This is a three-way chat among endos about long-term treatment of Graves using methimazole (effectively the same as carbimazole).
Interesting the way they say that the 18 to 24 month "standard" period of treatment was based on assumption.
That true long-term treatment (five, maybe ten, years) is quite feasible and might be the best option.
That after 18 months, about 50% became hyperthyroid again. But after five years, that dropped to 15%. (For the four years of follow up - if I understood correctly.) Seems the TSH-receptor antibodies drop in some patients quite quickly, others after varying periods, and in some, they don't drop. And they don't know why.
At least some of this seems to have come from patients who, for one reason or another, were not given "definitive" treatment (radioactive iodine or surgery). At least initially this didn't come from research done to understand what was happening. Just observation when the endos had no other options.
At least some of the chat points out that some patients didn’t want to have to take levothyroxine. And some didn't want exposure to radioactivity. But such patients have so often been blamed for not going along with the orthodoxy. Regarded as obstreperous or idiotic.
My concentration did waver but I didn't pick up on any mention of possible future treatments. Which might be superior to surgery RAI and carbimazole. Surely, with such possibilities on the horizon, surgery and RAI should be relegated to the "only if we have no other choice" drawer?
Frustration level only quite high. Which is pretty good for an endo discussion video.
(I just about managed to listen to it. The voices are a bit more acceptable than many videos.)
Not sure what you might have to accept to be able to get to the page and listen/watch.
Is Long-Term Antithyroid Use the Best Treatment for Graves Disease?
Angela Leung, MD, MSc; Whitney Goldner, MD; David S. Cooper, MD
I have never been hyperthyroid. I started reading thyroid forums and websites in approx 2012 - 2013.
I have been under the impression that doctors in the US in the earlier years of my reading didn't even give patients the option of anti-thyroid drugs, they just went straight for RAI or thyroidectomy and told them they had no other choice.
I think the doctors in the transcript might be rewriting history about their own use of anti-thyroid drugs. I wonder how many people had RAI or thyroidectomy who didn't need to have it done at all. And it seems to have been done on quite flimsy evidence. Surely making damn sure that removing organs is absolutely essential is very important and several research groups should have investigated this. But then, depending on source, it affects up to ten times more women than men, and I'm sure that had something to do with the lack of research.
Title : Graves' disease: Epidemiology, genetic and environmental risk factors and viruses
People have voted with their feet. What people mostly want now is antithyroid drug therapy because of (A) the holy grail that they're going to have a remission and (B) they don't want to be on thyroid hormone and not have a thyroid. That's just something that people don't want.
I would guess that a significant number of those patients who had/have Graves didn't want to lose their thyroids having read about life without one on forums like this one. Doctors are truly appalling in their attitude to treating hypothyroidism, and they really haven't grasped how bad it makes people feel, so why would anyone volunteer themselves to get into that state if there is a chance of avoiding it?
I read this paper (or one very like it) some years ago, and I was shocked at the US doctors preferring RAI rather than suggesting anti-thyroid drugs :
Title : Diagnosis and management of Graves disease: a global overview
(B) they don't want to be on thyroid hormone and not have a thyroid. That's just something that people don't want.
is probably the most reasonable! If you can find anyone who positively wants NOT to have a thyroid, they most likely needed a psychiatrist rather than an endocrinologist. And especially given the use of the singular on thyroid hormone (not on thyroid hormones) - with the whacking great lack of evidence and assumption behind levothyroxine monotherapy.
I suppose patients who have been told that being hyperthyroid is deadly might agree to have their thyroid killed off or removed.
Doctors love frightening patients because they think it makes their job easier. How many of us have been told that a low TSH and/or an increase in Levo and/or taking T3 will give us osteoporosis, a heart attack, or a stroke?
I’ll second that - doctors do love frightening patients - try having osteoporosis - by the time I had ‘the gloom and doom talk’ from the osteoporosis nurse I lost the will to live, couldn’t see any sort of future. They scare you to death to get you to take bisphosphonates.
My mother took one of the awful osteoporosis drugs, probably bisphosphonates. They caused necrosis of the jaw and she lost almost all her teeth. That was bad enough - but the necrosis also caused really, really terrible pain as well.
It’s the limit of around 18 months that’s the issue.
Taking someone off carbimazole after 18 months to attempt try remission is counter productive if the dose is keeping them stable.
Others find they are hypothyroid even on lower dose carbimazole long before 18 months is up.
1 size doesn’t fit all.
The push for easily administered (and cost effective) RAI and poor after care is the reason many are uncomfortable with RAI.
I don’t have autoimmune hyper, I have a nodule - I have no possibility of remission, so doctors advised (and arranged) RAI at first appointment. I didn’t go ahead.
I had seen a ENT surgeon previously. He could do a partial thyroidectomy, if RAI not logistically suitable. Then I was discharged as endocrinology dealing. Endocrinology would discuss options (RAI was decided by them as only option) & as I didn’t consent, I was discharged by them too. In other words if I decided on either treatment - I would have to be re referred and likely have to battle for surgery.
Not applicable for Graves but a hyper nodule does have another treatment option - Radio Frequency Ablation - doctors never mentioned it to me. I collected my own information and I think I’d be a candidate for the treatment. If I had the funds to travel I’d be pushing for a referral. I just know I couldn’t travel miles for the numerous appointments.
i was told at my very first endocrinology appointment that I was to have RAI thyroid ablation the following year :
It would have been nice for there to have been a discussion about treatment options and been given a choice but I'm afraid there was nothing offered, and when on asking what was Graves Disease I was given two leaflets, one on TED and one on RAI and both were economical with the truth especially surrounding the potential side effects of taking RAI treatment.
Seeing a different endo at every hospital appointment, all of whom were ' just on rotation ' was not conducive to there being any build up of trust or understanding and sadly when ill, one needs unbiased input as you, as the patient, are not well enough yourself to understand and think clearly.
So I'll close with another research paper I post which wasn't cited and never touched on ?
At least I made it to my third appointment before I was told should I relapse etc. but I agree, my various endos only really tell you as much as they want you to know. Like you I never saw the same doctor twice or had a chance to build up any sort of relationship with anyone.One of the many endos I saw actually tried to convince me RAI was no problem. She held up her thumb and finger as if she was holding an imaginary pill - and told me it was ‘only a little pill.I pointed out that I didn’t want to become hypo only for her to look at me and tell me that I wouldn’t become hypothyroid! Yes, they are very economical with the truth.
What can you say to something like that - apart from ‘no thanks.
I think that the fact your doctor(s) were so happy to lie to you is shocking. And that 'only a little pill' comment is basically just treating the patient like a scared toddler, which is incredibly insulting.
I know but you wonder how many people she convinced. In the end once I’d been signed off I saw my own GP and asked if they could insist I had RAI - no they couldn’t and could they refuse to treat me and again the answer was no they couldn’t.She didn’t scare me - mainly because I wasn’t too bothered by the size of pill and I knew there was every chance I’d end up hypo but the osteoporosis nurse did - their list of co morbidities and mortalities was so frightening that in the end I took their bisphosphonates for four months until I felt really ill and was a shadow of my former self and stopped them. I was offered infusions but the person I saw (again I think since 2015 I have only seen the same rheumatologist twice) at least had the decency to say that she couldn’t say I wouldn’t feel just as ill if I were to have an annual infusion which was pretty honest of her - even though she really wanted me to have it.
Thank you for that helvella, it is really interesting. I am going to keep it as an ‘insurance policy’ should I ever have the misfortune to need it in years to come- perish the thought.
Overall I found it encouraging and depressing in equal parts - encouraging that these doctors are actually discussing long term use of anti-thyroid drugs and depressing in that long term use of anti-thyroid drugs has been known about for a very long time, that (informed)doctors know the success rate is likely to be good, that they know that many patients would prefer to take carb in the long term, not to mention depressing because of long it takes for anything to change in medicine.
From my own experience it was a case of ‘take carbimazole for a year then it’s RAI or a TT for you’. My doctors - never saw the same one twice in the year I was being treated but they were mentioning from my third appointment and every appointment after that that should I relapse it was RAI for me and each time it was mentioned I said that I did not want it.
As you say there is no mention of future treatments such as the Antigen-Specific Immunotherapy with Thyrotropin Receptor Peptides in Graves' Hyperthyroidism Study / trial that has been around for quite a while.
I can see the case if someone has suspicious nodules or thyroid cancer but otherwise why subject someone - especially someone young - to a lifetime without a thyroid gland and dependent on their GP to give them enough T4 or dare I say it T3 to keep them really well.
I was diagnosed Graves over 6 years ago and was being pushed towards definitive treatment by a diabetes specialist who warned me about osteoporosis and heart problems if I didn’t follow his advice and have my thyroid removed. I am reassured by the latest evidence that my choice of long term Carbimazole treatment is giving me the best chance of remission. This evidence was out there 6 years ago. I read it then but obviously my endo hadn’t! I would have liked the discussion to have included information on block and replace and a mention of dosage as reading peoples experiences on the forum I suspect many are given too high a dose. My mantra has always been that I want to be on the lowest effective dose. They also didn’t mention blocking and stimulating TRAb , the balance of which can change over the long term.
Thanks helvella for sharing this! Good reminder that long-term anti-thyroid treatment is a good option and may help with remission rates. I was on carbimazole for six years and stopped 10 months ago. So far so good….
Wow helvella! Thank you so much for this excellent piece!! Its my "next lap" reference now going into 8 years on carbimazole. I've always wanted to know what's in it for those on long term ATD since i have no access to a reliable endo or GP. What the docs share in this interview, of their huge trove of clinical experience, is truly priceless.
The first gem which hits home -
Goldner: "... Long term, there have been case reports of vasculitis, but that is also fairly rare. That's not something that we talk about right up front, because it's not something that's always going to happen. Long term, I do think that would play into the discussion if somebody chooses to take it for decades, as we talked about. IT USUALLY IS A VASCULITIS THAT'S MEDIATED BY AN ANTIBODY ALSO."
Late last year, i had a scare with what seemed like GCA. The brain MRI turned out clear. On hindsight, the symptoms appear to have been triggered by restarting long brisk walks. Unusually this time, the symptoms presented in the head eye region, when over-exercise stress would usually trigger symptoms in the body.
This nugget about long term ATD and vasculitis, is however, significant, and is something which i should watch out for since i have not stopped carbimazole since starting it in 2015.
Goldner: "... For people who are considering, say, pregnancy relatively soon or they really don't want to use medications long term or be exposed to radioactivity, sometimes surgery is something that people want to consider, which is upfront as their more permanent option. Conversely, for people who do not want to consider surgery and really don't want long-term antithyroid medication, sometimes radioactive iodine can be a great option."
RAI - potential cancer 30 years down the road should be highlighted to the patient.
Goldner: "...In the case of low white blood cell count, all of the most common side effects occur within the first few months of taking it if they happen, but they can happen at any point.
... One thing to remember, especially in people who take it long term, is that sometimes people forget the side-effect profile the longer they've been on the medications. I do try to remind them that if they are taking medications long term, there are these side effects to remember if they do develop them at any point in time."
Cooper: "... One of the things that needs to be appreciated, though, is that if a person stops taking the medicine and then they have a relapse, let's say, and then they start taking it again a year or two later, it's as if they had never taken it at all. They are still at risk for getting the side effects that they may never have had the first time, the second time, the third time, or the fourth time. When they go off for a period of time, for at least 6-12 months, and then they restart, they can be susceptible to getting those exact same side effects that they never had the first time."
Cooper: "... One randomized trial seems to indicate that, indeed, the longer a person takes the medicine, the more and more likely it is that when they stop taking the medicine, they will have a remission.
... The other thing I was going to mention is a randomized trial from Iran by Azizi et al, where a group of patients were treated with methimazole for 18 months, and then half of them stopped the treatment and the other half went on to continue the treatment for 5-10 years, and they were followed prospectively for 48 months. They found that the recurrence rate in the group that took the medicine for 18 months was about 50%, which is what we expect, but the recurrence rate in patients who took the drug for 5-10 years and then stopped was 15%.
This, I think, is very powerful evidence that if you just stick with the program and give the medicine for a much longer period of time than you might think, then a larger number of people will achieve what we call a remission and not need to be on any medicine at all.
There are studies where people have taken it for decades, and even when the TSH receptor antibodies are undetectable, people continue to take the medicine indefinitely because they're either worried about a recurrence or are just happy taking a small dose of medicine. Again, in that group of people, the relapse rates when they do stop are about 15%-20%. After taking the medicine for 10-20 years, about 80% of people overall will have a remission."
As someone who takes ATD long term, you will roughly know if you belong to the 80 or 20% group. The disease course and symptoms over the years will give a good gauge as to your chances at remission.
Leung: "... Who are the ideal patients in whom to try long-term antithyroid drugs for people with Graves disease? Does it matter on age, comorbidities, gender, life stage? Who would be the perfect, ideal candidates?"
Cooper: "... The people that I think are not candidates are people who have suspicious nodules and you're concerned about a malignancy, who would probably benefit more from surgical removal, because that would be taking care of not only the hypothyroidism but also the suspicious nodule. As I mentioned before, I take into account whether they have eye disease when making these decisions.
Almost every person would be a candidate for longer-term antithyroid drugs if they would like to try medications rather than something a little bit more permanent before making their decision. The one group who I would say probably not to do it in are those people who already have, say, liver dysfunction or already have very low white blood cell counts, and you're concerned that any reduction might be might be detrimental for them. Those would be people that I'd have a very serious conversation with about risks and benefits. Not that they couldn't use it, but I think they would need a little bit closer monitoring."
Cooper: "... What people mostly want now is antithyroid drug therapy because of (A) the holy grail that they're going to have a remission and (B) they don't want to be on thyroid hormone and not have a thyroid. That's just something that people don't want.
... I would also say that our mindset should be changed a little bit. In many patients, we can think about anti-drug therapy the way we think about a statin or an antihypertensive drug. In other words, this is just a medicine the person is taking to keep a chronic disease that they have under control. That's why you can think about it and give it for 5-10 years without really worrying so much. Most people who go on long-term therapy are well controlled on small doses of medicine and there's essentially no toxicity. I'll also mention that it may be that there are other things that can be done to improve the remission rate.
I just wanted to mention immunotherapy. Obviously, Graves disease has its basis in an aberrant immune system. One of the things that's been studied recently — and there was a paper just this month — is using rituximab at the start of treatment of Graves disease with antithyroid drugs. In other words, one rituximab infusion seems to maybe improve the remission rate after a course of antithyroid drug therapy."
Leung: "... Unfortunately, this video commentary didn't allow us time to explore some of the newer immunomodulators, which are certainly on the horizon; there is a wonderful promise for therapies in the years ahead."
Immunomodulators - from personal experience, i'd say the statin is an immunomodulator. Also, on a health program on long covid, an infectious diseases specialist said that" "statins modulate the immune system".
Since taking a statin from Mar 2020, my TRAb which had started rising again (though still in range) went back below the low end of the range, the remnants of my TED symptoms disappeared, my exercise capacity dramatically increased (to my detriment). I wonder if the good effects of the statin on the Graves will last?
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