Hi everyone, haven't posted on here for a while. About time for an update!
Briefly: I have been on T3 only (20mcg x 3 times daily) for several years now, after failing to resolve symptoms on T4 or T4/T3 together. It could be that I don't convert properly but no-one ever checked. I was eventually under the care of the late, great Dr Skinner before his untimely and tragic death, so my treatment has not changed since then - but not without a fight.
Tsh has been undetectable, ie, fully suppressed for that period, and I was repeatedly pressured to go back onto some T4. A Dexa scan was ordered and was fine, similarly the Cardio monitoring showed no problems at that time. I gave them to understand that I was aware of the risks but wanted to live a life and not scrape out an existence. This meant I was labelled aggressive. However, I was allowed to continue and the various Endos were not apparently bothered.
This week following an unscheduled stay in A&E I have just been diagnosed with Paroxsysmal Atrial Fibrillation "likely secondary to over treated hypothyroidism". The Registrar from the Endocrinology team came down to the ward and read me the riot act, hand on hip while gesturing at the monitor and saying repeatedly that this was all caused by my taking T3 and I had possibly caused irreversible heart damage.
She calmed down slightly when I agreed to drop the dose to 40 mcg and have a retest of bloods in 6 weeks time, plus a fast tracked appointment to the boss. She is still trying to put me back on T4; I am still questioning the logic of going back to taking something that did not work first time round.
What on earth am I supposed to do in the face of such an onslaught - and another one on the way. They still think that the only way to test for Adrenal insufficiency is on a blood test.
Any pointers and advice will be so very welcome, there must be many who have faced this situation. I feel a sense of impending disaster.