Has the thyroid always been like that?

I find it fascinating that I hadn't clicked onto it sooner. I mean... eight years. Maybe eight years I've been treated like that? I don't know. I've had 4 different GP-s since moving to New Zealand (general practitioner - "perearst" in Estonian), so it's hard to remember if all of them have followed this regimen, but thinking back there's a good chance that... they have. It kind of makes sense, I mean, thinking about it.

And the story is, I have an underactive thyroid. It's an autoimmune kind, what they call Hashimoto's thyroiditis in the medical literature. (-"itis" at the end of "thyroid" simply implies that I have a thyroid that's perpetually inflamed due to an autoimmune reaction, so "thyroiditis")

Because my thyroid is underactive then every day I take medicine to "top" my hormones up - to "insert" into my body hormones that my thyroid doesn't produce enough of otherwise. The dosage has changed over the years, but in short, over time my thyroid gets gradually weaker and weaker and weaker, so over the years my dosage has grown gradually bigger and bigger and bigger.

About two years ago I started doing serious research on keeping down water retention in my body because having developed epilepsy (catamenial type C3) I needed to manage water retention which, from experience now, plays a part in managing my seizures. ("Catamenial" simply means that seizures are connected to my menstrual cycle and type C3 means that seizures happen during the luteal phase, ie before menstruation)

I learned to adjust my food towards LCHF preferences, learned to balance my high water intake against having enough minerals (sodium, magnesium, potassium, zinc) - learned to, quite simply, even notice I had water retention, and to notice how much of it I had.

But it's not until I became borderline anemic last year (I swam one length in the swimming pool and had to climb out because I just couldn't get enough oxygen in me) that I started looking for patterns and suddenly clicked onto the fact that... my doctors wait for my thyroid to drop below normal range before they prescribe me higher thyroid supplements.

Like this:


And it's not good, actually, because in my case we know that I have a systemically underactive thyroid which never goes higher - it only ever goes down with time. "Upping" my hormones only to the mid-normal range and then letting me gradually "drop out" of the bottom again only means that for the most part, I spend my time in the bottom corner of the "normal" range and, sometimes, outside of it before I get pushed up to the middle again.

And it's not good, because I already have low iron levels. Have had pretty much since... 2011. (They've never been as drastically low as I got last year, but they've been low enough that I probably wouldn't have been allowed to donate blood, if I wanted to, thinking about it now.) And the problem is, low iron levels are systemically linked to low thyroid levels through a problem in iron absorption, which I probably have.

It's also not good because it causes high water retention.

Last year - for the first time ever - I bought a set of scales to keep at home because I just got to a point where I could tell, I have a systemic problem with water retention just before my period. I mean, all women get that to a degree, but I was sometimes at a point where my weight would go up and down 5 kilos in a month. I would be 67 kg at the start of the month and at the end, the scales would be at 72 kg. Then, a week later I would be down to 67-68 kg again and over the next 3-4 weeks it would climb to about 72 again.

I had different sized pants depending on what time of the month it was. I mean... seriously. I couldn't comfortably wear the same size jeans through the month.

And I honestly don't know why I never thought about it before - the link between my water retention and my thyroid. I just... never questioned it. Ever. I took it as a fact that every now and again my blood test would come back marked "L" for "low" thyroid hormone, me and my GP would look into it, up my dosage and for a while my hormones would be within the normal range again. Until a while later they'd be too low again and we'd up the dosage again. A "normal" pattern for an autoimmune thyroid degradation. No biggie. Keeping the thyroid levels "normal".

But it's not actually "normal", is it. Not for me.

So we've made a change. We upped the thyroid dosages to keep me at the top end of the normal range (rather than upping only to the middle), therefore allowing my thyroid to gradually slip down again, but we would hopefully push it up again before it dropped out the bottom, and... (drumroll) VOILA!, the water retention's gone.

I'm at a comfortable 65 kg at the moment. I mean, still have to wait and see for a couple more months to confirm that it's a solid pattern we are observing, rather than a fluke, but... I can feel it. I can feel the "puffiness" gone.

Of course, it's not only that because at the moment I am also on supplemental progesterone because, by the looks of it, I did have a too-low progesterone count and now we've managed to get me to a point where (another drumroll!) I don't have seizures. Haven't had any for 5 months.

And it's been a fantastic discovery for me that I need to really systematically keep an eye on all medical information that comes into my GP-s mailbox. I need to be able to proactively advicate for my health before my GP gets a "ping!" on his lab reports saying, "Maria's thyroid levels are at "L", please review."

And it's basic stuff. It is.

I had just never thought to notice it before.

PS. Funny thing is, in class today my tutor talked about the importance of just "trusting what the professionals are doing", rather than keeping an eye on the construction process (from a client's point of view). The tutor said how people nowadays show up in a doctor's office having already googled everything ahead of time, so they just show up saying, basically, "I know what I have, I know what I need to take, I just need you to prescribe it" and how silly such an approach is. That a doctor has gone through medical school in his, what, 9 years? so just trust what he's doing.

And I sat there, quietly, thinking to myself: "That's bollocks."

I could've spoken up, but I didn't feel I needed to. I am exactly the sort of a patient the tutor alluded to, showing up at my neurologist's office with papers printed out about clinical trials I think will work in my case, suggesting we try a treatment protocol my neurologist hadn't even heard about.

But, guess what? The neurologist took a week to research it, discuss it with his colleagues, it looked credible enough to him to say, "Yeah, okay, let's try. See what happens."

And it f*ckin' works!

A person said to me recently that I seem to be proud of the fact that I have epilepsy and I thought to myself, damn right I am!

I mean, I'm not glad I have it - because I'd much rather I didn't - but given that I have it, I don't see much point in hiding my head under a carpet somehow and pretending that I don't, so I wear the f*ckin' medical bracelet around my wrist with pride, and I carry the fact that I figured out what it was! with pride.

Because, had I not done that, I would be on anti-seizure medication. Generic, we-don't-know-what-causes-it-but-we'll-just-treat-the-symptoms medication. Instead, it looks like we've been able to figure out what caused my seizures and treat the cause underneath the symptoms, and make me better. And OH MY GOD HOW GOOD THAT FEELS!!!

It's not me alone - it's the neurologist, too. He was a man enough to say, look, I've never heard of this treatment before, but let me have a look into it. And then he did, and we tried it, and now I am sitting here feeling like I have parts of my life back, and I don't have to stay away from my car every time I get close to my period, and I don't have to have these strange "waves" wash over me where I think, "What on earth is that thing!?" and it just works.

And in the case of construction: actually, I think more and more people will be involved in their house builds, rather than "leaving it for the professionals" to do. They're going to want to know what the houses are made of, how they'll perform, how people are treated on building sites, about the whole process, actually.

And yeah, I may be "that patient" who comes to a doctor's office with a plan I want to discuss, rather than just asking the doctor, "What do you think?" But it's okay. I don't have a problem with that.

And luckily, most doctors that I work with now, see it the same way.

Long may it last.

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