Hello! First time poster so apologies if I'm being a bit of a thicko.
Symptoms: For literally all my life, childhood and all, I have had ridiculous sleeping patterns. Basically I sleep untill woken, so with drugged-up parents like mine that was sometimes a week after I went to bed. Conversely, I could also stay awake for days at a time. Absolutely no diurnal rhythm. Also since childhood I have had hot flashes, extreme salt cravings, and anxiety problems. Despite not eating for days on occasion, I wouldn't feel any hunger.
I'm 32 now and have lost plenty of jobs and relationships due to being asleep for days on end. Still no diurnal rhythm. In the past year my symptoms have multiplied and worsened, to the point of spending months in a wheelchair. I now have weight gain (+10inches at the waist, and I used to be a model!), days when I can't get out of bed no matter how frequently I'm woken up, hip and leg pain leading to total immobility, daily increasing confusion, memory and word loss, gasping for breath (sometimes even when I'm lying still in bed), daily hot flashes and dizziness (I actually quite enjoy the dizziness, it makes me giggle). I can still go for days without eating and without hunger, but my partner now cooks a dinner every day so recently I've not had to I have a pot of salt next to the bed, I dip into it maybe once a day.
Current state of play: In bed six days a week, if my painkillers do their job I shuffle out for a short walk in the evening (never could abide sunlight). Once a week I drink a can of 'rockstar', take extra painkillers and manage to walk round a shop for a bit, still with pain and breathlessness.Then back to bed.
My gp says this is all normal, and is half convincing me that while the pain is 'real to me' it isn't real in any clinical sense. All other symptoms are normal for people my age, he tells me. I'd be more convinced if he hadn't also told me that saliva cortisol tests didn't exist, haha. Still though, I'm open to suggestions on how many of my symptoms may be psychosomatic, especially considering the illegal substances my mother took while carrying me. My gp tells me that speed (her drug of choice) consumption during pregnancy would not have had any effect on the foetus.
I've been allowed to have some blood tests, but as the results are all normal I'm not to have any more, it seems
Serum Ferritin = 15 ug/L (no range given)
Serum free T4 level = 12.3pmol (no range given)
Serum TSH level = 2.19 mu/L (range 0.35 - 5.50)
Serum Total Protein = 71g/L
Serum Sodium = 139mmol/L
I have a load more to do with blood counts and platelets and so on, I don't know how relevant any of them are?
I thought the ferretin and ft4 looked a little low, but I'm new to all this and could do with suggestions.
My plan is to get some tests (FT3, RT3, TPO, TgAb, active B12, folate, iron, cholesterol, calcium, vit D, vit D3 and saliva cortisol... any others?) done via Blue Horizon, take the results to a private doctor (or endo?) And see what happens. Does this sound like a valid plan of attack to you? Would it at least be a start? Do you think I'd maybe be better off going to councellors instead? I've been sent to so many already and none can find anything wrong, but I imagine finding a good one is like finding a good gp, eh?
A few years ago I was running a nightclub in Mayfair, and now I daren't go downstairs in case I can't get back up again. ANY advice at all would be wonderful, please. Sorry for the over-long post x