Hello, I am new to the website. I am so upset that this may be completely incoherent and make no sense.
I am hoping for some advise or just understanding. I had my first very bad spell of Hyperthyroidism 15 years ago. I was told then that it was autoimmune because I had Graves Antibodies. It took approx 3 years to get my TSH to be even detectable despite increasing doses of Carbimazole. That time my symptoms were textbook hyper and terrible. I never had any pain or discomfort or apparent swelling in my neck. I also worked full time with 3 young children and took no time off. I saw the Endo man approx twice. I had blood tests at GP and Endo man would leave me voicemails to say take more Carbimazole.
Then 7 years ago it returned, Similar management just take ever increasing Carbimazole as advised by Endo. ( Just as an aside, nobody asked how I felt and apart from 1st visit to Endo 15 years ago nobody examined my thyroid.) So again it proved very resistant to the meds and in my opinion did what it was going to do regardless. which was that it gradually crept to an acceptable TSH, therfore discharged from Endo 6 years ago. At my last visit to Endo I tried to describe a tpain that I was getting that felt as if it was my thyroid. It happened then only when i used my arms in a particular way, eg mopping or hoovering any pushing activity made my throat hurt. That was dismissed. My Gp was to monitor things. As far as I know they only cared about my TSH ad the last test about 2 years ago said subclinical hypo. This baffled me because I was experience hyper symptoms in particular rapid heart/palpitations and feeling that my heart was missing. I was found to have an aortic valve leak. At the cardiologist when they did the ultrasound of my aorta it was uncomfortable, the throat pain was gradually worsening . I started to have very frightening symptoms, choking and outrageous coughing fits, hoarse voice dizzy ear pain and tinnitus and palpitaions. My GP was now exasperated and said they,d do an ENT referral. That led to a brain scan and Cerebellar Ectopia was found. That led to a neuro and neurosurgical referral. Because when I coughed my head felt ready to pop and i had horrible pressure in my throat/chest they did a csf flow study. The outcome of all of that was it wasnt a Chiari Malformation, so advised go back to ENT. I was frustrated because for the first time in my life I had gone off sick, My shoulders became really painful and doing anything with my arms up or in front of me hurt. had been off 4 months, felt worse and knew nothing. I visited my GP in August 15 the same day the Neurosurgical person discharged me, because I needed to get a "fit note" . I was so confused and hating myself, I felt like a complete waste of time and money. The person I saw was rude and so passive aggressive. I wont go into detail about the conversation but I left in tears. I booked to see my usual dr. I told him that I felt I was being put in the somatic symptom disorder bucket, I asked him whether I was being paranoid or was that what people thought. He said yes. His words were "when the ENT referral finds nothing the matter with you, and I (he) dont believe that they will, I would be sent to a psychiatrist.
This made me borderline suiciadal. So confused and consiquently threw myself back into work with a "stop complaining, you are fine stop imagining stuff "mantra I got the ENT referral in November, she asked me whether my thyroid problem had been Graves Disease, so yes it had been, she asked me what my antibody situation was. I explained nobody thought it was my thyroid so no tests had been done for about 4 years. She did some and low and behold I have "high antibodies". Currently waiting for Endo referral. Because of the GPs opinion I could barely speak to her, so only said about the throat pain and shoulder pain and trivialised everything because i wanted to cry and that would convince them i needed a psychiatrist. told 11 week wait for endo now.
If anyone has stuck with me through reading this thankyou.