On Carbimazole 20mg for overactive thyroid for 8 weeks and not feeling so great

It took what seemed an age to be diagnosed over active, the endo started me on 20 mg carbimazole 8 weeks ago. Initially I started feeling better . However, this last 2 weeks ive been an emotional wreck, waves of agitation and anxiety and terrible sleep problems ( lack of) today has been my worst day since befor starting treatment, I feel like I'm losing the plot sometimes and obsessing about alsorts of things that are pointless.

I have had one occasion where I had to have a bold test as I picked up a virus bu all was well, then that lead to reading alsorts of horror stories about this.

Is this normal when taking medication for over active thyroid.

I've heard people say that the iodine treatment works better and you only do it once .

77 Replies

oldestnewest
  • Your description of the symptoms is just like I was when I was overactive due to Graves', it's a very long time ago now so I cannot remember how much Carbimazole they gave me. I also had propranolol because my heart rate was very rapid. Have they put you on any beta blockers to calm you down? It certainly sounds as if the Carbimazole is not getting the thyroid under control. I have had a partial thyroidectomy followed about 20 years later by a total when it started overworking again. Many people won't let them remove the thyroid especially if it's for Graves' disease, Have you been confirmed with Graves' disease?

    I know there are several others on this forum who have Graves' and they can give you some advice regarding diet which can help to suppress the thyroid, because the Iodine treatment is rarely accurate enough to destroy just the right amount while leaving you with enough thyroid to function. That's the argument against RAI. The argument for, is that you would not have to be constantly keeping an eye on how your thyroid is doing, but truthfully if you look at many (probably most) of the people on here you will see the kind of problems which arise due to not enough thyroid. So it's a catch 22 situation.

    Have you looked at some of the blogs on here from the overactive thyroid sufferers? They may give you some help. Also, look at Mary Shomon's website, she has some information to help you. Also, do you have any blood test results? That would be very useful to see just what your situation is right now.

    Right now, if you feel that bad, you would be well advised to see your doctor or to speak to your endo's secretary to get an early appointment to see if they can adjust the meds. If you still feel that bad, you need some help. I know so well those obsessive thoughts which can take you over unless they are controlled. I'm so sorry you are suffering like this, It may not seem that way right now, but there IS a light at the end of the tunnel. Hugs, Marie XXXX

  • Thanks so much for reply. It does make me feel a little better reading all the responses. I think I will go to my GP as my endo appointment isnt for another 6 weeks. I doubt I will last that long befor I become an emotional car crash lol.

    I have started beta blockers , I was ale to stop them after four weeks on carbimazole bur I have had to start again. I will have a look at website you suggested to .

    Some days just seem a blur to me , it's reassuring to hear there is light at the end of the tunnell.

    Thanks Marie , it's good to talk.. Xxx Debbie

  • Hi Debbie --- I am hypo not hyper however, may I suggest even plead with you try an alternative therapy to help you get by rather than the bog standard meds which may be given. Simple things like gentle music (in peace & quiet of course), tai chi, yoga, pilates even. Also if you can finance it, I found acupuncture superb for my hypo --- well ghastly sweats & flushes to be exact & emotional stuff. It was brilliant. The silver lining : I felt on top of the word, had more energy, bright & alive. You do need to find a good one though. Aromatherapy massage is an excellent alternative to calm you, relax the muscles & should help with sleep especially if they use an orange, chamomile and vetivert blend. It helped a patient of mine who suffered from insomnia. Burning frankincense, sandalwood (& others) is very beneficial. Good luck and let us know how you get on. xxx

  • I had to come off carbimazole PDQ because it brought me up in an itchy rash - other possible side-effects seem to be physical rather than "emotional", but I would talk to your doc about it.

    I don't know why carbimazole is the first port of call for hyper treatment - safer? cheaper? Dunno :-/

  • I am very itchy too, I didn't realise it could be that, often get odd rash or redness too.

    I will question the meds, thank you xxx

  • Carbimazole works for many people - it's worked for me and I am doing well on it. See my post on this thread for further info. As with any drug it will not suit some. There are only 2 drugs for overactive thyroid - carbimazole and propylthiouracil (PTU). Of the two carbimazole is preferred as first line for the majority.

  • Ah, I see that Marram has addressed the question of "why carbimazole?" - thank you :-)

  • I was just like you last year. Keep talking to your doctor. Mine was fantastic. I was a total mess and was off work for 3months. Are you on beta blockers as well because they will help with some of your symptoms. It is very frightening as you think you have started the treatment things will change, but it does take along time to begin to feel any improvement. I didn't sleep for months watching nighttime tele and never staying in my own bed - cat napping on the settee! Give the carbimazale a go because the other treatments tend to make you permanently under active and that brings other problems.

  • I will be seeing my GP sooner rather than later I think now. Sometimes I want to be off work and other times I feel like its keeping me sane. But the rushes of what I think feels like adrenalin are really unpleasant. Yep nightmare TV , can't believe what is on . I willl hold on to the hope this takes time but will improve slowly .

    Thanks for your response , Debbie xx

  • It is 2 years now since I was diagnosed with over active thyroid. I saw the Endo Specialist very quickly who prescribed 10mg Carbimazole. My symptoms were extreme anxiety, not sleeping, weight loss, tearful, shaky hands, butterlies in my stomach feelings and fast heart rate...... I think there were even many more, but it does seem a long time ago now.

    After a month on the 10mg I had muscle cramp in thigh and calf that woke me at night with excrutiating pain and I dragged my aching legs around for 2 or 3 days after until it passed but then came back again at night or very early morning. I phoned the Endo's sec and she phoned me back after the Specialist had checked over my recent blood tests and I was told to reduce the Carbimazole to 5mg daily. This is the dose that I am still taking.

    The muscle pains calmed down considerably but I still do have them occasionally and its awfu.

    l

    My 5mg Carbimazole medication is meant to stop this month and I will then have to decide whether to have RAI or surgery. Both these treatments have been suggested to me at clinic appointment and both I have turned down. I want neither of these options and so may well have a fight on my hands......we shall see.

    All I can say to encourage you is that it does take time to feel you have a decent life. The thyroid has an impact on so many parts of our body and I am shocked at some of the tales shared on this mega interesting and helpful site.

    I hope you will soon begin to feel a little better and send a hug to you right now.

  • Wow this stuff is a nightmare isn't it, this website and all your responses are the best info I've had so far. Thanks for your time xd, hug accepted and returned thankyou xx

  • Hi I too am on 5 mg of carbimazole and have been on meds for nearly 2 years.

    It will be soon time to come off it for me too. I am hoping that I am eurythroid and can go my own way for a while before any other treatment but I am also aware that it may not work.

  • I only took carbimazole for 3weeks, had all the allergy reactions to it that they warn you in the leaflet, I was in A nE all over Christmas... Talk to your doctor please, it maybe that you need the propranolol to go with it. Hope you feel better soon..xxxx

  • That sounds scary, I have been vigilant , I have got propanalol 180 sr twice a day, but reading all responses makes me realise I need to be proactive with this and not leave things to chance and hope. Thanks so much xxxx

  • Yes go to doctor and tell him EVERYTHING.. Xxxxxxx

  • Just wondering if you are now on too much carbimazole and are experiencing symptoms of hypothyroidism? I think you should as your doctor for some new thyroid blood tests to asses how you are responding. Please post the results on here and someone will be able t o help. Xxx

  • I will check this out, it's all confusing sometimes but this website and the responses are the most a helpful conversations I've had so far. Xxx

  • Obsessive thoughts, agitation, anxiety and hands trembling are very important signs that you are still hyper.

    You don't mention the tremble, but that is one sure way to know if you are hypo or hyper. Underactive doesn't cause the fine trembling.

    Also, if you can check your pulse and it's constantly 100 or more (not just occasionally like with hypo) then you're still overactive. Hope this can help you. XXX

  • The obsessing, wow I seem to be losing plot sometime, I will start checking pulse, hands tremble a bit. I get instantly hungry and eat a lot at times too. Xx

  • I used to eat spoonful after spoonful of sugar out of the bowl. Anything I could stuff into my mouth I'd stuff. Still lost weight. It is truly horrible. And people used to make comments about my eating...

  • I too craved rubbish food but never felt full. But I put on weight!! Yes it can happen, losing weight is not a given with hyper.

  • I took carbimazole for a few weeks, and , like you, felt much better at first, then started to feel not so good. Went back to gp had another blood test and my levels had dropped right down so I was then extremely hypo. I then had to have regular blood tests but no medication until I had RAI treatment. I was told by my endo that you cant stay on Carbimazole for very long due to the toxic effect it can have. This was a year ago and I am now struggling with hypo symptoms, my results are apparently 'normal' but symptoms still prevail. Am trying to psych myself up for another visit to the GP.

    Hope your symptoms lessen, its not much fun is it :-(

  • It sounds like something that will not be esilly fixed as I first thought. Thankyou for your response. Really helpful. Hope you feel better soon xx

  • It takes time and its nigh on impossible to remain patient with Graves Disease when you are hyper but everything you are describing, how you are typing your messages, your need for answers/cures......for me it was exactly the same.

    The Endo should have told you it takes about 6 weeks to go in and then you will feel rotten with worsening symptoms while they fight your thyroid to slow down and sometimes stop it so doses may need adjusting, its a stubborn thing and refuses to just give in but it does settle and you will know because suddenly you will feel calm, be able to sleep, stop eating the supermarket every day and may even gain a couple of pounds, thats how it is for me.

    I was diagnosed 18 months ago and thought take the carbimazole tablets and it would resolve but it doesnt, the tablets are a balancing act trying to get them right and even when you are within 'normal' range you can still have the symptoms which is why the betablockers are used. My problem is I always revert back to becoming hyper and doses adjust every few months but the betablockers should help with the tremor, anxiety and feeling of 'going insane' so do not stop taking them even if you feel better.

    RAI is extreme, Im trying to avoid it as once done it cannot be undone and if the dose is not exact you will stay hyper or go under, same with surgery and the symptoms of carbimazole are outweighed by the benefits. I have the itchyness (take an antihistamine), the panic attacks, no sleep even within normal range but I am putting on weight, I do feel reasonably calm and Im not being taken into A&E with yet another suspected heart attack anymore so please give it time and if you are concerned ring your Endo. You should have had a blood test after 6 weeks to see how well the carb is taking, if not get it done.

    I've bounced from overactive to underactive a few times now, been tested for everything else it could possible be because I wasnt getting better and stressed my way across these boards but I've finally been semi-level for almost 3 months and the change was worth the fight. I have good days and bad days and Im writing on a good day but even having good days means I am finally beginning to recover and the carbimazole is working, it is not a quick fix.

    Be well, be patient and allow yourself to be ill, you are fighting your own body here and its a long hard fight not many understand :) x

  • This sounds so familiar. I am 2 years on meds and so have gone through the same including weight gain. It is a long haul with no real cure.

  • This is so good to hear , thank you. I wish the hospital and staff were so thorough , they are rubbish at giving info . Thansa a million times xx

  • You are most welcome Debs :)

  • Hi

    I know what your going through! I have graves disease and my personality completely changed, however, I am slowly seeing a little of my old self again although it has taken nearly 2 years to get to this point. Initially it took a few weeks for carbimazole to kick in and I was also on 80mg propanalol which really really helped, especially with the anxiety/being over alert. Speak to your doc about propanalol as from my experience it really calmed me down and settle my palpatations. You are going to have to be patient I'm afraid as it takes a while for everything to settle. All the best :-)

  • Thankyou, good to hear x

  • Iwas diagnosis for graves in 2004 ,was on carbimazole to get the thyroid underactive ,and then counteracted with thyroxine ,i was quite well,as you have to have your blood checked every 4 weeks because the carbimazole .And the endo saw me every 6 to 8 weeks .If you have eye problems due to graves i was told this was the right treatment .Also i did take beta blockers in the begining and found that they did help ,maybe you just need to have them changed,was taking propranolol 3 times per day,Ihope this may help and you will feel well soon xx

  • hi you ve been hyper since 2004? i ve been hyper since 2012 and on carbimazol initially then ppt endo wants all meds to stop and has advised rai or surgery neither of which i want

    i tried to stop meds and then reduce dose but symptoms returned and im back on ppt 1 50mg tab daily

    did you have rai or surgery?

    have you been ok on meds all that time

    endo concerned meds affect liver?

    tx hotfeet

  • hi sorry have not hyper all this time ,i had my meds stopped after about 18 months , but within 3 months i was back hyper . so in 2007 i had a total thyroidectomy so am now hypo and taking thyroxine.they advised me not to have the rai because my eyes are bad,i have heard that some people need to have more than 1 dose of rai .take your time and thing about whether surgery or rai is best for you, but sorry to say no matter which one you choose you will end up hypo .i hope this as been a bit of a help to you and i hope all goes well xx

  • was hoping for neither treatment to be honest!

    hoping being 49 in the next few years the menopause will kick in all hormones will go mad inc the thyroid and it may just all go back to normal eventually? wondered how long you could stay on meds to stop thyroid before impact on liver

    had 1 liver scan so far and all ok been on meds for 14 months

    hotfeet

  • hi cannot help you about the inpact on your liver.i had my op when i was 47 ,the menopause kicked in when i was 51.anyway i was told that i could not stay long term on carbimazole.but i know people who have had surgery for graves and 20 years after it as returned and they have been taking carbimazole for quite a while ,

  • Hi I am 43 and to be honest statistically you will never be cured. If you have Graves then it doesnt go away. You can have periods without meds when you seem ok but then most people then become hyper again.

    I have been on meds for nearly 2 years.

  • not sure if i m hyper or have graves dr says no antibodies so not graves endo says graves?

    if you ve been on meds for nearly 2 years what have they said to you about affect on liver? and what treatment will you have if no cure and only treatment is rai or surgery?

    it all sounds awful as the only option appears to become hypo then on thyroxine for life with all its conditions

    if meds can affect liver what about thyroxine?

    hotfeet

  • My endo is rubbish and is one in long line of poor explainers.Everything I know I have had to find out myself.

    I am told that carbimazole is not a drug for long useage as it can affect your heart and yes liver. My endo has reluctantly admitted that if I come off meds and then go back hyper then the options are surgery or RAI. As I want neither nor do I want to become hypo ( my mum and sister already are) then I am unsure what to do.

    I am due to come off meds soon and I have been taking 5 mg once every couple of days for the last month. I should have seen my endo back in January (every 3 months) but they have not been in touch. However I did tell the endo how rubbish she was so she is probably sulking. Before that it was 3 months and before that 8 months in appointment gaps.

    That is why I have listened to people talking about diets and vitamins and so on but I have yet to see any cures.

    BTW my endo also says I have Graves as thyroiditis is usually short term or caused by nodules and/or goitre. They will not do a scan though for nodules or an antibodies test. Thats the NHS for you - useless.

  • i m confused as my dr who s been great said thyroiditis but endo said graves assume they re both looking at same blood tests? how can one say no antibodies showing and the other say graves?

    assume like me you d hoped it would sort itself out?

    were your mum and sister hyper before hypo?

    assume they have days of fatigue and weight gain cold and depression seems to be all they hypo symptoms although like you i lost weight initially now heavier than i ve ever been!

    hotfeet

  • yep I have had the same nonsense from my GP and endo . They both expect the other to do all the work and have the expense.

    No my family have Hashimotos, another autoimmune disease that give you an underactive thyroid. They have had a relatively easy time of it and think I am making my problems up so we no longer talk. No sympathy due to no empathy.

    I did lose some weight but was constantly starving and have put on loads of weight which is not uncommon when on carbimazole apparently. It does something to the metabolism.

  • I am surprised that your mother and sister have had an easy time of it, generally speaking hypo/Hashis are not very well treated, they tend to be starved of thyroxine by the docs/endos which can lead to all sorts of things, such as astronomical cholesterol levels and, as in my case an enlarged heart. I already had a dodgy heart valve - a legacy from when I was thyrotoxic due to Graves' - so now I am almost disabled.

    If you were to ask me which is worse, hyper or hypo, it would be really difficult to give an answer. I'm sorry for you that your own family don't seem to understand, that's a great shame because although they may be on the opposite end of the spectrum they should appreciate that how you are is out of your control.

    The carbimazole is not what affects your metabolism - it is simply blocking the action of thyroid peroxidase enzyme which make the thyroid produce T4 and T3 which your body has to have to function. It is the reduced thyroxine production from the thyroid which affects the metabolism. I put on a lot of weight but stabilised afterwards, because my underlying metabolism was OK once I stopped the carbimazole.

    Unfortunately the graves' came back so it was a rollercoaster ride for years. So by the age of 37 I had had TWO thyroid operations - the second was a total. It was unavoidable because I was so hyper I went into thyroid storm and ended up having hallucinations, and put in a psychiatric ward, not a good experience. I do hope that you can be stabilized, once that happens you should find you can lose the excess weight gradually.

    How often we hear that families do not seem to want to understand or sympathise - I suspect it is much easier for a stranger to see the real picture because they are no clouded by all the emotional trappings - I am sure I made my family's life a total misery with my volatile temperament when I was hyper! Thank goodness that we have a forum like this to let off steam! It may not make us better but it is easier to bear the ups and downs of a thyroid sufferer if we can have a hearing ear.

    I sincerely hope that you - and you, debs793 - can go into remission with the drugs rather that having to undergo a TT, but whatever happens, there is hope always.

    Here's hoping for the best for both of you

    Marie XXX

  • Marie, thanks for your reply and concern. i have it on authority by three endos that weight gain due to metabolic disorder is common with use of carbimazole and often as you said does improve once the stoppage of it has occurred.

    My mum has been hypo for 20 years and has been on the same dose and apart from having low B vitamins and dry skin has had no problems. My sister has been up and down with her doses and does suffer with depression but she always has done and has only had hashis for about 10 years and she is in her 50s. She doesnt help herself though as she is a heavy drinker and smoker and has binges of full on gym membership followed by the worst diet ever. They have both seen more GPs and Endos than I ever will.

    My issue was that both were relatively well and neither worked ( one retired and one well kept by her hubby) and yet they thought that as a mother of three kids and working a difficult professional job that I had life easy. They had no empathy and thought that I was exaggerating when I was admitted into hospital on several occasions. It was 5 years before I was diagnosed. Plus I pay for my meds now and they as hypos do not. I never displayed my thyroid rage to them but my father who is fit as a lop was always badly behaved. So now I no longer have a family. My mum says I am selfish.

    Maybe I am or maybe it is just that now I know it helps me to remain calm and be surrounded by my real loving family not cackling hyenas.

  • What a nightmare. You have to be with people who can support you. Such a shame that they don't. No, you're not selfish, that's my view. They are. I know how awful it is to be hyper, and what you need most is reassurance that you're lovable at a time you feel most unlovable. So, in that respect, they have done a very poor job.

    I thought I would mention that I had problems with my mum when I was hyper, too, I think because you don't actually look ill (unless you know what to look for) they can't get their heads round it. When you are hypo and have a puffy face, yellow skin, eye bags, swollen ankles, it's much easier to get sympathy than when you are thin and (apparently) fit. They just don't see any problem.

    I did actually ask her not to come and see me because I found it so stressful.

    I agree that it seems an injustice that you don't get free scrips while they do. The criteria are really weird, my hubby has had posriasis since the age of 20 and is getting worse and worse, he has an absolute battery of stuff for his skin, and his psoriatic arthropathy, yet he had to pay for his scrips until he reached 60. There are so many chronic and incurable illnesses which do not qualify.

    Marie XXX

  • Yes Marie you are so right about the prescriptions.

    My mum actually commented how ill I looked. I do get puffy skin and black rings through lack of sleep. Dry scaly feet, high blood pressure, thinning hair, spots, googly eyes, sweating, swollen joints plus I look like the walking dead most days. Then there is the ageing factor. I shuffle around with no energy and exhaustion.

    I also am no longer a fan of people as a rule. When I get visitors I like it when they go and cannot be bothered with gossip and friendships over the school gate. I have never put up with fools but now I have a hard time not telling them that.

    :)

  • I understand and sympathise. I thought I'd mention I am going to put a picture of myself as a blog showing what I looked like when I was suffering with Graves' at the age of 15. This was after already having two years of treatment since I was diagnosed when I was 13.

  • Marie I have learnt so much over t he. Last two days , I was seeing strange things for a few nights befor starting treatment , I was so relieved ( and sad) to hear your story . I'm not back at that point but I am also not far enough away from it . I'm off to my GP tomorrow , I saw my 1st endo on feb 15, th he wrote down to reception staff that my next appt should be 8 weeks . It came through lost for 19 th may -nearly 15 weeks later !!!

    Hence tomorrow's visit to GP. .

    I felt very annoyed , shocked , upset etc to learn that there was no quick fix. However I now feel empowered with knowledge , advice nd listening ears from this website . So thank you thank you thank you, xxx

  • I really wish there had been information - any at all! - when I was first diagnosed. Knowledge is power! I've put a photo of me in 1960 when I was 15 and very obviously had Graves' and TED.

  • Graves cause liver problems. My ALT was 62 (range <40) before carbimazole. After 10 weeks on carbimazole it is now 30.

  • Hi I was diagnosed with hypert in 2015 been on 5 mg carbimazole and a beta blocker.  Endo has now suggested RAI or surgery, which I dont want, but in the mean time saw my hollistics doc and she instructed me to juice spesifics every day for my liver as this apparantly is damaged now due to the Carb. The recipe to build your liver up is as follows

    1 x green apple

    1 x knob of fresh ginger

    2 x carrots

    2 x celery stalks

    1x raw beetroot

    1 x whole lemon including skin

    Mix and add a teaspoon of green superfood powder

    I do this every morning for breakfast, feeling well. My bloods showed that my liver function was highly elevated. Went for bloods today, results tomorrow. Im in Australia and will post update here if you'd like

    All the best to you x 

  • Hi,

    I was diagnosed with graves in nov 2012, put on carbimazole had terrible reactions, a+ e 3 times. You really need to have blood tests every 6 weeks. From what you are saying it sounds like the dose isn't correct. I was given the carbimazole in the uk moved to US had the reaction in the US. They said as I had reacted to the carbimazole I would more than likely react to the propranolol so I had RAI in dec. I'm now on levothyroxine but still don't feel normal, although my bloods have come back 'normal' feel anxious, insomnia, like I'm loosing my mind sometimes, brain fog + I know my medication needs to be adjusted. This site has made me realise you become very in tune with your body + when things don't feel right they probably aren't. Seek help from GP or endo + make sure they really listen to your symptoms rather than just the blood results best of luck x

  • I was diagnosed with Grave's in December 2011. I started on 20mg and my heart was racing so hard I was passing out in the street so I took propranodol. The dose was increased to 40mg six months later and I started to feel better. At the moment I feel as if I am healthy. I sm back down to 10mg, off the propranodol and according to the doctor back to normal. I didn't feel as bad as you are feeling but maybe your dose needs to be increased. Compare to some,I feel lucky. Just to let you know there is light at the end of the tunnel.

  • Taht is so reassuring to hear, thank you, propanalol definitely helps, I sem to be on a big dose of it tho. 180 mg twice a day, slow release, but I started them back up yesterday and it dies help . Thank you for responding x

  • Just for the info of all the hypers and Graves sufferers can anyone tell us of anyone being totally cure on meds alone?

    I am guessing that most who are no longer hyper are now hype due to surgery or RAI and on thyroxine or similar?

    I would love to hear of just one person who can with hand on heart say they recovered from Graves.

  • I was OK after a partial thyroidectomy at 18 years of age, for about 12 years, but then I got a 'Toxic Multinodular Goitre' so they did a total after trying to 'cool it' with carbimazole. I'm not sure whether the second was Graves' or not, because I'm not sure if Graves' can cause a multinodular goitre.

    So, to sum up, I was pretty good for about 12 years - after that, I'm not sure if it was a recurrence of Graves' or not. Don't know if that sheds any light at all!

  • Ah sorry about your TT op but I meant has anyone actually taken meds then "got better" without any surgery or RAI?

    I have yet to find anyone who has Graves who has never had a resurgence or become hypo or further treatment.

  • My cousin was diagnosed with Graves in 2004 and after one year on Carbimazole and Beta Blockers went into remission and has had no trouble at all since then. I am really encouraged by this as it seems quite rare to recover, especially as I too have just been diagnosed with Graves. My TSH is 0.01 and T3 is 12.8. Are these results very bad? I'm really worried about taking the medication as it can cause serious reactions.

  • No not that bad compared with some I have seen. Mine were worse before diagnosis. What is your T4?

  • I don't know what my T4 is. The blood test results from the GP only ever seem to show TSH and T3. Is it important to get T4 tested as well?

  • All very interesting personal stories shared so we can take a crumb of comfort in accepting that we are not alone in feeling so ill some days.

    I am thinking like hotfeet and really not wanting either RAI or surgery, as I feel that both treatments are just too final a step for me to take. I am very much older than hotfeet

    being 70 years old I have been taking Carbimazole for 2 years now and having regular blood tests. I have to admit that I have less nasty symptoms than I had initially, but still far from right.

    I was put on the hospital Thyroid Register and then handed back to my GP care by a Registrar I saw at clinic in October 2011. It was not a good visit as he was clearly not happy that I would not do as I was told and have either the RAI or surgery that he was insisting that I should have. He was quite rude and I did feel very intimidated but I stood my ground and refused both treatments. He wasn't happy but then neither was I, this 2nd visit was totally different to my first one when I was seen by the Senior Endo who could not have been nicer.

    The second appointment was not a good experience at all. I was not happy to be told I was being handed back to the GP (who has told me previously) that she knew absolutely nothing at all about how to treat my over active thyroid! I was placed on the Thyroid Register and have regular blood tests where the results have gone to the GP for last 18months.

    Now it is decision time coming up for me! Today I have received a letter from the Senior Endo to inform me that he has sent a letter to my GP and I should contact the surgery to discuss what he is suggesting should take place regarding my future treatments. I still am not wanting to have either RAI or Surgery. I want to continue to take the small dose 5mg Carbimazole but he did tell me in April 2011 that this medication was only normally used for around 18months.......??

    I hope that everyone will all have a good weekend, at least the weather is meant to improve so that can only be a good tonic for us all.

  • ah bless you they all seem a bit of a nightmare to be honest

    am concerned of long term use of ppt for liver and understand why they want to remove thyroid but rai sounds like it can do as much if not more damage to the liver and general anaesthetic hospital stay and then long term use of thyroxin does nt sound like its a win for the liver or general health either!

    would also like to know if anyone became better without any intervention other than drugs and stayed that way?

    weather grim here but hope for sunshine tomorrow

    hotfeet

  • Yes my endo said 18 -24 months is the max for younger patients but for older patients they often give it for longer. I would ask for a second opinion and do not be pushed into something you do not want. Good luck

  • Ok thank you greenginger. I am also waiting with interest to see if anyone answers your question as to whether they have been treated successfully with medication alone????

  • I am just asking someone on another thread but they are the first with a good long standing story so far.

    i think it depends on if you have thyroiditis, Hashis, Graves or whatever. (Some Hashis are hyper before being hypo). If it is Hashis or Graves then I do not think it will go away although there is differing opinions on here. I have seen all sorts of stuff about yoga and diets and so on but no one doing all these things seem to have been 100% cured. I hope someone proves me wrong.

  • My blood test come back normal but I still feel bad my gp said I have to wait the ultrasound report can some1 help me I don't know what to do next.

  • I am hyper although feeling great after coming off carb after two years I know someone who was better for ten years and only re occured cos of very stressful occurrence so there is hope everyone don't give up

  • I am also Graves it was all going well 10 months of carbimazole and all bloods normal for 11 months then last 4 weeks feel it all coming back so trying diet and adrenal support as at moment blood tests are still within normal limits Up all night last night obsessing stress is my trigger so hopefully holiday in 2 weeks will help good luck x

  • I was diagnosed as hyper in January .. I was on Carbimazole but I've been feeling pretty rotten and had itchy skin and a constant rash .. My endo has just changed me to a different medication called propylthiouracil.. 100mg per day .. Has anyone heard of this ? Thanks Mandy

  • yes it s what i take i was diagnosed hyper feb 2012 and put on carbimazol and betablockers the carbimazol caused a crash of my white cell count so had to be taken off it and put on ppt

    have been fine on ppt but initially it caused a rise in my alkalysing phosphate levels so had to have a liver scan

    thankfully all ok

    i take 1 50mg tab daily tried to reduce it to half a tab but after 2 weeks skin on face became very dry and scaly so increased to 50mg again

    back to see endo next week

    hotfeet

  • Just an ongoing journey but we must try to think in a positive way and accept that being hyper is not easy. I have learned to listen to my body and do what I can on the good days and rest when I am able on the not so good days.... Good Luck everyone. Have a happy day today.

  • In response to greengingers question: research has shown approx 50% of people with Graves disease will be cured with a 12-18 months course of anti-thyroid drugs. Which means that half the people who stop carbimazole (or PTU) will find the overactive thyroid comes back. If that happens the chances of another course of drugs curing it are very slim. Which is why radioiodine or surgery is recommended at that stage. However if your overactive thyroid is caused by a "toxic" (overactive) nodule, then drugs will get it under control but never cure it , so once under control radioiodine can be given. Hope that helps explain why people have different treatments

  • Hi the last time I was at the endos I asked about these figures as she was mainly in research and the labs before being drafted into seeing patients again.

    She stated that the current statistics for Graves is 63% of people needed further treatment and of the remaining percentage many were found to have a nodule or other issue which gave a false reading.

    Plus as you have stated treatment of carbimazole for a second time has only a tiny chance of working.

    Hence from that it seems that carbimazole is a stop gap to other decisions for most of us. But I would rather know and be prepared.

    All the best fellow hypers!

  • Hi Spring 13, to be honest I've felt fine on carbrimazole, been on it for the last six weeks like you (T4 had soared to nearly 70) now down to 26. Put on half a stone..... but needed to..... feel calmer, sleeping better but would like to reduce dosage as levels come down feel that may be a battle x

  • Hi there, I've just read through your post. I'm currently on 40mg carbinazole daily with 40mg propananol 3 times daily. I've got graves disease (very overactive) and been fighting with it for almost two years. I had radio active iodine 1 month ago and apart from 2 or 3 days of feeling ok!!!!!!. I feel absolutely awful my recent bloods showed that i was overactive still. I'm naturally a very confident active person, very fit and not phazed by anything. I was started on several different anti depressants but after having several of my posts answered on this site I now believe them to be a waste of time as long as the thyroid is active or even underactive. Myself, i feel let down by the people treating me, i dont know what the next step is regarding my treatment. I've been back to GP this morning.....a new one!!!!!. More blood taken...?????

    So if it sounds like i'm ranting a bit, i am...lol

    I've read loads of comments from men and women regarding thyroid issues, as a male a didnt even realise what it was and i'd only heard of women that had problems with it. I dont think that my case is the norm but it certainly isnt the only horror story. This site is certyainly good for understanding, not just for the patients but also freinds and family. Keep fighting!!!!!

  • Hi dazzonny, it's such a confusing thing , I have been back to my GP also today , more bloods done. I'm alive with energy sometimes but feel awful an d exhausted, confusing state...... It's good thread your story and I agree this sites really the mst helpful thing I've found yet. And good to rant st lol.

    I'm planning on now avoiding iodine treatment and soon will start looking at foods that may help. I have started walking/running to serif it helps. You're right ! I have only heard of a couple of men with graves or hyper. Another oddness about this stupid illness. I will try however to embrace and not get to stressed. Wishing you luck and good health. For the future xx

  • Ok a positive story but not mine last week at work someone asked was I ok as I looked terrible ! Turned out she had graves 10 years ago had block and replace and has now been well for 8 years as she said as I am well I didn't look for support on Internet x So there are good stories and long term health with meds alone x

  • I was diaginozed 18 maths ago with overactive was put directly on 15 mg carbminazole and 20 mg propanadrol ,I first went to docs with weight loss shaking sweating not sleeping proper now I have put over 2 stone on am always tired and have no motivation to do anything! Doc has reduced my carbminazole to 10 mg and put me on a 80 mg slow release propanadrol for palpitations and irregular heartbeat,I personally think I've gone underactive but doc said I haven't I'm really fed up of the weight gain and everything that comes with it! I'm not sure how it works would I need to be changed to thyroxine instead ??

  • Debs793 I too have been taking Carbimazole 20mg for overactive thyroid (now confirmed as Graves) since May 12th. I am feeling well on it. Have you had blood tests done? I have had them approx monthly so know on May 12th T4 was 46 (range 10-20) and TSH was <0.05 (range 0.2-4.0). On June 20th T4 was 19 and TSH <0.05 (felt fantastic at this point). On July 18th T4 was 11.8 and TSH 0.38. I knew from how I felt (heart rate down, palpitations reduced, sweating reduced, sleeping better, able to run) that I was in range at end June. However I am sleeping very heavily now and getting puffy eyes so suspect I will be hypo by end August. Carbimazole suits me and I have had minimal side effects (sore head, itchy palms) which have all now resolved. My endo wants to keep me on 20mg and add in thyroxine if (when?) I go hypo - I have other ideas about that but that's a discussion I will have with him in the future!

    Have you been having regular blood tests to monitor your response to carbimazole? You should be getting them every 4-6weeks. Go back to your endo/doctor to discuss your symptoms (which sound like a recurrence of the hyper state in spite of carbimazole) and request another set of blood tests - TFTs, FBC, U&E, haematinics (B12, folate, ferritin) and LFTs. You may need an increase in your carbimazole dose but you also need to know if anything else is happening. In the meantime you probably need to supplement with B vitamins (esp B12 and folate) and Vit D3. I take high dose bit b complex, high dose D3 (both vita optics), a multi-vitamin and mineral (tesco women's health is one of the few without iodine in it), omega 3s, N-acetyl carnitine and healthspan's Super20 gut bacteria on a daily basis.

  • I've literally just stated taking carbimazole after not wanting to! 5 mg a day. I can safely say with my hand on heart that you need to treat the root cause and not just the thyroid! It all starts with auto immune, so the adrenals. If you can heal them or at least eat an auto immune diet this will help remission and possibly even a cure, depending on a lot of factors. It takes a lot of hard work and commitment, I have cut out wheat, dairy and sugar and hardly drink alcohol at all. Eating wholesome organic food also. No caffeine either. Have a go and see what you think, the autoimmune diet that covers healing the gut also can be found online. I have some sheets on it too. I don'y even eat potatoes. I want to get better so I will do anything I can! I also see a kinesiologist. The carbimazole is starting to make me feel crappy and give me bloating and acid indigestion plus more tired! So I know I want to be on this for as short as time as possible!. Hope this helps. Please ask me more if you'd like. Maria :).

You may also like...