I'm afraid my case isn't completely straightforward, and this is a really long post, but I'd love some advice from anybody out there on where to go next.
I had a craniotomy for colloid cyst with obstructive hydrocephalus in July 2014. It was a success, but since then I have been uncomfortably swollen, digestion has been difficult and I'm often still dizzy with what feels like pressure in the head.
Six months after surgery I saw a team of endocrinologists who suspected some problems with the pituitary, but six months after that they decided that my problems were unrelated to the pituitary (I'm still not clear on the reasons behind this decision, but I think it's because hormone levels weren't sufficiently out of whack to merit pituitary dysfunction). And the cocktail of Desmopressin, Femoston 2 and Levothyroxine had increased the swelling and initiated pain/burning around the knees and pain in the feet. The Levo didn't help my thyroid levels. I also tested mildly positive for autoimmune soon after, and already showed a low white blood cell count following surgery, but don't know if any of this is related.
I still feel pretty awful and get incredibly tired, even working just three days a week, so I got the (rather unenthusiastic) GP to check my bloods six months ago. The TSH had dropped further to 0.89 and T4 is still low, but doesn't qualify for full clinical hypothyroidism. I saw the endo who felt that the drop in TSH indicates a problem with the pituitary or hypothalamus. My scans one year post surgery were so good that the neurologists/neurosurgeons no longer regularly monitor me, so I'm not sure whether any of this is linked to my head. I still get headaches and nose bleeds, but not so crushing that I'm in bed with them.
A consultant prescribed Propranolol as it had helped someone else with hypothalamic dysfunction and similar symptoms, but within five days I had swollen more - possibly because it can worsen hypothyroidism, or possibly because it impacts the liver (I'd only just managed to get my liver enzymes back in range after years of being slightly elevated, and I'm not sure what they are now). So I stopped taking it.
The endo has suggested a small dose of levothyroxine, but if the swelling is caused by liver problems rather than hypothyroidism, I don't want to make it worse again. I'm having acupuncture which definitely helps, but recently the effects are only lasting for a few hours rather than days, so I'm wondering whether I need to take the Levothyroxine too. The acupuncturist feels that the problems are hormonal, exacerbated by any kind of stress, with fluid build up (especially that in the abdomen) then causing the pain in the legs etc. And another alternative practitioner has given me some agnus castus to try to help correct any imbalance between oestrogen and progesterone.
If anyone has had similar experiences or can shed any light on where I go next, that would be amazing and massively appreciated. Thank you so much for reading my post!