To cut a (very) long story short I've been ill since the age of around 11, I'm now nearly 26 and still spend a large amount of time in bed, if I manage out of it I need a wheelchair everywhere. I was diagnosed with M.E. when I was 13 but more recently been diagnosed as having Ehlers-Danlos type 3 and POTS (postural orthostatic tachycardia syndrome). I'm also B12 deficient which I get one monthly injections for from my GP. I have also recently been diagnosed as having a severe bladder wall infection which has been going on since I was little (and ignored by the nhs until I went private).
I have numerous symptoms but the worst for me are severe exhaustion and weakness, joint and muscle pain, palpitations, shortness of breath, stomach symptoms (constipation & nausea, bloating, discomfort), severe dizziness, dry skin, bladder pain. I have also gained weight although at the start of my illness I was underweight and tube fed due to my severe nausea.
I've never been diagnosed on the nhs as having a thyroid problem but ever since I became ill my T4 levels have always been low. The lowest the T4 has been is 6 (range is like 10-21). TSH has always been fairly ok and is sitting around 1.35 now. T3 is high normal at 5.8. I have trialled thyroxine in the past but it made my palps worse and I felt no real benefit (100mcg). I had been on 1 grain of armour which I was buying myself from abroad but even that didn't make a huge difference (I am now completely off it as I wanted to get my levels re-tested - I had been on 1 grain for a good 3-4 years).
Basically I want to understand why my T4 is so low but the tsh is normal and the T3 is actually not that bad ? I'm under an endocrinologist who wants to re-do my T4 whilst off my meds and he said he could possibly 'supplement' it but I'm guessing that will be with thyroxine and a very small amount at that, which doesn't do anything for me.
My Mum is also unwell and has been for a number of years with similar symptoms but also depression mixed in. Her tsh and t4 levels are very similar to mine and yet the GP prescribes her 100mcg thyroxine - of which makes no difference to her symptoms either. Yet they won't treat me...
Any advice/help would be great. The endo I saw requested T4 to be tested but it's been refused twice by the labs because my tsh is normal. V frustrating that I'll have to pay yet again.
Thank you in advance! Becca