So I'm 28, was diagnosed with graves nearly two years ago..after a weight loss of two stone in two weeks, regular 3-6 hour long heaving vomming morning sessions ( always more nauseas in morning, found generally less nauseas and disorientated if i can sleep through til late afternoon and wake up of my own accord) and heat/motion related blackouts began.
It took me a long time to be able to even get to a doctor as the surgery would only give out emergency morning appointments as I was mid morning vomiting sesssion right through those times it dragged on quite a while undiscovered. After eventually finding out it was easier to stay awake all night do any early morning jobs and then sleep was less debilitating I managed to get there.
The doc took one look at my medical history...(mental health issues from 10 years ago.) and pronounced me mentally unwell. I showed her how my trousers were falling down on me, and how crouching down/ or leaning over led to blackouts. and eventually sobbing about how long it had took me to get there in the first place she humoured me enough to say she would run some hormone tests...but this was on the strict understanding that if they came back clear that i would have to accept i was mentally unwell.
After a lot of negligence/ misinformation i was allowed my 2nd appointment in 5years for my results. Told I was toxic and going for a scan in two weeks.
8 weeks later saw the first endo who said you dont need a scan you've got graves disease take these (carbimazole) come back in 6 weeks and promptly dismissed me.
I didnt take medicine (im not great at swallowing and had seen enough online to frighten me) and by the time i got my second appointment i'd lost 7 stone in the 5months since i noticed i'd become ill. he asked why i didnt take them, i explained, he said take them come back in three months.
We went to a year long pattern of this. I never had any explainations of graves, anything I know I've learnt online. which of course the doctor always dismissed, regardless of the fact i was pretty much bedridden for a year all I was able to manage was googling extensively...in between sobbing, groaning, suicidal thoughts, bone pain, fatigue, shaking, squinting, losing half my hair, skin changes, literal inability to sleep for sometimes 6days at a time, the mind fog, complete outrage and bitterness at anybody who continued to have a life, guilt, sorrow, nights ringing people and waking them up in midst of a panic attack usually bought on by palpitations and stupour. Starvation whether or not I'd manage to eat I was always hungry, i felt empty stomach pains...
On the odd good day i'd cram so much id fallen behind on, shopping, cleaning, socialising, clearing out all my stuff (as at this point i felt i was just waiting to die) that i would be punished with a few days of agony afterward.
Lots of blood tests, never really explaining or changing anything...just more confirmation to take the pills and frustration that they wld not work with me to find something else that could or might work.
4weeks of stomach flu followed by bronchitus and then quinzy. I ended up in hospital with a thyroid storm. The worst bit of all had to be the constant justification and explaining of myself, I felt like a burden and a moaner, and whilst I had enjoyed the weight loss initially, I was rarely well enough to be out to show it off. And when I was people would declare how healthy I looked and that they were glad I was feeling better.
i got quite accustomed to hearing the phrase "well you dont look ill" and feeling like a complete hypochondriate, and of course would pick up every bug floating around in just a little trip outside and incubate it and develop it into some lethal chest or throat infection that would last sometimes 2-3months.
I used to think If i had the energy to actually get myself out of bed yesterday and off myself I wldnt be going through this groundhog day type pain again today....
after 15 months of this, it became more manageable...still in pain, still tired, erratic 3 days asleep four days dashing about. insomnia..but it was definately liveable. Until 5 weeks ago blood results showed I was toxic again and slowly its crept on.
I now coming to the end of my fifth night with no sleep am exhausted, but the palpitations are making me too frightened to sleep, i think i'll have a heart attack and die and nobody will know. So i just keep counting my pulse and moving as slowly as possible, the endo through his secetary this afternoon had told me to get in an ambulance, but I was so disorientated and confused and exhausted at the time i said it would take me a while to find my things ( am wandering around house constantly not know where I am going or what I was planning to do)
so the secetary jumped the gun abit and sent the gp unawares to my house (the lady who had diagnosed me as mentally unwell for weight loss and nausea) who barged into my home lettin out my dogs leaving me to try and try and settle them, when i could barely stand or see, after my explicit instructions for her not too.
she proclaimed my pulse high but okay asked what was wrong to which i had to explain graves disease to her she said i'd better have a sleeping tablet i pointed out goiter is so enlarged im barely sipping water at present and I wouldnt take anyway due to exaccerbating my anxiety of something happening to me in my sleep..
she said I mustve stopped taking my meds.. i explained ive never been on meds, she then started a confusing and aggresive row with me about this ( the lady who didnt know what graves disease was 5 mins before). She shouted repeatedly what are u wanting me to do ...i pointed out I hadnt called her or invited her into my home, I didnt want her to do anything she just hadnt given me edgeways to say so until then.
She decided I'd be admitted into hospital right away, to which i said i cant rush about i feel sick and dizzy and i cant focus my eyes, or i've already have been on my way before she barged into my home....and wld not be leaving my home until my pets were organised a sitter, and i knew everything was switched off and locked ...as Im confused and disorientated i need to do it slowly and methodically so as not to become panicked again.
She grabbed my poor little doggy tried to drag him by his collar outside... I did in all fairness become aggitated demanding she get off my dog, and get out of my home, she was making me feel faint with panic ...pointed out again I hadnt rang her, I'd rung my actual consultant and was following his advice when she intervened unecessarily.. to which she picked up MY phone rang somebody and said she is unknown to us has a history of mental health and is very aggitated, is that normal when coming of carbimazole...
myself enraged by this shouting i've just told you that ive never taken carbimazole and after your first mistake diagnosing graves as mental illness I wldve thought you'd be a bit less quick to bandy that about. admittedly I basically screamed to get out of my house until i managed to get her phyiscally out.
Obvs after this incident I was too worn out, and too nervous to waste anytime or energy getting myself to hospital as plannned incase I received the same reception there, particularly as i'd allowed myself to scream and perform like a full on crazy person to get her out of my house. I actually hid behind my peep hole for around half an hour convinced she'd send the police to institutionalise me....
8 hours later im still sat in the same position Ive been in since sat morning. Googling helplines and holistic methods, and complaint boards and reading other peoples stories, generally feeling bereft, very alone, without energy or will to fight again.....
I genuinley feel like my organs are shutting down...and that nobody cares.. not that they'd be pleased..but life would be a little easier if I was not around complicating things. I'd pen some beautiful last words but the dragon of a doctor knicked off with my pen in her haste.
Somebody give me some hope, or some idea's or tell me im not mad...or something, PLEASE. (just to be clear I would never actually off myself I love my doggies too much, they are the reason that I'm clinging to the last shred of fight I have by asking for help here now...but its still unpleasant to have them kinda thoughts lurking about HELP.. SOS...PWEEEEEEEESE.
Greatful for anything right now. xxx