Hey guys, I can normally work out the next best step to take but am a little stuck as nothing particularly making much sense. really sorry for essay but a little complicated!
A quick (as possible) brief history. Ill since a child, hashis since teens and muultiple other issues (diagnosed sleep disorder similar to narcolepsy, constantly aneamic, stomach, phompholyx, etc etc etc). By early thirties, could no longer get out of bed at all and was about to start insulin for late onset type1 diabeties and my adrenal glands were failing and had brown marks everywhere etc.
Gave up gluten and pretty much everything dissappeared, diabeties completely reversed and adrenals seemed to recover, brown patches faded, stopped conking out if got stressed although not been retested recently to double check. Since been diagnosed as something same as coeliac but not coeliac as diagnostically different and they don't have a name for it - long story! Daughter also diagnosed so genetic.
I've been on T3 only thyroid replacement for nearly 15 years as can't convert T4. Was on 60 mcg per day and thyroid test always the same and stable for at least seven years. After going Gf, had to drop to 40mcg.
Always had exceptionally high heart rate even before thyroid issues (even when tsh in hundreds and nearing thyroid coma) always above 120 with low blood pressure. Went up to 140-150 in spring and couldn't get a t3 blood test at the time so dropped to 30mcg, no effect on heart rate but tsh climbed to forty something in six weeks and felt hypothyroid. went back up to 40. Treatment for severe vit d treatment two weeks later, heart went down to 70-80 - first time in life and now stable so weirdly life long fast heart rate due to lifelong vit d deficiency lol!! - who'd have guessed lol
I don't produce any T4 at all, even if tsh goes up to 40/50 or higher - still no recordable T4.
still have a few issues with b12, vit d, ameania, ferritin etc but under management. Can normally tell what is wrong with all issues mentioned above depending on symptoms
Have started having new set of symptoms I've never had before, feeling toxic immediately after taking T3, huge memory issues, high temps, weight loss, needed to urinate more frequently and was getting incredibly thirsty, no sex drive at all alongside tiredness which happens with everything lol. saw endo consultant and he agreed that I was showing clear physical signs of hyper - ultra responsive reflexes (normally the opposite), trouble getting to sleep, sweating palms and shakes which are always worse after taking t3 and we agreed to try 30 again. We were going blind as no test results at appointment but did some after appointment and results indicate the opposit and should increase dose but haven't seen him since - will do at end of december. Thought I'd continue with 30 anyway as really did feel toxic? Optician also thought my new eye issues were due to the meds as well (enlarged pupils)
Some things have got better, can sleep at a more appropriate time, strange pains I was getting in my heels and various other places that suddenly went away and don't feel toxic and a slither of sex drive returned and improved period, not so thirsty. However.... I can tell I'm becoming a little hypo again in some regards which doesn't make sense?? And on top of this... I'm really not feeling as bad as I should or would normally if this low and I don't seemto be putting on weight like I normally do when low - I did the first month but kind of stopped and gone back a little now. Plus i'm not getting the headaches I normally get when low. Although not feeling great, am strangely really coping okayish with very low levels of thyroid of any kind???
Test results before dropping to 30 were T4 - none (or unrecordable), T3 - 6.9 (3.8-6.0), tsh - 3.80 (0.35-5.0) so like I said, looked like I should really up than lower!
Something else is clearly going on and the only things I can come up with is that taking into account the feeling of tocxicity I was experiencing, maybe there are problems with taking t3 and having no T4 in system for that many years and maybe it's the t3 the problem rather than me being hyper. Maybe some parts of your body need T4??? And I really don't understand how I'm still functioning at these low levels.
Or is there something else entirely that's the problem and this is alleviated if hypo and running slow???
Obviously the memory could be caused by low b12 but this is being looked into and it's still in range - just can't get it up naturally or higher than this. It might be best to get adrenals checked again also but I'm not exactly popping up with brown patches or getting irritable or falling into coma like sleep if get angry like last time so unlikely. I'm a little aneamic although just low ferritin this time, fbc all better than usual but I am really struggling to take the iron replacement unlike before as reacting far more than usual and feeling vomity if take.
I've rechecked my sugar levels, and these are better than normal and bringing sugar levels down very quickly even after huge sugar loaded pig out.
Is there anything else someone here can come up with as I'm totally flummoxed for once or has anyone else had anything similar????
I have all the tests of pretty much everything lol so just ask if you think anything particular would help or if there's something you have an inkling of?
THank you so much if you took the time to read, jus looking for any clues to be honest :o)