after years waiting for appt i hauled ass to derriford to see endo [redacted by admin]. he was surprisingly ok. doesnt see dessicated as a monster. couldnt understand my health history here, was mystified why my needs werent covered closer to home. then he went to open the referral & my test results - which he couldnt because devon nhs doesnt talk to cornwall nhs. so, having survived epic journey (3 hours each way) without dying from covid i will be having bloodwork here & next communication over the phone.
i despair for the uk. nothing works. stunning lack of professionalism. zero accounatbility for results/ no concern for patients. none of this should have happened, i gave every health professional all the info they needed & still they were prepared to kill me.
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We ALWAYS recommend getting FULL thyroid and vitamin testing BEFORE any consultation and take results with you
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine, T3 or NDT
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
NDT or T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
this endo understood that taking dessicated means numbers are read diff. my head nearly fell off. had blood tests before going - they had, in theory, sent results thru.
I have just had what (so far) I think of as having had a pretty good appointment with an NHS endo. Of course only time will tell. Especially following on from a cardio appointment where it’s seems to me “they were/are prepared to kill me” to prove themselves correct. Remember doctors literally bury their mistakes. The operation was a success but unfortunately the patient died. (No joke intended here). As usual QOL issues not a consideration. Dare I say AGAIN because last time, I only probably survived by the skin of my teeth!
My history is long and I made the decision of only putting the endo ‘right’ if he wandered off course. Still exceptionally difficult to manoeuvre. With no reference really to the fact that a previous endo has made such a mess for me (his boss) I managed to move forward I hope.
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Tests results & Endo appt today
Blood tests & upcoming endo appt advice
So upset after today’s Endo appt
