Hello, I have just joined your group this morning after being diagnosed with an overactive thyroid. I'm a bit scared, due to see GP later this morning....can anyone empathise?? I've been ill for 6 weeks and really fed up, haven't been able to work....I'm 51 and a self employed Careers Adviser. I have a 9 year old daughter, soon to be 10 and a very supportive husband, so I know it could be a lot worse. Will this affect my life in any way? Thank you for reading my message!


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46 Replies

  • Welcome to our forum. I am hypothyroid but we have many who are or have been hyperactive and when the they read your question they'll respond.

  • Ok thanks!

  • Hi mand06 sorry to hear you have overactive thyroid, I'm afraid it will impact your life wish I could say it wouldn't. Firstly your gp will probably prescribe you carbimazole this will stop thyroid from producing so much thyroxine and he may prescribe propanol if you have palpitations, then he should make a referral to see endocrinologist which is a specialist in thyroid. It will take a few weeks to feel better but you will start to feel a bit better after a couple of weeks on carbimazole. You need to read up on everything to do with this illness and a good place to start is on thyroid UK they have lots of info that will help you understand what treatments etc there are. Also read posts on here as you get alot of good information from fellow sufferers, if you need any help please don't hesitate to post and ask for help. Good luck with your appointment today

  • Thank you so much for that honest and kind reply. I have been prescribed beta blockers only and referred to endocrinologist. I'm getting a little more anxious though reading your reply especially as I have a London weekend trip booked for the 29th July and Bulgaria on the 10th of August for 2 weeks. Not sure how long I'll be waiting for referral.

  • Hi I'm surprised the doc hasn't given you carbimazole yet as it can sometimes be a bit of a wait to see endocrinologist,doc could phone endo to get info on treatment in the mean time as you won't get better just on beta blockers all they do is slow heart rate down although this will make you feel more comfortable it won't stop the other symptoms such as fatigue and mood swings, I had to wait 4 months before seeing endo but that was 20 yrs ago hopefully things have improved since then, but at least gp started me on carbimazole straight away though could depend on how badly overactive you thyroid is I suppose. Have you results,of your bloodtest that you could share with us, it's always good to get these printed off at the docs so you know where you started and then you can compare when you have treatment how things are progressing. If you can get treatment started I would think come end of July you would see a good improvement in how you feel.

  • I've requested access to my medical records so hopefully I will be able to see my blood test results that way. Will check tomorrow when supposed to be sorted!

  • You should ask your doctor to prescribe for you unless he is unsure what to do. I understand carbizamole should help reduce the activity. I see that purple64 was prescribed straight away. Maybe phone GP.

    I have just read some other replies below and I don't understand why people aren't prescribed right away :)

  • Hi Raventhorpe! (and my other friends!). I need your help again. I have received my blood test results....T4 level is 59.4 (high I know), the TSH level says <0.01miu/L (0.27-4.5). The serum c reactive protein level borderline 7.6mg/L (<5). The serum total 25 vit D level borderline.

    And guess what? After contacting Drs again, they have now prescribed Carbimazole!! Not sure of dose yet...going to collect soon! I'm so pleased I'm getting this as most of you have been prescribed it and I'm hoping I can get out of this first stage and start functioning a bit more.

  • Hi Mandy 06 so glad they have finally given you carbimazole,i couldn't believe that they were going to leave you to suffer the awful symptoms you get from over active thyroid till you can see endo, now you will be on the road to feeling for vitamins it's important to have them up high in ranges and we are very often low in these when hyper or hypo and it can impact on our health as well.i would suggest if you have any test results with ranges that's the figures after the results to put in a new post so all members see it and you can get advice there are some truly knowledgeable people on here who can tell you what supplements you would need to raise levels.the vitamins that can usually be low are ferritin, folate, b12, and vit D, if you haven't,already had these checked I would suggest you do, if gp won't do them then you can get them done privately which is what lots of us do on here, most of us use medichecks or blue horizon.if you need more info don't hesitate to post as everyone on here will be only too willing to help you.

  • Thank you again Raventhorpe for all that advice. I'll look at those places. Yes my hubby is looking at private consultant as told it's a 6 week waiting list. I'm only on 5 mg carbimazole. Is that ok to start with?

  • Hi, hyper friend! my T4 was exactly the same as yours at 59 and I was on 40 mg. I think you will definitely have an increase as I was told I was very toxic at that level.

  • Gosh, I'm gettingworried now....these doctors haven'ta clue.

  • Hi Mand06 that is a very low dose, normally you would start on about 20mg or at least 15 mg at first, sounds like your gp is being super cautious or doesn't know what he's doing, what were your t4 and tsh results? were they not very over the range as that could be why they given you such a low starting dose. Seems the sooner you see an endo the better. With carbimazole it's a bit of a balancing act usually you start off at a high dose and once it brings down you t4 and your tsh increases they drop the dose down till your stable they will be doing bloodtest at regular intervals on the way to see were your levels are, once they get it in range again they will reduce it gradually. You usually stay on carbimazole for about 12- 18 months and then hope to go into remission, if that happens you can be in remission for years or only a few months, I was on and off carbimazole for 12yrs and was fine then I had Rai 7yrs ago.i hope I'm not giving you too much information at once as it can be a bit overwhelming at first.

  • I was diagnosed in April this year with graves. I was put on Carbimazole straight away only a low dose of 15mg then it was increased to 30. Now back down to 15mg. I am really surprised your gp hasn't put you on it. I can't get an endo appointment until sept.

  • Thanks again for that reply...apparently the surgery do not prescribe specific thyroid medication as they say this is the responsibility of the consultant. My husband had rung our local hospital to get an idea on the waiting list and was told I should hear within 2 weeks. I really hope this will be the case.

  • Hi Mand06, I've got Graves Disease and my Gp phoned after about 2 weeks to tell me to take Carbimazole so you will probably hear when the endo has received the referral letter. I've been on Carbimazole since March. It took about 6 weeks for me to feel any improvement. I was taking 20mg to start with then increased to 40mg, then reduced to 10mg, then increased to 20mg! I still don't feel great I'm afraid to say but do feel better than I did initially and I'm sure you will be able to enjoy your trips away. I had to wait 4 months for my initial appointment but was fortunate enough to be able to go private. Good luck, if you need to talk I could do with a hyper friend!

  • Aw, I'll be your hyper friend! Thank you for you said. That is so kind. You've had it rough...what exactly is Graves Disease and how does it affect you? Yes the dr I saw asked if we had private health insurance...

  • Thanks for being my hyper friend! Graves' disease is an autoimmune disorder that causes the thyroid gland to over produce thyroid hormone and is the most common cause of hyperthyroidism. One of the blood tests showed I had positive antibodies for Graves. I started having symptoms just before Christmas feeling really shaky inside. Then I noticed I had lost weight even though I was starving all the time, palpitations, always feeling hot, muscle aches, heavy limbs, not being able to sit still and anxiety! After treatment with Propranalol the symptoms did get a lot better but now still feel really achy and tired all the time and still feel shaky. Definitely get copies of every thyroid function test you have then you can compare them and your symptoms. My levels keep going up and down and I can now tell when I'm more hyper! My endo suggested staying on Carbimazole for a year then if no remission consider rai or surgery 🙁 This forum has been a godsend day though x

  • I agree! It is so comforting to know what other people are going through. Information is power! Take's good (fab!) to talk! x

  • Thank YOU Argie1. I feel for you. I agree, this forum has been's to all of us! X

  • Hi my hypo pal! How are you doing? Don't know if I've said on here but I have an endo referral at last...11th July. I have asked for blood test before too as thought would be useful to the endo as well as me! They weren't going to offer it but hubby insisted. I'm now at the stage, though, where I am feeling no improvement...on 5mg a day, I'm not surprised! Reading the other posts on this thread it is way too low....the drs haven't a clue, that's for sure. I just haven't any energy, so weak in my legs, disorientated, sweaty in this hot weather...and my memory is awful! Forgetting my little girl's things for school for example....forms needing signing, handing in etc. Just got call from doctor...hubby rang them. I've got an appointment in an check bp and see if need an increase in carb. Wish me luck! X

  • Hi! Glad you got your appointment sorted. Yes your dose is definitely too low but at least you're on something I suppose. Yes it's so hot at the moment. I'm normally ok in hot weather but no any more! My memory has been terrible too. I put petrol into my diesel car twice! I forgot to put the handbrake on and my car rolled into a lamppost! I have done so many things but my memory has definitely improved in the last few weeks, thank goodness! Good luck with today's appointment, hopefully your gp will increase your Carbimazole. My starting dose was 20 mg.

  • Aw that was funny, sorry, re car! But that's what it's like, isn't it? Well, another update: I saw dr and she prescribed 10mg. Not happy with that to be honest....hubby not either so he got on the case and to cut a long story short, I am seeing the endo this Friday! Cancellation. Changed hospital but not too far....I feel very lucky to get one so soon but I'm desperate. Feel like I'm going downhill....will let you know what happens. x

  • So glad you have an earlier appointment, that's great! Let us know how you get on x

  • H Mand06. Welcome to this forum where you'll find support, good advice and when needed a hug from everyone. When I was first diagnosed with Graves (hyper) my GP prescribed Carbimazole and betablocker immediately so that I could start treatment straight away. He then referred me to Endo. Not sure why your GP hasn't prescribed Carbimazole if he says you're hyperactive (never heard that dr can't prescribe thyroid medications ??!!) You shouldn't have to wait long to see Endo as being overactive is a very serious condition. Once you do get tablets you'll start to feel much better, although it takes a while to get into your system. And please, don't cancel any holiday plans, sounds like you could do with a good break. So enjoy Bulgaria and I hope you get the treatment you deserve quickly.

  • Oh thank you so much for that! That's such a lovely post, you're very kind. Yes it's strange re: doctor. I remember now he said he can only prescribe medication for underactive thyroid. This surgery hasn't got a great reputation, as you can probably guess! I've had this 6 weeks undiagnosed and only yesterday have I had a blood test. I was first told it was labyrinthitis! Anyway, I don't want to moan here. I just hope the beta blockers help whilst I'm waiting for the referral. Thank you again for lifting my spirits a little more!

  • Hi KarBon, just wanted to say I'm now on husband insisted with them this morning after seeing your post (and others saying same thing). To collect script in half an hour....this surgery is the limit....really awful....didn't do blood test until 6 weeks in....said couldn't prescribe carbimazole... grrrh! My T4 result was 59.4...high! I've now currently got cystitis or uti? Is this normal with this condition? Just can't bear to see another dr at that place again at mo....

  • Hi Mand06. So glad your husband put his foot down 🙂 It's good to have such an understanding partner to help you thru this. You will start to feel better soon. Unfortunately you might start to gain weight as your body will start to slow down, which it must when you're hyperactive. 59 is high, I was 74 but had had it for a lot longer, should have seen a Dr way before I did!! Lost 2 stone but after thyroidectomy 2 years later gained 3😢 I couldn't stop weeing whilst overactive as everything happens on turbo. I found this did give me uti as constantly wiping. Drink cranberry juice which helps but you might need antibiotics to sort it out, maybe with another Dr who is a lot more sympathetic. Hope this helps you, we're all different and what's right for one is not necessarily right for another. Always here for you tho. Meanwhile give your hubby a hug for being such a good boy 😋

  • Hi KarBon, you're such a wise one! Experience matters! Is 5mg a bit low to start with? I hope they haven't made another error in my case yet again....That's ok re weight issue. Must admit I've liked this weight loss but not this way, I know! I've bought the sachets of cystitis and it's easing off so hoping it's just that. I just don't recognise my body at the moment! What's happening? Did you feel a bit of shock when diagnosed? I do....strange.....suppose I'm getting older, aren't we all?! My mum says it's because I've overdone it....wife, mum, have my own's a lottery this life business I reckon!

  • Actually i was quite relieved as Mum was going round telling everyone she thought I had Parkinsons 😤 Seriously though once you come to terms with having this disease you can then take control, read up on it and if I can give you any advice it's to remember that Drs don't always know best. 5mg probably just a starting point, you'll have another blood test in a while to see what's happening. All the very best to you Mand06 x

  • Thanks KarBon, you're a star. All the best to you too. Hope you'll still be there for me, just in case! X

  • Hi KarBon, I was just wondering how you're doing. Things are progressing slowly but surely with me....with me and hubby being as proactive as we can be. I've got referral for endo on 11th July (hooray) and have got appt to see dr for 6th time I think in an hour to recheck bp etc and see if need increase in carb. Er, yes I do! Just 5 mg for a week and no improvement. What a surprise, not. And my memory is getting worse too....only good thing, I've lost 11 pounds in 8 weeks! Know it may not last but enjoying it while I can! Just need something to smile about at mo! X

  • I'll give him a hug and from you too!

  • Hi there this is a great forum I've had my eyes truly opened. I am currently being treated for hypothyroidism but when I was younger I was diagnosed with graves and hyperthyroidism due to memory problems I can't really recall but I am sure i was put on carbimazol then I was told I had to have radioactive iodine to remove thyroid. But what I've learned on here is speak up and don't be afraid to quiz ur doctor. All the best

  • Thanks! Take care.

  • Hello. I went to my gp after weeks of terrible anxiety and generally feeling very ill - racing, pounding heart, dizzy, weight loss, shaky etc. My thyroid was found to be very overactive with t4 of forty odd and I was prescribed beta blockers which relieved most symptoms a bit and I felt more able to function and work was easier to cope with. I was also referred to endo and that took about 6 weeks. They diagnosed graves and prescribed the carbimazole. So don't think it's too unusual for gps not to prescribe initially. Everyone appears to be different but for me I felt miles (and I mean miles!) better within a couple of weeks. I really had felt dreadful and I couldn't believe how well I felt! Hope same for you. Best wishes.

  • Thank you so much for your reply. I'm only on first full day of the beta blockers and I can tell slight improvement. It's great to know your experience of this and I'm pleased you're feeling much better with the meds. Take care.

  • My GP prescribed Carbimazole the minute my bloods came in, as Graves needs urgent treatment. I felt perfectly normal within a month and was happy on it for over 2 years (prior to thyroidectomy). So don't panic - even though Graves in itself makes you panicky. Read RELIABLE info about the disease, to get the best treatment from the medical profession, and there's every chance that life will get much better. Watch your weight - that's the only downside of treatment that I experienced.

  • Thank you for replying, that's so interesting what you said. I'm actually losing weight after wanting to do so for ages! It's quite a loss, about 5 pounds. Did you mean that when you said watch your weight?

  • Hi I was diagnosed with overactive thyroid October 2016 and put on 40 carbimazole and beta blockers straight away however I had my doctors to refer me to endo as still non the wiser of why I got it. I'm now taking 20 carbimazole and do a blood test every weeks to determine dosage. Feel much better now but gained 24 pounds from tablets.

  • Hi, thanks for your reply. It's lovely that so many people have given their time to support me. I send all my support back to you all! That's useful info esp re weight increase....this is a weird world alright! I rang Drs to check if I can be prescribed carbimazole now but constantly engaged...I really do not like my health centre! I chickened out but will try again and check they've also sent the referral off and put urgent!

  • Exhale often, keep away from stressful folk, eat organic ....

    This site is full of info...

    Stay positive

  • Hi Argie1 (and my other friends), I have seen my endo on Friday and he was great. He had put me down as urgent due to my T4 level of 59.4. He said it's prob due to Graves....checked my neck, no goitre or nodules so will not need surgery. Said carbimazole is the first option with the radioactive iodine second, as opposed to the USA, which is the other way round. What surprised me was he said there is a 50% chance of success, thought would be more. Anyway, think positive! He DID say I would feel benefit of carbimazole in about a week! He's started me off on 40mg and after checking with him, I've also started taking Vit D supplement. Had blood test for antibodies after seeing him and booked another for thyroid function at my gp surgery in 3 weeks time....he will then ring me as part of his telephone clinic 3 days later. He was so professional but personable too and I could really relate to him. Good thing as I will be his patient for 18 months to 2 years apparently! I hope this has given any other "newbies" some reassurance in what to expect....I def feel like I'm on my way with this and thank you to all of you who have sent posts to me in my early were all so kind and're a great group! x

  • Hi Mand06, glad you got on ok with your appointment and that you have a nice endocrinologist! That makes all the difference. My endocrinologist said I would stay on the Carbimazole for a year and then see if I go into remission. If it returns I can choose either thyroidectomy or RAI, so yes fingers crossed we reach remission! I see my endocrinologist every 8 weeks, with blood tests, which I think, is too long so that is really good you can have a phone appointment in 3 weeks as I've heard you can go hypo quickly. Yes this forum is brilliant and is interesting to read others posts, apart from I'm on my iPad all the time, so my husband tells me!

  • Haha, it's a new age! We can't live without technology! So you can go hypo? This forum has def been a lifeline for me...even though we all have our own unique experience, I think it still helps to know how it compares to others....on the various stages of the journey. Sorry for using that word!

  • Hello my friends, just wanted to update my is now just 5 days since I started on 40mg carbimazole and I have to say it's feeling good! It's been coming on gradually....feeling less tired, dizzy, legs not aching as much.....this is too quick??! I'm doing more jobs around house too...still have the symptoms but just less...not quite ready to return to work but I can def see a light shining at the end of this long tunnel!! There is hope!!! x

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