Hi, I was diagnosed with Graves' Disease in August 2017 and was put on carbimazole to treat this, in September 2018, I was told that my thyroid levels were normal again and was advised to stop taking my carbimazole, which I did!
However, around about a month after I came off, I noticed all my old symptoms were returning and, they've continued to worsen as time goes on. I met with my endocrinologist last week and they agreed that my thyroid may be overactive again but also suggested that carbimazole may not be the best way to treat my thyroid and should consider thinking about other options, such as radioactive iodine and thyroid removal (something i'm not too keen on as I'm only 21 and feel I'm quite young for this surgery). I was just wondering; if this is a normal thing to happen after coming off carbimazole treatment and just any general advice with what to do about this new information!
Thanks!
Written by
erinkelly98
To view profiles and participate in discussions please or .
However, if you have Graves disease and eye problems, they can be made much worse by RAI as the Graves antibodies do not die with the thyroid and go on to attack other things - generally the eyes. So talk to your endo about that before making a decision. You can stay on carbi for years - no need to commit to anything yet. If you go ahead, you'll be hypo for the rest of your life. It may be necessary eventually, but perhaps not yet.
Definitely do not rush into anything permanent. I have had Thyroidectomy and bitterly regret being so hasty but my endocrinologist was hopeless.
You could try another year or so of carbimazole, especially if you tolerated it well. Of course the medical profession will suggest a permanent solution. It is easy for them but lifelong for you and a year was not long enough to give it before stopping. Ask to try again and stand firm. Good luck.
Thank you! My endocrinologist did suggest that I was really really young to be having a thyroidectomy, but did say it could be an option in the future, so I think I’m gonna try and stick with carbimazole as long as I can! Thanks again!!
I had RAI last year with Graves and im still not settled on the T4 drugs as now Hypo, there is allot of information on here regarding the fact T3 or Natural Desiccated Thyriod drugs arent readily availible on NHS currently and ive had issues even getting bloods to check myself so lots of us doing privates and getting results on here. Definitely wish I had known more before going ahead at 34. Plus I was wrongly told the Graves is cured after, once my bloods were in range they discharged me, when I still diddnt feel well. Ive still not managed to see Endicrine since, Graves can still appear in you antibodies for life which I have currently have too.
Obviously ive been unlucky this year, your doing the right thing asking on here for advice and just make sure you research it all so you can make the best decision for you. Wishing you well x
There are 2 options now for you: 1) To restart Carbimazole and you may remain on a small dose of Carbimazole for a long time may be 5 mg for another 18 months and see what happens on withdrawal of carbimazole 2) To have a more permanent solution i.e. Radioactive iodine (RAI) or surgery . I would not advice surgery at present. You have to understand that radioactive iodine is also a permanent stoppage of thyroid function by another means.
You will have to go on thyroxin treatment after the treatment with RAI. A lot will depend on what you think of taking carbimazole for another 18 months and then may be requiring to go through RAI later or RAI now. Only you can decide.
Once you have recurred on discontinuation of Carbimazole, your hance of recurrence is high especially if your antibody levels are high.
If you are a smoker, stopping cigarettes increases your chance of remission, but being young, the chance of remission is lower than older people. SO you can see, the picture is very complex. Talk it through with your endocrinologist. Keep an open mind.
Thank you! I think going back on carbimazole does seem like the most sensible option just now, I didn’t have any adverse reactions to it and I’m not planning on getting pregnant any time soon either, I’ll also keep the smoking thing in the back of my head! I’m not a regular smoker, but do tend to have one or two when I’m drinking, thanks again!
I think go back onto the Carbimizole, I had the same at your age and I was on carbimizole for two and half years and you have to come off it gradually and see what happens. You might have come off too early. i was fine then for 20 years and now at 46 it has returned but I was fine for all that time and I am trying again to win the fight with Carbimizole. Good luck. My endo has also put me on Vitamin D and Selenium too.
Thank you! I stopped at a 5mg dose, so maybe I didn’t come off of it gradually enough, but I think going back on it is the most likely option. Does vitamin D help at all with thyroid problems? I’ve got a box of tablet in my house but never take them
I have been on carbimazole since 2015 and looks like Im not going into remission. Started on 40mg. I have not had the opportunity of doing a test run of stopping it completely because once my dosage is reduced to 5mg, all the symptoms come back and my numbers completely go out of range. Had been advised to stick with carbimazole for two years hoping remission would follow but this hasn't happened. Have been advised to consider surgery because my doctor says RAI might not be suitable for me because it may cause my eyes to bulge. So am yet to make the decision. It a tough one. Maybe we will get help here of pros and cons
Thank you! So sorry to hear that you’re going through a similar situation, my eyes have been completely fine despite the rest of my symptoms showing again, something I think is quite confusing, but yeah, hopefully both of us will get the best possible treatment! Good luck x
I was diagnosed with Graves’ disease 2013. I took Carbimizole with triation for a year and went into remission. Other than The Carbimizole and Vitamin D I didn’t change anything. I was an anxious person with an over busy, stressful lifestyle.
10 months later I relapsed. This time I did block and replace - although I think Carbimizole with triation would probably have been as effective. However, I also looked at my lifestyle- decided what was really important and stopped any ‘busy stuff’ which I really didn’t need or want to do. I did 6 weeks completely gluten free in case a leaky gut was a contributing factor (which it often is with autoimmune conditions) and now mostly avoid gluten (90/10 %)
I took a meditation and mindfulness course and now meditate every day (I use Headspace App). Of course there are always external factors outside your control that cause stress, but I feel so much more able to cope with them now.
I am still in remission and feel healthier and happier than I have for years.
Remember Graves’ disease doesn’t start and end with the thyroid. It starts with your immune system going haywire and attacking your thyroid. Destroying your thyroid doesn’t address that underlying problem.
So try to do everything to support your immune system, healthy diet, exercise, plenty of sleep and support your mental health.
I am a lot older than you (54) and as someone else said people diagnosed older are more likely to go into remission, but doing these other things may well help and worth a try.
Thank you so much! I’ve been veggie for about 15 years but have been trying to look into eating less gluten as I’ve read a couple of times that it can affect your thyroid, I do have quite a busy life but am trying to dedicate more time to meditation and mindfulness because I know stress is always going to be a big factor in autoimmune diseases, so I’ll keep pressing on with that and hope it makes even just a wee bit of a difference!!
Hi I got diagnosed with Graves Disease back in 2013, my consultant at first put me on carbimazole. It worked really well for about a year and I had no symptoms. I then told my consultant I was getting married. You are not allowed to get pregnant whilst on carbimazole so he switched me to another drug called propythiouracil. I personally hated the drug as it gave me tons of side effects but I would suggest you try that before looking at routes such as the radioiodine or an operation. My consultant told me it is recommended to try both drugs for at least 18 months so it may be yours took you off too early. When the propythiouracil gave me unliveable side effects I told my consultant I wanted to go back to carbimazole and he refused so I went untreated for a year until I could get referred to a different consultant and after that year I got put on carbimazole again but I still had to decide between the op or radioiodine.
I actually chose the op, I’m 29 and wish to start a family in the next few years and I don’t feel there is enough research on radioiodine for someone who has not yet had kids to determine how safe it is. Anything which has radioactive qualities has a half life so it will always be in your system, it will just get weaker as time goes on.
I did suffer a complication with the op with regards to my parathyroid glands being damaged (they regulate calcium in your blood) and had to stay in hospital for 10 days however the surgery site now looks amazing. I’m now two weeks and three days post op and there’s a very thin scab over the surgery line, the line itself will be barely visible once that scab is gone and with bio oil or cocoa butter will be pretty invisible so I wouldn’t worry about scarring. My surgery site was stapled for five days, I don’t know if that makes a difference. They can test for how likely your vocal cords will be damaged as well during surgery. I was told mine should survive intact and I have full use of my normal voice now, I just struggle to raise my voice for singing because it’s still quite uncomfortable. I know I’ll still be on drugs for life but it’s safer to be underactive then it is to be overactive.
Graces is a lifelong condition if you do not elect for radioiodine or surgery. You can beat it down with pills but it can rear it’s head again at any point.
It's a life long condition even with RAI or surgery, because it's the immune system not the thyroid that's the culprit. Someone just 21 years old, I would advise to do everything in their power to hang onto their thyroid, unless their life is at risk from a thyroid storm.
Once the thyroid is removed it effectively removes the Graves’ disease. Graves causes the antibodies in your blood to attack the thyroid. That’s why medication for it can affect your white blood cell count and they warn you to get blood tests when feeling unwell.
Do you mind me asking why you are so against having the thyroid gland removed and trying further medication?
The medication used to treat graves is only prescribed for limited times because it can affect your kidney and liver function. Due to the dosage I was on I had to have regular tests for the function of both my liver and kidneys.
The Levothyroxine they give you after the surgery is much easier to manage, it’s one pill in the morning half an hour - one hour before food. It’s less hospital appointments, I was having to go to the hospital for appointments and have blood tests every month before the op. Now I have one appointment 5 weeks post surgery for a blood test with an appointment to discuss the dosage of levothyroxine a week after that and then I’m home free to get on with my life and only having to go for yearly check ups unless I feel I need a dosage check.
I personally feel making the decision to have my thyroid removed is the best decision I have ever made even with the complication I suffered. My heart, kidneys and liver are no longer under strain, I already have more energy, I look healthier, feel healthier. I’ve been incredibly unwell for the last 6 months dealing with Graves and struggled to do anything, I now feel on top of the world again and once my neck fully heals it can only get better
Because I had Graves Hashis hashitoxicosis eye disease and cancer and it was appallingly managed and removing my thyroid ruined my life, and if it were possible the 'cure' was worse than the disease. My eye disease went on for several years posts surgery and I ended up needing eye surgery on both eyes. It's brutal. Remission is a myth, at 21 years of age, i would not wish a thyroidectomy on my worst enemy.
I was aware that the radioiodine has been tested and it’s been found it can worsen or even trigger eye disease however I was unaware the operation was linked to the worsening or triggering of eye disease.
I’m sorry you have had such a rough time of it, obviously we all can only speak for our own personal situations and experiences.
I was lucky enough to not have any symptoms of eye disease caused by my graves but I know that I now won’t get those symptoms because there is nothing for the antibodies to attack so they will calm down and return to normal.
There is absolutely no guarantee that you won't get eye disease unfortunately as you can get antibodies at any time, some people get eye disease twenty or thirty years down the line. Surgery doesn't trigger eye disease, my point is it doesn't stop it either. My point to you, is it's very early days, I'd caution you from urging others into irreversible decisions as 25% of people never recover from a thyroidectomy or RAI. That means the loss of work, the loss of functioning, for some it means infertility, plus weight gain, chronic fatigue, diabetes, high cholesterol and the miserable list goes on and on. It is a very very serious operation. In a young woman, at only 21 years of age, it is very last thing I would recommend until all other avenues have been doggedly tried, and provided there is no risk of thyroid storm. Take it from an old hand at this, it is a very very very significant operation. And it's not and never can be a 'cure'. As i said, some can do well on levothyroxine for some years, some remain OK, and some run into serious issues at a later date.
Just to add - there is a genetic predisposition to Graves Disease.
You may need to look at your wider family, aunts, and uncles before anything becomes apparent. I had an uncle who I was told was " as he was " because of the war - years ago, nothing was as open as nowadays.
PS six month is very very early doors, I'm ten years on almost, and I honestly wish I'd known then what I know now. Graves is poorly managed, people are given too much carmbimazole longer term, when they can manage on a tiny, tiny, tiny dose 2.5mg or less, once a week and remain healthy for ever more. Often people who do well on levo initially run into major issues later on. My endo surgeon (who saved my life) said removing the thyroid is closer to brain surgery, the impact on the whole person and whole body is so profound.
I cannot take levothyroxine, I felt like I was DYING (I was dying!) and I now am in a very vulnerable situation of buying drugs online, with no prescription because NO ONE will help me. Like I said, it's is not a decision to take lightly and certainly not at 21 years of age.
Graves is an autoimmune disease and can't be removed - like a bad tooth !
It is in your blood, it's not removable. It tends to attack the thyroid and being that the thyroid is such a major, important gland the symptoms are considered by some to be life threatening.
The antibodies can come and go throughout your lifetime, diet and life style changes might help keep your antibodies at a lower level thereby causing you less symptoms.
I read Graves thrives on stress and anxiety, and that no two people present in the same way, making it very much a disease that we, as the individuals diagnosed, have to read up on it and ultimately become our own best advocate.
Hi Blairbear, I'm a little late finding this post but have been scrolling through to find someone who's had their thyroid removed. I feel like I have a million questions to ask you but can't even think what to ask right now! I've been taking carbimazole for over 18 months & it doesn't appear to be working. I'm now in a situation where I'm being offered RAI or thyroid removal, I just don't know what to do & looking online I see so many different stories. I know everyone is different but I'd like a realistic opinion from someone who's had either of these done, and what symptoms they were experiencing prior to thyroid removal compared with afterwards. Hope you get this message, you may not after 6 years!
SilverWeimy, You will probably get lots more help from current members if you write a new post of your own. There are lots of members who have experience of your situation. Just click this link and ask your questions. 😊healthunlocked.com/thyroidu...
A friend in her seventies has had Graves, but she has managed very well by changing her diet and has a low stress lifestyle and takes no meds which is pretty good going. Her father had had it in the fifties and he had his thyroid removed and had NDT for life and lived to be well into his nineties. She only eats organic food, no meat, but fish and eggs, some dairy (whole milk with lots of fat), lots of whole foods, veg and seasonal fruits and locally sourced flour from an organic mill and she bakes her own bread. This is not necessarily something anyone with Graves can emulate, but avoiding triggers is important. Also, look into taking acetyl l carnitine for hyperthyroidism - it blocks thyroid hormone at a cellular level.. look it up in relation to Graves.
Carbimazole DID work, taking you OFF it didn't work! They are obsessed with 'remission' and imho you will never get it, there is absolutely no reason why you cannot stay on CBZ for YEARS, many people get it under control and then stay on 2.5mg ONCE A WEEK for ever more, provided your liver enzymes are ok. I would strongly caution you against drastic measures such as RAI or surgery (I had a TT for graves, I've never been the same since). Other thing to mention is RAI aggravates antibodies so many people without eye disease end up with eye disease (Graves opthamology) as a result. I would get another opinion and make it clear at your tender age, thyroid destruction is not an option and you'd like to go back on CBZ, long term, titarate it until you are on the minimum dose required to keep it under control. They need to do regular TFTs AND all your antibodies.
Many thanks for that link to Elaine Moore - wish I was more computer savvy - would save me so much time, warbling on like I do. Currently self medicating with NDT - getting my life back and thinking of booking a computer course at the library - having said that been unwell for some years and maybe the library and or the free courses have now been deemed past their sell by date ?
Hi erinkelly98, I had a similar experience although I stopped Carbimazole earlier than a year of treatment because of unpleasant side effects and my hyper symptoms returned with a vengeance. I was in my 30s. My Endo offered a choice - RAI or the op and I chose RAI. Whilst I’ve had 20 years of feeling ok-ish since things are now catching up with me and I very much regret the choice I made back then.
Do the research. See more than one Endo. Google the risks of RAI.
I so agree, so many people are rushed into irreversible decisions, and live to regret it. The thyroid is the MOST important metabolic gland in the body. I've heard so very many horror stories, with so many people limping along with the appalling care for thyroid disease. Once it's gone, it's gone and there's no getting it back. I've no idea why doctors are so obsessed with remission, they don't take people off insulin and say 'whoops you've relapsed'. There are ways to manage graves, long term, that do not require destroying or removing the thyroid. It's a hard road being thyroidless and I really wouldn't wish it on anyone.
Sounds like you are hyper again which can happen when the dose is reduced or stopped. Iam not an expert but this happened to me and they increased the dose slightly. I don't think it's the Carbimazole not working it's the antibodies still attacking. To be on Carbimazole for about a year is not very long. I would get your antibodies tested and tell your endocrinologist that you want to go back on Carbimazole rather than take the drastic measures of RAI or surgery. If all else fails get another opinion.
I was 23 when i had total thyroidectomy. RAI was not an option as i was told i wouldnt be able to concieve - ask this question.
Go back on carbimazole a re try.
The op isnt pleasent and can still lead to issues after. As mine did. Do as much research as you can. Look at American research and websites as they treat the tthyroid with much more seriousness than tge UK
Hi - sorry to hear that your symptoms returned so quickly. What was your dosage of carbimazole?
I took 40mg per day for 6 months. Then I stopped.
The idea is that this high dose will put you in remission. I was in remission for 4 years. If you go into remission each time for a few years, then it's ok to just take carbimazole again for 6 months, which is what I did.
It seems that you're one of the unlucky ones that doesn't go into remission.
I would also be very reluctant to have surgery, and would flat out refuse RAI.
If it was me I'd probably try maintaining on a small dose of carbimazole that i would take for the rest of my life. The dose would have to be monitored and adjusted until you can take the smallest amount possible to keep the symptoms at bay. My endocrinologist told me that this was an option.
I am with Graves Disease having been diagnosed in 2003 put on Carbimazole and drinking RAI in 2005. I was given no alternative it was RAI or RAI and now I live with Graves Disease, thyroid eye disease and hypothyroidism. I hope, with the times, your treatment plan will be better than mine - it seems age makes a difference with regard to treatment options ?
Graves is an autoimmune condition and as such it is for life.
True, after the medical intervention of surgery or RAI, it may not now be called " life threatening " but living without a thyroid, or drinking a toxic substance that goes through your whole body, and burns out your thyroid, but leaves it in situ, may not be the way to go forward for you.
RAI is a quick fix 20 minute appointment in outpatients and a discharge back to primary care, where doctors do not seem to know what to do with you. It is the Nhs treatment of choice as it is financially, the cheapest option, but it is not necessarily in the patients best interest.
As I understand it, there are options to Carbimazole.
There is also a block and replace treatment.
I read of many people staying on medication for years - and not loosing their thyroid.
Professor Toft an eminent endocrinologist is not referring any more of his patients forward for RAI due to the apparent lack of care and support in primary care.
His article is available to read on this website.
Elaine Moore - Graves Disease A Practical Guide - is a very good book, there is also a website, USA based, this lady has the disease and went through RAI -
Your body is probably running fast, and suggest you get your vitamins and minerals tested, as detailed on this website, you need to be optimum in all areas, during this period.
Your Thyroid and how to keep it healthy by Dr Barry Durrant Peatfield is an excellent goto for all things thyroid and is written in a fun way to understand and follow.
I read that there are currently trials in place with an antigen to kill off the Graves antibodies - lets play for time to give you every choice option.
Why kill off your thyroid, it is not the cause of your unwellness but the victim of an attack from your antibodies ?
Can you please post confirmation of your original diagnosis confirming that you do have Graves disease antibodies - TSI and TRAB antibodies - thank you.
I've only just seen your reply to the OP two years ago.Very interesting what you say about the clinical trials re antigens that will destroy the Graves antibodies. Do you have any more info regarding this?
There are now further research papers available stating that the longer one is on AT meds the more chance of remission : first phase of Graves tends to be anywhere between 4 - ( I think ) 7 or 11 years - just a pity the NHS mainstream haven't received the memo and seen to think a 15-18 month window in O/P does the trick !!!
I'm sure these research papers are stored on here somewhere for you to find and were " aired " around a month or two ago:
Glad you have a forward thinking endocrinologist on your side.
Yes I was lucky with the NHS endocrinologist that I was referred to.However I did my own research before seeing him, and asked questions. It was only because I asked re long term treatment with carbimazole that I found out that this was an option.
He admitted that the reason they don't prescribe it is simply because it is harder for the endocrinologist. They have to monitor and tweak hormone levels very closely to find the right dosage of carbimazole to keep the Graves symptoms under control.
It's easier for them to just remove the thyroid and prescribe levothyroxine.
You are very young to be left without a thyroid gland. I’m in remission from Graves but when I was ill (2012) I discovered that a vaccine was a possibility - now it is being trialled - worth hanging on to your thyroid for. I reduced my thyroid antibodies by going totally gluten free. Don’t know if it will help stop Graves coming back again but it’s easy to do and I feel I’m helping my immune system. I don’t know if that would work though if Graves was active.
Should say I agree with TLVR and I took 40mcg a day for a year - after three months levothyroxine was added in - look up block and replace which was how I was treated.
Hi I just read your reply and I am so interested in how the thyroidectomy has effected you. I have been recommeneded it or RAI and i am not happy I've taken carbimazole for 2 and a half years it did initially go down then went back up. I started to watch my gluten and dairy intake and it is going back down again. Need to be retested to confirm this. I just do not understand why they suggest this treatment when you are still taking a pill for the rest of your life and it doesn't always solve the problem!!
In 1 word - finances - plus I don't think the Nhs have the answer for autoimmune thyroid diseases. Rather than sort out the disease, they remove the gland under attack ?
It's a bit back to front when you think about it, isn't it.
I read Graves affects a quarter of 1% of the population - so hardly mainstream.
However, there is now a vaccine being trialled so, with a bit of luck, not everybody needs to be disabled by a medical intervention that doesn't actually solve the problem.
Can I just point out that getting rid of your thyroid does not get rid of the Graves antibodies so they are still present and can attack other areas in your body. I’ve been on carbimazole for 3.5 years and intend to stay on it. In my view there is absolutely no point in swapping one set of symptoms for another. Good luck with whatever you choose
Here, here Karen. I have been on Carbimazole for 10 years and, as we speak, I have got myself down from 25mg to 10mg a day over the last six months. Whilst I am feeling good then I feel I am in control. If I feel I need a little more I will add 5mg and vice versa. I feel so intimidated by these medical folk that try to shame you into having RAI and they realise that is not the way I intend to go. Things may not be 100% but nice finally being at peace with your own body.
My plan should I relapse is to go back onto block and replace - I felt very well when I was on it. Id say that endos in the UK really don’t want patients on carbimazole for the long term. Supposed to be bad for you but call me cynical (and I am) I’d say it’s cheaper to give you RAI (just a little pill said one endo to me while holding an imaginary pill in thumb and first finger )
When I said I didn’t want it because I didn’t want to end up hypo she then went on to assure me that I definitely wouldn’t become hypo - that was my reason for not wanting RAI should I relapse. So well done to both of you for managing to stay on carb long term.
Yes I’m in UK and yes I’m on my 5th Endocrinologist 😉 the first 4 were NHS and wanted to get rid of my thyroid so they sacked me off when I refused they said I wouldn’t ‘comply’ with treatment so I see a private Endocrinologist who basically does what I ask him to 😂
Yes I am in the UK. Lost count of how many endocrinologists I have seen. Always used to have to wait about 4 hours at appointments and then people telling me off for not complying!!! I always complied, always. Then finally got to see a chap (because I complained about my treatment) at the same hospital but in the private wing! Used to have 5 minute appointment (always on time) and come back in 3 months, etc. Said I was an unusual case! All of them, without fail, wanted me to have RAI. I moved to the West Country and my endo said moving away from looking after my grandson would be an ideal time to have RAI!!! They don't give up. New endo. pushed the same. So, as it stands, I no longer see the endo as he feels I am in control but when I have a blood test I send him the results and he adjusts the dose accordingly (or he thinks he does!! ).
I'm also 21 and had my thyroid removed last October after a similar situation. I was diagnosed with hyperthyroidism in June 2017 and was put on Carbimazole.
My problem was that my body seemed to become immune to Carbimazole, my endocrinologist had never seen a case like it before . I started on a low dose of Carrbimazole, my T4 levels reduced and my symptoms improved yet after a while my T4 levels went back up and my symptoms returned so my dose was increased, again after initially improvement my levels went back up. The highest my T4 levels reached were 94! After months of going through these cycles and being on the maximum dose of Carbimazole with no improvent and discussing my case with another endocrinologist I was referred to an ENT surgeon and had a Toxic Total Thyroidectomy.
A few months on and I'm glad I made the decision to have the surgery. I'm now finding my condition much easier to manage, I'm in a stable dose of Levothyroxine and I'm feeling great for the first time in years! The recovery time wasn't that long at all and although my surgeon said my case was one of the more difficult thyroid removals he'd ever done due to the state it was in, I really do believe it was the best thing I could've done!
Now, I realise your case my be slightly different so you have to give it some thought, however I would say that if medication repeatedly doesn't solve the problem then a Thyroidectomy may be something to look into - as I said, I'm definitely finding my condition much easier to manage now.
A huge factor in my decision to have the surgery was the fact that I want to be a Paramedic and I'd already had to put of going to uni twice due to my medical problems and I couldn't bare the thought of not knowing if I'd be sucefully treated by the medication, after so long with it not working I felt I needed something definitive. At a different stage of my life I think I could've been more patient with the medication and maybe persevered with it a while longer, but in terms of my future I really couldn't afford to put off going to to uni any longer and I'll now be able to that next September.
Ultimately it's what's best for you. Have a think about our, talk to our family and endocrinologist. There's no harm in getting a second opinion either. I'd also say maybe see I you be referred to an ENT surgeon to have a chat and explore the surgical options, you may then be more informed about weather or not surgery is the right thing for you. Just because you see a surgeon it doesn't mean you have to have surgery!
hello again everyone, thanks so so much for all your advice and sharing your stories with me!! I’ve found it really helpful and it’s gave me a lot to research and consider!
Very grateful that you took the time to share and give me a wee hand, I wish all of you guys the best of luck with your thyroid and know where to turn to should I need advice like this again!!!
The best place to get advice is from your GP and your endocrinologist. They are the only people who have full information regarding your condition, access to your records and test results, and have your best interests at heart. They are also accountable.
The advice from your endo. is likely to be the best
Medicine is an art..... not a science. It is never easy, and everyone is different and needs to be managed as such
Hence, you clearly present a difficult challenge. It sounds as if your endo. has presented to you your options and intimated that a judgment call is needed.
I’m sure you will reach the right decision between you
Hello. I too have Graves Disease. I am using carbimazole. It is not like an antibiotic where you take it for a while and your condition goes away. The key to carbimazole usage is that you find a level which maintains your T4 at the higher end of the range. This takes some time and a lot of patience. I am currently taking A QUARTER of a 5mg tablet (it takes time to cut each tablet but SOOOOOOOOOOOOO worth it. The best advice i can give you is to go to elaine-moore.com and post your own specific query. Elaine is a doctor who answers individual queries. There is no charge for this. Quite honestly I do not know where I would be without Elaine and her forum. Any doctor and endo I have seen would have OVER MEDICATED me. I liaise with Elaine and she is an amazing source of reliable and trustworthy advice.
I am now functioning and living very well. I wish the same for you.
Hi! I too have Graves. Needed to have total thyroidectomy when goiter occurred and got out of hand. Personally I would have stayed on the carbimazole if I did not have that complication. Read everything you can. Many have remission when they follow diets. That did not work for me either-not sure I was careful enough. Do take selenium to avoid eye protrusion and if RAI is what you decide on be sure to have a month of prednisone first which also minimizes the increased risk of eye protrusion. Avoid smoke like it is the plague. You still have grave's whether RAI or TT. You'll know when it is time to change strategies if need be.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I got diagnosed with Graves Disease back in 2013, my consultant at first put me on carbimazole. It worked really well for about a year and I had no symptoms. I then told my consultant I was getting married. You are not allowed to get pregnant whilst on carbimazole so he switched me to another drug called propythiouracil. I personally hated the drug as it gave me tons of side effects but I would suggest you try that before looking at routes such as the radioiodine or an operation. My consultant told me it is recommended to try both drugs for at least 18 months so it may be yours took you off too early. When the propythiouracil gave me unliveable side effects I told my consultant I wanted to go back to carbimazole and he refused so I went untreated for a year until I could get referred to a different consultant and after that year I got put on carbimazole again but I still had to decide between the op or radioiodine.
Need some advise regarding Carbimazole, Graves disease
ONE YEAR ON FROM CARBIMAZOLE
Long term Carbimazole
Any advice? Can’t take carbimazole 
