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Hashimotos- My Frustration, Pain And Struggle Are Not Fiction

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Hashimotos-My-Frustration-Pain-And-Struggle-Are-Not-FictionKristen Lacy, Thyroid Thrivers
Thyroid Nation

 

32 years young
Missouri, USA
Hashimotos Thyroid
Diagnosed in 2013

 

I am exhausted. I am freezing. I feel worthless, I feel lazy.

There are times that I feel suicide would be a better option when I “forget” about this illness and just think I’ve gone crazy. My legs hurt. Yesterday, I couldn’t get off of the couch. But I’m not that person, just debilitated by Hashimotos….completely debilitated. I get awkward looks from my family. “Oh, you’re tired, I am sorry, me too.” When did I become this ‘nobody’?

Oh, she has anxiety, another pill??”- (I’m all of a sudden a pill popper)

“Oh you’re drinking and taking pills?”

Um…no- this is my Synthroid. I take it for my autoimmune disease called Hashimotos thyroid. That is just the beginning of the level of scrutiny and judgement I get from the people that “love” me. So, yeah, that’s fun.
However; this all began I assume, way before I was diagnosed. In 2010, I went to the Dr. for exhaustion and depression. I remember crying. She felt my neck and then proceeded to order blood work. Then she sent me to see an endocrinologist, out of state.

When he walked in… and said I was ‘fine’ then he was rude to me. I dropped it. Forget it. I don’t deserve this.

Fast forward 2 years. In 2012, while pregnant with my 3rd son, my thyroid levels came back extremely high. It was only then that is when I was diagnosed as Hypothyroid and put on medication.
Even on medication, after my son was born, all of my hair started falling out. My scalp was also bleeding from the loss of my hair. Not to mention my face was swollen and of course my body hurt. My knee would lock up at times and my fingers ached. I decided to try again.
I scheduled an apt with another endocrinologist at Mercy St. John in St. Louis.
Once there, I get confirmation that I have Hashimotos thyroiditis and that there is a “goiter” and other satellite nodules on my thyroid. After 4 biopsies are completed, the results all come back inconclusive for thyroid cancer.
“Inconclusive?”

 

Thyroid-Loving-Care-Ad-Long-3My endocrinologist also informed me that depression and weight gain and anxiety are not symptoms of Hashimotos or low thyroid level. Hmmm… He actually tells me to take a diet pill for weight loss and to see a psychiatrist.

After that mess and ‘waste-of-time’ appointment, I set a consult with a head and neck surgeon.

A partial thyroidectomy, in October of 2013, was next up on my list of serious and urgent things to accomplish. All with these ‘fake’ symptoms. No news of cancer, at that point. Thank goodness.

However; I feel as crappy as I had before and with no end in sight. Is this to be my life?

November of 2014, I switch Dr.’s…. AGAIN. Unbelievably, the other portion of my neck is now the size of a grapefruit at this point. I check in at the Dr’s office, where they pull me to the side and ask me to do a questionnaire about depression and anxiety. Really? Because “I’m one of those types of people!”, I guess. A nut case. Either way, I am there to see about my refill on synthroid (btw: I had asked COUNTLESS Dr.’s to let me, please, try Armour or NDT) I am now on a 150 mcg dose of synthroid and feel NO Better!

I keep getting told no. I guess because the pharmaceutical company that provides Synthroid, gives trips, incentives or something to the Dr.’s who prescribe it the most?? I’ve worked in the field. I know how all Dr.’s offices get lunches and meals and the best glorified caterers (sales reps get the most referrals from physicians- its disgusting.) *end of that rant*

 

 

Thrive-Market-Thyroid-Nation-Ad2Then I am sent immediately to the Emergency room…..Catscan done and admitted in the hospital. I was told I had to have emergency surgery and was not going to be leaving. If I did leave, then a trach would be the next step, if I re-presented to the ER.

 

Day 2 in my lovely hospital stay, I was informed of definite surgery, and insurance would not pay for me to travel to STL for a surgery that our hospital could perform. This would consist of a total throat dissection. Thank GOD that the ENT surgeon that would perform this surgery stated that the hospital would not be able to support the aftercare required for this type of surgery and then referred me to SLU for immediate surgery.
I report to the head of oncology at SLU this same evening. He looks at my neck and says this surgery would have been a blood bath. Take motrin for the swelling and go home.
Still no answers- still sick and a then the cherry on the cake, is a notice from my insurance carrier that my recent hospital admission is not covered.

 

Now what? No one knows unless you are the face of Hashimotos. No one understands. No Dr. No family. Endocrinologist?? Nope. The ones I’ve encountered do not even get it either. No handbooks. No instructions. No hand-out that says “Oh you are diagnosed with Hashimotos- here is a list of things you should suspect.” Nothing. No support. No answers. Just judgement. When will the cycle end?

I thank you for letting me vent through this story. The frustration is real, the struggle is real and the pain is real.
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4 Comments

  1. I completely understand. I am also experiencing debilitating anxiety and anger. I have an appointment coming up with a doctor that I hope may help.

  2. Hi! Just an update.. only saw that this story was published today.. so I am behind. Doing so much better guys! I have given up gluten after seeking an alternative med Dr. and am so much better!! 50+ lbs lost and just doing better. I still have anxiety, I still have crazy mood swings and I still have brain fog, but I am THRIVING:) Thanks for sharing my “rock bottom” letter:)

    • So great to hear from you, Kristen! And, even better news that you are finding more ways to thrive. Keep us updated.
      ~Danna

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