A question for Graves' or otherwise hyper people

{sound of voice echoing in a well......"Hello-oo-oo..... Hello-oo-oo..." }

I know that there aren't many of us hypers about, but I am hoping one or two will see this before it drops off the home page into oblivion.

Question: What was the symptom that drove you to the doctor thinking "something's not right?"

Explained weight loss? Anxiety? Sleeplessness? Tremor? Diarrhea? Goiter? Heat intolerance? Menstrual problems?

Answers, please! (And thank you.)

23 Replies

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  • My friend went on at me for about a year and a half to go to the docs because my eyes were bulging and she could see I wasn't right but I didn't listen.

    It's upsetting looking back as even though I wasn't able to sleep more than a couple of hours a night, I couldn't concentrate at all, I talked at 100 miles an hour, couldn't stop shaking, behaved really erratically, got easily annoyed with people, messed up quite a few friendships, and my career, I still didn't see there was anything wrong with my health.

    It got to a point when I was so all over the place that I had friends sending me info on bi-polar, I just thought I had loads of energy and wanted to be out all the time, and even though I kind of knew I was on edge, I still didn't see I was ill.

    It is crazy looking back at it all now - I remember begging my friend to open the door because it was so hot but her saying it was freezing and me thinking there was something wrong with her!

    I know that doesn't really answer your question but there were so many symptoms and i was so wired that I don't know how I ended up at the docs - I do remember going there and saying my friend thinks I have a thyroid problem thinking the doc wold laugh and say there was nothing wrong... nasty illness!

  • Thanks for that - very interesting. I think I have been very lucky to have virtually no symptoms (except cardio one - not nice). Still hoping for the dramatic, effortless weight loss...

  • That's good you haven't been suffering from lots of symptoms. Not everyone loses weight, I didn't, but i didn't put any on when I should have with the amount i was eating!

  • Well blow me down - just posted and then read your description. Denial must be a symptom then. I truly was convinced I was sane and everyone else was crackers. It wouldn't have taken much more for me to run wild and kill someone - this is a horrible memory of that time.

  • Yep, looking back is really upsetting – how much it messed with my brain and my personality and how unaware I was - I like to think I know myself better than that – what’s that saying… a mad person doesn’t know they are mad?

    Reading what you wrote reminded me of a lot of things I’d forgotten about – you describe it really well.

  • Hmmm - where to start! You did ask......

    Eyes - bulging, starey, streaming, red and sore like I'd wiped them with sandpaper. Couldn't focus but eye sight test normal vision. Night vision was worst but bright flashing lights caused migraines.

    Resting pulse of 140

    Trembling all over - my head shook like one of those nodding dogs. I wondered if I had Parkinson's.

    Dreadful insomnia - exhausted but couldn't sleep for longer than 30 minutes.

    Ravenous - day and night. During my night time escapades I used to eat tins of baked beans cold straight from the tin. Craved cheese but also had a salt intolerance - all savoury food tasted horribly salty. Massive weight loss.

    Paranoid - and complete denial. I refused to believe I was ill. I truly thought my behaviour was normal. People told me afterwards they thought I was riddled with cancer or had lost my marbles and didn't dare mention how dreadful and emaciated I looked. My 'friends' would cross the road rather than talk to me.

    Freezing cold - yes that's right I could not get warm and wrapped up in thick jumpers in the height of summer!

    Insatiable thirst

    Alchohol - intolerance. A few sips of wine and I was as drunk as a skunk within minutes so became T total.

    Slightest noise made me jump out of my skin. Thought I was going to die when the telephone rang.

    Driving - became a nervous wreck and couldn't judge speed, distance or position on the road.

    Scant and light periods - the one blessing!

    Goitre and Choking fits - food got stuck and one time I almost suffocated on holiday flight peanuts - the air hostess saved me once she realised I wasnt having a panic attack.

    Heightened sensitivity to pain.

    I know it's almost impossible to believe this but despite all these symptoms, my idiot GP still didn't diagnose me. Instead, after questioning me about my drinking and eating habits (almost accused me of alcoholism and bulimia and refused to believe I couldnt touch a drop of the hard stuff and never forced myself to vomit) he prescribed anti depressants and anti anxiety medication.

    After that, my pulse was too fast to count and constant diarrhoea. The GP told me I couldn't have diarrhoea because the medication side effects were constipation. I was so exhausted and anxious I couldn't argue or defend or explain myself.

    Stopped the tablets - had a couple more weeks of denial and decided to pay for a private health check - the nurse taking my obs took one look at me and almost begged me to go straight to the GP and tell him I had hyperthyroidism. Got carted off with thyroid storm.

    My lazy incompetent doctors excuse - he didn't diagnose me because I kept coming to him with thick jumpers on!!

    After that and on treatment - I could add double vision, excruciating slow and long lasting cramps and itching and scratching till my skin bled, too weak to walk and hallucinations to the list of symptoms.

    After a year of failed treatment, they gave me RAI and the follow up treatment was so bad I ended up with hypothermia and myxoda coma. Oh - I've just remembered - I had a strong urge to murder someone. It was strongest during my hospital appointments. Fortunately because I was being treated by them and not my GP, he lived long enough to continue serving the community - otherwise I'd have been done for killing him.

    I know this is hard to believe but it's not exaggerated and is an accurate account.

    Still - I'm grateful I lived to tell the tale. I don't like doctors very much though!!!!

  • I know this is hard to believe but it's not exaggerated and is an accurate account.

    Knowing what I've been through, which is not nearly as extreme as your story, I have absolutely no difficulty whatsoever in believing you. Your cold intolerance with hyper is similar to my weight loss with hypo, both shining example of GPs using stereotype symptoms as excuses for failing to diagnose or even test for thyroid disorder.

  • Hi

    Can I suggest another approach..!?

    Do a search for Graves/Hyper and pick out those who have responded, you could then send them a private message. :-)

    Just a thought...! :D

    Louise

    xx

  • I was hoping for a group experience; you know where people could learn from one anther another & shares experiences without the boundaries of private messaging (silly me)

  • Hi eifwol, yup all of the above symptoms, also ignored them rationalised that I was working a twelve hour day of course I would lose weight and be exhausted. Paranoia set in about 8 months ago but my paranoia was driving over bridges...something I have done for years, but it got so bad that I would drive miles out of my way to avoid driving over a bridge especially big ones and when I forgot and it could not be avoided it was awful, also my irritability became so acute that I was irritable with my handbag a lot of the time!!!!,

    .....my swelling legs was what got me to the doctors, they were swelling as I looked at them, I thought they would burst. But my story differs here on in from most on here, it is just awful the stories that people tell on here about the indifference of doctors and the ignorance, in this day and age they should be ashamed of them selves. My GP was on the case second one, My shakes my eyes, my huge weight loss, my anxiety, she sent me for a blood text that day and the the same evening the results came back, she consulted with an Endo and got me on carbimazole that day, My appt with the Endo was 8 weeks later and I have just started block and etc......so my story is just beginning. But this site has be fabulous for meeting others seeing what goes on with this disease. It is supposed that in the early eighteenth century that many women in mental asylums were actually suffering from Graves , and called evil eyed ones, because of the bulging eyes...Anne Bolyn is thought to have Graves if you read her description, I have of course done masses of research on this disease......we are not alone but it is only relatively recently that treatment has been around and it is rarely if ever talked about or used as an illness in anyway on TV etc. I wish you all well in treatment and GP's and Endo's I really do because it seems to me that the good ones are few and far between. K

  • Had all the classic graves symptoms but like most people didn't see them as related to each other so had no idea. Also have TED & that's what finally got me to the doctors cos I woke up one day with my eyes so swollen I couldn't open them - hospital thought it was an allergic reaction to something!!!!

  • I didnt have that many what drove me to the doctors was total exhaustion and weight gain.

    The GP wasn't very helpful but I asked for a blood test and got it and hey ho I was Hyperthyroid. I have seen two different Endos one said I had Hashi's the next said I had Graves. She did tell me all my symptoms had nothing to do with my thyroid and I needed to get on with life and stop thinking it was my thyroid.

    I now take everything they say with a pinch of salt and am probably what they class as a difficult patient but I don't care this is my body and I won't be bullied into having any treatment that I don't want.

  • I was diagnosed 40 years ago by a doctor I had only seen twice in as many weeks because of a blister-like rash on the palms of my hands and soles of my feet. It was called pompholix and cleared in 3 days with cortisone cream. When I went back a week later the lovely doctor aked a few more questions, namely about weight, heat, cold etc. He then said he thought it could be Graves and did blood tests proving it to be so. I had also lost 1 stone in 3 weeks, so I think this clinched it for him. The only time I have been warm with this terrible illness is since the sub-total thyroidectomy and before I was treated, when my temperature was always cold except on exertion, when it was uncomfortably warm. Am only marginally better since treatment began in 1997, but am now 4 stone heavier. They certainly don't make doctors like him nowadays.

  • I went at the last possible minute to the docters and only when my husband forced me too.I thought i was going insane as i was totally neurotic had a terrible tremor in my hands and couldnt even hold a pen.My eyes hurt and i had a heart rate of 144 bpm resting.I also lost a lot of wieght and had diarreah.Was diagnosed with Hyperthyroid and Graves....Also i was extremely itchy on my arms and shins!...Am now in remission after stopping block and replace treatment 16 months ago..Dare i say i feel really well now.

  • I had palpitations and felt paranoid at work. Then mild depression, insomnia, hot sweats, exhaustion, tremors, rage, bad memory, itchiness, diarrheah, weight gain and oily skin,

    Now thinning hair, bloating, joint pain. On carbimazole since May 2011. I feel better than I did but have sore eyes, premature ageing, still tired but sleep a bit better. Still get angry at period time and have shocking periods. Took about 5 years to diagnose.

  • I had been feeling unwell for quite a few years before being diagnosed hyper last November The symptom that drove me finally to the GP was breathlessness and burning chest pain on exercise. I thought I was menopausal and blamed the other symptoms on that!

  • I had all the above symptoms and bulging eyes. My mam insisted. Went to docs althoight felt ill l said l was well ! Thyroid removed after 3 years off anti thyroid meds x

  • I had very strong anxieties, insomnia, muscle weakness/stiffness, hypoglycemia, lose of weight. Then, I started not to see properly with my right eye. I saw a dozen doctors in 2 years and a half, including an endocrinologist, both NHS and private, both in France and the UK and they all told me to see a shrink as my heart rate was not elevated enough to qualify for hyperthyroidism - my resting heart rate was around 85-90. None of them did a blood test. Specsaver ruled by eye problem as a "lazy eye". I went through hell for almost 3 years when in July of last year, my heart rate started to increase at 100 - resting rate. I ORDERED my GP to do a blood test, T4 at 34, THS suppressed. My actual resting heat rate is around 60 - I do a lot of sports. basically, it was too high at 85-90 but nobody listened.

  • The one symptom that drove me to the GP was the ridiculous allergy symptoms I was getting. She asked me to list what i thought I was allergic too and then said, 'hmmm that's not an allergy that's an autoimmune disease' and blow me if she wan't right. Apart from that the worst thing was the overheating. I would walk from one room to another and get hot flushes. i thought I was becoming menopausal early. I had to have the shower virtually on freezing or I'd emerge like a freshly boiled lobster and remain puce for the rest of the day. Nice.

  • With me Id started a new job after being a stay at home mum for a while so put my weight loss down to being more active but suddenly I had an "attack". I woke in the night unable to breathe properly my heart was racing so I took an antacid and tried to go back to sleep. I got up and went to work the next morning feeling very unwell but not being able to pinpoint it, once at work I begun to feel lightheaded and decided to go home sick. Eventually about 5 hours after calling the Drs I got a call back and they told me to go to A+E. Lots of test later and a 3 day stay in hospital on nil by mouth I had a scan which showed an enlarged spleen so was tested for Leukemia which was not what I had - Promptly discharged by Hospital. Unhappy with this I used my private healthcare and found the most wonderful Dr who diagnosed Graves, finally! This journey took 5 months, but looking back I had weight loss, shakes, excessive bowel actions and loads of headaches but being a busy working Mum I didnt register the importance of all these symptoms. I now have Thyroid Eye Disease but its like wading through mud to get seen by anyone Im on carbimazole 20mg and several eye drops a day have recently stopped anti-depressant and beta blocker because Im trying to get back on my feet to get back into work. The worst thing about this is the way it affects the brain (ie losing things forgetting things) and they changes to how you look (weight loss and bulging eyes all of which result in no confidence and a feeling of being socially inept.

  • hello there, for me i was putting makeup on one day and i noticed for the first time one of my eyes looked bigger than the other one, i asked my friend whom i saw every day and she said oh yes but would not have noticed had i not pointed it out, eventually after eye tests etc i was diagnosed with overactive thyroid/graves. xx

  • Hi, I'm Graves too......The doctors were so dumb they kept treeating me for an allergy. I had all the antihistamines imaginable and to no avail. The eye unit were better as they eventually asked me if I was sure my eye swelling wasn't my thyroid and I should see my GP again. The GP's weren't listening to my symptoms but then eventually after months of suffering they gave me the appropriate blood tests and referred me to an unhelpful Endo. He just wasn't me to have the surgery (cheapest long term option for nhs). I would then have Hypothyroidism eventually and feel just as ill and need lifelong meds. I wanted to research this and went back to him and asked if there were any other options as I wasn't happy. He then offered me RAI - again wanted to think and research and wasn't too happy with this option either and so eventually he put me on carbimazole and his registrar said I could stay on this long term. Apparently they try to bulldoze you into having sometimes unecessary treatments and so research is a must and you have to weigh up the options and be happy with your decision. I have spoken to another Graves sufferer who had her thyroid removed and has felt worse ever since but I have also heard some success stories. A young man I know personally had a total thyroidectomy when he was young and it is now re-growing. I hope you make the best choice for you x

  • Severe headaches... went on for months and increased in frequency and intensity. The GP noticed my high heart rate (144) and sent me to the A&E, where they were useless and didn't do the right tests. The next day I crashed with all the classic symptoms: excessive sweating, nausea, severe tremor, photophobia, muscle weakness, calf pain, diarrhea, shortness of breath, weight loss, insomnia. Blood test showed FT4 > 100!! Needless to say I was a total wreck. But until a couple of days before that I was functioning normally. It was only later that I put all the pieces together: for months I'd been forgetful, my period was almost absent, I'd been very irritable.

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