I really understand feeling overwhelmed and finding concentration difficult, that's part of your illness, as is swimming against - at times - overwhelming feelings of apathy. I have a friend who had her thyroid out and her catch phrase for a while was 'I can't be bothered' - and in the end I really had to say 'that's your illness talking, and 'can't be bothered' will keep you sick' - it's very hard, and some days go better than others .... but we'll all cheer you on, but don't ever, ever give up! We have to be 'bothered' even when we feel like crawling under a duvet and sleeping for a million years.
I hear you on not really being told what's going on as well. My advice is write a list and sit there with a pen and paper, ticking things off and writing notes, if your concentrate is such that that's difficult, take a trusted person with you (one that won't be in awe to the 'specialist') who will take notes for you, even better if they or you interject and say things like 'sorry, how do you spell that?' .... this is YOUR BODY and YOUR LIFE, your doctor works FOR you, he or she does things with YOUR consent, they do not do things TO you, they do them FOR you. This is very, very important to understand and to feel confident about articulating. I had one very big show down with my (otherwise brilliant) endo surgeon who saw me for 18 months after surgery every three months. He was fab on vits, minerals, iron, sex hormones, diet, gut health, etc etc but would not contenance NDT. I did everything he asked of me for 18 months and was still feeling like death warmed up. He said (in a moment of stupidity) - your blood results are normal, it must be something else. That man had listened to me very, very carefully all the way through and that felt like a betrayal!!
I said, 'Forget the bloody results!! Imagine you'd never met me. And I walked in here five stone over weight, having lost most of my hair, with chronic constipation, fatigue, internal shaking, brain fog, swollen stomach, an inability to maintain iron homeostasis, sex hormone derangement, heavy periods, fatigue, water retention, blah blah blah. Why don't you use those highly sensitive medical instruments called your eyes and f**king ears! What would you say was wrong with me??????' and he said, well shouted, "HYPOTHYROIDISM!! But what the hell do you expect me to do about it???'
And from there, things got better, as I said, 'ah ha, now we are talking! The elephant in this room is NDT. I have done EVERYTHING you have asked of me and I'm still sick! The drugs don't work! I had a great career, and a life before this, I want to try NDT' (we were still shouting).
He said, 'I'd lose my job' and then I said, 'OK so now we are talking about what's best for you, I understand, but what about what's best for me?' and that's the moment when he conceded I could buy it on the internet, we'd 'pretend this conversation never happened' and he'd (and then his colleague after he emigrated) would continue to monitor me. And to be fair to the man, he shook my hand afterwards, and gave me a hug, as by that point, I could pull medical papers out of the hat, and talk with some knowledge about it.
The concern with NDT for TT patients is it might affect the Tg readings (cancer markers) as obviously pigs produce thyroglobulin. Patients who have this issue (I don't, my cancer markers have always been zero) is to take levo for two weeks prior to the tests and then go back on NDT - some of the American TT / ThyCa sites talk about this.
Sorry, I digress, for your next appointment I would want to know:
- what your TFTs are (and were) - so TSH, FT4, and FT3.
- antibodies - is ThyCa your only diagnosis or do you have autoimmune disease? So what are your TRab, TSI, TPO, Tg and TgAb readings? And if they haven't been tested, why not? (this is important to know partic if they are going to suggest RAI at any point) but will also help your argument for dosing - if you have TRab (TSH receptor) antibodies you are going to have a suppressed TSH even if you are HYPO, so they can disregard this. They should also be disregarding your TSH as you have had cancer, so FT4 and FT3 in particular are the stars of the show.
- If your FT3 is low in the range (needs to be high in the range) what do they propose to do about that? What's their view on T3?
- What are your iron (not just Hb, but full iron panel inc Ferritin) levels? Where are your B12, Vitamin D, Folate, electrolytes?
- Have they done a cortisol test, if so what was it?
- Have they tested your testosterone and sex hormones and if not why not?
- Is your doctor interested in your symptoms, write a big list, and get to know which ones are classic thyroid symptoms?
- What is their care plan for you? How often and by whom will you be seen? Will you have to do the barbaric testing where they take you off ALL drugs for six weeks before scanning you? (thank GOD I've never had to do this, sounds like living HELL).
- Will they ensure you are kept on the same brand of drugs (there is a wide variation between brands, up to 10mcg per 100mcg of T4) - this is very important for ThyCa patients, and they might have to intervene with your GP if they keep issuing with crappy generic.
- Will they help you work with your GP (to get full tests between appointments, a good endo will be writing to your GP to keep them in line as GPs are usually utterly rubbish at this stuff, they can do some of the tests above if your endo hasn't, or can help monitor your progress)
- And as before, your mantra should be 'I'm young, I have my whole life ahead of me, can we get our skates on!!'
I get my NDT from a trusted online pharmacy in the states, as do many patients, we can recommend this to you when the time comes. It's important not to rush onto NDT without having your 'ducks in a row' first, particularly iron, otherwise you will make yourself feel very unwell. Also the advice for TT patients getting on NDT is a little different and the starting dose is a little higher. Again we can hold your hand if you need it. However, you might be one of those lucky people who do fine on levo, or T4 + T3 and in many ways this would be your best option as then you'd be getting your drugs for free and not in a tricky situation with your doctor.
Meanwhile, eat very good food, nice and clean and natural, lots of water, and try to do a little bit of exercise ( a fifteen minute walk, a ten minute swim, a gentle yoga class), get on a good sleep rhythm, try not to use gadgets in or just before bed, and start your diary - even if you just took your temp and pulse every morning before you got out of bed, that'd help, and note down any major hiccups (e.g. ate banoffi pie, had heart palps afterwards, or walked the dog and then needed to sleep for four hours) ....
Hope that helps, sorry another essay!