#I never want to see them give Wade or Logan or Laura a fucking autoimmune condition but also they should have a character like that

[yourgamemasterthewhiterabbit]

Ig it was closer to 7 years ago? 8 years ago? if I check the actual timeline.

They were like oh shit it looks like you have graves disease really bad we gotta run all these tests, you could die!... For symptoms I had been having on and off since my 20's and telling them about only to be ignored.

Then they were like, no haha it's just the first stages of your immune system tearing your thyroid to shreds and letting it spill all the hormone at once. At this rate there's no need to remove your thyroid because it will die completely within 5 months and fully atrophy.

Are we going to try to stop my immune system from doing that?

No. haha.

What happens when my thyroid dies?

Oh you'll need to be on hormones for life or you'll slowly get so hyperthyroid you can slip into a coma and not wake up. haha, but it's like having and managing diabetes, people live full lives with it.

I'm having severe cardiac symptoms and etc from the obscene thyroid levels, and am unable to sleep for up to 72 hours at a time, can we check back in before 5 months? Maybe do something about the heart symptoms that isn't just knocking me unconscious for 3 days at a time with this blood pressure medication since my blood pressure is still somehow dropping to 60/45 despite the high adrenaline and cortisol and thyroid levels? [my resting heart rate was 120 at the time]

No haha, not necessary, prommy :)

So I took that for the news it was. Within 5 months my continued survival depended on the whims of whether someone would want to give me my meds or not, someone who probably didn't fully understand the severity of the issue, and like many people who rely on insulin, I could be killed by medical neglect at any time. I only had 5 months to live for sure and those 5 months were going to be hell.

I kept having the grave's disease-like symptoms until I figured out on my own to restrict b vitamins and iodine... Off the back of them telling me to slat load for the low blood pressure WITHOUT telling me to avoid iodized salt...

I tried to tell them this had been happening on and off since my early 20's, they told me that "wasn't possible" and "doesn't happen"...

I had one hope and it was that I was right and this had been happening on and off since my 20's and getting better in between.

5 months went by.

Your thyroid is doing fine actually :)

You said it was being torn to shreds. You said I had 5 months.

Yeah but it's fine and your levels are too.

Because I haven't eaten a food with iodine since 5 months ago other then a splash of cream in the morning and have stopped having b vitamins, but my neurologist says I really should be taking extra b vitamins, so just avoiding them in all foods to avoid going hyperthyroid isn't sustainable, so can we maybe entertain removing part of my thyroid so I can have some b vitamins in my diet and don't have to keep myself on the very edge of developing goiter to function?

No. haha. If your immune system keeps attacking your thyroid, it'll just die. You'll notice the symptoms and we'll put you on hormones. If it doesn't keep attacking your thyroid, you'll be fine :)

7+ years and my thyroid just keeps healing itself and taking beatings from my immune system so I have to live on the very edge of having goiter so I don't develop the symptoms of advanced grave's disease at any given time. ... And I had been living that way untreated for gods know how long because the hyperthyroid phases kept getting "diagnosed" as "maybe some kind of mania?" by doctors who don't seem to know what mania even -is- since my teens.

[hint: people who are manic or manic depressive don't generally -stay- manic for 2-6 months at a time without crashing, and aren't as psychologically stable as I was about it all, I was going hyperthyroid periodically and they were brushing it off as a mental health issue, which they also weren't treating because the treatments didn't help... because I wasn't 'manic' I was being flooded with adrenaline, cortisol and unregulated thyroid hormone, and it was getting slightly worse every time]

They have it diagnosed as "hashimotos thyroiditis" because -by mechanism, if not result- that's what it is. I haven't heard of anyone else that doesn't progress to the hypothyroid stage of that and stays stuck in the initial storm of thyroid hormones... But here we are. Hyperthyroid at all times because of *checks notes* aggressively recovering from the hypothyroid disorder, while it's still happening, in perpetuity. [there are two forces inside me]

They effectively gave my 5 months to live independent from care and that was when I was in my mid-late 20's. I am about to be 37.

Every time they catch a level of something actually acting up they go "holy shit more tests that organ seems to be dying!!!" And then when it doesn't and I get better they grasp for an explanation that doesn't -require- they do anything about it, like "you must just have gilbert's, haha" or blaming my personal habits for causing a 'temporary problem'.

I'm like the guy with the liver and the eagle, but the eagle is my immune system and all my tissues take turns.

Did I steal fire from the gods?

The pattern is that my immune system seems to just take turns attacking every system and tissue I have, and in doing so gives each a break long enough to heal in between. But it also means I have this rotating roster of autoimmune symptoms that's ever changing and an ever changing "hey I might qualify as having a kidney disorder this week and I won't know unless I do something to upset it" cycle of trying to figure out what tissue or organ needs my support the most at any given time.

Mostly it means doctors won't believe me, because the symptoms and tests results that were there even two weeks ago are gone now. And when they do believe me, how do you even treat that? Suppress my immune system when doing so will cause 1 of nine specific viruses to re-activate if it's already in my body and near immediately kill me?

I haven't met a doctor willing to acknowledge the genetic lack of proper immune response I have to specific viruses and offer to put me on an anti-viral -like other people with that condition are- at the same time as the immune suppressant. So I won't take the immune suppressant because I don't want to die suddenly and horribly of meningitis or encephalitis the way my mother almost did the moment covid crashed her immune response.

So I just live with it. Legitimately getting very dangerously sick with one autoimmune condition or organ failure problem after another and then bouncing back.

No fucking -clue- what this is doing to the cell lines in my body. Super curious really.

I know the perpetually high bilirubin plays some role in protecting me from aging, tumors and damage because it's an antioxidant. So there's that?

That's kind of why I'm not worried. This has been my reality since my 20s and beyond, and it hasn't killed me yet. Also no doctor has managed to do something useful about it yet other than run tests and give me the results. When they do find something concerning they always end up coming to the conclusion that their best course of action is to do nothing anyway. Especially since the fast metabolism and an additional mutation that makes me process some meds super fast and some super slow makes it kind of challenging to medicate me for anything at all.