Ignored by Doctors, Heard by God

When the copy and paste works in retrograde.

February 2016 I had a sick visit with my primary provider, I told him that it hurt to swallow like I had a sore throat but that I didn’t have a sore throat.

What I didn’t realize is I was going to receive the best care in that moment where future physicians would then continually fail me, for a condition that was going to plague me the rest of my life— not a sore throat.

When my physician examined my neck, he noticed something and suddenly my next steps were a vast array of bloodwork and an ultrasound of the neck.

My primary made an amazing catch, and the only doctor in all the ten years of this battle who automatically and thoroughly ran the full thyroid panel, to include checking antibodies, to properly diagnose and treat me.

Even having the diagnosis Hashimoto’s thyroiditis, autoimmune disease, no one since has checked my full thyroid panel, not one more physician has checked my antibodies.

Wild isn’t it. Just a basic TSH or sometimes T4.

Never together, never again another full panel, what a scandal if they would have dare check the antibodies again.

You would imagine it would be good to have a diagnosis for a direction but to the contrary I found that I was now, dead in the water.

I received an ultrasound that confirmed a large nodule recommended for fine needle aspiration biopsy, that biopsy came back clear and would go forward with annual ultrasounds to monitor.

Aside from that, a referral to an endocrinologist for care, treatment & monitoring.

Maybe I would finally find answers to why after a day at work, simply sitting hearing about the kids day I would fight to not pass out so dreadfully tired.

I had more answers that I didn’t even know I needed with this diagnosis, it explained so much of how I had been feeling without realizing there could have been a reason.

You know, something other than just a tired mom who overworks and doesn’t rest well.

A true by George I’ve got it, reason.

Was I overexcited to meet my endocrinologist, possibly, and boy was I underwhelmed to put it mildly in that interaction.

Said endocrinologist explained that my body is attacking my thyroid, for now my thyroid is in lab range, but eventually when my thyroid takes a crap— they will give me medication to treat the hypothyroidism at that time.

Thanks, but no thanks.

Are you not listening to my long list of symptoms that go along with hypothyroidism, I’m not doing well here, Ma’am!

I fought for months, doing research on this new to me disease because I was already handcuffed with hypothyroid symptoms but something I didn’t quite yet know was a thing—

being treated for optimal health vs a lab range..

and how hard you have to fight for it.

Then there is how much you pay out of pocket, because the ones that know they can offer this treatment, a service in a world it’s so difficult to find, can up charge.

Physicians, specifically endocrinologists, won’t treat you as anything but whether or not you are in lab range, symptoms be darned.

Then there are the physicians in the in between, who know there is a gap in care for this area.

They know.

They sell to you, optimizing your hormones to include thyroid, they sell to you we treat Hashimoto’s Thyroiditis.

You get lab draws more often initially to find that window you report back as finally feeling like yourself again.

If you are lucky they take insurance even at all, but if they do it is for the visits and if you are lucky lab work but a lot of that is cash pay not to mention, you don’t get your script a normal way either.

Nope, because (we) have determined a marketable service to those falling through the cracks of the medical system we are dealt.

So we the patients desperate to feel functional, cash pay for our prescription, that would otherwise be filled at a pharmacy covered under insurance, from this office we have found to treat us when no one else will.

Additionally, wouldn’t you know it, another up charge on that prescription.

Because they can, we need the care.

Don’t push back and go crazy asking them to write you a script you can fill at your normal pharmacy, nope they don’t like that either.

Continuing on this path for so many years seeing equally as many physicians fighting to be heard, fighting to feel better fighting to find an optimal range and a physician to care about that with you -that is a new level of exhaustion that you can not turn away from, you walk ever last lick of that fire because you have no choice.

After finally find a sweet spot of a dosage on np thyroid and hanging out there for awhile, we moved to another state.

You would think that a medication you’ve been on, with a diagnosis you have, you’d be able to maintain staying prescribed said medication.

Of course that was a silly thought, silly, silly me, God's silliest little goose.

A new primary care physician young and pompous at best didn’t see fit to keep me on my thyroid medication— get this, because my thyroid LAB was in range.

I went months and months without that absolutely necessary thyroid medicine, telling myself I was fine without it, maybe I didn’t need it anymore I was doing ok.

But I wasn’t.

I had a breakthrough moment where I realized I hadn’t felt well and not for a while.

My fingers had to yet again hit the streets of the world wide web, pounding the keys searching for any physician that labels themselves as treating Hashimoto’s.

I didn’t even have a referral to endocrinology. Who needs that when your thyroid LAB is in range?!

Finally by the Grace of God through a Hashimoto’s group I was in, I did find a concierge office only about an hour away, that optimizes your thyroid and hormones, cash pay of course, but I didn’t have a choice.

A few months in I was back to facing how do I afford this, the care and medication I needed is again only accessible through an office that doesn’t accept insurance, how do I afford this?

How is this right?!

At my next annual checkup with my primary, as he saw in my chart I was on thyroid medication he asked me why wasn’t I getting this through him….

(Don’t mind my, very exaggerated gasp)

I explained how I was going through a concierge office, he audibly laughed at me, and again asked why aren’t you getting this through me… I think my face must have fallen flat off.

He must be there for my amusement, the audacity, indeed.

I sternly recounted because YOU wouldn’t keep me on the prescription I moved here on, because my LAB was in range.

He did at least after that visit give me an endocrinologist referral, that was how I was going to have hope of affording my continued prescription.

My plan and my hope was pleading my case to a new endocrinologist, an area I’d lost faith and trust in.

I would tell her that I have been on this medication successfully for years, that I need it maintained with annual labs and ultrasounds, ultrasounds I wouldn’t have been able to get through the concierge office, regardless I needed that.

Blessed that even in light of the the covid racket, I got accepted for a telehealth appointment through Vanderbilt endocrinology.

Celebration afoot, she was fully understanding of my need for the thyroid medicine and agreed to maintain my annual labs, ultrasound and prescription.

Oooops I said labs, my bad, LAB…. they still only check TSH.

The concierge office checked a full(er) thyroid panel ERGO I had gotten myself in an optimal range and just needed the dosage maintained from there— I’d worry about later when that came.

Remember those God nudges.

He gave me a good one through a friend that had similar presentation in her thyroid as my daughters, one of the nudges that helped me fight for my daughter -another nudge came through that same friend when she had a total thyroidectomy and shared how she had never felt better and wished she had done it sooner..

After another year goes by, come to my next endo visit and I asked, can we discuss what does or what would surgery look like for thyroid removal?

Here I am I have intermittent discomfort, pain in the neck, pain swallowing and sometimes just sitting, laying doesn't matter quality of life impacting lumps and bumps here.

She said we aren’t there yet, is there anything else you have concerns about....

Just like that, conversation ended before it started.

We don’t really do that for autoimmune disease she told me another time.

It just opens you up to the risks that come along with surgery and most people don’t feel any better after so it’s unnecessary risk.

Many times she reiterated there are no studies or proof of anyone feeling better after removal.

Now with everything Clara just went through, I felt that nudge again, it was time to fight harder for myself.

Her surgery was in November, I reached out shortly after to my endocrinologist to let her know at my upcoming appointment in January, I wanted to talk about surgery possibilities again.

My physical discomfort comes more often, a more extreme level each time and it can last for weeks— times I can barely get my situation finagled to get any relief from it.

Dare we mention my November ultrasound

Why yes, let's

My nodules grew, plus there were new ones.

Now I don't know about you, but if I were a tracking hound I'd venture to say we've got ourselves some scent that supports the intensity and frequency increase of the symptoms.

There are more nodules scored in the suspicious category as well, but no one wanted to biopsy anything either. Five new nodules since the first and only biopsy, what do I know.

I knew I wasn’t comfortable, and I was just being told everything looks fine we will repeat ultrasound in a year.

She further says in portal, "I don't recommend surgery purely because of autoimmune thyroid disease. It would expose you to the risks of surgery, and I don’t have evidence that anything would improve afterward! In fact, anecdotally many of the women I have talked with actually feel worse without their own thyroid. I would be happy to go over this more when we meet next, just remind me."

Well I jumped OFF that chain I want to discuss surgery we've yet to have an actual discussion.

Further I was diagnosed now on 9 years ago from a complaint it hurt to swallow, I’ve been doing nothing but waiting it out.

I ever so slightly raked her, this woman has not once met with me in person, she orders TSH , Ultrasound and meets me on the computer screen once a year. She doesn’t know me.

Please stop being so dismissive of me.

Respectfully.

Oh no, I’m not meaning to be dismissive..

Color me surprised!

Come January I reexplain myself, it seems all I do is explain myself. I’m not haphazardly saying I have an autoimmune disease let's trash the thyroid, rather please hear the impact this has on my life.

She admits the physical pain is a little different, something she hasn’t heard me on prior, while sticking to her guns about how people don’t feel better after thyroid removal— passively I get the surgical referral.

If a surgeon looks at my chart, images and me they can freely tell me what they do/don't recommend and I will go from there. How hard is that?

God nudge when I received a notification I had a new appointment on the schedule for January 23, with not only a surgeon but the head of general surgery.

23 is quite an important number for me, He knew, that I would know.

I prayed that God give me a nudge in that appointment, something I would without a doubt know I’m on the right path.

The appointment was at Vanderbilt Ingram Cancer Center, but this was just an elective received referral.

When we met Dr S, she didn’t miss a beat explaining to me how many people she sees like me every year, how much of a positive impact this surgery makes for people like me all the time and to the tune of she does 150+ of these surgeries each year and she recommended a total thyroidectomy.

Not you won’t benefit from this

Not I don’t recommend surgery it is more risky than beneficial

Not a partial or lobectomy to address the bigger lumps

Total removal of the thyroid is her professional opinion, I didn’t go in asking for that, I went in sitting waiting for her to give me her assessment of my collective information at hand.

Then, in conversation I heard it, she said I have been doing this 23 years!

Hey God, thanks for tagging along, right by my side, I’ll keep following this path you’ve laid out for me.

And thanks again for the nudges, and getting me this far.

Everything over almost 10 years I’ve ever wanted to hear—

I see so many people like you every year, so many people find relief after this surgery..

and then the only thing I needed to hear, a sign I asked for from God (23) years!

I never felt such resolution about a decision and being on the right path.

Let me just say I am thankful for the seat fastener on this here rollercoaster, being just barely two months out from my daughter’s thyroid removal.

Within the next week they call me with April 2nd as my surgery date, so close yet so far away but we are in the home stretch.

Hopeful for this next phase of life, I am confident I didn't lose any time it just got rearranged.

Joel 2:25 "I will repay you for the years the locusts have eaten— the great locust and the young locust, the other locusts and the locust swarm— my great army that I sent among you"

2:26 "You will have plenty to eat, until you are full, and you will praise the name of the Lord your God, who has worked wonders for you; never again will my people be shamed"

He will repay me for the years the locusts have eaten and I will praise the name of the Lord our God, who is indeed working wonders.

How rad is that.

In the upcoming months while I waited, I’ve never had such grace for myself simply because the surgeon and her words making me feel the most normal I had in years.

Take good care and travel safe,

Sami

If I could slip this younger mom a note in passing, I’d say— you keep going, you get up swinging and you just don’t quit.. YOU both keep going!