Very very over active thyroid

Hi ther, i hav just been prescribed 160mg of propranolol and 40mg of carbimazole apparently my thyroid is off the scale! I feel terrible have done for months now, my eyes are swollen like a frog! When will I start to feel remotely like myself ? Oh does anyone's legs suffer with this too, mines ache and wen I bend down I can't get back up wth out help? Totally miserable

50 Replies

  • Hi, sorry this is so brief but I hardly have any battery left on my device, Ihave overactive thyroid too.I felt just the same as you , yes achey legs are all part of the condition. I started to feel better a couple of weeks into treatment with carbimazole but may take bit longer as your levels so high.The proproponal will help with palpations and shakes if your having those.Are you seeingban endocrinologist? Get a print out of yourvtest results and post them on hete.Have you got Graves disease?

    Battery nearly gone so main thing to say yes you will start to feel better .Sorry you feel so miserably I was the same but gradually things get better, Hang in there , sending you a hug x

  • Hi Kim thank u so much for ur reply, what is Graves' disease ? Been referred to thyroid docs for urgent appointment, so not seen them yet? Been gettin told I had a viral infection and it'll go away in time, then lost so much weight and really I'll they tested me for cancer!! Then I happened to just ask them to test my thyroid and this hAs come back, took into hospital this week as ther was calcium in my blood (I googled it and it sed thyroid cance) next morn docs in hospital sed , we think it's just all the activity in ur thyroid is causing calcium to show up?? Sent home with this dose of meds and don't feel one bit better,oh I havnt been sick again, was being sick constantly, it's 3am nearly and I'm still wide awake lol if I just lie in bed and don't move I am fine, wen I even get up to go to loo, iv got to get back into my bed! I'll ask about the eye doctors, my eyes are killing me and look like they'r closed with all the swelling and pressure! God shoot me now!!! Feel just terrible xx

    Thank u for ur reply Kim xx

    Glynis x

  • Hi again, Well I am no expert but there are some very knowledgeable members on this site they will explain all the technical stuff but basically Graves disease is the main cause of hyperthyroidism (overactive thyroid). A blood test will show if you have certain antibodies which will confirm if you have Graves or not. Graves antibodies can attack the eyes so from what you have said about your eyes I would say it sounds like Graves disease.

    I dont know anything about calcium in the blood but somebody will know and explain.

    I wasnt sick or feeling sick so unsure about that bit!

    Not being able to sleep is a symptom of hyperactive thyroid.

    However you sound really bad if you are having to be in bed all the time so i would contact a doctor again.It seems unbelievable that you lost all that weight and your doctor didnt think tontest your thyroid and you had to suggest it.Is there a different GP at your surgery you could see? It also sounds like nothing much has been explained to you.I would chase up your Endo appointment and hopefully it will all be explained to you.

    The carbimazole will stop your thyroid making as much thyroid hormone.If Radio acive Iodine is suggested come back on hare for more advice as it can bring its own problems and make your eyes worseSorry if this is a bit jumbled but I have just woken up!

    Remember to always ask for a print out of your results so members on here can comment on them.

    I hope you get a good Endo as they seem to vary so much. Ask about anything nyou dont understand on here.

    Hope that helps a little bit and you soon start to feel better it sounds like you have really been through it! Take care get plenty of rest even if you cant sleep. Maybe google Graves disease and learn as much as you can before your hospital appointment. Good luck. Kim x

  • Just remembered make sure you are sent to a specialist in Thyroid Eye Disease too. X

  • I remember the days of being like that my over active thyroid went undiagnosed for.nearly 10years it was only when I had a goitre develop that it was eventually diagnosed. Turned out I had graves disease. My levels like yours were extremely high. I had a newly qualified gp who thought she could treat me herself and.was getting nowhere after months of 2 hours sleep and losing loads of weight my mum spoke to another gp who referred me to an endo. They eventually gave my a.thyroidectomy and now have to take levo. My frog eyes and sight went back to normal, I started wearing glasses during this.time but I no longer need to. My case is probably the extreme but I would keep on at your gp and make sure they have referred you to an endo it's horrible feeling the way you are. I am now 18 years on from my diagnosis and I can honestly say that other than one big hiccup last year when I needed more surgery I have got in and lived an almost 'normal' life.

    Make sure you see an endo. Good luck x

  • Just remembered something I read on here before.Next to your thyroid gland you have parathyroid glands and problems with this can cause too much calcium to show up in your blood so this could be whats causing that, I remember the person being told is was very treatable . X

  • When I was diagnosed 9 years ago with massively overactive thyroid, there was an NHS directive that said overactive patients needed to be seen within two weeks at the endocrinology department of a hospital. What has happened to that sensible rule? My GP talked to them first for advice on treatment and I then saw an endo ten days later.

    In my experience you will soon begin to feel better but if not, you should keep hassling your GP. In any event, insist on seeing an endo as soon as possible, plus an eye consultant. Do you have someone who can fight your case for you? I know I felt so weak, I could hardly pick up the phone.

    By the way, you might also ask your GP to check your iron and ferritin levels and other important vitamins and minerals like B12, folate, and Vit D. I became anaemic quickly but thought symptoms were all part of the illness. I believe being overactive uses up large amounts of these. It is easy to supplement. Good luck and I hope you will soon notice an improvement in symptoms.

  • Two weeks! I was three months and from what I've seen on here that seems to be just about par for the course. I was started on carb straight away though which was all that would have happened if I had gone to the hospital so looking at it that way I was probably treated faster than the two weeks - if that makes sense :-)

  • just what I was thinking two weeks!! my urgent appointment with the Endocrinologists has taken 3 months I am still 6 weeks from it now. I have been put on Carbimazole but the GP that discovered my thyroid condition was only on a 6 month placement . she halved my medication after only 3 weeks then left the practice. Continuity at my GP is not good

  • Might be better that she halved it if you were on a big dose. I started in 20mcg then after my first blood test had it doubled by the hospital to 40 for two months by which time my TSH.had gone from <0.03 to 7. Think I should have had another blood test after I went on to 40mcg. If you. Are on 40 like I was it might be worth getting another blood test, going under wasn't fun. Just as horrible as being hyper but in a different way. I don't know how awful you are feeling but believe me you do get better, my first email to HU was to ask if I would ever feel better. Took a while but I did :-).

  • surely its not taken that long for doctors to diagnose whats wrong ?

    My husband was bad enough long before his symptoms got to your state

    It will take several weeks for levels to come down and for you to start feeling better but you MUST insist on a referral to a Thyroid Eye Disease specialist even if it means Moorfields Hospital in London because your eyes must be properly monitored and checked

    meanwhile try to take life quiet and easy because stress and overdoing things wont help

  • Hi there

    I also had Graves disease, Hashimotos disease (the two together are called Hashitoxicosis) and thyroid cancer and thyroid eye disease. Like another poster I was misdiagnosed for more than ten years and nobody really took me seriously until I was constantly shaking and my eyes were popping out of my head.

    Get a copy of your blood results and post them here - how high is high? Doctors like saying things like 'very, very' but I've learned the hard way to check for myself. I was on exactly the same doses as you for quite a long time and if ONLY I'd known then what I know now!! You need to be blood tested every two weeks as your levels will be falling fast now and its very very easy for them to overshoot. Graves disease patients, according to endocrinology guidelines, should be titrated by the FT3 result and never just the T4 or the TSH. Burn those words into your brain! You will need to know that. Personally I think block and replace is the best bet for Graves patients - which is when they shut you down with the drug you are on, and then get you on thyroid hormones to start you up again. If you get stable on that regime there is no need why you can't stay on it for a long time.

    You need to have ALL your antibodies tested - so TRAB (diagnostic for Graves) (it's complicated but also in TRAB camp are TSI and TBI) and then TPO and TgAb - this will tell you what you have got, whether its Graves on its own, Graves and Hashis together, and a very high TgAb (usually only high in Hashis patients) is also, along with other signs and symptoms, a possible indicator of thyroid cancer.

    Don't let them frighten you into talk of 'possible' cancer, thyroid cancer is usually very slow growing and there is no need to panic until you are sure. Many a patient was rushed into treatment only to find on histology there was no cancer, but too late, they'd lost their thyroid. If you've got it, it will have been there for years, and a few more weeks won't make much odds whilst you insist they make sure it is definitely cancer and you educate yourself.

    My advice to you at this stage is DO NOT make any irreversible decision about treatment until you are properly under control and feeling calm and centred. Graves disease speeds everything up including your thoughts and emotions and you are very vulnerable right now to making rash decisions and grabbing at solutions as you feel so unwell and everything is on 'fast forward'. KNOW that that anxiety and hurry and manic-ness is part of your illness and you are vulnerable to making choices now you will regret later. Endocrinologists are fond of rushing patients into permanent solutions and provided your levels are with safe ranges then there is no hurry at all!!

    They are also obsessed with 'remission' and frankly, if you are safe, doing well on block and replace or very low dose PTU, stable, happy and doing OK then quite why they feel the need to keep taking people off their meds, getting into a relapse and frightening them into surgery is beyond me.

    You are the captain of your ship, not your doctor, he or she works FOR you and I really, really, really strongly recommend you get your head entirely around what is happening to you so you can give your informed consent to whatever is ahead.

    As you have eye disease you need to be under the care of a specialist TED team at an eye hospital such as Moorfields. My doctor there (when finally I found an endo who wasnt an idiot and I got a referral) was extremely good but I had permanent damage to my eye muscles after the TED had died down and I have had to have corrective surgery. That was very hard as your eyes are the window of the soul and all that jazz, and my appearance was radically changed. I'm OK now but it's been a long road.

    Because you have eye disease you CANNOT have radioactive iodine and the worst thing for your eyes is for your levels to fall too far (hypO) which is why you need to be insisting on regular blood tests and you need to understand your illness. My experience is they won't monitor you regularly enough and you'll need to insist.

    I don't want to scare you but I had a thyroidectomy (my thyroid was in such a state as I'd been midiagnosed for so long and I had cancer, there was no other choice) and it's ruined my life. I'm on my way to health now but that is NO THANKS to medicine. I had a very good doctor but he left the NHS in disgust and is now emigrating. Even he couldn't give me the right kind of hormones (natural hormones) as he was not allowed to as the guidelines around thyroid care are so ridiculous.

    If you are near London I'd suggest you ask for a referral to a major teaching hospital and not your local regional centre. And as soon as you feel calm, read, read, read, read - you need to be the expert patient, you MUST understand it, don't just trust them with 'you just take a little pill and it's all fine' and that is not true, this disease is really, really serious and recovery is no picnic and not for the faint of heart.

    I was told that it takes around 3 to 5 years from diagnosis to start feeling like you are back to any kind of health. I'm five years in now, three years post surgery, and I'd say that's about right.

    Oh and caclium - your body is going too fast and pulling it out of your bones, can cause aches and pins and needles. Also everything is going too fast, your digestion, metabolism, the rate your hair grows, everything! As your digestion is going too fast you will not be absorbing nutrients properly and also your speeded up metabolism will be using up nutrients too fast, so you really do need to get on top of iron, B12, D3 etc etc but a good doctor will be testing all of this for you. If they are not, they are not a good doctor and need to be fired and you need to move on. That applies to all of this, if you do not have faith in your doctor, and if your doctor is not willing to be your partner, then 'Next!'. :-)

    It's a lot to take in and it's a horrible illness, so please do take very good care of yourself,



  • Excellent explanation and advice Rebecca! I was hoping you would see this post and fill in all the gaps, I have learnt more from you about Graves disease than from any GP or Endocrinologist .Thankyou .kim x

  • Hey Kim

    Haha you are welcome, I'm not sure I know all that much, which says a great deal about the state of endocrinology! There are some good docs out there, I have a good one now but mostly it's a lottery. Actually I was on another forum when I first got sick and a wonderful woman called Tess took me under her wing, she really did save me. We are still good friends now. So she should take the credit, she taught me all I know!



  • Hi Bec, I noticed you mentioned you think block and replace is the better option than carb only. Could you explain why you think that as many on here think carb only is preferable? I am 3 weeks weeks off B n R and am considering my options if I relapse between B nR and carbimazole only.Thankyou ., kim x

  • Hi

    I was never offered B&R except in the couple of weeks prior to surgery as I was so very, very hypO but from what I've read, it's easier to manage (with some modifications to the protocol) as you don't have to keep fiddling about trying to get the dose of CBZ right, you shut the thyroid down and then replace the hormones. There's some info here: and here:

    My personal view is doctors are too concerned with remission when I don't see why, if a patient is doing well on the treatment, they have to rock the boat and risk a relapse. What usually happens is the patients is told, see it's uncontrollable you have to have RAI or TT when studies are now showing that on quarter of patients who do that never recover their health ...My endo surgeon told me that too, he's also about to publish a review of the literature on people who have lost their thyroid. I think it's far better to hang on if you are doing OK, liver enzymes OK etc and keep your thyroid.

    I was reading in the telegraph a couple of weeks ago that there is hope of a cure for Graves not far away If I could have kept my thyroid I would have, life without one is really, really tough.



  • Thanks Bec, I will fight to keep my thyroid and no RAI.thanks for info and links x

  • I'd be interested in reading your endo surgeon's review if you are able to post a link to it please, Rebecca.

    BTW impressive slapping down of that idiot IP yesterday :-D

  • Hey

    I keep googling but don't think it's published yet, but yes will of course share it when I've found it.

    And thanks, yes he was an idiot wasn't he! Cheeky devil. You can always spot them, they get very hot under the collar at the word 'feminism' and then it gets very personal very quickly - I think I dealt with this misogynistic drivel OK! :-)



  • I too have just been diagnosed with an overactive thyroid. Mine was caused by medication I was taking for my heart arythmia. I'm on 40mg of Carbazole and has a scan, which showed my Thyroid was enlarged. Been on the meds just short of two weeks, but don't feel any better yet. I too get achey legs, infact I ache all over, but I am trying to continue with my exercise regime, all be it very, very limited. I've been quite low of late too, but I'm not sure if that is me feeling sorry for myself. No clothes fit me as I've lost 20 pounds, I used to be quite athletic, but I'm now like a stick.

  • Know what you mean about aches - I used to feel like I had been driven over by a truck.

    Don't know whether it is good or bad news but you will probably put your 20 pounds back on. My thigh muscles had shrivelled away to nothing - actually my upper arms did too and once the treatment kicked in my thighs and arms are now back to their pre-diagnosis chunkiness and I'm pretty much the weight I was before it all kicked off.

    It's good to be healthy again but it's kind of a shame about all the size 10 clothes I bought that don't fit any more. :-)

  • Thank you so much for your reply. I've lost size from my arms, shoulders, thighs and calf's. I'm (Was) quite a well built guy, through weights and exercise and losing the weight I have has been a bitter pill to swallow. Hopefully when the meds kick in I will be able to put a little size back on. Is there a chance with carbimazole that I may go Underactive?

  • I did at one point right back at the beginning - I started on 20mcg and after a month nothing much had happened so I got a letter from my endo telling me to double the dose which was fine but I had another two months until my appointment and I spent two months on 40mcg which was obviously too long.

    It meant my TSH jumped from <0.03 to 7 (0.35-5.5) and my T4 from 38.5 to 10.2 (10-19.8) so it was an enormous jump and I'm sure if I had been tested sooner that wouldn't have happened, so I would try and get tested more regularly than I was.

    I kept going to my gym throughout because the people who went when i was there were nice and I liked the company. I found I had to 'turn everything down' because I had no strength but I kept going because going to the gym kept me feeling human. I also kept up my Pilates class, my Pilates teacher is a physiotherapist so she really understood what I was going through, again I just did what I could and I'm not someone who really pushes myself so I was just ticking over. I always cycled and that was never a problem and I took up Nordic walking and that wasn't a problem either.

    It probably took the best part of a year for my arms and legs to fill out. My thighs were so thin and weak I wasn't able to get up off the ground if I was photographing something like fungi that was at ground level. For a while I thought I had just put too much in my backpack then I realised! My arms have filled out nicely too, considering that for a while the flesh just kind of hung there.

    I didn't do anything special to get my muscles back to normal - it just kind of happened gradually. So by the time your treatment is over hopefully your body will be pretty much how it used to be.

    Graves is very complicated and you are actually quite ill with it. I know I was incredibly tired for quite a while so I did as little as possible and got masses of rest. Basically I treated myself like an invalid and was kind to myself. Good luck :-)

  • Should have said, perhaps your heart problem was caused by your overactive thyroid. My heart was dreadful - one of my main symptoms. It was jumping about all over the place. I used to get palpitations and what felt like missed heartbeats. My husband could feel them just by putting his head on my chest, a doctor even felt it when she was taking my pulse, yet ECGs showed nothing.

    By the time I was diagnosed I felt like my heart was bouncing out if my chest, I actually felt it in my stomach - I even wondered if I had an aneurism or was having a heart attack.

    Once my thyroid started to get sorted out my heart beats calmed down. At the beginning of my treatment - I was in block and replace which is a large dise of Carbimazole to block thyroid production and then levothyroxine to replace it at a more normal level - as my body got used to the amount if thyroxine I was taking and I needed an increase in thyroxine the palpitations would start back again but after the first time that happened and I thought I was becoming hyper again someone on here told me I was probably needing my thyroxine increased and they were right. My heart has completely settled now so maybe yours will too.

  • Thank you very much for your detailed replies, I can certainly take a lot from them. I have yet to have it confirmed, but I believe the medication I was taking for my heart (Atrial Fibrillation) has damaged my Thyroid. One of the side effects is thyroid issues. What I have yet to find out is what the damage is. There may be a chance once I have been treated with Carbimazole, that my Thyroid will heal, but I won't find that out until mid October. I've had a scan and the DR did say he could see my thyroid was enlarged and there was a small nodule (2.5MM), but couldn't elaborate and suggested my ENDO would speak with me on my next appointment.

    However, I do think my AFIB attacks have increased since I have had thyroid issues, so once my thyroid is happy I think my AFIB may calm down too.

  • Hopefully it won't be too long before you are back to good health :-)

  • Is not it lithium and iodine the answer?

    The system has a balance for over activity there's part that's under active.


  • Absolutely not ...

  • It will get better but you need to remind the GP that you are around and suffering badly right now.

    You must have a referral to an Endo who understands thyroid gland and all its many complex issues.

    Rebecca has just posted an amazing detailed explanation, and Kim has given you excellent advice as well.

    I am not nearly so knowledgeable but I do have an overactive thyroid condition and I just wanted to try to encourage you and send a big hug when you are clearly feeling so ill.

    Over/Under active thyroid conditions both bring their own problems and we all have a roller-coaster experience when life is very hard and miserable until medication is sorted and life gets a little easier.

    Keep your chin up, listen to your body and be kind to yourself. Good Luck and big hugs today. xxx

  • Wish when my was diagnosed I had somebody like Rebecca to advise me. I was 12 when the symptoms started and I was repeatedly told it was just my age. When I saw the endo, it was about 6mths later they told me to stick with the meds that I was too young to have a thyroidectomy but my goitre was choking me so they eventually agreed. The endo after the surgery came and apologised as they hadn't appreciated how large the goitre was in those days they didn't scan as a rule.I say this as you know your body and stick with what you believe is right for you and hassle those docs.

    Honestly though once you are on the right track you will.start to feel better not saying it will be quick or easy but you will get there.


  • I was diagnosed with Grave's Disease at the end of last year, although my levels

    were quite a bit lower than yours are N2_m_l .

    I was advised by several people that the drugs would take approximately 3 weeks

    before I'd feel any effects, and that is what happened. Once they did though

    it felt fairly dramatic - a lot of my symptoms disappeared reasonably quickly,

    considering the very long period I believe my symptoms developed over.

    I too suggest you take a stand, just as Rebecca has suggested.

    And a hug from me too O x

  • Hi. I really can't add anything to the already super advice you have been given. I was misdiagnosed and became so overactive that my body went into starvation mode under six stone in weight and with severe muscle loss. I was so weak I could hardly stand or even lift my arms. Thyroid eye disease too which was ignored and in their ignorance made worse with radio active iodine treatment which should never be given when the eye disease is active.

    The good news is that I recovered and led a perfectly normal and healthy life but It took a long time to recover and repair the damage caused mainly by their neglect. I'm not trying to frighten you - just strengthen what others have said. It will be necessary for you to learn all you can so you can support your own journey back to wellness. Sites like this are a god send. I wish it had been available when I was diagnosed. Good luck and take strength from the support on here :-)

  • Hi, sorry to hear about your pain. I have underactive thyroid and Hashimoto but my sister had overactive. The same symptoms as yours, already referred for radiotherapy to destroy her thyroid. But with a help of homeopath doctor she turned her overactive thyroid to underactive which easier manageable with thyroxine etc. Maybe worth trying? There is a homeopathic hospital in London where you can be treated on NHS. Good luck!

  • I was the same as you and was prescribed the same meds, although I stopped the propranol. When things are a bit more under control they will probably offer you RAI treatment which kills off the thyroid. You can google this. I took the capsule that killed off my thyroid, this is what RAI is. I then became very underactive and was prescribed thyroxine. I had dry eyes and used eye drops but was able to stop them as my thyroid levelled a bit. My legs ache a lot now and I get short of breath as my thyroid levels have gone too low twice in the past year. I understand how you feel and everybody is different but they make it sound so easy don't they? I had graves disease which is a bit more difficult to treat. To be honest I haven't felt good for the last 6 years as it was coming on and was then diagnosed but I just have to bear with it. Accepting it is the hardest part I guess. The anxiety is the worst part and getting exhausted quickly. Hope they sort you out soon

  • Hi there, this patient does have Graves disease (you can't have thyroid eye disease without TRAB antibodies, as you know, so therefore it has to be Graves) and TED patients CANNOT have RAI. Personally, I would never advise anyone to have RAI anyway, particularly anyone under 40 and particularly a woman. RAI can also trigger TED in patients that previously didn't have it. It's an all round nasty treatment and they don't tell patients the half of it. The only time I'd personally have considered RAI was in the instance of aggressive thyroid cancer. I refused RAI for my own cancer, option for TT and lifelong TSH suppression.

    Hashitoxicosis is harder to treat than Graves as it's hypO and hyPER at the same time, which is why I suggested a full work up of all antibodies (docs are lazy, they'll say ah ha but we know it's Graves because of the eyes, and antibody levels don't affect the treatment) but it's vital to get an accurate diagnosis. I do agree with you that graves is a very tricky illness to treat which is why it's a scandal that endos are so blase about it and send people off to nuked as if they were going for a haircut!

    Honestly, I get where you are coming from, but you do not have to bear with it. It is possible to feel well again. You don't sound optimally treated at all - most thyroidless people need T3 as well as levo (lots of us feel better on NDT) and as antibody activity can linger long after definitive treatment (particularly with RAI which can trigger other autoimmune illnesses and keep thyroid antibodies high) any doc titrating a graves patient by the TSH to determine optimal levels ought to be fired and a new doctor sought. Ditto any doctor only offering T4 monotherapy, that's just cruel in my view.

    Hope you feel better soon and don't mind me chipping in.

  • Hi, sorry to come in so late. I was like you a year ago. My first post was almost exactly what you said 'will I ever feel normal again' I was told at my last hospital visit that although my TSH was <0.03 it was less than that because that was as low as they went.

    When I started my heart was pounding all the time, I felt it through my stomached rather than where my heart is. I had list so much muscle strength I wasn't able to get up off the ground / floor without help and had been going to bed after tea for months, I had no energy to do anything - I just felt dreadful.

    I had a very near miss in the car one night and went to see my doctor the next morning because I knew I just couldn't keep going. I was booked in for a blood test the following morning and the day after my bloods were sent off I came in and found a message on the answer machine from my doctor saying I had a very overactive thyroid with antibodies, she had booked an appointment to see an endo at my local hospital and there was a prescription at reception for me and to come back in a month fir a blood test.

    I started on 20mcg Carbimazole but couldn't take propranolol because I have asthma. i took the carb for the month. I felt very ill indeed. I also got really bad tempered, angry and tearful and couldn't see myself feeling better - ever!

    After a month on carb I was tested and got a letter from my endo - my appointment wasn't for three months which seems to be about average really - even for someone as bad as I was, anyway, the letter told me to double my dose - my T4 had come down a bit but my TSH was still the same. I did that for two months and ended up really hypo. Needless to say I still felt awful but in a different way, plus my hair was falling out and my nails had flaked and peeled so much I could hardly use my hands because of the pain.

    I started on levo after my first endo appointment, low dose (I'm 65) then it was gradually increased. I found that after every six weeks I needed more levo - first time I thought I had gone hyper again but some wonderful person on here said that you can have hyper symptoms when you are hypo and that turned out to be what was wrong. I was up to 100mcg levo and 40mcg Carbimazole when my block and replace was stopped at the end of October last year and I have been in remission since. My first year check up is next month. I feel gone, back to doing the sort of things I did before. I have a feeling I might be getting a bit hypo and I've been tempted to do a home test to find out but I will probably just wait until I get my official tests done because it isn't long.

    I had my B12 checked out and although I was 'within range' I was very low so I have been supplementing with that, I also supplemented with D3, I took vitamin C every day because the pharmacist recommended it when I started Carbimazole - I was taking it anyway so I just continued, I take Redoxon slow release 2x capsules every day. I also take a multivitamin, I take Vit K because my physio recommended it along with the Vit D for bones and I take CoQ10 or Ubiquinol I like that best but ordered Q10 by mistake this time.

    When I was first diagnosed I treated myself very kindly - in fact I was a bit selfish and put myself first and only did things I wanted to do. I work part time on a free lance basis so I cancelled all the work I had booked and just did nothing. Although you might not look it (I had lost so much weight - 2 stones - by the time I was diagnosed that I looked great) you are really quite ill with Graves.

    I got loads of rest, fortunately the kids have left home and it was just the two of us so I did a lot of sleeping and my husband did a lot of shopping and cooking. I knew I was getting better when I wanted to help him cook.

    So, although you feel as if you will never get better - you will. It might not feel like it right now but you will. You are certainly in the right group for support and good advice.

    Good luck :-)

  • I am astonished that they are working to your TSH. Both at the time of diagnosis and now. It is not standard at all to wait three months in such a serious situation, that's bloody disgraceful! You should have been seen on an emergency list. Any doctor prescribing carbimazole in order to get the TSH to rise in a Graves patient ought to be fired! As you had antibodies (TSH Receptor antibodies, which block the TSH, hence the suppression) it is not an accurate guide at all to how the patient is doing. I have a friend who had her thyroid removed, she's been very hyPO since but still doesn't have any TSH as her antibodies are still active. No wonder you went hypO. Their own guidelines state that patients should be titrated according the the FT3 not the TSH.

    Sorry to be so direct but I still get so mad at how badly this illness is treated!

    Great that you are taking fantastic care of yourself, I also had horrible vitamin and mineral deficiences, every single one of mine was through the floor, as were my sex hormones. They overtreated me so badly on carbimazole i gained a pound a day until I'd gained four stone - took me a while to realise the numpty was trying to get my TSH to rise! But because the idiots never tested my antibodies properly they failed to realise I had hashitoxicosis and was cycling through T3 spikes every four hours - hypo-hyper hell!!!!!! They also failed to scan me so missed my cancer, and the inflammation in my thyroid that was driving 70% of my symptoms. They also failed to refer me for my TED. So they could have sent me blind and then killed me.

    My endo surgeon was my third opinion, I saw him privately and I was moved and seen the following week as an emergency on his NHS list. I sat and sobbed with him, and he very kindly said, 'Rebecca I don't even need to examine you, I can see from this side of the desk that you have chronic, late stage, untreated hashitoxicosis and I don't know how you are still standing up'. That was nearly two years after supposed diagnosis and treatment. And at that point the standard endos were trying to tell me it was in my head and I needed to get some therapy and go on a diet 'as you are metabolically corrected'.

    I very nearly died and I continue to be shocked by the stories patients tell about just how lackadaisical doctors are with patients like us.



  • My T3 was only tested twice after that like fruit and nut it had to be paid for privately. Mh GP requested it , the labs didnt do it, She requested it again the labs did T4 but not T3 .I was recent admitted to hospital, one of my symptoms was fast heart rate/palpitations. The hospital lab did only TSH mas it was in range nothing else done.I was admitted forv3 nights and the test was never repeated, The doctor toldcme I could go home it wasn't my thyroid .Graves was written on the request slip.My GP has put on request slips Graves, on carbimazole, full thyroid panel essential I have seen it , it comes back TSH normal so it is unlikely this patient has hyperthyroidism! The labs overruled it . They overrule the hospital doctors, My first one after stopping B n R is in 3 weeks time, the Endo has requested T3 and given me the form , he has written Graves -post carb.

    Any bets on whether it gets done? I have already paid over 100 pounds and have my private kitbat the ready x

  • Get your GP to write 'T3 Toxicosis' or 'former T3 toxicosis' as well as Graves and carbimazole or write it on yourself. You could even get a copy of the guidelines and send those! They can test the sample for up to a week after the draw, your GP can always ring the lab and ask after the event. I find it astonishing that an endo can't even get a bloody T3 test for a Graves patient! And it MUST be unethical to offer a definitive treatment with no grip on the actual levels of the patient. A joke.

    Up the sisterhood! (and the odd brother)



  • It not happened yet with the Endo , When he wrote the form he pointed at T3 and said 'thats the important one'.He is also in full agreement that I can go back on B nR if I relapse,p, I left him a message last week as I wanted to question something, he rang me back within 10 minutes and spent 25 minutes on the phone with me .He gave me the choice of carb or B nR after explaining both options.I think there will be an almighty fuss if he doesn't get T3.He doesn't believe in rushing into RAI.Infact I am goingbto ask him to do me in advance several blood request slips with his signature on.

  • Good plan, he sounds like a dote, hang on to him! x

  • The only T3 testing I have had done was because I paid for it myself.

    I've been told twice at different consultations that if the B&R fails I'll get RAI and if the first round doesn't work they can do it again!

    I pointed out (twice) that I did NOT want RAI and the endo held his finger and thumb up as if he was holding a pill and said 'It's only a little pill'. Oh and that I was very unlikely to become hypo. I said that was one of the reasons I didn't want RAI. Well, I'm afraid I don't care if it is the tiniest pill in the world I don't want it - if anything goes wrong and I can't take carb or PTU then obviously I'd have to reconsider and I would but otherwise - no thanks. What was even funnier was that this persons reason for offering RAI was that's 'Carbimazole is very toxic!' I mean, like radiation isn't. There is no reason at all why you can't stay on carb for long periods of time, besides even if they kill off your thyroid you still have the Graves antibodies.

    I found I was getting quite stressed worrying about what would happen and stress isn't good fir Graves so I spoke to my doctor who said they couldn't make me have it and couldn't refuse to treat me if I said I wasn't taking the RAI so that major source of stress out if the way I got on with life.

    I also have mild but definite visual symptoms and every time I saw someone they would say 'your eyes are fine' and I'd say 'they might look fine but they feel bad' but I don't think they wanted to know, thing is if they acknowledge I have TED even though it is quite mild, it could cause problems with their 'quick cure'.

    I know it is extremely cynical and I'm afraid I am these days - well that's what my husband says and I don't think it is meant as a compliment - but I just think this rush to give us Graves people RAI is because it gets rid of us, we get signed off and out of their way, back out to our GP where we may or most likely may not get enough thyroid meds to make feel better.

    I also find it hard to believe though that I could actually be given RAI without ever having had my T3 tested.

    Like you I'm sure all it would have taken was to be involved in a car accident or something like that and I wouldn't be here now. I consider myself to be very lucky. :-)

  • Hey, that's appalling, run like the wind from that endo, get another one!

    If you have any hint of TED you MUST NOT have RAI as you know. RAI can cause TED in people who didn't previously have it as it can sky rocket the antibodies. The whole thing is barbaric. I was reading this feminist critique of thyroidectomy / ablation that said it's the new 'hysteria' treatment - it's a way of subduing 'hysterical' women, I felt that I was largely treated as if I was hysterical and making a big fuss about nothing. This article was quite radical but I'm starting to think it's kinda true, they really don't care, bunch of moaning women (mostly) and their bloody hormones! We are certainly rendered docile and passive on their treatment regimen.

    I too worked that out in the end, CONSENT is a very big deal in medicine - they can't make you do a darned thing. I even turned up for my post TT cancer dose of RAI ... I sat in the lead lined room waiting for my thyrogen injection the day before and THANK GOD the sister on duty was a total b*tch. If she'd been cuddly and friendly I would have probably done it. But she was unpleasant and rude and it just was the straw that broke the camel's back. I ran out of that place after looking at the nuclear warning stickers - no one comes into the room, you have your own septic tank, every bin and sink in the room is marked 'nuclear waste' and apparently men in suits bring the 'pill' and you set off airport scanners for six months afterwards!!!!!!! - and rang my PhD cancer researcher school friend and we went through the research together and I said no. I'd been against RAI before but they scared me with 'floating cancer cells'. Turns out my chances of survival are exactly the same without the RAI, they don't tell you that as it's the 'standard treatment pathway'.

    I'm TSH suppressed for life and was told at my last appointment that from a cancer perspective I'm 'cured' and actually my endo surgeon (he wasn't the oncology endo) was very supportive when I told him, he said if it had been up to him, I wouldn't have even been offered it.

    You need to insist on a referral for your TED, can your GP send you to Moorfields for a second opinion, they are brilliant and it's very important that it's managed correctly? Your GP can ring the lab even if your results come back without the T3 as they'll keep your sample for about a week and can run it again. I used to have to write 'T3 Toxicosis' on the form and under consultant at xxx (insert name of kick ass teaching hospital). My hospital now always test my T3, never been an argument, they are brilliant (provided I stay away from the leading light of the BTA boss of the department, managed to dodge her so far).

    Best wishes



  • Rebecca, your story (and the tone in which you tell it) is inspiring and I love that you are coming at it from a feminist perspective. You are saying things that need to be said.

    I am sorry to say that I resorted to bringing my (male) partner with me to appointments partly so he could witness it himself but also sadly because I felt I was treated with more gravitas. I don't know if I actually was taken more seriously when he was present or if I just had become so paranoid that I needed him to witness these interactions to make me feel like I wasn't crazy or what.

    I now avoid the doctors as much as possible but when you are in grave need, as you were and as N2_m_l is now, you don't have that luxury.

  • Thanks

    I wholeheartedly agree and I've heard that story over and over and women will report that endo the directed the whole consultation at the man using the word 'she'. It's nuts and it makes me angry. The trouble is, the more we complain or get assertive, the more they take it as evidence that we are being 'emotional' or 'neurotic' when in fact why the hell wouldn't you be upset with some numpty ruining your life because they are not LISTENING.

    My good endo admonished a student who was in the room with me one day, I'm not sure what went before but i was giving detailed answers to my doc's questions. My Endo turned to the student and said, 'See, if you LISTEN to the patient, you will ALWAYS hear them tell you what the problem is'. Fancy that, a doctor using those highly sensitive medical instruments called their eyes and bloody ears!

    My worst story is that of the gynae who (before I was diagnosed) was investigating my menstrual irregularities. He called me 'babe' whilst my feet were in the stirrups! I have another one, my friend in a wheel chair with CP, has bladder problems. She had to have an internal and she was very nervous, the doc was brusque and she gets muscle spasms. He was hurting her, she tensed up. He said, in annoyance, 'gosh are you this uptight when you are having sex with your boyfriend?' .... My chin was on the floor when she told me!



  • N2_m_l there's excellent advice been given on this thread. This link explains hyperthyroidism and Graves.

  • Oops, this is the missing link

  • funny that these drugs will more than likely be binded by fluoride which replaces iodine in the body and leads to thyroid problems, if you research all what I recommend both sides of the arguments then you can make your own decision what you need to realise is that the majority of people who are against these natural elements work for the pharmaceutical companies and there ain't no money in curing people.

    I'd start taking nascent iodine 2 drops a day 6 days on 1 day off you may need a lot more than this but just start off slowly you will notice the difference in your body if you keep a diary of how you are feeling.

    borax helps balance your hormones and is essential for hundreds of processes in the body we do get this from the sun as well as sulphur but we need around 30-60mg a day of borax

    and sulphur coarse crystal flakes no additives or anti caking agents in this as it stops it working further than the GI Tract build up to 2 grams a day start with an eighth of a teaspoon

  • I have an overactive thyroid not of the scale like yours but I am on 20mg of Carbimazole. I get "restless legs" when I rest and I have trouble getting up and down, I mentioned this to my Gp who said she could find nothing in the contra indications for medication, she seemed to dismiss it as my age (64years) someone on this site suggested a vitamin deficiency possibly zinc.

  • Hi I noticed you said something about getting the radio iodine makes you worse can you explain? I have had an over active thyroid for 3 years at first I lost loads of weight but I now have put on more than my weight and still have an over active thyroid, I have most of the symptoms like weak, sore legs palpitations and now starting to have swollen thyroid glands. The endo have set me an appointment to get the radio iodine in 3 month but I am now worried if I should do this or get the surgey. I don't know what's best to do? My thyroids are still highly over active and I do have Graves' disease. Can someone help? Xxx

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