What am I missing? Unknown illness.

[PrincessTheresaofLiechtenstein]

I am at the end of my tether with this (well, I say that, I get upset and/or raging and then just bloody carry on). Just wondered if there was anything anyone could suggest.

Won't bore you with a very detailed history but am on levothyroxine for my thyroid, have been for nearly two years. Been getting normal results for a few months. Have also been treated for very low ferritin and very low vitamin D levels. Also been normal for a while. No coeliac disease, no anaemia. No raised antibodies. No inflammation. Nothing untoward in any of my many many blood tests in the last six months. Am sure I am not depressed, though I occasionally feel panicky (this has got better this year).

And yet. I wake up sort of ok each morning and as the day goes on I can barely make it through. Walking up the stairs slowly clutching the banister. Legs feeling so heavy. Occasionally knees achy but it isn't pain as such that bothers me. Getting up from kneeling I sometimes feel weird and as if I will black out (never have). Feel like that standing in queues too. I now have to think ahead and plan my day so that I can rest frequently. I am struggling with work though I do very few hours.

Had some other minor niggles in the past which resolved with my treatment so why is this all still happening? a few weeks ago out of the blue I felt totally normal again for about two weeks. Was over the moon. Then it all came back.

If anyone has ideas of what I can be tested for I would be very grateful. GP is nice but at a loss.

To clarify; I lost huge amounts of muscle strength and have possibly been going through aneamic stages while laying down new muscle. Hence fatigue.

This always happens to me when under active as I'm petite and a bit hypermobile. I loose weight rather than gaining it as my metabolism slows down. I think the extra stress of keeping up with life causes my muscles to wear down.

My ferritin was 57 and endo commented it was a little on the low side

Best thing I did was buy bmj book on thyroid issues by Dr a toft and wave it in front of gp. It lists associated conditions to look out for with hypothyroidism as well as meds that can cause issues plus the fact that most people need to have Tsh in low end of range and t4 in high end of range. T3 is a bit variable throughout the day so a bit tricky to measure, however he also comments that in an ideal world we'd get a pill that has combo t4 and slow release t3, as its half life is only an hour and a half.

Some people do manage to get combo t3 and t4 but I think it's a bit tricky to manage it really well.

I have a thyroid condition and low ferritin (was 9 then 16 after six months' iron supplementation - now at 22 but have just had the mirena coil fitted so hoping that will help further). 70 for ferritin seems a long way away for me but am upping the iron still further!

Anyway, I have a tendency to low bp and definitely get the headrush thing quite often - sometimes multiple times a day. The POTS test wont necessarily capture a problem - you need to ask for further tests. I got referred for an ECG and tilt table tests - it turns out I have low bp and vasovagal syncope which just means my blood pressure doesn't correct itself if stressed in the wrong direction iyswim. So if it starts to fall it can't correct itself. The ECG and tilt table tests were necessary to demonstrate that there was no underlying heart condition which there isn't - it's just the BP issue for which there isn't much treatment (other than drink more water and eat more salt, I was told!)

Tsh has gone from 0.27 to 1.2 so am upping the levo again. Ferritin down to 35 so need to up the iron as well. i am going back in a month and if no improvement then endo referral. Got the Toft book for further ammunition!