It's not Chronic Fatigue - but what IS it?

[SuzCat]

I've felt terrible for nearly 2 years.
I've always loved to sleep, and really needed it, but I've needed to take a nap daily on top of my 8 hours at night. Lately, I've been needing 2 naps. I get awful headaches over and in my eyes and also at the back of my head. When I try to keep going, I slow down until I can barely move. I end up motionless on the couch, in blinding pain with my eyes and head. As you can imagine, I can't work or study and my kids and husband are missing out. I wake up every single day, feeling like I haven't slept.

I have a very strange problem with heat. I get sudden hot flashes about 10 times a day. When I eat, whoosh! Suddenly BOILING. Have to strip off to cool down. Just making breakfast heats me up, having woken up cold and shuffled downstairs in 2 sweaters. My family is freezing cold because it's 16 C in the room because the heat isn't on yet, but I'm opening windows so I don't faint. Taking the dog for a walk, everyone else is wearing coats and hats, but I'm in a t-shirt and exploding with heat. My neighbours think I'm nuts. My ob/gyn has tested me and says it's not early menopause.

The brain fog and exhaustion have been a constant problem throughout this time, even when my thyroid levels were all "normal". The heat problem was even worse when my levels were on the low side of "normal"- I actually spiked fevers for 6 months, several times a day and ended up in hospital for a week a year ago, for testing.

I've been tested for every illness and disorder they can think of. I've had CT scans, x-rays of my chest, ultra-sound of my organs, a heart scan, radioactive tests searching for hidden tumours, blood tests for infectious diseases and a spinal tap. Blood tests always show my C-Reactive Protein level at twice normal or higher, and often my platelets are high. WBC currently normal, but was elevated for a year. My potassium is 5.5 - too high, but GP doesn't seem bothered by it. My Vit D is low (even though I take a supplement). My ferritin is low, but blood iron and transferrin are normal.

I'm currently seeing a rheumatologist, who's tested me for Lupus. That's negative, thank g-d. They really want to label it Chronic Fatigue Syndrome and send me away to sleep and struggle out of their eye-line. But they can't label it that unless my blood tests all come back normal. But there's always something going on. Mostly, this C-Reactive Protein thing is the problem for them.

I studied English at university and only minored in Biology, but I've got this strong feeling that my hypothalamus is behind this. Or my pituitary gland. My GP doesn't agree. I really want to see an endocrinologist, but they're in short supply round here and she's holding me off.

So, after my long story (sorry!) what do you think? I'd really appreciate a new perspective on all of this.

Thanks,

Suzie

[ErinBBC]

Hi - I think you should go to www.primaryimmune.org and read about CVID and other primary immune disorders.  It sounds like you may have one (many of which are hard to detect with the 'standard' immune system workups that doctors do), I have similar symptoms.

I would also really push your doc to get to you an endocrinologist, especially since you already have a thyroid issue!!

[SuzCat]

I forgot to include that I have hypothyroidism. It was diagnosed after the birth of my son 6 years ago. I don't know if it's Hashimotos or Post Partum Thyroiditis. I need to get my anti-body levels checked.

I mistakenly took too much thryoxine for 3 months - 200mg, double my dose.. I've been back down to my regular dose of 100 mcg for four months.

Results at 200 were:          TSH 1.04   FT4 12.9 (10-20)    FT3 3.5 (3.5 - 6.5)
Now, on 100 mcg results:  TSH  0.03  FT4  15.6              FT3  5.8

This looks weird, Shouldn't my TSH have been lower on the high dose and higher on the low dose?