As you've probably guessed, I'm a tad over-excited because I saw my NHS Endo yesterday and after some discussion (discussion ONLY made possible due to the information I've picked upon this site), he agreed to give me a 3 month trial of T3.
This was remarkable as this was my third appointment with him - my first was in August 12, when he said that all of my thyroid tests were normal and "whatever your problems are, they're not caused by your thyroid, or your endocrine system, so I cannot help you. I'll let your GP know and he'll probably refer you to a neurologist." I left his room in tears.
My GP referred me to a neurologist who said that I had 'a lot of symptoms' and said that he wanted me to see a psychologist to "discuss my illness". In the meantime I would be sent for an MRI scan to rule out MS and an EMG to rule out "any of the myopathies and motor nurone disease". At this stage I had refused anti-depressants from my GP on numerous occasions.
I was diagnosed as hypothyroid three weeks later, on 20th September as I presented to my GP with unbearable 'scream out loud' cramps and the most awful swellling on my face and neck which he finally recognised as a problem (photo attached). FT4 <1 (11-25) TSH 50.8 (0.24-4.20), CK enzymes 1370 (<200).
I was admitted to hospital for an MRI scan and psychologist's appointment on 3rd October. They completed the MRI and the Consultant Neurologist came in with his four Registrars who told him that I'd been diagnosed as hypothyroid two weeks' previously. He looked at my test results and you should have seen what happened next - it was like a Whitehall farce! There were Registrars running all over the hospital! He was shouting "when is a thyroid diagnosis not a thyroid diagnosis? When you're this poor woman! Why did they send you here? Look - this woman must be feeling dreadful with results like this - are you sure this TSH score is right? Cancel the psych, cancel the EMG - I'm not putting this lady through those - she's hypothyroid, for goodness sake - she doesn't need a psychiatrist or needles put into her muscles!". Get her GP on the phone! Much hilarity!! He asked to see a copy of the referral letter from my GP. He didn't let me see it, but he did say that there was "some mention of somatic illness". He discharged me and told me not to let my GP send me to a psychiatrist! What a waste of NHS funds - I was in that hospital for 2 days.
I saw the Endo again in on 11th December, by which time I was on 200mcg of Levothyroxine but feeling dreadful - if not worse than previously. He asked me to wait 3 months to see if my situation would improve and if they hadn't he'd see me in February.
Yesterday, after taking me through the (as we all know, flawed) NHS thinking behind the 'normal ranges' for thyroid testing, I asked him how he knew that they were 'normal' for me. He blinked at me for a bit and then said that the ranges for thyroid were 'suitable for 95% of the population'. I asked how he knew that I wasn't one of the 5%. He said that with my results at FT4 22 (11-25) and TSH 0.27 (0.27-4.20) I was in the 'normal' range. I said that I'd much rather be in the optimal range - for me. He blinked again and rolled his chair away from his desk and crossed his arms.
He asked if I had been reading up on my condition and I said "Of course. Wouldn't you if you were diagnosed with an illness?" He said "Yes, I suppose... The internet? "Not exclusively" I said. I quoted Dr Toft from the BMA book regarding the fact that wellbeing is sometimes only achieved when THS is suppressed and FT4 in the higher range - possibly as high as 28-30 - he interrupted me to ask "what book?". I pulled my copy out of my bag and said "the one that's available in most High Street chemists". His reply was astounding - "Oh, I've not seen that before. Can I have a look?" and flicked through it for quite a while before saying that it was interesting...
We countered back and forth for a while - with me dragging up information gleaned from this site in a miraculous fashion. Somehow my brain fog allowed me to remember things when it was important! I didn't quote from Dr. Peatfield's book - I just took it out of my bag and rested it on his desk with the title facing him whilst he was looking at Dr Toft's book! He eyed it sideways...
He said that "even though it is VERY, VERY unusual that patients do not respond to T4" he'd agree to "a trial of triiodothyronine together with liothyronine to see if that made any difference". I said "aren't they both T3?" (thanks SO MUCH Rod for the explanation the other day) and he said "no, liothyronine is T4". (Yea gods!) I said "no, that's Levothyroxine, surely" and he got a tad flustered and picked up his BNF, flicked through it and said to himself "Oh, yes, they're both T3 - they've got different properties, I'm sure - why is that then? Oh yes, liothyronine is the brand name... that's it... yes. Let's do you a trial, shall we? I'm not sure how much to start you on.... what's the starting dose? Let's see. Shall we start at 10 mcg twice a day? Yes, I think so. Best split into two doses."
So, I pick it up tomorrow as it had to be specially ordered by the pharmacist. I am very aware that this is just a trial - and it may not work for me. But I do know that I'm more fortunate than most in that he is willing to give me a trial. If it turns out not to suit me, then I'll have to think again.
I'm sorry that this has been a long blog (and it's my first, lol!) but I am so very grateful to everyone on this site for helping me so much. Six months ago I knew nothing about thyroid issues - and I've been 'lurking' here since September. This meant that yesterday I was able to have a forty minute in-depth discussion with a Consultant, who knew that I knew that he was 'toeing the party line' in terms of what they tout as 'effective' thyroid treatment in this country. Happily, he looked quite sheepish when I left. Bless!
Thank you all (for your help but also for your patience in reading this blog!)
Photo above is how I looked 2 years ago. Photo attached taken on the day of diagnosis in September 2012. How could my GP not see I was ill? Beggars belief!