Graves Disease- Am I ever going to feel better?

Hi,

Only 6 months ago I was diagnosed with graves disease after a trip to emergency with high blood pressure, rapid heart rate (180), chest pain, nausea, weakness... Bloods confirmed high thyroid levels

02/02/13

TSH 0.03

T4 40.2

T316.6

I was monitored in emergency and given propranolol until my body calmed down. The next step was an iodine reuptake test, which along with the bloods confirmed graves.

I was put on 40mg a day of carbimazole and 160mg per day of propranolol

next bloods were on

20/02/13

TSH 0.03

T4 26.9

T3 11.6

02/03/13

TSH 0.03

T4 22.8

T3 8.6

Around this time I started to feel quite unwell, things like aches and coughs, sore throat that wouldn't go away. GP assumes white blood cells were not coping too well with the carbimazole so put me on 300mg of PTU daily, as well as an increase to 240mg propranolol to try and calm the still persistent palpitations, sweats etc..

18/03/12

TSH 0.03

T4 32.1

T3 15.3

03/04/13

TSH 0.03

T4 33.2

T3 16.3

I was at this point referred to an endo, I was given 40mg of temazepam nightly to assist with the shocking insomnia. I looked pale, dark eyes, extremely moody, still suffering from palpitations despite the propranolol. I was in a bad way physically and emotionally.

Until graves I was coming along well studying nursing, which I have had to discontinue due to the almost daily fainting, vomiting.. I'm just generally feeling like crap all the time!

Endo put me back on carbimazole after contacting pathology and my white cell count was in fact fine. I do not have the newest blood results but after resuming 40mg carbimazole, endo says no change in next bloods, after increasing to 60mg carbimazole a day, still no change.

I don't have any bulging as of yet but I'm feeling a lot of pressure behind my eyes, I had no problems with my vision before graves, now I'm dependant on glasses for driving and seeing at all in the dark. everything's getting blurry.

My skin is so dry I cant stand the feeling of anything, I cant explain it in any other way without saying It makes me feel crazy and want to rip my skin off. The feeling of my own bed makes me cringe and cry! I have to moisturise my hands and feet at least every half hour to get through the day.

I am in constant agony the last month with aches and pains in all my joints, particularly wrists and knees, a lot of back and shoulder pain etc. and have come across a lot of forums with people saying it has over time given them osteoporosis or osteopenia. Would it be worth requesting bone density scan?

I'll also put out there that I'm only 23, and a single mum to a 5 year old that I struggle to get out of bed to care for!

I guess I'm just looking for some reassurance that things will get better? I'm so frustrated and don't feel like I get any straight answers out of my GP or endo about what's to come, will it get better, will it get worse, will it be like this forever?

17 Replies

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  • I too have experienced same, gradually it will improve. the eye pain will ease, as will the joint pain and skin irritation.once T3 and T4 normal for sustained period. I now have test once a year. My eyesight had improved at last yearly eyesight test and as long as I wear sun glasses and use eye drops in the sun the eye pain is not as intense as it was, It will get better but you have to allow yourself time to, physically and mentally heal .margie

  • Hi Moconnor

    My heart goes out to you, like you I have graves and my levels where as high as yours.

    It takes time to stabilise levels all I can say is it will get better and be kind to yourself and don't be afraid to say you don't feel well. I hope you have support around you especaily as you have a little one to care for.

    I have been on carbimazole for 2 years but let me reassure

    you I feel quite normal now and a lot better. The aches and pains do go eventually hang in there and if you need to ask anything don't hesitate to contact me.

    Sending you a big hug

    Ali xx

  • Hi,

    I dont have graves so cant advise, but just wanted to say, continue reading & learning about your condition and keep notes not only of results but also how changes in medication are making you feel.

    for my itchy skin i drink water ,water and more water, and use lots of aquas cream. Try to keep positive ( I know it's not easy, specially when you cant see any improvements) .you will get lots of support and information from the people here, as i have.

    good luck on your journey.

    mary x

  • Mo, you must also decide whether to let the NHS put one drug after another in your body: that's what happens when NHS docs don't get the needed result. Bottom line is, it's your body and health at stake, and your child is counting on you. Sometimes it's good to take charge and go back to basics. Drink a LOT of GOOD water, exercise (walk in clean air) every day as much as you can, and research the side effects of what you're taking. Add yoga if you can. Clean up your diet and stick with organics as much as poss. And take holistic alternatives to drugs when you can. Try to heal and build, not mindlessly chemicalise, which creates new probs. Our bodies are living, intelligent, self-healing miracles: focus daily on those traits too, not just on symptoms. And, consult people you can fully trust. Thyroid Disease in the UK is a minefield of loyalties and politics that have nothing to do with individual patients and their health. YOU must prioritise your wellbeing over all of that, and protect it from docs who will 'try' stuff rather than study your situation properly. Time does heal too, but if you're worried that things are getting more complicated rather than improving, reassess. You've had a full-on start in life but 23 is still young: you have so much still ahead. Make this moment a foundation-building one that will keep you well for a long time. Blessings & best wishes.

  • Don't worry your not alone, I was diagnosed with Graves disease in March 2011, after being treated for anxiety and stress due to the wired up state I was in, my GP put all my symptoms together after 6 months and with the aid of a simple blood test I was diagnosed with Graves disease. After a year of changes in Carbimazole medication, Propranolol, Vit D, Citalopram, just to get through the day, Countless blood test, heart monitoring, sleepless nights and constant fidgeting, I finally found that I could not longer keep my Nursing job, as I couldn't cope with the stress. At at the time I thought it was my was my dream Job, and losing it to ill health was a real confidence blow( Nurse for 24 years), another year has since pasted, and I am feeling great, with the support of family and a wonderful GP, who arranged counselling for me, My husband and I have moved to a completely different area, I have been off my Meds, apart from Citalopram and Vit D( just to keep me sane), and Finally after nearly three years, I am starting work again, have got more energy and am starting to live life to the full, not quite with so much speed as before though xx. There have been some really dark moments in those three years, when I really began to wonder if it was all worth it, but trust me you will get through this, and it will make you stronger. Not a lot is written about Graves, but it is a horrible illness, but light is at the end of the tunnel, it may seem a bit way off now, but it is there, xxx If you ever need to chat message me, I am always here to listen xxxx

  • Hi Mo

    I forgot to say although I have been on carbimazoe for 2 years have not felt awful all that time. Your levels seem to be going up and down. Once they stabilise you will feel better.

    The suggestion of yoga and walking in the fresh air is good advice but I understand even a walk is daunting when you feel so bad.

    Hugs Ali x

  • I had Graves but have been well and off all meds for 2 years. I felt very poorly and was on block and replace therapy with PTU and thyroxine with beta blockers for the palps. I am also a single mum and it us so hard when you feel so grim. However it seems with me tge treatment worked. I am running my first 10 k next week and I can work and enjoy life as much as before I got ill. It takes time but it does get better or it did for me. Don't try and martyr on, get lots of rest and eat well. I find sugar and alcohol made me feel much worse. Im glad to say I can have both now (in moderation;-)) hang in there!! X

  • Hi

    I have been on carbimazole for 2 years and have Graves.

    I have had the same problems as you and others besides. I have 3 kids aged 9, 5 and 3.

    I also left my job as a Police Officer as I could not cope.

    Firstly I think they were wrong to swap your meds from carb ( which seemed to be be bringing your T4 and T3 down nicely) to PTU.

    I also went through a time of sore throats and colds but that passes. As does the aching joints and the palpitations and hot sweats will go when your levels come down too.

    Hopefully the carb will kick in soon but if not do read up on your options ( RAI or surgery) and do not be pushed into something you do not want. Meds do not always work and sometimes you have to do something else.

    Unlike many on here I do not believe that complimentary stuff works on it's own. It can be useful as a de stressing support and de stressing is the key to improvement but only anti thyroid meds such as carb or PTU actually seem to work in my humble opinion. Do try eating well and sleep in the day if you can. Insomnia will improve too trust me, I had it for years but now sleep well most nights.

    Endos make out that this illness is sorted in weeks when in reality it often takes months if not years to get a balance back.

    My advice is take it a day at a time, try to rest, take support where you can get it and get rid of those things in life that upset or annoy you. Try no vigorous exercise but take things easy and enjoy what you can when you can. Good luck and here is hoping you improve soon.

  • Hi Mo,

    I was diagnosed with Graves in November 2012, my numbers in the beginning were were very similar to yours,

    TSH < 0.03.(0.35 - 5.5 )

    Free T4 - 38.5.(10.0 - 19.8)

    I've been on block and replace since then. Like you I felt terribly ill at the time with symptoms just like yours I'm now on 40mcg Carbimazole along with 75/100mcg levothyroxine daily. I started on 20mcg carbimazole a day but my TSH didn't start to come up until my dose was increased to 40 mcg after the first month, then I became under-active before I started on the levo which was a bit of a pain.

    I had my B12 tested and although within the range I was low so I have been taking a large amount of sublingual B12 daily along with 1000 mg slow release Vitamin C with zinc, I use a vitamin D spray too and take CoQ10 and I. Take an A to Z multivitamin too.

    I had amitryptiline to calm down the pounding heartbeat (cant take beta blockers) but I stopped that as soon as the pounding stopped.

    I had similar pressure in my eyes, felt like I had been punched in the eyes, left eye was worst. I use additive free eye drops, I like Hyco-Bac (bought mine from an optician's shop, although I had to look around to get someone who sold them) best at the moment but anything without additives is good, I use them as often as I can throughout the day when my eyes were at their worst I even kept them under my pillow and put them in if I wakened up during the night. I also found a warm damp face flannel held over them was very good and like you I find I now have to use dark glasses more than I used to.

    Sometimes my hips felt like my legs might just fall off, especially after I had been sitting for a while, I could barely move, a very weird feeling. I used to get sore feet too so that walking on them hurt. I'm lucky that my kids are grown up and live elsewhere and I am retired and so can rest if I need to which with a little one can't be easy for you. I also accepted that I was quite ill and would go to bed as early as I could and get in as much rest as possible which I think helped but as you know it isn't easy when you are on your own with a child.

    I kept going to my gym although I totally eased up on the effort I put in, I kept up my Pilates too, my body especially my hips felt weird but I did what I could at my pace, I now feel fit enough for walking and leisure cycling.

    Like the others who have replied have said, there really is light at the end of the tunnel, even if it doesn't feel like it right now, Graves is a really horrible disease, but you will get there in the end so hang on in there.

    (((Hugs))) Liz :-)

  • PS - my first ever question on here way back in March was

    'I know its early days, but will I ever feel normal again?'

    It's hard to believe but you will feel better once they get your thyroid meds sorted out.

    Liz x

  • What a twist to take you off the carb :-( what you were experiencing was perfectly normal and the treatment was working well. Until your T3 comes down the old bones will ache a bit, try asking for adcal or similar from your endo to keep your bones healthy. Cod liver oil and glucosamine in high dose (buy from Tesco etc) will make joints easier in a couple of weeks. Hang in there it DOES get better x

  • Please dont give up hope.I am 2 years down the line and had all those symptoms.Except the eyes.Mine were bad anyway.I am now off carbimazole and feel really good.Have been off it now for nearly 2 years and although am 2 stone heavier than i was before Graves i now have my life back.There is life after Graves.And long may it last.xxx

  • Yes, there is life after Graves. It is not the same, just different.

    I now have to listen to my body and when I feel incredibly weary (quite often), then I have a rest and a lay down. This is easier for me as I am retired but I know I would struggle to work and bring up a young family but I wanted to offer support and hope to you as other hyperactive sufferers have done.

    The majority of messages are from hypoactive thyroid sufferers, we all have a tough time but this site is amazing and so helpful for everyone because we have all struggled and wondered if life will ever get better.

    Well it will, but you have to be very, very patient and kind to yourself along the way. It takes years and there is no quick way to improve your thyroid gland.

    Sending big hugs for you today. xx

  • A thyroid running fast…means everything is running fast…digestion as well as the whole body.

    Worth testing for adrenals and anything else you can….B12, calcium….

    Complementary therapies will help your symptoms whilst treating the thyroid….they are definitely worth investigating….diet…supplements and relaxation techniques/help with massage etc.

    You will get better and working closely with somebody who you trust and being closely monitored in the early stages is very important.

    Read and research as much as you can….resting and trying not to get too worried. Ask for help from family and friends whenever you are feeling overwhelmed.

    The faster you bring into line the thyroid…the easier it will be to maintain the problem whilst you look at your options.

    All the best.

    Dr Eric – graves – natural help

    naturalendocrinesolutions.com

    Elaine Moores

    elaine-moores.com

    L-carnitine

    lef.org/magazine/mag2007/de...

  • Wow .what a response.my girl was 19 and dancer when she was diagnosed with graves.like all of you life has not been easy but she is off medication has a full time job. She now dances for pleasure and is a backing dancerfor a Micheal Jackson tribute show.she gets tired and still has bad days but she is doing life as you will. Take the advice here from those who no.

    been hard and sad but she is off medication now and although still not quite the way

  • Hi, I was diagnosed with Graves' disease in February 2013. I had no tosh detectable t3 t4 abnormal low vit d liver function test abnormal two ugly bulging eyes with readiness aroun both looking like peri-orbital cellulitis , very painful too plus loss of vision. Tachycardia I have had for years but could not prove thyroid problems. Had blood test every year all normal then wam rapid onset of eye problems which alerted doctor . Legs ached foggy brain forgetful insomnia only sleeping 2 - 3 hours per day every tired. Always feeling extremely hot never able too cool down sitting with aircon on 18 degrees c and fan on directly on me was the only way I felt less stressed. Also had gut problems severe bloating and a do pain. Found out I was gluten intolerant. Eye specialist ordered 50mgs prednisone daily for eyes as they were so swollen and painful plus endo trying to stabilise me on neomercazole going up and down from high to lower doses back to high etc. Finally both end and eye specialist strongly recommended thyroidectomy as I might lose eyesight and to brittle hyperthyroid unable to stabilise. In August I finally agreed to a thyroidectomy because my eye pressures were climbing . Within 2weeks I had my surgery , great surgeon no problems can hardly see scar. That part went well rest well it has taken almost 18mths to bring my thyroid level within normal range. I have still aching legs, eyes swelling the right side more so than the left but not as severe as it was, bloating on an off the cause is some foods intolerance, which along with gluten other foods which I have eliminated one by one. I had to put my self on protein drinks with multi vit and eat one food at a time for three days no problem then on with next food. It's a long process to do to get enough food to live on. Oh I forgot to say my weight blew right out too shocked to say how much but well over 10kgs, I suppose the 6months of high prednisone prio to thyroidectomy had some hand in it but have not lost much since op. I still have insomnia , ado pains and bloating muscle aches legs arms and back. I am disappointed thinking I would be better after the op, but on doing lots of research in a quest to improve I found data that once a Graves always a Graves' disease . Graves' disease is auto immune and even if you remove the thyroid and antibodies can not attack it there is a percentage of people who will get other auto immune diseases. My medication so far consist of Thyroxine 150mcg, magnesium 2grams, calcium 2grams, vit d 3,000iu . Magnesium seem to help ease the muscles aches to a degree. Stopping magnesium the legs arms and back bring plenty of tears and irritability. Lately I read an article on flax seeds and iodine helps with some of thyroid muscular problems. I up for a trial. Local GP suggested evening primrose for problems with sensation of heat but after 300capsules taken no change to body heat, I stopped that but it was worth a try. In August it will be two years post op I am striving to feel better and will not let this beat me just disappointed that I was in the few percentage that has ongoing problems. This is a very long reply but letting those that are like me YOU ARE NOT ALONE. If there are any suggestions of other treatment I am all ears.

  • Sorry some spelling errors too many to correct ist tosh none detectable. The rest you will eye correct for me.

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