Hi all, I’m new to the forum and this is my first post, so apologies if I’ve gotten anything wrong…not really sure where to start, to be honest.
I had my thyroid completely removed around this time last year at the age of 19, after suffering from an overactive thyroid due to Grave’s disease since I was around 16. For those three years I’d been on varying doses of carbimazole and propranolol because my thyroid would return to normal for a couple of weeks, before relapsing to be even worse than it was before I went into remission. I couldn’t take the back and forth anymore, on top of battling the side effects of such a high dosage of carbimazole (eventually 50mg, if I remember correctly). I had gotten into my top choice university, but my grades began to suffer terribly throughout all of this and i had to make the tough decision to ‘drop out’ temporarily due to illness, and repeat a year. This has been a truly painful journey. I thought it would all be over if I just removed my thyroid altogether…I was told at the time that i was pretty treatment-resistant to the carbimazole, since I kept getting worse whenever the dosage was changed. So I opted for the surgery instead of the radioactive iodine therapy, for fear that I could become overactive again, and potentially have to drop out of uni forever. In that time i was suffering tremendous pain all over, bulging gritty red eyes from Thyroid Eye Disease, inability to sleep longer than 3 hours at a time, anxiety and suicidal ideation…it’s difficult to recall all those painful memories.
Since having my thyroid removed, I seem to have only replaced those problems with new ones. My bulging eyes are still there (though my TED seems to be inactive now, which I’m immensely relieved about), my weight is all over the place despite my appetite being low, my stomach is constantly distended to varying degrees (I always look pregnant) and i often find it difficult to keep meals down if they are too large (embarrassingly i am also quite constipated..) yet I am currently on 200mcg of Levothyroxine! The doctors all told me that I would be just like everyone else once I recovered from the surgery…but I feel terrible. I feel so defeated, like there’s nothing else I can do…I have all these symptoms that sound suspiciously like I’m underactive, yet all my bloods are within normal range. Levothyroxine is the only drug available for this on the NHS, but it seems like it might be the culprit for all these issues…maybe my body can’t process it well enough? I feel so hopeless. I tried to tell my endocrinologist about this a few weeks after my surgery, but he told me it was nothing and took me off of the register. Since then i’ve been going to the GP nearly every other week with the same problems, only to find that my old endocrinologist had responded to her emails saying that I must not be taking my medication…I’m at my wits end, and so, so hopeless. I’m only 20 years old…is this what I have to look forward to for the rest of my life?
