GRAVES ADVICE/TIPS Desperately struggling atm. WARNING first time poster= massive essay :/

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

22 Replies

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  • For starters, I have attempted to add in some paragraphs for a little bit of clarity. I hope I have kept the 'feel' and meaning in place.

    The best advice I can give (not medically trained) is that, in my opinion, your body clearly needs some sort of treatment. Perhaps you could get a referral to an Endocrinologist and discuss your options. Email me for a list of 'good' NHS ones. louise.warvill@thyroiduk.org

    I should imagine some more helpful people will be along shortly, things usually pick up around 7-8 am.

    Louise

    x

  • THANK YOU. At the time i wrote it i knew it looked rambley and messy was just so desperate, to get it out quick before i lost my bottle or train of thought..I clicked post. Tbh I thought it was sooo long winded that nobody would bother to read so am suprised and delighted to come home to the replies, Ima bit lost how i do this do I reply to each person on the reply link and general to all at the bottom? Had a bit of a break through today so am feeling very positive xxx

  • How terrible for you! I'm no expert but it sounds like you need to see a specialist ASAP! Can you call the endo again and either ask for an urgent consultation or admission? Please don't leave it too long :(

    Hopefully the endo will see you as they were telling you to get an ambulance they were obviously taking you seriously.

    Take care and please please get some medical help. It sounds like you are going through an awful time.

  • Thank you for your response I have updated at the bottom. Am home now and still a little groggy but hell of alot more positive and loved coming home to these comments xxx

  • Hi Punjabi Barbie – can't offer practical advice on a par with the people above, but wanted to say you're not the only one who's posted an "essay question" this morning (if it's a bad thing to do, I'll be sat with you in the naughty corner!) :-) Also want to say good luck – you're not mad, just going through hell at the moment yet still retaining what seems like a great sense of humour. All the best to you and the doggies! xx

  • Not bad to type an essay - just difficult to read as one continuous paragraph! :-) xx

  • Thank you, so much. Half of the battle I think is knowing your not the only one going through it, so you can't possible be mad ..( though i am abit..but the nicest kind of weird). Genuinely grateful for your response xxx

  • I see no point in tip toeing around this. You have graves. You are not accepting treatment. A thyroid storm CAN kill you. Get treated and get better. (the paranoia you are experiencing is typical graves.)

  • I agree with this answer. From the way you describe it it sounds like life is pretty intolerable at the moment, but it also reads like you are resistant to try any treatment or accept any medical help. It sounds like the medical people you are coming into contact with are taking you seriously and offering you help - although maybe they are not communicating that in a way you are comfortable with? If swallowing tablets is difficult for you because of the goiter, then is it worth considering the removal of your thyroid?

  • I know im a complete nuisiance when it comes to medication. I always have been however the graves did exacerbate it somewhat, I knew I was being a nuisance I literally couldnt do it though. Which understandably is frustrating for everyone around me. Consider my bottom firmly smacked by you :) xxx

  • you're entitled not to take medication without considering yourself a nuisance. I am choosing not to treat my graves atm, so am all for making our own decisions, particularly in the face of patronising doctors who act like they own us. It just sounded like not complying at all was making life so incredibly difficult for YOU. Glad things are seeming better - we all have those 'I can't hack it' moments and online support groups can definitely help with those

  • i too have graves disease but was fortunately diagnosed quickly and treated

    it took 2 weeks of meds for me to feel better so as much as you dont want to take the tablets i do think they re necessary

    after a while the amount of meds you have to take is then reduced

    if you re having problems swallowing could you dissolve the tablets in warm water? don t know if this is possible or ask the endo if there s a liquid version of your meds

    i do think like the post above the sooner you can get some meds the better you ll feel

    good luck

  • oww dear thats not good, re GP, I had a phobia about medication, I was feared that the side effects would make me worse so didnt take any.

    However Im ok now about taking meds, you do need help and you need to get to hospitol.

    The ladies on here have a more understanding of graves, so listen to them regardless of the shabby treatment from the gp.

    your body is being attacked and it need stablising, I hope you decide to get the help you deserve.

    good luck big hugs xx

  • I'm glad im not the only one with the phobia medication. I had a double ibuprofen a few weeks ago and made a complete nuisance of myself calling people mid panic attack cos i felt woozy and like i was going to pass out. What a mare I am. Though in my last bout of quinzy the hosp had sent me home with an inordinate amount of medicine to take (fourty spoons a day of various different ones)...kept grumbling it wasnt right, and i felt drugged fell down whilst feeding the dogs, the tin lid sliced my middle finger open badly..had 5 stitches...I made sure I got a picture of the stitches before it was bandage to email my mother...with the caption I told you it was too much. Love abit of vindication and to reveal it dramatically. Was almost worth the whole palaver. xxx

  • thank you so much for sharing this with me. Would be interested to know further details on your treatment with the tabs ..ie i've been led to believe theres a lot of messing around adjusting them til their correct and then having thyroxine because their hypo and piling on the pounds even when dieting and exercising....did u get any of this or was it literally smooth sailing?xxx

  • I feel for your situation. A couple of years back I found out I have GD & had a lot of your symptoms (although seemingly not as bad). Paranoia, mood swings, anxiety, as we'll as the physical problems associated with GD. It was when I lost a lot of weight quickly that I ended up at the GP. My levels were high (t4 81) but I've no idea if that's close to a thyroid storm, but I know I felt dreadful, so can't imagine how you feel.

    I was out on carbimazole & propranolol (beta blocker) which helped my palpitations. I came off the carb after 18 months (but am back on them now for years until I decide what my next option is) as I didn't go into remission.

    You absolutely MUST start taking carbimazole. It's the only thing that will help you (& ask for beta blockers to get your heartbeat under control). The tablets are pretty small but if you have a goitre which is causing difficult swallowing, you & your endo need to come up with another plan.

    The carbimazole might get your condition under control & you might only be on them for 18 months or so.

    I still don't feel 100% now, but I certainly feel better than I did at diagnosis.

    Please get help, change doctors if you have to, you can't go on like this.

  • Thank you so much for your response. I have struggled as ive not really had anyone to discuss it with, everybody around me is just frightened/disinterested and standard answer is take them or i'll make you. Which obvs doesnt leave much of a discussion. I like to chew over the pro's n cons and best n worse case scenarios when i've worked myself up on an issue. Without discussion I will always resolutely stick where I am I fear unknown change. Have been so greatfull for everyone taking time out to share a few words with me. I love a personal experience story so hope people will keep educating me on these as they progress through treatment. xxx

  • Thank you SO much to everyone who took the time to read this. You've no idea how much that means. I did end up in hospital around 5am where they cldnt really do alot but blood tests, monitor and rehydrate me until the endo was available. HAD SOME AMAZING NEWS TODAY. over the last 8 weeks, I had cut out all processed foods, diet soda's (which i had lived on), salt, meat and have basically been living off fresh fruits and vegetables jucing alot, as a way to get more into me quickly. nuts, eggs skimmed milk and quorn when wanting a bit more protein added. ..and I thought it had been helping until the last week where i just didnt eat anything for a couple of days and it all went downhill from there...met with the endo in a and e, I was very good, didnt cause a fuss or get aggitated. Accepted I needed help. Reiterated the carbimazole fears which he took on board, and he said that the tests today showed I was able to now have the radio iodine therapy (which i had always felt like i could accept) until they said you had to take the tablets to get you to a the range to be viable for it. Whether its a stroke of luck or my clean living. I am now able to have it. I know its not everybodies prefered option but out of the main three it was always my preferred. Whilst a little nervous, i feel like this is major progression. Again thanks for all the comments and I will reply to everyone individually just might take a little while to catch up :) xxx

  • I think that if you have radio iodine, you won't be able to go near your dogs for a while - Don't forget to check, so you can make arrangements.

  • elaine-moore.com/

    sorry not long to post but elaine moore saved my life when I was diagnosed with Graves in 2004.

  • You got lots of good advice on here already, but just to say that I actually chew my carbimazole up and then swallow it - to me, it tastes pretty pleasant and vaguely sweet. Might help if you can't swallow a whole pill, but they are pretty disty little tablets to begin with.

  • This is first time of seeing this. Please go back to GP and keep in touch. Believe it or not we all care on this site xxxx

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