So the day I had been dreading finally came around, my endo appointment.The way I saw it I had three options.
1. My first thought was I should go and tell her exactly what I thought of her and I can honestly say that duff wasn't one of the adjectives that sprang to mind! (are you with me greygoose!)
2. Maybe my best option would just be to cancel.
3. Perhaps I should go, keep calm have a sensible discussion and who knows maybe even she might learn a little something!
I decided on 3 (yes I know what on earth was I thinking, not a lot probably with this fuddled brain of mine!)
Endo. Hello how are you feeling?
Me. Extremely unwell and angry in equal measures.
Endo. Oh so you don't feel any better after I put your thyroxine up by 25mcg ?
Me. Well just over 5 weeks into the dose I did have about 4 days when I felt much better, aches and pains subsided and I slept better than I have in years, however it now feels like I'm back to square one.
Endo. Well remember our discussion last time when I said I will try to get your TSH down to mid range, about 2.5 and you might feel a little better but I doubt it? well the your test shows that its now 2.7 and that's close enough, I wont be increasing it again because its clearly not doing you any good!
Me. (to self Breeeeth!) I'm sorry could you just repeat that I don't think I quite heard.
Endo. I wont be increasing your dose, its clearly not doing you any good your blood tests are absolutely normal. Remember on your last visit we had a little chat about CFS and I wrote to your GP?
Me. ( to self noooooo this wasn't how it was meant to go, BOOM) Well yes its about that letter that I am so angry, firstly you have got the wrong results in that letter, have you any idea how bad that is should my GP be treating me according to those results, do you know how many people actually die when doctors get doses wrong or put decimal points in the wrong place?
Endo. Oh oh yes I see what you mean I'm so sorry its just a typo mistake!
Me. And yes I do remember our little chat concerning CFS and my response to you was please don't stick that label on me all these symptoms are down to my hypothyroidism being under treated. However you just couldn't help yourself could you ?Do your realise that anything I would need to see my GP about from then on would most probably have been put down to CFS? My thyroid would never be sorted. As far as I am concerned the CFS label is one word that covers my symptoms and not an actual diagnosis. Its a label that's often used because of a shortage of either time , cash, or intelligence to make a proper diagnosis. How many other patients do you think that happens to? You left me no option other than to sort this out for myself. Do you realise how stressful this has been for me to do feeling like I do?
Endo. But your results are totally with in the normal range, they are fine.
Me. Did you ever look at any of my previous results that you have in front of you prior to when the problem began? I then put on her desk the blood chart I had printed and filled in off Thyroid UK . Nice and simple with all my prior results up until my levo dose was drastically reduced from 125mcg to 75mcg. All was fine and my TSH was suppressed at 0.1 on everyone, with an occasional comment at the side reading 'if this patient is on T4 then this is probably a euthyroid result'.
Endo. They are abnormal results.
Me. That is a normal result for someone who is hypothyroid and taking T4. Do you know what a euthyroid result is? Total silence. I have no idea whether she was too embarrassed to say or really didn't have a clue. All she kept weakly repeating was those results were abnormal and now they were perfect
So now time to bring out my printed off article by Dr A Toft in the Pulse magazine, my book of Stop the thyroid madness II with appropriate pages marked. By this stage in her head she still could not admit she had got this so wrong but her face told another story. I told her what my other options had been and why I had chosen this. She asked me what I would like her to put in the letter to my GP and that she could tell him to ignore CFS diagnosis. I told her that the best thing she could put was the truth that being I had an under active thyroid that was being seriously under treated. She then asked if she should increase my levo by 25mcg and I told it wouldn't be necessary as I had done that myself on Saturday after seeing my latest blood results as I wasn't prepared to waste another minute of my life. She then said she would refer me to the most senior endo there but with a list so long it would be many months. After this experience I really didn't care whether I saw him or not anyway as I figure they are probably all singing from the same hymn sheet so to speak anyway.
Endo. May I go and take a photo copy of the Pulse article?
Me. You may and maybe you can think about getting yourself a copy of this book ,you may learn a great deal and future patients could really benefit. (Stop the thyroid madness II) She leaves the room to get the photocopy and comes back a couple of minutes later.
Endo. You have an appointment with our senior endocrinologist 26th October.
Hopefully my blood pressure will be back to normal by then and ready for 'round 2'.
All I have to do now is to thank each and every one of you out there. You have taught me so much. Some of your threads make me sad and I hope from here you will find the strength and knowledge that I found to pick yourselves up and claim back your lives as I slowly but surely am doing. Some of you have made me smile and laugh out loud, rediscovering my long lost sense of humour. From the bottom of my heart thank you.