Hi, I’ve been on 5mg Carbimazole for nearly 2 years..
When I was first diagnosed with Hyperthyroidism, I also had Atrial Fibrillation, I took medication for this but after approx 12 months and after several ECG including 24 hour ECG, there is no trace of AF, so I came off medication for that and just take the 5mg Carbimazole.
I have never felt better, my anxiety is practically non-existent, I’m no longer over heating, in other words, the carbimazole has fixed all my symptoms.
Last conversation with Nurse, she suggested I come off Carbimazole to see if I will stay balanced but first they wanted a final TSH, T4, T3 and TRab blood test.
She rang with results and told me the TRab was 0.5 but that it should be ok to stop the Carbimazole, I asked what it was when I was first diagnosed, it was 0.5
So I suggested that if I stopped Carbimazole, it was inevitable that I would get all the the old symptoms back and I didn’t want to mess things up, as I’m feeling so well.
She told me not to worry as if I did, thry could give me radioiodine and that I would possibly be Hypothyroid and need to take Levothyroxine.
I asked what was the point of going through all that, when I was feeling great now and I didn’t like the idea of messing everything. up again.
She stated it would be the better option to have the radio iodine and possibly Levothyroxine as it was a “safer” medication.
I told her I’d discuss it with the Consultant when I see him in 3 months.
Since speaking to the nurse I’ve read a bit about Carbimazole and apparently if you’re older, I’m 76, it would be ok to stay on it for life.
So, after this long post, I’m just asking for some advice, if you think I’m doing the right thing by just continuing on 5mg Carbimazole and refusing the Radioiodine.
The nurse told me the choice was entirely mine…. but I’m no Endocrinologist, so I’d like a bit of advice from people who know more than I do…
Thanks if you’ve read to here and double thanks if you can offer any advice …
Christine
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What’s the lab range on trab? Lab ranges vary, Mine was 0.5 (>1) so negative. But your lab may be different.
Do you have your TSH, FT4 & FT3 results?
You might be able to reduce the carbimazole to every other day for example if FT4 & FT3 are not optimal.
I have a hyper nodule which is hyper with no autoimmune. I delayed RAI (indefinitely) you don’t have to proceed if you don’t want to. & you don’t need to alter your treatment if well. So I’m doing same as you and I’m mid 40s and on a much higher dose.
The dangers of carbimazole are the same now as when you started, but I feel doctors tend to over emphasise the very low risk to encourage you to agree with their suggestion.
Monitoring hyper can work out expensive, drs follow protocol which is accounting for overall cost and average outcomes for the majority.
The TRab result in the letter from the hospital just says 0.5 the nurse said thst was positive ………she did say that 0.4 would be optimal but 0.5 was ok.
TSH 1.27 (0.4 - 5)
T4 11.7 (9-19)
T3 5.84 (2.6-5.7)
Diagnosis :- Autoimmune thyroid disease (TSH receptor antibody positive at low titre) Multinodular goitre on ultrasound (no toxic nodule on isotope scan)
I was thinking that there may be a cost involved with me keeping on Carbimazole, the nurse was subtly guiding me towards the Radioiodine and the only reason I questioned that, was when I asked what my TRab was when first diagnosed and it was the same as my last blood test I.e. 0.5 so I questioned how stopping the Carbimazole would help as I’d obviously go back to square one, she then said that Levothyroxine was very safe, so I asked if she was saying Carbimazole was unsafe….she was spluttering a bit, they really don’t like being questioned.
Anyway, I’m totally convinced I’m doing the right thing now and thank goodness I came for advice on here xx
PS in addition to my other post, your TSH is no longer suppressed (mine was suppressed for years as obviously TSH receptor Abs block the receptors, creating a zero TSH - for some cruel reasons some incompetent docs try to get the TSH to rise in Graves patients, even when the T4 and T3 are hypo, often causing serious adverse effects) so something is shifting, watch you don't tip into hypo. However, your T3 is on the cusp of going out of range (this is the toxic hormone) so again, steady as she goes.
Have you had a full panel of antibody tests done? TgAb, TPO etc?
Yes, I think you'd relapse immediately if you came off, as CBZ tamps down antibodies as well as slows down the thyroid conversion of T4 to T3.
TgAb are thyroglobulin Antibodies (very high levels are indicative of cancer, mine were in the thousands and nobody checked, they missed 2 x 2cms tumours in my neck!), and TPO are thyroid peroxidase antibodies (commonly seen in Hashis, but tend to also be positive in 60% of Graves patients). The combo of antibodies gives some indication of how easy or difficult your disease will be to control. In complicated cases (like mine) RAI would be pouring petrol on a fire, as it can make the antibodies go crazy.
Yes, T3 at toxic levels is really dangerous, it's a very potent hormone. Excessive T4 is no picnic, but CBZ slows the conversion of T4 to T3 (as do betablockers) but as the antibodies attack the thyroid tissue it can spit out random and ever changing levels of both hormones. Also the inflammation in the gland can drive a lot of the symptoms regardless of blood levels (which is why it's insane doctors only look at your bloods to decide whether you are well or ill, or have achieved the unicorn of 'remission').
What nurse said about TRab is not quite right. 0 is “optimal” although having some measure is considered ok. I’m not sure they understand what antibodies mean.
Your thyroid function results are quite unusual because either raised FT3 or FT4, even if other is low, will usually lower TSH. Yours TSH is in range, which is why the Doctor has assumed ok & not adjusted treatment. Your FT4 is low @ 27% but FT3 is over range @ 108%. Ideally FT3 will be brought into range but doing so would likely lower FT4 too much.
Not sure the logic of stopping carbimazole when FT3 over range.
You’ve had an uptake scan (isotope scan) and you don’t have hot nodules so we can be confident the hyper is from autoimmune. giving more time allows possibility of natural remission.
There are several thyroid antibodies, NHS do not always test them all.
I think your gut feeling is correct and it's much better for you to stay on the AT drug :
Living without a thyroid still entails taking medication every day -
There are 3 recognised thyroid hormone replacement options -
Natural Desiccated Thyroid commonly referred to as Armour ( the leading brand )
T3 - Liothyronine :
T4 -Levothyroxine.
All of which were readily available from your doctor if Levothyroxine - the cheapest option - did not fully restore your health and well being - up until around 2000.
Currently, your doctor can only prescribe T4 - Levothyroxine with his second option being anti depressants - which do not work - if your need is for a fuller spectrum thyroid hormone replacement - which yours will likely be once the RAI slowly burns out your thyroid in situ.
The most precise and better option, if there need to be one, is a thyroidectomy as it's cleaner and not taken up - as is Radioactive Iodine - by other glands and organs within the body.
You will need a referral to an endocrinologist to assess your need for the more expensive treatment options and I'm afraid financial restraint rather than medical need appears in operation in certain areas of the country and we face a post code lottery with regards to our thyroid health and well being.
I was very well on the Carbimazole but told it was too dangerous to stay on longer term and had RAI thyroid ablation in 2005 and deeply regret drinking this toxic substance but trusted mainstream medical knew best - as I knew nothing -
I have been self medicating Natural Desiccated Thyroid for the past 6 years after being refused any treatment other than Levothyroxine by my doctor and hospital and also run my own blood tests as the NHS do not even run a full thyroid panel when hypothyroid - and I am so much more improved looking after myself.
Details on my profile page if interested - just press the icon alongside my name.
We do now have some research you might like to share with your medical team :-
All things Graves Disease - books and website - elaine-moore.com
P.S. Obviously - if you can afford to go privately and go to an endocrinologist or thyroid specialist who knows what they are doing - you will find a very different landscape.
I also wish I'd never had the RAI, I was great on carbimazol too, I was hyper, had Graves and eye disease. Like many I was told very little except you will become hypothyroid and take levothyroxine for life. Took it like a lamb to slaughter, I was a trained nurse and never thought to question or research my options. If only knew in 2011 what I know now 😪
At least we now have some research to validate the further health issues ( likely too many to list ) suffered by people who get this so called '''' treatment therapy '''' ?????
Do mainstream medical and those who dictate treatment options read the research ?
Quite why this toxic substance is still a first line treatment in what we presume a health care setting totally beyond my understanding -
I'll leave this here - it's deplorable - as is the treatment for primary hypothyroidism.
I’m so sorry that you were advised to have the RAI and now regret it.
Thankyou so much for replying to me, as I like you were know very little, although I have tried to read up and understand a bit more over the last 2 years… but the script was always to come off the Carbimazole after 18 months or so and if I hadn’t self adjusted… there were “other options” which I now know is to burn the throid away and go on Hypo medication. I’m not stupid though and when she said I was still the same TRab 0.5 as when I was first diagnosed, I thought how could I self adjust when the antagoniser is still the same. Then I got a real feeling the nurse was subtly guiding me into having RAI by saying Levothyroxine was a safer drug, until I asked was she saying that Carbimazole was unsafe… she flustered a bit at that. And when I told her I couldn’t see the point in messing things up, now I am so well by taking one tiny tablet a day. I was suspicious about maybe cost being involved and it looks like I’m right. Thanks so much for your advice ❤️
In an elderly patient with heart symptoms, these should all be being done on the NHS, private will cost a fortune, no reason the endo cannot do all of this (mine did). I'd ask the hospital first before spending all that money.
Thanks for the links, after reading them I am more convinced I am best to stick with the Carbimazole. I can’t understand why they would want to mess with something that is obviously a success, I.e. medication. Unless it has something to do with cost 🤷♀️
I'm no expert. However I've had 4 episodes of graves disease hyerthyroidism over 14 years. I have done research and I follow forums like this one . I've asked my endocrinologists lots of questions over the years. In conclusion, if it was me, would only discuss this with a doctor who specialises in endocrinology. Not a nurse. And if it was me I'd stay on the low dose carbimazole indefinitely/for rest of my life.
Thanks tattybogle, after reading the link, I am more convinced that I should stick with Carbimazole. I can’t figure out why they would want to change a treatment that is obviously working perfectly and risk messing it all up…
Just seems crazy to me …..
I shall dig my heels in, even though I felt slight disapproval from the nurse when I questioned the Radioiodine but I feel their is an underlying reason..probably financial as to why they would suggest the Radioiodine and Hypo medication.
in my opinion, the main reason they push definitive treatment is that within a few months it is pretty much guaranteed to remove you from the endocrinology dept's list. ( huge waiting lists , more expensive secondary care / consultant appointments , more frequent blood tests , keeping an eye on your liver etc )
to primary care with annual GP review on levo , which by comparison costs the NHS 'nothing much'.... one blood test a year (once on a stable dose of levo), annual cost of levo is approx £15 - £40 dependant on dose .
Definitive treatment can have a genuine quality of life benefit for those poor souls who find they cannot remain stable on antithyroid drugs and keep swinging one way then another every few yrs, or who reacted badly to them , or who feel lousy on them.
i think the only benefit of Radioactive Iodine over surgery (for the NHS! ) is that the significant financial costs of surgery are avoided, and overstretched operating theatre spaces aren't taken up (and ok ,yes ~ the risks of surgery itself and general anaesthetic are avoided ~for the patient ~but common sense tells me that 'nuking' bits of the body must also have some longer term risks)
'feeling well enough to bother being alive at all' is worth upsetting a few people to make sure you keep it that way...... whereas gambling on how well you might/ may not feel on levo is more like russian roulette.
when they discuss the risks/ benefits of definitve treatment , i bet no endo has ever mentioned to you that approx 25% of patients are universally acknowledged to be 'dissatisfied' with it ?
hi. I'm in the same boat as to speak. I'm not having my thyroid burnt out as I said the thyroid controls lots of things in your body so why burn it out for one symptom. If it were cancer related that's a different thing. I'm fine with it too so why spoil a good thing. If things change you always have that option. The great people in here I'm sure will advise that too.
Having your thyroid out isn't just as simple as having the operation and then just popping a daily pill and everything being fine for a lot of people. It can take years to get the levels right and feel okay again. I guess do your research and weigh everything up but like I said, for a lot of people having your thyroid out brings it's own problems and health concerns. Good luck.
I've been on 5mg carbimazole for 7 years. Felt well. Encouraged twice to come off, both times became very unwell. Problem with long term carbimazole use is effect on liver. Currently my liver enzymes are high. I'm seeing a new endo in 2 weeks but think he will encourage surgery as did previous endo. Not sure what to do myself. I'm 56.
I honestly wish medics would not do this 'you just have radioiodine and we give you levo' - it's a TOTAL LIE, this is a major procedure and for people positive with Trab (which you are because you have graves disease) this can set your eyes off, and cause problems where none existed, it can also cause a huge storm of antiboides as the thyroid dies (they literally nuke it) which could make your AF worse.
If you have RAI you will have to isolate for six weeks, you will not be able to see friends or grand children or hug your pets because you will be radioactive - the iodine will also affect your breasts, ovaries and stomach lining as it goes to iodine uptake sites. Getting stable on levo is also no small matter (I didn't tolerate levo at all, or levo and T3, I was then blamed for being a non compliant patient whilst my life literally fell apart further).
There is no reason why you cannot stay on CBZ for life, and some patients take something like 1mg ONCE A WEEK forever once stable (your T3 is still a tad high, and im sure as soon as you come off you will relapse).
For some inexplicable reason Endos are obsessed with 'remission' - this is nigh on impossible to achieve long term with Graves. You have only just had a period of stability and because of you age and your heart, I would proceed very very cautiously, slowly titrating down the CBZ after blood testing every three weeks.
I had a total TT but refused RAI for cancer, I also had eye disease (I had a very rare and treacherous combo of autoimmune thyroid disease that is impossible to control, was misdiagnosed for ten years, and if possible the cure was worse than the disease) and because I had eye disease they assumed I had Trab and neglected to test for anything else, it turns I had Hashimotos and Graves, a really nasty combo that in US is referred to as 'Hashitoxicosis' - different meaning to the how they use that term in the UK. They literally nearly killed me.
You know your body better than anyone, I'd strongly urge you to be your own best advocate
Thanks so much for your advice Girlscout, I can feel your anger through your post at the cavalier attitude of, “just take radioactive substance to destroy your thyroid, then we’ll put you on a different medication”….
This didn’t feel right to me at all and I’m so pleased that I came here for advice. ❤️
I have severe Graves since 2016. I am on Carbim 40mg at moment (approx 11 months) and 100mcg Levo (as put on block & replace this time) and likely to be on for at least 18 months (or maybe more depending on TRAb bloods which has been nearly 8 - very high on last 2 readings so unlikely to get remission I have been told).
This is 3rd episode and previous 2 was on carbimazole, mainly on 20mg, both for 18 months. My Graves has got worse both with the symptoms and after the 2nd episode hardly any remission - only about 4 months off carbim until back on it again.
I'm like you I don't know what to do for the best - doesn't seem like any good option but I've read quite a lot about the treatments and just don't like what I see and the quality of life for many people afterwards.
If I was in your position and you say you are feeling well and importantly your heart problems (AF) is now better/under control then I myself would opt to stay on Carbim even though there are risks of some side effects like immunity - at one point after I started on B&R last year my neutrophils were down at 1.7 and had to stop carbim. This was found by accident though as I was told they won't regularly do blood counts as it can vary widely with Graves anyway (so I was told by Endo).
I wish I could be on only 5mg - that is a small dose. Like others have said RAI is toxic - has been said can increase risk of other cancers due to the radiation dose but probably more worrying and acknowledged by my endo, is that people who choose RAI are likely to have a worse quality of life in the long run - he said to me "more people don't do well on it long term we have noticed" - so why do they prescribe it to nearly everyone as a first line treatment without telling us the risks - he never told me until I brought all the evidence with me to my appointment.
I presume you have Graves disease like me, which is the autoimmune system attacking the thyroid which over produces thyroxine and causes the symptoms but if you have RAI this usually just kills off the thyroid to stop all production. But this does not stop the auto-immune disease which is the cause. My endo said this can then attack any other organs which can be literally anything such as heart, brain whatever as far as I have been told. It can do this at any time - not just after RAI but I am not sure if the thyroid is killed off if it is more likely to then attack other things/organs. I think it would be more likely to cause thyroid eye disease though by what I have read and having RAI can cause thyroid storm/crisis with a massive dumping of hormone into the bloodstream as it dies - as others have said.
Another major problem is having any of the two treatments for overactive thyroid results in you being on Levothyroxine for life. This does not always work for everybody or sometimes years down the line stops working for you. In my case being on it for over a year now on block & replace, I feel more tired/lethargic/fatigued so cannot do as much - although don't know whether that is the cause as they say my bloods okay (TSH is low but say that is not a problem) but I feel it could be. However the NHS do not routinely provide other T3 medications if Levo doesn't work (I think mainly based on cost) and I believe their guidance for doctors states this. So it is likely if you do suffer with Levo that there will be no help from NHS and many have to fund other medications/blood tests etc. themselves at large cost and no NHS help. I have even put this to endo and he says that these concerns are valid.
That's why I say if I was as well as you I would remain on that low dose of Carbim as the other options could turn out to be worse for your quality of life afterwards and there is no going back. Even for myself I've remained on it up to now as have discussed my concerns with endo (though I don't believe the NHS is very supportive with this condition - had to request a change of endo last year - even though has a big impact on life - can be very poor I find) and he said I can choose what I want to do. In the US many now choose to stay on AT drugs long term without accepting treatment. The problem for me is I have it severe and high TRAb - no remission and when I go overactive it appears to suddenly and severely affect my heart with severe chest pains, very fast heart rate - so fast I can't count/time the beats and completely breathless - in fact feel like I'm going to have heart attack and usually end up in A&E. I also suffer with very bad heat intolerance/sweating, inability to sleep, major anxiety, muscle weakness etc. So consequently I'm terrified about coming off Carbim. Also somebody I knew, who became sort of friend, had Graves and died suddenly of a heart attack - was on front page of local paper and was said was linked to his Graves - so very worrying as was only in his early 50's. So I may have to accept a treatment option that could turn out to be worse than my quality of life now - as I feel my options are poor and limited (and have other medical conditions) whereas yours seem better as you say you have good quality of life now - so why ruin that and live out the rest of your life suffering and possibly not much help from NHS.
Okay so it is a pain on Carbim that if you get any signs of infection that we are warned about - (you know fever, sort throat, mouth sores, feeling unwell generally etc. etc. ) that we have to rush to A&E and get same day blood tests due to risk of Agranulocytosis - about 5/1000 people get this each year I've been told and quite high risk with sepsis. Can't get same day bloods done via GP or walk in UTC or anything. I mean this has happened to me a few times and can be waiting a full day or more in our local A&E as how often do we pick up an infection - a virus such as cold, flu, covid etc. so now I limit where/how often I go out and when I do go to shops I wear proper medical grade mask FP3 to reduce chances. But severely limits life (and that of my partner) and don't go anywhere now much (except food shopping) and haven't had holiday now for 7-8 years which we used to enjoy. This way of life is no good for your mental health either but I don't know what to do for the best. I just thought I'd tell you what I know from my experience and if that your life is good now - to keep it that way and stay how you are. I think if you are on a low dose like 5mg you would be at less risk from immune problems (Agranulocytosis) than people who are on high doses.
How high was your T4 when you were diagnosed? What are your TSH, T4 and T3 now? One option would be to stop Carbimazole and monitor every 3 months (bloods AND symptoms), and see whether it comes back or not. There is a good chance that it would not, but if it does you can go back on Carbimazole and, in my opinion, stay on for life.
I 45 and have been told Radiodine would be better option has I keep going from overactive to underactive with graves disease and am on carbimozole at the moment but because i not older they don't recommend me staying on the tablets does anyone know why they don't like you on the tablets if your not over 70
Staying on the AT drug is more ' high maintenance ' for the medical professionals:
Frequent hospital appointments every 6-8 weeks - running detailed thyroid blood tests, adjusting the medication and having face to face appointments or telephone calls to patients / doctors -
in an O/P department where the incentive is to free up appointment slots - and move patients through the system as quickly as possible -
especially now with the growing backlog of people waiting for hospital appointments - and become a political football.
You may feel better trying Block and Replace treatment - B & R - has this been offered you ?
Why don't you start your own post so we can help you better understand your situation ?
If nothing else please read through this post and the links offered in my first reply Thursday .
RAI is not suggested if of child bearing age but after that it seems anyone is fair game - ?
Hi crisathome I have had Graves disease about 7 years. And Graves eye disease about 5. I slowely weaned myself off Carb over a year and a half. Third time it has been good and I havent been on any Carb sune Jan 2023. I resisted rai surgery and constant pressure for definitive treatment, and stayed on carb for a long time. I would say if you feel good on low carb and even can reduce it over a very long time you should try it. In my view. Do whats right for you if your levels are good and you feel fine. I was in that place too. We are all learning. And surgery is always there. Good luck 🙏.
At the end of the day you are looking at an Auto Immune Disease for which there is no cure and all the AT drug does is semi-block your T3 and T4 thyroid hormone production while we wait for your immune system to calm down and hopefully revert to normal :
Everyones journey with this poorly understood and badly treated AI disease is unique to them though stress and anxiety tend to be common triggers -
Elaine Moore has a section on holistic and alternative treatment options and highlights some common personality traits / life style choices that you may find of interest.
If that was me, I'd stay as I am. I don't see the point of all that messing around when I am feeling good.
Plus as you may be aware, the quality of treatment for HYPO thyroid patients is very poor, and I would be concerned that I would be worse off after the change of treatment.
just my opinion of what I think I would do in your circumstances.
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