Thought I’d give an update following my endocrinologist appointment today. So, as expected he has told me my most recent results (posted here previously) show normal thyroid function. He stated that I have ‘ survived’ (tongue in cheek) my first Graves flare.
He spoke about my results and bases his prognosis on where the fT4 is rather than the TSH . He also acknowledged that I did the right thing coming off of the carbimazole as it obviously caused me to become overmedicated and dropped me into hypo. My levels have now pretty much stabilised and he wants GP to continue monitoring them. He claimed that - although I took an unorthodox approach - he’s pleased because it’s worked!
I queried if he was certain of his Graves diagnosis as opposed to hashi’s or something else - he was adamant. I asked if I had been tested for the Graves antibodies and he said no. No need based on all available evidence and the intricacy (and cost) of testing it wasn’t worth it. I was speechless. That’s something I will address privately.
So, discharged until such times as I become symptomatic again. He feels certain it will recur but could be months or years. It’s all quite bizarre tbh.
Anyway, I’m parking the thyroid issue for a while while I sort out my B12 and folate issues. Hopefully, by then I will be in a stronger position mentally to reassess and potentially get the AB tests done for Graves to be sure. However, do AB’s only show up if symptomatic?
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4872angie
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I was gobsmacked tbh. Giving a confirmed diagnosis to a patient without the corroborating evidence is just bad practice. I wish I was firing on all cylinders - I always think of a decent response after the event!
In all seriousness, he admitted to dumbing down his replies to patients to a level they can understand! Charming.
Giving a confirmed diagnosis to a patient without the corroborating evidence is just bad practice.
Something I bang on about a bit (a lot) here, especially where Graves is concerned. It's totally not possible to diagnose Graves unless those antibodies are tested, otherwise it could be mistaken for Hashimoto's during a hormone dump.
My responses to doctors often come too late too
I really have lost all respect for most doctors. Give me the Advanced Nurse Practioner at my surgery any day, at least he listens and is willing to discuss things, and likes the fact that just occasionally he has a conversation with an informed patient!
Hi, Totally agree with you and Seaside Susie about doctors. However I don't bother any more coming up with any responses or even any discussions ( read counter-arguments!). I find it is not worth my time or frustration. Good on you to get your own tests done!
Speechless! The whole approach is just so beyond words! I suppose in any other professions it would be immediate grounds for suing for negligence. Try a car mechanic telling you he thinks, based on all available evidence, your brakes might not work but has not tested them because of the intricacy and cost of testing!
As Graves is autoimmune I would imagine the antibodies would generally show at almost any time just like they would for Hashis irrespective of symptoms though I remember Izabella Wentz saying that people can have Hashis without antibodies (confirmed by thyroid scan) and potentially you can have both AB for Graves and Hashis at the same time so probably worth testing for both.
Glad you feel better and good luck with sorting B12 and folate.
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prep for private endo appt
Discharged by endo - anxiety? 
Blood tests ahead of endo appt
