Hello. I'm new on here, and hoping that someone has any idea about my lack of response to T4, based on their own experience, or physiological knowledge. I have many symptoms of an underactive thryroid but generally my blood tests come back in the normal range, and I have had a confirmation of Hashimotos. I have been on 150 mcg T4 for about 8 years. It helps, but I still suffer badly from exhaustion, depression, and "brain-fog" which have no apparent cause. I have recently obtained a private prescription for extra T4 which I have titrated upwards to see how much I need to take to feel better. I've now been taking 800 mcg per day (Almus) for a week and have had no response to it, good or bad - and I see no point in trying higher. I am baffled - I expected to feel better with increasing dosage, and then to feel worse as I start experiencing hyper symptoms like palpitations and trembling hands - but absolutely nothing. I've tried T3 previously and it didn't have any enhanced potency compared to T4, so possibly not a conversion problem. Any ideas about why that's happening in my crazy body and how I could go about addressing it?
For context, I also take daily a multi-vitamin/mineral, 1600 U vit D, and 1 g Vit C (slow release). Have cut gluten and dairy (as well as eggs and yeast) from diet, and reintroduced meat to see if that affects energy levels; however, the only dietary adjustment that significantly helps seems to be severe calorie restriction. I've booked for blood tests at GP surgery but can't have them until mid-July (I usually avoid them cos they just prompt a message on the system to reduce the T4 dose).
BACKGROUND: Have suffered from sleepiness all my life. Since 12 (now 48), different GPs in a variety of countries have said it sounds like hypothyroism but lab tests always said my thyroid's OK: do it's just the way I am, and I have to learn to live with it. Since birth of child at 40, exhaustion has been worse and helpful GP interpreted highish TSH and lowish T4 as hypothyroid (even though they weren't always outside range), and when I asked for antibody tests we confirmed I have Hasimotos. He prescribed levothyroxine at 150 mcg to try and get TSH to low end of normal scale, and he's been very good about ignoring the warnings on the NHS system that he's over-dosing me. Symptoms improved but didn't disappear. Being a scientist and of curious disposition, I decided to do some self-experimentation a few years ago: got some internet tyroxine and discovered that I needed about 800 mcg per day to get any hyper symptoms and discovered how nasty that was. But other friends get hyper symptoms with changes in dose of 25 mcg, so that puzzled me. Read all the "alternative" thyroid books but wasn't in a financial position to get private testing or meds then, so tried to get help through NHS. Got referred to Endo who did a variety of tests & said that adrenals were fine, I was peri-menopausal, and was Vitamin D deficient. He decided vitamin D deficiency was the root of my problems and prescribed 1000U Vit D: he wanted to bring down my T4 dose, but was persuaded to keep it up although would not increase it. That was about 4 years ago and vitamin D levels quickly became normal but exhaustion/brain fog continued. A friend who works at top US med school has a colleague endo who prescibes high dose VitD (5000 U/day) for her Hashimotos and on her advice I tried that with the help of my friendly GP - it might have helped a bit (or might have been placebo effect) but anyway the GP's bosses cut the dose and I haven't tried to keep it high. Told the Endo about the need for 800 mcg T4 to get hyper symptoms and he dismissed it as completely impossible. Then sent to "Fatigue" clinic, but they decided I didn't have CFS/ME/whatever (despite EPV positive result, which they decided must have been a lab mistake despite my yellow pallor: follow-up showed recent EPV infection which must also have been a mistake), and even if I did all they could do was recommend graded exercise which is my normal approach anyway. Next I was sent to the sleep clinic. No apnoea found, so I was diagnosed with "Idiopathic Hypersomnia", i.e. we agree you need excessive amounts of sleep, but we haven't got a clue why (because the Endo said there was not hormonal issues, they had already eliminated that as a possible cause). Nice to have a diagnosis to give the boss and say I'm not just lazy, but otherwise completely hopeless. So I can have as much Modafinil as I want to help me stay awake (it works, but all it does is shift the sleep debt to a later date). Likewise, I can have as many anti-depressants as I care to ask for (just switched from citalopram to venlafaxine which should be a little more stimulating). But God help the doctor who gives me more thyroxine. I just don't get it. Having gone through all the conventional routes available to me I'm now back to looking at those "alternative" books again, and hope that others who've been though this can lead me in the right direction to improve my health.