Hi all. I went to see the endo as expected and was told from the outset that he was looking for hormone problems that may have been over looked by the consultant overseeing my recovery this past month. Fine I thought.
He asked me when I started on thyroxine to which I replied about 12 / 13 years ago.
When did I start to feel unwell of late? I wasn't sure I said as I am under a rheumatologist and an orthopaedic consultant for my joints, so I didn't know the headaches / double vision / high BP and palpitations were thyroid related. All I knew was that I was told I was high risk at my pre-op assessment.
I showed him the picture I posted of my swollen neck on here the other day. He said I don't need to see the photo I can see for myself that you have Hashimoto's Thyroiditis! I looked puzzled and said no one has ever tested me for thyroid anti bodies ...to which he replied 95% of patients are positive, so no need! I am so ignorant of this disease that I just thought it was an underactive thyroid?
he asked me why I was bothered by this news and I said emphatically that my Father died of thyroid cancer, his sister (my aunt) had half of hers removed, one of my own sisters has thyroid related disease and parathyroid removed.. oh, and there's haemochromatosis in the family! At this he turned to his computer and started asking me which bloods I have had done these past few years.
Forgive me for complaining but I thought he was rather unprofessional. When I told him about Thyroid UK and some of the information I had gained here on thyroid related issues (eg...Vit B12 deficiency) he said 'who said your vitamin B12 was deficient'? I told him I have been advised to have B12 injections and he said 'don't at the moment'...He sneered with the nurse and said 'don't go on the internet and that your B12 is fine at the moment' ... yet why has he included it in one of the blood tests he ordered!? When I explained that the organisation is a national body run by professionals he dismissed it out right! I am so sorry to all you wonderful people who work tirelessly to help people like me to better health. He also challenged me on my being vitamin D deficient too...'who told you'? Er, I had a test and I was 41nmol (40 being the lab ref for deficiency) so my GP suggested I self medicate to bring my levels up. I said then my levels went to 101nmol and he argued back and said 105 actually!
Then he organised for me to have a scan on my neck...for what purpose? You have just told me that by looking at my neck I have Hashi's. He must be worried about the thyroid cancer connection and also ordered many other tests including CA-19-9 (pancreatic?) and this one ..... CA- 125....er, I don't actually have a uterus or any ovaries so what a waste of NHS resources!
Coeliac panel too.... er I have been gluten free for 11 years! Another waste of NHS money. All he needed to d was ask me to find out.
I have got to see him again in 8 weeks (oh dear goodness) to discuss the (negative) coeliac panel and the neg CA 125!
Others he has included are:
Thyroid receptor (isn't that for graves?)
Any comments? Was it all a waste of time? PS....not tested for (TPOAB)