This is my first post so you might need to bear with me. I've a feeling it could turn in to an essay!
I've been diagnosed Hashis since May 2013 and have a generally good quality of life on 100mcg Levothyroxine, all things considered.
I'm 23 and have suffered with poor immunity for as long as I can remember but it took two bouts of pneumonia and a complete loss of superficial feeling in my hands before I was diagnosed! My general immunity, energy levels and disposition have benefited massively from the levothyroxine (and my now gluten free diet) but my hair still doesn't really grow, i'm constantly battling weight gain, my skin regeneration is poor and I don't heal very well.
I still struggle with brain fog and (which i find most upsetting) I'm yet to regain any feeling in my hands- i also suffer with reynauds and find day to day tasks, such as writing and opening doors, quite difficult as a result.
After two years of physio, inconclusive nerve conductivity tests and steroid injections (none of which have helped), i've finally persuaded an endo that my hand troubles could well be thyroid related. As a result, he's rather reluctantly agreed to let me try some T3- making sure I understand that i'm a drain on resources and that the annual cost is comparable to that of chemotherapy... bit of a guilt trip but I expected no better.
I've had saliva tests taken privately and my adrenals aren't too shabby - cortisol is very high of a morning and slightly raised of an evening but I do a lot of evening exercise so that's not unreasonable. Private urine tests showed my free t3 to be low and suggested i had a fair bit of RT3- the GP did an overall T3 test which also came back slightly low so i'm optimistic the T3 could help...
Anyway, I can't help but feel like the endo has deliberately started me on a high dose of t3 to trigger negative side effects and discourage me from wanting to take it- without lowering my levo, he's decided i need to take 60mcg a day from the off!
I'm quite lucky with my GP- he openly admits he doesn't really know much about Hashis so he follows my lead to a certain extent, obviously within his strict NHS guidelines. NDT is categorically not an option with him but he's supporting the T3 trial so i'm happy to stick with him for now. However, even he was concerned by the endo's suggested doses and so, between us, we instead decided to start at 20mcg a day, split in to three, and raise to 40mcg in a fortnight, at which point he will re-take my bloods.
I started on my 20mcg yesterday and intend to continue taking the 100mcg for the time being. What concerns me is that the doctor has only prescribed me enough T3 to last the four week 'trial'- surely this isn't allowing my body long enough? I'm also questioning which blood level he intends to test after the four weeks? How will t3 effect my TSH? And is my body still likely to translate the Levo into RT3?
Also, assuming I have the blood test after 4 weeks, having used all the prescribed t3, what am i supposed to take for the week it takes to obtain the blood results and go back in to see him?
Any advice welcomed- I'd be especially interested to hear from anyone else who's used t3 and t4 in combination regarding how long it took to notice any changes!
Thanks in advance and apologies again for the essay!!