You just might find… you get what you need.

08 Oct

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.


Posted by on October 8, 2010 in Graves' Disease


Tags: , , ,

2 responses to “You just might find… you get what you need.

  1. joanna

    August 18, 2011 at 5:41 pm

    Thank you so much for sharing yourself with us. You are revealing a very raw, real part of you that I can completely relate to, on many many levels.

    You know I suffer from an autoimmune disease and chronic, debilitating migraines. And you know some other deep, raw history I have from our past conversations. Sometimes life just feels like there is no break with the curve balls it throws. People with the invisible diseases are in a constant state of fighting it, and it can be exhausting both physically and mentally. I know. I just had a weird devastating episode for two days.

    As far as a career, I know it’s probably been mentioned, but you make beautiful soap…..

    • houffenglaarfert

      August 23, 2011 at 2:11 pm

      I’m thankful that you appreciate it. Sometimes I’m not sure of my decision to go public. I feel like anyone I come face to face with and has my email address could know but not acknowledge all of these very personal things about me. It’s unnerving and freeing at the same time.

      I think you would enjoy the post I linked to in Gary Graves’ Rainbow Disorder from GravesBlows – it’s a great, humorous description of what it’s like to have a bully called autoimmune disease follow you around. Really good for a laugh and to know that you’re not alone.


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