I had Graves' disease just after I turned 22 and had RAI treatment nearly a year and a half after diagnosis. I have been on levothyroxine for 15-16 years before an endo consultant put me on T4/T3 trial last year March.
I managed to get a copy of my latest blood test results yesterday to bring with me when I go to my appointment at the hospital tomorrow. The head endo consultant whom I've had two previous appointments requested FBC, U&E (urea & electrolytes), LBP, random glucose (which turned out to be plasma glucose test was done), Vit D3, TSH, fT3 (which was not done), fT4, tTG, and HbA1c.
My TSH is still below range 0.05 miu/L [0.34 - 5.6] (same result from my previous blood test back in March). I mentioned this to the head endo consultant, but he said he is okay with that result.
Plasma glucose is 5.1 mmol/L [3.0 - 12.0]
Vitamin D3 - above range (which means I need to lower my D3 dose from 10,000 iu to 5,000 iu); my vitamin D3 levels since 2014 were way below range and it took about a year and a half to bring them back up.
Serum free T4 - 12.3 pmol/L [7.5 - 21.1]
HbA1c - 42 mmol/mol [26.0 - 41.0] My local GP surgery has now classed me as at risk of developing diabetes.
Serum total protein level (from liver bone profile) - 82 g/L [60.0 - 80.0]
Serum bicarbonate level (from U&E) - 18.4 mmol/L [22.0 -29.0]
Tissue transglutaminase IgA level is negative, but my IgA level is above range 4.23 g/L [0.3 - 3.0]
My free T3 level was above range 5.59 pmol/L [3.0 - 5.0] from this past March, but head endo consultant did not say anything about it.
Ferritin level was 45 ng/mL [10.0 - 180.0], also from March blood test.
I have requested to be tested for thyroid antibodies twice, but the head endo consultant refused both times. The first time, he told me straight out that I did not have thyroid antibodies since the RAI got rid of them (???). The second time I saw him, my proptosis seemed to have come back and when I asked to be tested for thyroid antibodies, he said that it was obvious, and I quote, "they are all over inside that's why your eyes have bulged out more," and promptly referred me to the ophthalmology consultant, who then didn't find anything wrong with my "thyroidy eyes".
I am at my wits' end because it took me 15 years before I was referred to the hospital, and my mentioning about NDT that one of the endo consultants finally placed me on combined T4/T3 treatment (which helped a lot, for a short period of time). I have had the short synacthen test twice (to measure blood cortisol) and yet I still struggle to get out of bed. My joints hurt all over, that even walking a mile or two the previous day would leave me the following day like I have been beaten up. Getting fed up of being judged by doctors. I tried to tell them what was going on, yet they turned a blind eye and one of them even called me a hypochondriac. I feel like they're just waiting for me to develop more health problems so they can keep handing out even more medication. Now things have started to get out of hand and I feel like I have nowhere or no one to turn to.
Thank you for taking the time to read this. Any advice greatly appreciated.