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Wednesday January 30th 2019


Cinco De Mayo Brings Brings Reinvention

Post Published: 31 May 2011
Category: Dear Thyroid Letters
This post currently has 6 responses. Leave a comment

Dear Thyroid Ghost:

Part one of my nightmare is over.  I had you removed via total thyroidectomy on Cinco de Mayo (I wanted tequila shots, alas the dilaudid gave me hours of hangover-inspired vomiting all on its own).  One of my parathyroids got fiesty and tried to jump ship with you and had to be reimplanted in my neck muscle.  All in all, everything went perfectly.  It was amazing – I could swallow normally immediately upon waking!  Choking and compression GONE!  My vocal chords were still functioning! (I can’t sing, though – was told it will come back with time and I think it will.)  Sore throat and neck pain was awful, made much much worse by the retching.  I was exhausted when I left the hospital the next day and had an awful sprawling purple and red incision where you used to reside.

Within 48 hours I lost at least 5 pounds.  I deflated.  I don’t know how else to describe it.  As soon as I could go off percocet without too much pain, I switched to tylenol arthritis.  I drank gallons of water, tea, broth, whole meal replacement shakes (actual food and vitamin stuff that tasted bad but made me feel great), and popped multivitamins and iron and vitamin c.  Biopsy from your nodules and tissue came back macrofollicular/colloid.  Benign!  YAY!

Within 2 weeks my face reappeared.  My rings fit.  My memory fogginess lifted.  My searching and fumbling for words while speaking went away.  I didn’t pass out.  I didn’t fall over or fall down the stairs.  I didn’t need to use my cane.  I could walk up and down steps with NO difficulty.  I could go for a walk.

As of yesterday, I have deflated an additional 10 pounds and I don’t know how many inches but I went down a pants size and no longer feel bloated.  My neck is back to normal size .  My incision scar is healing beautifully (still a bit numb in the area, though).  I can do push ups again.  Pilates, yoga, long walks.  Muscle definition is reappearing.  I don’t take naps every day.  Went off of prescriptions for arthritis, restless legs, dizziness, hypotension, and anxiety.  I am adjusting very well to current dose of levothyroxine.  (Take that, bastard!  I don’t need your inadequate supply of hormones!)  I feel awake – eyes open and energy level up.  I actually feel like ME again.  I still cry every day but it’s now because I can’t believe how much better I feel.

I want to wring the neck of my GP.  He treated me for Lyme Disease and anxiety and depression, then when I didn’t get better he began the process of shuffling me around to a shrink, neurologist, rheumatologist, cardiologist, sleep center, and physical therapy. I had to push to see an endocrinologist when the ultrasound showed nodules in you (GP wanted to wait and recheck you in a year – FOOL!).  When I met with the endo, he immediately wanted me to consult with the surgeon.  You had to come out.  I don’t want to imagine what another year of agony would have been like, not knowing you were the cause of my nightmare.  I would have ended up bedridden, I suspect.  The feelings of despair, the humiliation, the pain, the fear have at times been extremely hard to combat.  I can’t thank my family and friends enough for the love and support they have given me.  Without them I may not be here.  I am completely serious.  (My mom read my Dear Thyroid letter to you and she called me right away to reiterate how much she loves me and understands that this has been hell.  I should mention my mom battled breast cancer during the same time, and she STILL took the time to always make sure I was ok.  I love my mom!)

I have since learned that you sneaky son of a bitch and your ilk have been terrorizing both sides of my family with goiters and hypothyroidism.  I am glad you are gone.  I am waiting patiently to finish deflating and get my muscles happy with me again – I see and feel progress every day.  I smile more.  I laugh and dance.  I played with my nephew for the first time in a year.  The fact that thousands of women (and men) are going through this hell right now just blows my mind.  I wouldn’t wish this on a sworn enemy.  You suck.

Thanks for reading this!  I will check in as I go along – I know that this is still a honeymoon period before the levo levels get tweaked and I may feel like garbage in the future.  But for now, I will take it!

Written by, Gillian

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6 Responses to “Cinco De Mayo Brings Brings Reinvention”

  1. Victoria says:

    Wow, Gillian
    Did you have hashimotos as well?
    What a story, you give me hope!

  2. Gillian says:

    Thanks for reading! I was not positive for Hashimoto’s antibodies. All bloodwork I have ever had was “within normal limits” at all times. The numbers slid around a bit, but never showed a problem.

    Good luck to you! Being my own advocate and landing one helluva great endocrinologist saved my health and sanity.

  3. Victoria says:

    Gillian, I almost passed out when I read your reply.
    Can you please connect with me on Fb or however you wish…I am stuck in bed…reading your story was like reading mine. I am victoria N kyle Jones on FB.
    Thank you

  4. Melissa says:

    Gillian, thanks so much for writing this letter! I’m so happy to hear that you’re doing great! I have been struggling with Hashimoto’s for almost 6 years now. The worst symptom I’ve experienced to date is shortness of breath. I feel like I’m being choked and need to use an inhaler every couple of hours or so. I was referred to a Pulmonologist by my Endo and he could find no problems with my lungs. I am patiently waiting to see my Endo again. He recommended that I have a thyroidectomy when I last saw him over a month ago complaining of not being able to breathe well and seeing the Pulmonologist was just to rule out any other physical obstructions. Reading your letter alleviated my fears and I actually look forward to having my thyroid removed once I get the ok. I just want to live a normal life once and for all. I wish you all the best as you continue to heal! :)- Melissa

  5. Victoria says:

    That is also my worst symptom and the fact that my blood pressure and heart rate shoot up when I get up and walk. The endos don’t think it is related to my thyroid at all as I have nearly always in range labs. I have clear swelling all over my neck and enlarged lymphnodes on the outer and deep layers of my neck.
    I have had lung surgeries so I dont have “normal” lung function either.
    I would love to follow your progress and see how it works for you.

  6. Victoria says:

    DId anyone ever talk to or be told about the barro receptor nerves in the neck?

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