woman with her hair up.  I’m consumed by it at work, when watching movies, even when surrounded by friends.  It’s NEVER not on my mind.  I feel like my life is over and in a way, it is.  My life as I once knew it is over.

Say I get this victim of an organ out of me and my profile looks normal.  Everything’s fixed?  If it were that easy, I would’ve had this sucker ripped out at first flare.  No, unfortunately it’s more complicated than a daytime drama.  First, the disease is autoimmune, affecting the thyroid, eyes and skin.  So what happens if the other two organs react to the autoimmune antibodies that cause the symptoms of this disease?  Do I get my eyes and skin removed?  The answer does not lie in killing this organ.  Beyond that, I fear all the stories I’ve read about regarding weight gain, hair loss, depression, fatigue, brain fog, memory loss, etc.  I’ve had a couple episodes of depression and there is NO WAY I could live with being a fat, tired, depressed woman, even with a normal looking neck.

What do I do?  Is there anyone out there who’s achieved remission?  Is there anyone who feels normal after a total thyroidectomy?  I’ve heard the horror stories, I’m seeking the success stories, whatever they may be.  If you have had any kind of medical success when the odds seemed stacked against you, I want to hear it.  Leave me your story in a comment.  I sure could use some hope.

 
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Posted by on September 27, 2010 in Graves' Disease

 

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