Hi again everyone, I haven't been on for a while as I am on an emotional rollercoaster and can’t get off. I am now on carbizamol 20 mg a day and was diagnosed with graves. I am terrified and feel unwell - shakey, low mood, crying, palpitations been on carb for 12 days and 2.25 mg Bisoprolol. I have just increased the Bisoprolol as when speaking to the consultant she said it was low the 1.25 I was on. But didn’t say what I should be on. So I had to take tablets that were prescribed earlier 2.25 but i don’t know if this is the right amount - still have palpitations and shakey. When will this settle now I am on tablets - carb? I was upset to hear from one consultant that they don’t like patients to be on carb for long due to the white blood cells issues, If it goes then comes back. I can’t even think about the other options at the moment as it worries me. Another consultant said it is a 50percent chance of it going. But the first consultant went on about it coming back over and over that just upset me. Do people stay on carb for a long time? I feel overwhelmed and scared to research at the moment. I hear about certain vitamins I should take but don’t know which ones - I take vitamin d3 2000. I think my main question is if it didn’t go after the 12-18 month treatment or did and came back do people stay on carb for long periods of time- is it safe? Sorry if this is message is a little all over just loads in my head.
Hyperthyroid help: Hi again everyone, I haven't... - Thyroid UK
Hyperthyroid help
I think you will feel better & your thyroid symptoms will settle once you thyroid levels are stable & in range.
What are your results? TSH is not reliable you must be dosed by FT4 & FT3.
I think the doctors have worried you by saying you can’t stay on carbimazole….. I been on it over 3 years and plan to continue. In theory you can remain on it life long provided you are well on it.
The reference to white cells refers to carbimazole induced bone marrow suppression. It is very rare, less than 1% occurrence and it is a reaction rather than being caused by cumulative use, ie it has the same risk on first days as years later.
It seems that doctors don’t regularly monitor for this risk, yet they emphasise it up when convincing patient to undergo irreversible treatment.
In my opinion hospitals view monitoring hyperthyroid patients by specialists expensive & believe hypothyroidism as easily treatable by GP. It is more efficient to limit medication. There no scientific basis for the 18 month limit. In fact there a great deal of research saying staying on it longer gives better outcomes.
You have option of Radioactive Iodine, surgery or long term Carbimazole. Don’t be afraid to research about each option & don’t be pressured into a treatment until you are ready.
I don’t have Graves my hyper is from a toxic nodule - is not ever expected to go into remission and I was informed during a 2 min telephone call shortly after my first appointment that Radioactive iodine was my treatment plan. I would be get ting all the information about it in a letter. The letter consisted of a consent form and another patient leaflet + which didn’t answer my questions.
I put the form in a file & that was over 3 years ago.
nhs.uk/medicines/bisoprolol...
For bisoprolol it’s usually to start at 1.25 and gradually increase. Maximum is 10mg.
Propranolol is preferred option with antithyroid are you asthmatic?
Hi thanks for replying.It certainly upset me about the period of time taking carbizamol and that they don’t like people being on it long. I’m not asthmatic - I don’t know about the propranolol docs put me on the Bisoprolol I’ll speak to doc tomorrow about it. I have not had ft3 or ft4 done yet. Do they do this routinely? My first check will be In 5 weeks to see if the carb is working. Do you know of it goes into remission if I would still get symptoms of graves? I’m glad you put the form in a file 3 years ago - I am adamant at this moment that the only treatment for me would be medication. Hoping all the research finds something to help us all. Thank you so much for the information you gave me. I did wonder how many people continue to be on this medication and for how long after the consultant said they don’t want people on it long.
If you take Carbimazole you must have FT4 & FT3 tested. Otherwise the medication could drive levels too low. Measuring TSH alone will not give adequate information to guide adjustments of carbimazole dose safety. TSH is very unreliable & can take a long time to respond. In my case it hasn’t responded at all, despite having euthyroid levels for years. This occurs if you had prolonged hyper.
I was tested 6 weekly initially only once my levels remained stable did testing reduce. Do you have another test scheduled? My hospital used to send me blood test form to arrange my own blood test at practice - then a specialist nurse would phone to discuss results & adjust dose If needed.
Have you had folate, ferritin, vitamin d & B12 tested. These are often low when the Thyroid is abnormal.
Also try not to be worried about weight again. We are told that as weight loss is common when hyper, regaining it once on carbimazole is expected. It’s the change in hormones not carbimazole itself.
Often we have become accustomed to larger apatites so focus on adding nutritious foods. Remember not everyone is the same. I gained weight when hyper & lost weight when low in range & had energy to exercise & organise a better diet.
It can take a good few weeks to start seeing the benefits, I was on Carb for 12M and levels settled down but I have a follow up in a few weeks to see if levels are going up again or steady.
The white blood cell risk can make you worry but my nurse explained it is a rare side effect, but if you do get a very sore throat they can send you for a blood test to check your white cell count. I think they checked my white cell count at the start of treatment and it was fine and then if you do get a warning sign of an infection they should run a further blood test. Try not to worry it is a rare side effect!! There is another med called PTU but they tend to use Carb as it is cheaper and I think that other one can affect the liver, hopefully in a few more weeks you will start seeing the benefits 
Hi thanks for replying.The consultant said 12 months to me too. He also said that I would put weight on - did you experience this with the medication. I hope everything is fine at your checkup - and steady x thanks for the information on the white blood cells as it is really scary the way I was told. Thank goodness it is rare.
Hey, no they didn't say weight gain is a side effect and I didn't put weight on!
Unless you had lost a lot of weight due to your thyroid going overactive, then it would make sense to put back on the weight lost. Sometimes docs are not the best with words.
I was told that too - I had lost masses of weight. I thought to myself no way was I going t put weight on, I didn’t put on more than I lost but I went back to how I was before I got Graves. I eat a low carb (don’t eat much bread, cakes or biscuits etc and stick to veg grown above the ground) gluten free diet now and don’t have weight problems. The other thing no one told me about Graves was to keep an eye on my bones. People with Graves / hyperactive thyroid and who take certain medications are more likely to develop osteoporosis.
Unfortunately I only found that out when I developed osteoporosis which is a bit of a pain - so be aware of that and look into ways of looking after your bones - weight bearing exercise, eating the right sort of food and vitamins etc. there’s lots of info about how to do that online.
I should add my personal feeling is that consultants want you to have RAI or a TT and then they can get you off their list and back to your GP who may or most likely may not be able to keep you feeling well when you no longer have a thyroid gland.
To me it’s just a way of fobbing you off onto someone else - obviously there are conditions such as thyroid cancer where you really do need to have your thyroid gland removed but not just because they want rid of you.
I completely agree with your final 2 paras.
I have been taking Carb. for my Graves over 6 years now. If it works as quickly for you as it did me you will feel much better soon and might not need medication for your BP. Mine reduced as my thyroid levels came into range. Make sure you have a full thyroid panel every 6 weeks as you will probably need a reduction in your Carb. to stop you becoming hypothyroid. Your TRAb level although above range is quite low which is good news as you might have a better chance of remission. Mine was 16 and so I have decided to stay on medication.
I was diagnosed with Graves in 2012/13. My GP referred me to a consultant and prescribed 20mg for four weeks when I was to have more blood tests - that didn’t change much so I got a letter from my endo - who I hadn’t seen - telling me to increase it to 40mg carbimazole which I did. It took three months for my consultant appointment to come through.
At my first appointment I was then prescribed levothyroxine along with the carbimazole. That was increased every month until I was taking alternate 75/100mg daily along with the 40mg carb daily
Eventually when my bloods were where my doctors wanted them to be I went along for a consultation and all of my thyroid meds were stopped.
I have asthma so I couldn’t take beta blockers. I had to sit it out until the carb worked.Basically I felt pretty awful in the beginning, certainly for the first three months until I started on the levothyroxine started as well - then again every time my body needed an increase in levo I got what felt like hyper symptoms again - someone on here told me I probably wasn’t becoming hyper I was just needing more levo and that proved to be the case.
Right from my very first consultant’s appointment I was told that should I relapse then it was RAI for me and every time it was mentioned I told them that I did NOT want either RAI or a total thyroidectomy. You’re right, doctors don’t seem to want their patients on carbimazole long term - but - from what I have seen on here and read there are lots of people who do exactly that and I intended being one of them should I relapse. I used to have a few articles and other bits of evidence to back that up, unfortunately I’ve lost them now but if you do research you should find it for yourself.
Eventually when I was discharged I thought about it for a few days then I made an appointment with my GP and asked 1) did I have to accept either RAI or a TT should I relapse and 2) could the hospital refuse to treat me if I refused and the answer to both questions was ‘No’ I said that I got on well with carbimazole and I fully intended staying on it long term should I relapse. Obviously should that change then I would probably reconsider but until then I would want to stick with carb.
So try not to worry too much about what they try to persuade you do do at this stage - from what my GP said - they can’t make you do or take anything you don’t want to do or take.
I don’t know how you are being treated - there is block and replace which is how I was treated with the same dose of carbimazole and increasing amounts of levothyroxine until your bloods are where your dobpctors want them and there is titration where the amount of carbimazole you take is gradually reduced. It just depends on how your hospital deals with Graves.
Make sure your vitamin D, B12, ferritin and folate levels are well up in their ranges, that will help your thyroid. You might well end up having to order some private blood tests - I use home fingerprick tests - I got so totally fed up begging to have D3 and B12 tested that I just gave up and ordered my own from Medichecks.
So I’d say don’t expect too much too soon, try not to push yourself- get as much rest and sleep as you can - just be kind to yourself. You may not look it but you are really quite ill. I looked great on the outside because I lost such a lot of weight but inside I was a wreck. You’ve come to the right place for support and advice.
There is some excellent advice here from people.
I have had Graves for 18 years. I still have my thyroid and I take carbimazole (usually for periods of around 12-18 months) each time I have a relapse. I also had PTU when i was breastfeeding. It really isnt ideal, but for me it feels better than the alternative of TT or RAI. I happen to react quite quickly to the antithyroid medications, but i realise not everyone is this lucky.
I have seen quite a few different endocrinologists, having moved around to different cities and countries since I was diagnosed. I have noticed that the advice really differs widely according to who you see. I guess this means that you have to listen but also do a lot of your own research and ask a lot of questions.
I just wanted to add that Graves does make you feel overwhelmed and anxious and no wonder it is difficult to think through your options. This will improve. I am careful to not make any big decisions and i try to keep all colleague, family or friend interactions low key while i am hyperthyroid. You might not notice it at the time, but you just arent quite in your proper mind. But dont be too hard on yourself and trust that you will feel better able to cope with sorting through your health questions when the carbimazole does its stuff.
I usually have a pretty unpleasant period of low mood once I return to euthyroid status. So, technically you are 'well' and your health care providers will be keen to cross you off their list, but for me it takes another few months to feel ok. The psychological consequences of Graves are so rarely mentioned by specialists, but for me they have had a very negative impact on my quality of life. Hopefully just being aware that these terrible psychological highs and lows can be part of Graves will be helpful to people. Hang on in there! x
10 years since I was diagnosed with Graves. Been off and on Carbimazole when I have had flare ups (3). Sorting out my vitamin D and B12 issues has helped. Relax about the future and just get balanced now, things become manageable and I have learned what triggers my issues (viral infections), so know how to cope. I now know the downs/ anxiety go when I get back to normal levels. I found keeping a diary was useful and let me look at how things were going for me, you forget between episodes what it was like, so it was great to look back and be reassured it was going to get better and the same happened last time.
Hey there again Sam:
The most current research is stating that the longer the patient is treated with the AT medication the better chance there is of finding remission.
pubmed.ncbi.nlm.nih.gov/338...
Looking back I deeply regret having had RAI thyroid ablation - I knew no different in 2004 and simply trusted the doctors.
i think the endocrinologists work to the hospital guidelines and those may not be in all patients best interests and considering the back log they are currently being incentivised to clear there is likely undue pressure to discharge patients as quickly as possible.
Graves is a AI disease. there is no cure nor quick fix, and mainstream medical don't have any answers but by removing the thyroid gland they absolve their responsibility for your care.
My white blood cell count at diagnosis was 4 and I was made to worry about this, though didn't know what it meant or it's relevance.
Looking back I was made to worry about everything and that simply fed into my Graves making me worse.
Once the AT drugs kick in you should see a relief of symptoms, if you don't you may need the Carbimazole dose increased.
If Carbimazole doesn't suit you there is Propylthiouracil - ( PTU ) for short -
Conversely if you start putting on weight that is a sign that you maybe on too much AT medication as your metabolism has been slowed down too much and you will need your dose adjusted down.
You will likely need your dose adjusted several times as your T3 and T4 levels come back down into range and AT drugs should be adjusted accordingly so you don't fall too far down the T3 and T4 levels and end up hypothyroid.
Please get print outs of the results and ranges of your TSH, T3 and T4 as you go through this process and share them with forum members and we can explain what's going on for you.
Hi Sam I was diagnosed with graves about 8 years ago! Started on 20 mg carbimozole boing up to 60 mg over the years. I have just had TT 3 weeks ago as my levels couldn’t be maintained,while the surgery was major it’s the drastic change in symptoms I’m struggling with. I’ve gone from hyper to hypo overnight and have no clue what’s normal or who I am anymore. I’m currently battling with trying to speak to my endo. It’s a battle and right now I feel I’ve made the wrong decision going with the surgery. Time will tell I hope. Hopefully your levels will respond to the meds,I did put weight back on then I’d lose it and yo yo. Good luck xx
3 weeks is very early days, you are still recovering from the trauma of surgery. Do you have support? Have you been prescribed levo? Do you have another blood test scheduled.
Start a post asking for advice. Those who have had experience can offer advice on what steps you can take to ensure your health stays on track.
Hi sorry to hear you’re feeling like this. I was told by a endocrine consultant that it’s ok to be on carbimazole long term particularly if a low dose however I guess it’s still a bit unknown as most patients in the past have only been on it short term.
So here’s my experience I had all the symptoms you say I was diagnosed with graves and overactive thyroid in 2016 I was put on a high dose of carbimazole and propranolol for the palpitations the carbimazole was slowly reduced I was having bloods every 2/3months the propranolol was also reduced gradually. After 18 months they stopped the carbimazole I then went about another 18 months with regular bloods and all seemed to be stable with thyroid they were going to discharge me from endocrine but on my last appointment I had relapsed and the thyroid was overactive again so back on carb but a lower dose than before I was told I would possibly be on this for life. They don’t want to do the iodine treatment as I have young children and said surgery to remove thyroid would be my next option … I have seen a different consultant every time I got to my endocrine appointments at my local hospital and get told different things it’s very frustrating . So after being told I could be on carb for life (low dose like 5mg) I saw a new consultant at my next appointment who then told me they will try me off it again !!! Which they did and since being off it over a year ago I have the shakes I have palpitations also a vibrating feeling inside and twitching . I even went to a&e as I was so worried about the palpitations and anxiety but they did bloods and said my thyroid levels are in range … I had regular bloods (me always chasing these!!) and throughout the year my thyroid is in range apparently so even though I feel I’m still getting overactive symptoms they really don’t seem bothered and don’t think it’s to do with my thyroid !!
And then since the pandemic all my appointments have been on the phone .
And the last consultant I spoke to wasn’t very helpful at all.
I have heard of peoples overactive thyroid staying away after 18 months on carb I was also told 50% chance and after I had relapsed once I’m shocked they’ve taken me off it again.
My mum also had this many years ago and she had to have the radioactive iodine she thought it was very strange that they didn’t do something more permanent to help me.
Sorry if it’s not really much help just wanted to share my experience x
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