Embodiment is a terrible hobby.

[kaberett]

As of June, about six weeks after I'd started levothyroxine, my free T4 was at 17.1, and I felt pretty good, but my TSH was at 0.26 (i.e. "too low") so my various medics fussed a little and told me to come back in another six weeks or so.

Over those subsequent six weeks or so I've been feeling gradually worse -- a bit more tired, napping a bit more, slightly worse acne, slightly worse cold-sensitivity, slightly more post-nasal drip, slightly worse gut function -- ... and my mid-August bloods had free T4 back down at 12.2 (but my TSH back in the "normal" range at 0.39). For comparison, back in November when I finally showed up at the GP to go "something is wrong, please make me feel better" my free T4 was 12.4 and my TSH was 0.7; as of February, it was 11.6 and 0.64, respectively.

This looks to me like I'm achieving a gradual decline in free T4 that correlates very well with "how shitty do I feel?" with the complicating factor of thyroid supplementation overprinted on it. But. I got summoned in to Talk About My Bloods after the June tests because I was outside normal range despite feeling fine, and... heard absolutely nothing about this set of test results, because they're "normal" again, despite the symptoms. (And I'm seronegative for the common thyroid antibodies, so despite the fact that would be the obvious explanation given my other ehhhhhhhhhh-probably-autoimmune-cluster conditions, and despite the fact that seronegative autoimmune hypothyroidism is apparently a thing, and despite the fact it would be a fairly straightforward and obvious explanation for "gradually declining thyroid function", which probably means I can't convince medics of anything. Which in turn means I probably have to end up feeling that shitty again, every time, before they'll up my dose, and I am preemptively exhausted.)

I have an appointment in 10 days' time to discuss All This with my local GP, because I sort of feel like I ought to at least try to get local care rather than just getting my fancy central-London doctor to write the first prescription and then show up at the local practice and be all "lol do what you're told", but I'm dreading it. A is coming with me. I possibly need to have the "so you kind of spectacularly missed the thyroid problem for several months when I first presented with it, do you believe me yet or are you just going to keep telling me to lose weight" conversation, which I am also dreading.

Comments

[harpers_child]

Hug? I hate doctors who won't listen.

[ewt]

Oof. Thinking of you.

My understanding (...not sure from where, sorry, will try to find it if you'd like me to) is that as long as your T3 is within normal ranges it's basically safe if your TSH is super duper low and your free T4 is a little on the high side, but that you're unlikely to find a GP who will say this without your first being sent to an endocrinologist, and you're unlikely to be sent to an endocrinologist if your GP thinks they can handle thyroid stuff themselves, unless you ask (and even then...). So, that might be another option. (And if your T4 to T3 conversion is wonky for some reason then that needs seeing to, but that's again probably an endocrinologist thing.)

[kaberett]

Yeah, pushing for an endocrinology referral is... probably worthwhile? But URGH. (Especially as I'm supposed to have been seeing endocrinology at CHX for the last YEAR and change, but but they've just kept cancelling appointments...)

[alexseanchai]

gyaaaaaah

[flippac]

Gah. They'd be more useful if they practiced being trains instead.

Good luck!

[lunabee34]

I feel your frustration. I just got my labs back from endo visit and my thyroid levels are still within "normal" range.

Having Hashimoto's just sucks; it means I get to enjoy all the symptoms of hypothyroidism unabated! *sigh*

[kaberett]

<333

I do at least have a GP who's willing to believe me when I say "something is wrong", but I ought to get the local lot trained up and that's just... urgh. :-(

[lunabee34]

I'm glad you've got a doc in your corner. That makes all the difference.

[niqaeli]

Embodiment is a terrible hobby and I am grouchy on your behalf that the people whose literal profession is supposed to be helping make embodiment less terrible are making more work for you, not less. I am glad you will have A with you for this coming appointment at the GP.

[recessional]

........wait I have met you in person, I know what you look like, unless this has DRASTICALLY CHANGED how the hell is "lose weight" even on a conversation with you about this.

I mean I know how, but also how.

[kaberett]

severe fatigue (like 18h a day asleep fatigue, and not many useful hours awake) + increased post-nasal drip + worse skin + gut problems + decreased appetite + rapid weight gain (but still definitely leaving me on the low side of UK average) = well it's just because you've gained weight, increased weight will mean you're more tired and it'll also increase your allergic response, if you lose weight you'll magically get better

APPARENTLY.

Never mind! That I'm in multiple high-risk categories! For hypothyroidism! And my numbers were borderline! And my iron absorption had gone entirely to shit! And the weight gain started AFTER EVERYTHING ELSE.

That... was the point that I gave up on that particular GP. I don't quite feel up to making the complaint until I've got unambiguous bloodwork showing she was Wrong Wrongity Wrong Wrong Wrong, though, rather than just relying on "well I started taking thyroxine and magically got better, who'd have thunk it" :-/

[kaberett]

oh right ALSO the bit where it was routinely the case that the house was theoretically at 20degC and I was wearing three jumpers and two trousers and at least three socks per foot AND UNDERNEATH THREE DUVETS WHERE I'D BEEN FOR TWO HOURS and I was STILL obviously cold to the touch.

because weight gain. obviously.

[flippac]

jfc. I mean, yes, I weigh a lot more than you, but if I'm even starting to layer on clothes at 20C it means I'm fucking ill.

[vass]

Argh. Good luck, and yes bringing A with you is a good idea.

[halojedha]

So. Much. Empathy. I'm glad you have a fancy central-London doctor backup, but it's infuriating you have to fight these battles in the first place. Also, acne, cold-sensitivity and gut function are all related to hypothyroidism? Huh, that makes sense.

[kaberett]

YUP. I found the Thyroid UK checklist a particularly helpful resource: I hadn't realised that "alternating diarrhoea and constipation so bad I have to get my hands involved to sort it out" and "cystic acne" were well-recognised results of hypothyroidism (gut function slowing down due to reduced rate of cell function etc etc etc) BUT APPARENTLY.

And yeah, terrible thermoregulation is a pretty classic symptom, lolsob.