Previously on Hormona… I’ve been diagnosed with Graves’ disease and had surgery to remove the dying gland. But now I’m stuck in the limbo between super-ill and just really, really ill. And the bloods aren’t doing a damn thing.
Thyroid treatment: After surgery, afterthought
Post-surgery, it took a while for any treatment to begin. And by a while, I mean three months before anyone thought about it, and that was only because I was so underactive by that point, I contacted the hospital myself. One hurried blood test later, and I was welcomed into my new Endocrinologist’s office with the remark, “Well, you don’t look very well.”
During the appointment, it transpired that the lack of medication had been deliberate, as they didn’t think my body would clear the hormones as quickly as it did. I’ve no idea who set the three-month plus bar for bloods and treatment, but it’s a pattern that has repeated throughout the entirety of my post-surgery care. As is rarely seeing the same Endo twice.
With my Thyroid medication, Levothyroxine, AKA synthetic T4, in hand, I was sent on my way, with one final comment regarding my recovery. “If you were a bitch before, you’ll still be a bitch.” I’m guessing there’s a very good reason that particular Endo only sees patients once.
Years of recovery
Even after the surgery and the medication, I was still incredibly ill. Symptoms refused to abate, and at one point, my pituitary gland was accused of stubbornness. It took years for my body to finally capitulate and get on board with the new regime, as well as recover from the damage it had done to itself. And that means I basically spent the rest of my 20s unable to do a damn thing.
Some days, I barely had the strength to breathe, much less anything else. I couldn’t work, lost friends and barely spoke for the better part of a decade. Eventually, the vomiting stopped, the nausea receded, the cramps became manageable and I stopped breaking things just by touching them. Three months before my 29th birthday, I rejoined the world. Yes, I managed to not insult anyone during a job interview.
Medication stationary
And, ever since then, despite the daily changes in Thyroid hormones that we all experience, my medication hasn’t officially changed for as long as I can remember taking it. Not once. Is that normal? I’ve no idea. Although a doctor did once double it, mistakenly, I hope, because it nearly killed me.
Likewise, I’ve no idea if leaving my Parathyroids intact means there are some diseased tissue remnants still growing in my neck. I’d hope not, but who knows? Particularly as at one least Endo mentioned that they stopped leaving them in because it just keeps growing.
And there’s this: My body appears to rip through medication, and I can see adverse effects when things aren’t right in a matter of days. But the blood results my Endo has are always — always — three months old. How is that useful to anyone?
The bloods don’t work
Over the course of the two decades since my surgery, successive Endocrinologists have become less and less symptom-focused and entirely reliant on the results of my bloods. Now, my surgeon was pretty clear when they said that I’m healthiest just outside of normal ranges. Which basically means my optimum Thyroid levels are higher than most. It’s in my records.
Physicians, though, don’t believe that to be the case. During one recent appointment to discuss my most recent bloods, I mentioned that I felt better than I had for years. And in response, the doctor actually said, “You feel so well because you’re not well.” When I explained that normal ranges don’t apply to me, and reminded them to take my lack of symptoms into account, I was all but ignored.
And that’s not new. Several years ago, I mentioned to an Endocrinologist that Thyroid hormone treatment affects my periods, and they laughed at me. In front of a medical student. Who was also a woman. If even specialists are this uninformed, how can they prescribe anything close to Thyroid treatment that works?
I can back that up as well. Since I started taking Levothyroxine, I’ve felt well for around half that time. And I’ve been taking it for 20 years. Those well days are generally very spread out, and mostly come when I’ve tweaked my meds myself. Why am I tweaking my own meds? Because the bloods don’t work. They only tell a small percentage of the story, but doctors often treat them as the entire book.
Baseline issues
There are, for my money, a couple of big problems with the blood tests. Ideally, they’d look at your TSH, T4, and T3 levels, to see how your meds are working. However, they’re nowhere near sensitive enough, and in some cases, the tests are restricted to TSH and T4 only.
But then there’s this: If you’ve no idea what my baseline is, or what my optimal ranges are, how does a physician know if I’m ill just by looking at the numbers? Unless there’s an extreme either way, what are they actually seeing?
What they’re seeing is a snapshot, a record of one second in time. Hormone levels fluctuate day by day and hour by hour, so one blood test every three months is almost useless. It’s not frequent enough and there’s no real frame of reference, or continual record of your levels. That’s why FSH levels aren’t used to diagnose Menopause. They change too often.
Blood tests need to be more sensitive and they need to be done more often. Or at least more than once a frickin’ year anyway. That’s on a good year — I last had mine done in November ’22 for the first time in about five years. And I only did that because I changed doctor. To be honest, I’ve been my own Endo for many, many years…
To be concluded…
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