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Taking Risks

28 Jul

I’ve decided not to maintain this blog anonymously anymore, I’m coming out.  The original reason I started this blog sans identity was two-fold.  First, I wanted to say whatever was on my mind without a filter for fear that I would be judged or found out.  Second, there are various aspects of this disease that have created feelings of shame within me, namely, the visible enlargement of my thyroid.  What I found was that I used more swear words, was less succinct, got less personal satisfaction from my posts, and it exacerbated my feelings of isolation within my disease.

When I was 23, I decided to get a tattoo of the eagle from a Polish crest I found.  My father is from Poland, and throughout my adolescence and young adulthood, upon learning my last name, people would hit me with their vast knowledge of Polish jokes.  Instead of considering these people as ignorant propagators of false stereotypes, I became embarrassed to tell people my last name.  I chose to get the tattoo as my own form of behavioral therapy.  Though I’m forever branded with a ‘tramp stamp’, I like to consider myself a pioneer of that trend.  When I got the tattoo, it was not that common and thus, had not yet earned itself a moniker.  But I digress…   From then on, when people asked about the tattoo, which inevitably they would, I’d proudly declare my heritage.  I haven’t felt shame over the “ski”  in over a decade.  Maybe it was the tattoo, maybe it was part of growing wisening up; either way, it worked.

My intention is the same here.  Though there is still some sort of anonymity through the fact we’re not having this conversation face to face, it still is an effort to abort the shame from my repertoire of emotions regarding my Graves’ Disease.  This journey is hard enough without feeling like I have to be ashamed for things beyond my control.  I have a noticeably enlarged thyroid.  It’s humiliating.  I have to wear my hair up at work and I swear there are people who notice it and must think I have an adam’s apple.  When I tell my family this, they laugh, but they don’t experience the looks and whispers that I notice.  I attribute this to general ignorance.  Most people don’t know what the thyroid is let alone where it is or its function.  I didn’t until I had to.

So, I’m taking the first step of my behavioral therapy with this blog.

What?  Why don’t I just get it removed?  Well, you may want to reference this post because I just don’t have the energy to go into it again.  I will say this, the cliche of “having a thyroid problem” being a euphemism for being overweight did not become cliche without reason.  Every time I think I’m ready to get the surgery and get the first roller-coaster year of adjusting levels over with, I read one horror story after the next on a message board about someone who gained 30, 60, 100 pounds, and I chicken out.  There’s no way to know how my body will react to synthetic hormones.  I may do fine, I may not; I do know one thing…   apparently I’m more afraid of being fat than I am of being slightly deformed.

I’m terrified of all the implications it could have on my life.  I have a wonderful relationship that means the world to me and I’m scared that even if an extra 30 pounds didn’t drive him away, the depression and self-loathing I’d feel would do the trick.  I hesitate to put that in writing, but that is my fear and I’m tired of keeping it bottled up.  I’ve struggled with depression at times in my life and I am not willing to risk a potential lifetime of it yet. I’ve traveled with strangers, I’ve given away my heart, I’ve moved to a city I’d never visited, I’ve quit my job in the middle of a depression, but this surgery would be the biggest risk of my life.  I’m scared of ending my life as I know it, even if it’s not for the first time.

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17 Comments

Posted by on July 28, 2011 in Graves' Disease

 

17 responses to “Taking Risks

  1. Thyroid geek

    July 29, 2011 at 1:33 pm

    You post remind me about my high school teacher who had large thyroid nodule called “Madam’s apple”:)

     
    • houffenglaarfert

      July 29, 2011 at 4:58 pm

      So here I am, my first foray into the public, not trying to hide my relatively small, but in my mind’s eye, gigantic, essential organ in an effort to shed the shame I feel and I’m met with ridicule. I understand that the title “Taking Risks” includes the risk of ridicule, but I suppose I expected to be met at least with compassion if not a little bit of understanding. I always thought I was my own worst critic and perhaps I’ve just been proven wrong. I have to admit, my first inclination was to delete the post and go back into the shadows of anonymity. It’s very difficult for me to separate my thyroid from my identity, or from my body for that matter.

      I suppose I might think it were a clever play on words if the pain and humiliation of this disease hadn’t seeped into the very core of my identity over the last couple of years. You’d think someone with the screen name “thyroid geek” would have a little more sensitivity to those with thyroid issues, but perhaps you have not suffered any thyroid woes of your own.

      One thing is true. Everyone gets something. It may be physical, it may be mental or emotional; visible or invisible. It may have manifested and it may be lying in wait. I hope when your “thing” manifests, you’re met with the same compassion you offer to others.

       
  2. Keya Horn

    July 29, 2011 at 4:42 pm

    I find this blog incredibly brave. You are taking charge of your life and this disease. Disease should not be associated with shame and I applaud you for taking this step to eradicate the
    shame. In life we must learn that those who are ignorant and hurtful will eventually be hurt by
    another equally ignorant person.

     
  3. Sasha

    July 29, 2011 at 6:43 pm

    Good for you! It’s scary to start “owning” it in such a public manner. I was scared when I first did, but I have never regretted it since. Your being public will help so many others. 🙂

     
  4. Integrator

    August 10, 2011 at 3:47 pm

    Well, some meical professionals are making a cynical jokes about the patients.
    I would like to share a funny story about myself.
    I was introduced to a new boss who was wearing super strong perfume, which caused me to sneeze badly (due to my allergies) and to spray him wit my “nasal discharge”:)
    such simple thing can put a person into the very difficult situation.
    If you are afraid that your relationship with other person may break in case you will get some weight, you should dump this person now. And by the way only 10% of the people are gaining weight after thyroid surgery.

     
    • houffenglaarfert

      August 10, 2011 at 4:13 pm

      Thank you for your input. Sometimes our fears are irrational. I’m working on optimism. It’s not a statement of his character, just one of my fear surrounding this issue. Could you please tell me where you got that statistic? It’s hard to get real information on the internet if you don’t know where to look.

      Even if that’s true, statistics don’t matter to the individual. There’s no way to know how my body would handle synthetic hormone replacement, and that’s what scares me. Aside from weight gain, there are so many other ways your thyroid affects your body and mind, it’s extremely intimidating to think of what it would be like.

       
  5. Integrator

    August 11, 2011 at 1:58 pm

    I did not have a chance to look on the article which stated that 10% patients gained lot of weight after the thyroid surgery, but I found much more relevant article that you may want to read. (Link to the abstract, http://www.ncbi.nlm.nih.gov/pubmed/11201857), “Is excessive weight gain after ablative treatment of hyperthyroidism due to inadequate thyroid hormone therapy?”
    According to that article, the cancer patients who are receiving T4 “overdose” to suppress TSH (which believed to cause re-growth of thyroid tissue) and have their TSH levels very low are not gaining weight as compared to the people who received T4 supplementation after ablation for a Grave’s disease because their dose was selected to bring their TSH to the “normal“range (which has “variable” upper limit).
    Hopefully, this helps.

     
    • houffenglaarfert

      August 12, 2011 at 9:38 pm

      Interesting, but supports my fears… I like the pub med site, it’s got some interesting studies when I am able to interpret some of them. 🙂

       
  6. gravesblows

    August 16, 2011 at 3:43 am

    I’m curious, I’ve heard you mention anti-thyroid meds and thyroid surgery but not radioactive iodine therapy. Is RAI therapy not an option for you? My understanding is that the side effects (weight gain, depression, sluggishness, etc.) are not even close to as bad as having the thyroid removed. Let me say in advance that I was only diagnosed a few months ago and I don’t have a goiter or what not, so I don’t know exactly how you feel, but I can certainly sympathize with what you are saying. Each time I have an ‘attack’ I am completely irrationally convinced that I am going to die. You’ve just got to hang in there. This disease completely sucks, but you aren’t alone in it.

     
    • houffenglaarfert

      August 16, 2011 at 4:10 am

      RAI was recommended immediately upon diagnosis. The word radioactive immediately turned me off, and I’m not of the mind to just obliterate an organ without giving it a chance before opting for the irreversible. In my research over the years, I’ve come to learn several things regarding ATDs vs RAI vs surgery that make my second choice (third if you count remission as my first choice) the surgery and RAI as my last resort.

      1. TED is much more common after RAI than surgery. I read about one endocrine surgeon at a university hospital who has a theory that removing the thyroid removes the antigen in the faulty immune system and therefore the antibodies that contribute to both hyperthyroidism and TED and the weird shin skin thing are lessened and perhaps that is why the statistics are as they are.

      2. I have a goiter probably because I’ve gone through three flares of hyperthyroid. The first time, it went away because my levels came down, but became enlarged again in order to accommodate the extra hormone. When the levels come down, these cells are still there, but they cluster and shrink, kind of like scar tissue, the way I understand it. So I have small little lumps. I think it’s so rare i the US because RAI is cheap and physically non-invasive, though I consider it to be more-so. Anyway, I don’t know if it would go away with RAI, as it would with surgery.

      3. The US is the only industrialized country to use RAI as a first line of treatment for thyroid disease. Other countries try meds first, then surgery. I believe it’s because of the different health care structures.

      4. When you take RAI, there’s such a long roller coaster period of adjusting levels because they don’t know how thoroughly it’s going to work, so it takes a long time to get the levels to where you feel “normal”. Also, you have to pretty much quarantine yourself, you can’t hug people for a month, close physical contact either. I have a cat and a niece who are both MUCH more susceptible to the radioactivity that would be emitting from my neck for months. I know I would never clean every single place I touched well enough, and I’d be totally OCD about not being able to see what I made radioactive and I’d probably end up throwing out all of my belongings and I can’t afford a new wardrobe 😉

      Soooo…. those are the reasons I don’t consider RAI an option for me. I think it has its place, but it’s not in my body.

       
  7. Integrator

    August 22, 2011 at 4:57 pm

    Do you have, by any chance, an information about the size of your thyroid from the last ultrasound?
    Also, have your blood been tested positive for TPO antibodies?

     
    • houffenglaarfert

      August 23, 2011 at 2:05 pm

      I’ve only had one ultrasound and that was when I was first diagnosed. I look at her notes when she types them in each visit. Besides being “highly resistant to RAI or surgery”, she estimated it to be about 25 to 35 grams. I am fairly sure that’s accurate.

      As for antibody tests, my endo has never ordered one, but I have checked the box for TSI antibodies, and I did have them off the charts. They go down the longer I’m on meds. I haven’t checked them in several months. My endo scolded me for checking the box on my own and said it’s only necessary once a year even though she’s never tested them in over five… Anyway, TPO is usually tested for Hashi, so I didn’t bother with those.

       
  8. integrator

    August 23, 2011 at 4:30 pm

    Some patients, who are testing positive for TSI antibodies, are also tested positive for TPO antibodies; they actually having 2 co-existing conditions (Hashimoto’s and Grave’s).
    In some cases the small nodules in the thyroid can be found due to this reason. The upper “normal” limit of thyroid size is 18 cubic centimeters per WHO (2003) which corresponds to 4.5 by 2 by 2 centimeters for each lobe, not sure how many grams it is (I do not know the average density of thyroid tissue).

     
    • houffenglaarfert

      August 23, 2011 at 5:04 pm

      I’ve heard of people having both. I was under the assumption that when you have both, you have hypo swings with your levels, no? I’ve only ever had high or normal range of T3 and T4 and low to non-existent TSH. I think “normal” is 10-60 grams. It has gotten slightly smaller since I saw that. It never completely goes away though. GAh!

      I’m not sure testing for TPO would do me any good though. The things I can do for myself to ease autoimmune symptoms would be the same protocol for any autoimmune… reduce stress, mainly. As for treatment, it’s only the symptoms they’re treating anyway, which is high levels of thyroid hormone. I have been in normal T3 & T4 range for several months, TSH went up slightly, but still under normal levels. Reduced meds, everything started swinging the other way… feels never ending.

       
  9. booniesjen

    September 4, 2011 at 12:30 am

    I just wanted to say thank you for writing this. I discovered my goiter almost 10 years ago and my endo keeps telling me to have the surgery and I keep refusing. I got so sick of the regular doctors telling me there is nothing I can do except have the surgery that I finally looked into other alternative medicine. I have had a lot of success with a very good naturopathic doctor, acupuncturist and my own research over the years. My goiter stopped growing a couple years ago and I believe it may even have shrunk some but I don’t have scientific proof since I haven’t had my endo do another ultrasound recently. But the lump is less “in my face” when I look in the mirror and necklaces fit better than they used to and I can see more of the neck tendons than I used to. My goiter, in previous ultrasounds, measured about 8cmx6cmx4cm. I am going to have another ultrasound in a few months to get some more accurate measurements but at least I feel less self conscious about it. It used to be that when I was with other people I felt they saw the goiter more than they saw me. So, thank you for writing this. I agree that removing such an important gland from the body should not be a “simple decision” as my endo seems to feel.

     
    • houffenglaarfert

      September 4, 2011 at 6:15 am

      You’re welcome, and thank you for responding. It’s been few and far between that I have been able to connect with anyone similar to my situation, and that’s what I was looking to do by starting this blog. Please feel free to contact me via email if you’d like to share more. 🙂

       

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