A Doctor’s Words Brought Me Peace During My 3rd Thyroid Biopsy

Kimberly Zapert avatar

by Kimberly Zapert |

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Before I was diagnosed with postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome (EDS), I underwent an ultrasound of my carotid arteries to rule out blockage as the cause of my pre-syncope. My arteries were clear, but an incidental finding of a suspicious thyroid nodule necessitated a fine needle aspiration (FNA) biopsy.

I wasn’t worried until I arrived for the procedure. I have undergone many medical procedures without incident, but there was something unsettling about having a needle punched into my throat to remove a sample of thyroid tissue.

The Ramones’ line “20, 20, 20, four, hours to go/ I wanna be sedated” ran through my mind nonstop. I requested sedation, and the nurse happily obliged. The procedure went well and the results were good.

Biopsy 2, the sequel: the race against resistance

After a decade of minding its own business, my thyroid nodule decided to get rowdy. It quadrupled in size. Another FNA biopsy was ordered, but this time, sedation was not an option.

I began to worry about the efficacy of the local anesthetic, as I’d had local anesthesia wear off mid-procedure several times before. Reactions from providers have ranged from reluctant accommodation to callous disregard when I indicate that sensation has returned. Some have continued the procedure without administering additional anesthesia, despite my pleas.

Sometimes a doctor says they’ve administered the correct amount of anesthetic, and any pain I’m experiencing is “in my head” or “due to nerves.” However, resistance to local anesthesia is a common problem among people EDS. I’ve come to associate these phrases with arrogance and an unwillingness to learn new information.

I communicated my history with anesthesia resistance to the surgeon doing my FNA biopsy. He said he would administer extra-strength lidocaine that should keep me numb for hours. He worked quickly, and I was out of my hospital gown and dressing when the feeling returned. The results were good.

Return of the biopsy: happy ending

A few years later, a disquieting sensation of being strangled prompted another look at that nodule. It had grown even more. My primary care physician referred me to an endocrinologist who could perform the biopsy in his office. Although I was nervous, I reasoned that the anesthetic had lasted long enough for the previous biopsy, so I should be OK.

I also worried about a potential surgery or intensive treatments. I am the primary caregiver to three children who also have EDS, and I cannot afford any downtime.

I was reassured by the endocrinologist’s knowledge of thyroid issues and tenure in his specialty. What particularly impressed and surprised me was his interest in my EDS and POTS. He explained that he had recently read up on them after encountering another patient with those diagnoses.

The doctor explained my thyroid situation and outlined our next steps. His communication was clear, thorough, and thoughtful. I felt understood and well-informed. I was confident that he could help me through any eventuality.

In preparing for the biopsy, I told him about my fears concerning the local anesthesia wearing off during procedure, but he informed me there would be no anesthetic. (Cue the panic.)

He said it was not only unnecessary for the biopsy, but also that the shots required to numb the area would be more painful than the biopsy itself.

I had prayed before my appointment, and in the procedure room I tried breathing exercises, visualizing a positive experience, and even some discrete tapping. I wanted so desperately to be calm, and it looked like nothing could quell my oncoming panic.

As Montgomery Scott of “Star Trek” said, “I’ve giv’n her all she’s got, Captain, an’ I canna give her no more.” (I hope you read that with a Scottish brogue.)

Before conceding defeat and bailing out, I prayed some more.

The good doctor

Just when containing my anxiety seemed like a lost cause, the doctor placed his hand on my shoulder and compassionately said, “You be well.”

Those three simple words initiated a wave of calm. As it washed over me, the shaking stopped, and I was at peace. Those three little words, both simple and profound, served as both command and request, for that moment and many moments to come. I have never experienced anything like it.

The procedure went exactly as he said it would. There was some pinching, but nothing intolerable, and it was much less painful than the local anesthetic would have been. I would not volunteer for the procedure, but should it ever be necessary to repeat, I would do so unafraid.

The doctor messaged me with the biopsy results as soon as he received them: negative.

His words come to mind now and again when I worry, though not as often as I should recall them. I think we all need someone in our lives to tell us, “You be well.” It’s the best thing a doctor has ever said to me.

***

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Comments

A avatar

A

Redheads have problems with anesthesia, too. They need 20% more anesthesia to be sedated and they also need more local topical anesthetics, such as lidocaine or Novocain. Oddly, we have a higher pain tolerance. You might want to take a look at EFT tapping for managing anxiety on youtube. It sounds goofy, but, I find it effective.

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Alison wright avatar

Alison wright

I’m interested to know if thyroid problems are common in elhers Danlos/ connective tissue disorders?

I had a swollen nodule aged 18 and wasn’t offered FNA or biopsy, but advised on total thyroids to my. I can only assume it looked suspicious, but as it was 28 years ago they didn’t give me a lot of information. It turned out to be a cold nodule. As a result I ended up with requiring lifelong levothyroxine therapy. I have recently had genetic testing confirming a COL1A2 mutated gene. I have had a lot of seemingly unrelated comorbidities. I read an article recently by a doctor saying if you can’t connect the issues think connective tissues! I have had congenital heart defects, seizures, strokes, multiple fractures and low birth weight, childhood apraxia amongst other things.

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Amy Biga avatar

Amy Biga

Hi there I live now in the Poconos is that very far from you?-are there any support groups?

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Kimberly Zapert avatar

Kimberly Zapert

Hi Amy, I don’t personally know of any in-person support groups in your area, but your doctor’s office or physical therapist may. There are also a few support groups for PA residents on social media platforms (eg, Facebook).

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Lisa avatar

Lisa

Are thyroid nodules common in EDS patients? My son had a number of them when he was little and they thankfully went away. (Prayer, and maybe the help of frankincense oil.)❣️I am in the process of getting a diagnosis for my children.

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Kimberly Zapert avatar

Kimberly Zapert

Hi Lisa, I’m glad they went away! I don’t personally know of any medical research to-date showing a direct relationship between thyroid nodules and EDS. That would be a great question for an endocrinologist or perhaps a geneticist. Good luck on your journey - I hope you get some answers, soon, for your children!

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David Chorley avatar

David Chorley

Thyroid nodules seem to be common in my practice of about 400 EDS people. The hypothesis goes like this: follicles form under the influence of TSH and rise to the surface of the thyroid then rupture releasing T4. Given that the follicle is supported by collagen, they tend to stretch rather than rupture and are influenced by further cycling of TSH so they get bigger. Sometimes several follicles form in that way and you end up with a multinodular goiter. It's analogous to the formation of Polycystic Ovarian syndrome

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