I was diagnosed with Graves disease 16 months ago. I have been on carbimazole on reducing doses and T levels were almost normal but then went up. So I am now on 15mg per day. They asked me to think about radio active iodine. I am very unsure about this. From the little I have read it can make your eyes bulge ( is that what TED is?) and you will then be on thyroxine for life. Can anyone spread any light on this? I read on this forum that they don't want people to continue with Carbimazole as its expensive, is that the reason?
Many thanks for any help
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KoKo30
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Graves is an auto immune disease that tends to get diagnosed when the immune system attacks the thyroid and or eyes as these are a major gland and vision / sight issues - of paramount importance.
All the Anti Thyroid drug does is semi-block your daily, new, thyroid hormone production and as your T3 and T4 levels slowly fall back down into range again - your AT drug is titrated down - as otherwise you risk your T3 and T4 falling through the ranges too far and causing the equally disabling symptoms of hypothyroidism.
You could liken this treatment as being on auto pilot and being put in a holding position - like a plane - waiting to land.
Can you share with forum members your initial blood tests at diagnosis showing the TSH , Free T3 and Free T4 readings and ranges and the medical evidence of the Graves antibody being over range and positive - usually reading as a Thyroid Receptor Block or Stimulating reading/range. Maybe written as a TRab or a TSI :
What symptoms did your initially have that sent you to the doctor and have these been relieved and what symptoms are you dealing with currently ?
We now have research papers suggesting that the longer the patient stays on the AT medication the better the long term outcome for the patient :-
Ae your eyes also affected - if using any preparations, even those prescribed - please ensure all are Preservative Free ;
RAI should not even be considered if your eyes are already affected as RAI is known to exacerbate these symptoms.
There is also the Thyroid Eye Disease Charitable Trust who can signpost you to clinic, generally attached to leading teaching hospitals where specialist opticians work alongside endocrinologists and advise of medications and AT drug adjustments to reduce potential eye issue complications.
Thank you so much for all the information, very helpful and somewhat reassuring. My TSH levels are always <0.01. No one has really explained the TSH to me. T4 started at 30.4 but came down to 23.3 but on less medication it went up to 23.3. After 6 weeks of 15mg per day I am due a blood test this week. T3 started at 19 then went down to 6.8 but back up to 12.7 which I think is still nearly normal. I had palpitations and tremor prior to diagnosis and had significant weight loss but no symptoms currently and thankfully my eyes are ok. I also have osteoporosis, which is why they originally tested for thyroid function. The research papers you sent a link to are helpful and I think I can argue for not having RAI at least at the moment.
The TSH is the least reliable of all the blood tests - but sadly you may find your TSH is what most in mainstream medical talk about :
If you have Graves Disease - antibody readings to be confirmed please - we have these antibodies circulating in our blood that become stuck on our TSH receptor sites, driving down this sensitive marker which then instructs the thyroid to make more and more thyroid hormone and we end up with an excess/ over range T3 and T4 readings and start experiencing symptoms.
The AT drug is deployed to semi- block the new daily, production of more T3 and T4 as we wait for your immune system response to calm down since Graves is said to be life threatening if not medicated.
If your immune system is still very active and AT drug may need to be titrated up and/or down to try and find the right balance of medication and this treatment method needs regular blood tests and follow ups, generally around every 6-8 weeks, as blood test tend to run a couple of weeks behind symptoms being experienced.
Some people get offered Block and Replace treatment where the AT drug is at a high enough level to totally block any more thyroid hormone production and a dose of T4 - Levothyroxine is prescribe to maintain your T3 and T4 at a level during this phase of the disease, and hopefully alleviate the worst of the symptoms being suffered.
I had RAI back in 2005 - a treatment I deeply regret, but knew nothing back then.
I am now hypothyroid and on thyroid hormone replacement for life and to be well my TSH needs to be stuck down at 0.01 - which doctors presume means I am over medicated - but in fact, the opposite is the reality.
Sadly in primary care doctors seem to be dosing and monitoring patients on just a TSH reading - and why so many forum members on here are having to run their own thyroid blood tests and self medicate, as again, in primary care, there is only one treatment option - T4 - Levothyroxine - and if this does not suit you, especially longer term, you need to be assessed for other treatment options, go private, or Do It Yourself -
P.S, It might be an idea to register for online access to all your medical records and then you can see first hand all the results, ranges and the medical evidence of which antibodies were found positive and over range at diagnosis - just ask at your Primary Care surgery for the necessary forms.
thanks again. I do have Graves disease. I have full access to my hospital records and GP records but the GP is not involved at the moment. What antibody test are you referring to? Also can you say why you deeply regret the RAI?
For Graves Disease the antibodies are generally expressed as either a TR ab or a TSI - with wording such as Thyroid Receptor Blocking antibody and or a Thyroid Stimulating antibody.
I detailed above in my first reply to you two research papers - please read -
Should you wish to read my Profile Page and my thyroid journey feel free -
just press on the icon alongside my name, written when I first found this forum and 10 years post RAI thyroid ablation .
Further information on RAI on the Elaine Moore website as already detailed.
You really do need to become your own best advocate and read up around Graves Disease and treatment options.
Doctors say long term carbimazole put you at risk of the rare side affect which can occur. The risks are very low but do remain.
Carbimazole is a bit more expensive that levo, but that’s not the main reason. Specialist monitoring when hyper is expensive. Hospitals prefer you off their list & dealt with in primary care, doctors view hypothyroid as easily managed.
The specialist told me they would only “keep me on the books” if I was going to undergo RAI soon. So I was discharged to be monitored by GP.
RAI is know to worsen active TED.
If you are well managed on carbimazole you can stay on it long term. You also have the option of surgery.
You are correct KoKo, once you have had radioactive iodine to kill off your thyroid you will have to take levothyroxine for life - some people do not convert to T3 well and levo isn’t enough for them - that’s where they can have problems. I had Graves back in 2012 and was always being offered RAI.
I always refused to even consider RAI, mainly because I kept very well on carbimazole, I felt that endos just want you ‘off their books’ and getting rid of your thyroid is one way to do that and send you off to be looked after (or not) by your GP.
Having read about people who are now hypo I didn’t feel I could rely on my GP to keep me on an amount of levo or whatever I needed to keep me feeling well. So far 🤞 I’ve stayed in remission but in the beginning I saw my own GP and asked if the hospital could insist that I have RAI - no was the answer. I also asked if they could refuse to treat me if I refused and the answer was another no so I went home and got on with life.
I never had thyroid eye disease although I had several eye symptoms - very, very dry eyes, vertical double vision and blurred vision because my muscles weren’t working all that well - but the eye symptoms I kept under control by using masses of preservative free eye drops regularly throughout the day and a thick gunky gel at night and an eye bag that I put in the microwavev and put over my eyes.
I think I have read that if you have TED you should wait until your eye specialist has it under control before if you decide to have RAI or else go for a total thyroidectomy.
I also went totally gluten free a year or so later when I developed inflammatory arthritis- yet another autoimmune disorder, whether it helped or not I don’t know but my antibodies came right down - it could have been that they would have reduced by themself or being gluten free could have hurried that along I don’t know. .
I was also treated with block and replace which I think is easier to control than titrating - but I’m sure people who been treated with titration probably prefer that. I took 40mcg of carbimazole daily for three months then I started taking levothyroxine which was gradually increased - I ended up taking 100/125 on alternate days plus the carbimazole - until my doctors got my levels in the right place then one day after an endo consultation I stopped it all!
Even if they kill off your thyroid you still have Graves - it just can’t affect your thyroid.
I’ll also say that if you have Graves keep a check on your bones - I have osteoporosis and I so wish someone had told me that an overactive thyroid is one of several conditions that can lead to that. Alas they didn’t.
Thanks for all this, really interesting. I have oesteoporsis which is why they originally tested my thyroid. No eye problems though. Good to know I can refuse RAI, it still doesnt sound good to me. Gluten free is interesting but thats a huge change to make. Having a blood test this week so will see how the levels are then. Thanks again
Hi Koko, sorry you have Graves I do too for about 3 years. Yes TED is thyroid eye disease if you have it like I do radioactive iodine is not recommended as it can make graves eye disease worse. Note not everyone with Graves will also get Graves eye disease. The other option is thyroid removal and without a thyroid yes you would then need to take a thyroid hormone. Depending on how much the fluctuation is it might be within an acceptable range and you would not necessarily want to jump straight to surgery or radioactive therapy. However I understand the normal treatment is 18months whereby some people may no longer be hyperthyroid after coming off carb. Which could explain why they are asking you to think about other solutions. There is some more recent research to suggest that a longer period on carb may lead to even better outcomes too. Myself i tried to reduce once and had a similar fluctuation to you. I recently tried a second time and have been not taking carb for 7 months. Now my thyroid hormone is normal but my tsh is below normal. Apparently this is not a good thing and also indicates graves. Carb is free in NZ. I may take it for life or have surgery I am not sure yet. I am still on this journey too. Hope this helps
Thanks so much for replying, very helpful to hear your journey. I need to do some more reading and take more time to come to a decision. I dont currently have eye problems so RAI is a possibility but its scary. Getting another blood test this week and hopefully levels will be okay we'll see. But good to hear that it seems its ok to carry on with carbimazole for a while yet. ( being old my prescriptions are free!)
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