I’ve been on medication propranolol and carbimozale for about 3 years now, and over them years my thyroid levels have been going up and down, at one point I was under active due to over medicating by GP, then due to coming off of medication suddenly I went overactive again. For about a year now I’ve felt better with hardly any symptoms of hypo or hyper maybe due to the balance of medication,
My endo has now said that I have been on medication for 3 years and maybe thinking of trying something else. I’m fearful of getting my thyroid removed because then I will be hypo for life, to be honest I would rather be hyper than hypo.
Have you guys any ideas regarding this because I feel like removal of thyroid gland should be the last option, and looking on here many people have gone against surgery.
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Beau005
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Legally, you can't be coerced into having your thyroid removed or be forced into having RAI.
If you want to continue on anti-thyroid drugs, and as long as you have no dangerous side-effects from it, then you can take the propranolol and carbi for as long as you want.
Another thing I should point out is that you can't be denied carbi and propranolol if you refuse to have a thyroidectomy or take RAI.
If you are stable on carbimazole you can stay on long term. Its just doctors following the protocol that encourages either Radio active Iodine treatment or surgery.
The risks that carbimazole present, the most serious being drop,in white cell count do not lessen or disappear but if you have researched all your options and decide remaining on carbimazole is right for you, your doctor can’t withdraw treatment or compelled you in any way to undergo a treatment you do not consent to. Despite what they think, or what policy they are taught to follow.
The way I view it is that surgery or RAI are irreversible. Should I develop problems with carbimazole then I will then have to consider the alternative.
I have a nodule so no possibility of remission but with Graves there’s still the chance you will be able to stop medication even years of being on the medication.
I have heard others being discharged to primary care for GP to monitor. So far I been able to stay under hospital via telephone clinics with a nurse specialist between specialist appointments.
Thanks for your advice I appreciate it, the last telephone call I had with my endo was my thyroid levels are improving so I hope it can just stay stable, the only side effects was when I came off of propranolol but I’ve actually cut that down myself due to feeling of blood pressure is getting abit low.
I still take propranolol. I get migraines when I try to reduce it. I take 7.5 carbimazole & 30mg proprananol per day, so low doses. How much do you take? & do you collect your results?
I’m currently on 10mg carbi and 20mg propranolol, ever since I’ve been feeling great, hardly no side effects, sometimes I get fatigue but nothing extreme, also eating healthier has felt like it makes a difference also recommend black seed oil which i have every other day good for inflammation, hair skin etc.
I have Graves and TED treated with block and replace for about 6 years now.Someone posted the following recently which you may find of interest healthunlocked.com/api/redi....
Hope I have given the correct link. Please will someone correct it if it is wrong. The article reassured me I had made the correct decision to stay on the lowest effective dose of Carbimazole (5mg ) which keeps me feeling well and I still hope to eventually achieve remission .
9 years is a long time. Is that continuously? What is the cause of your hyper?
Any breaks? Doctors tend to leave people on 5mg per day as it the lowest manufactured dose. Do your levels still warrant 5mg. what are your FT4 & FT3 results?
It’s possible to split a pill of take alternative days.
I’m looking at long term use as I have a solitary toxic nodule.
Yep, 9 years is a long time to be on it. The only break I’ve had is after the first year when I thought I was in remission and I took myself of the medication. That didn’t go well. It wasn’t long before all the classic Graves’ disease symptoms return. My original diagnosis is Post Partum Graves.
I go for blood tests and visit the endocrinologist every three/four months.
There was one time a couple of years ago when my endo tried reducing my medication to 2.5mg a day. But my body didn’t like it. However I was super stressed with work at the time so who knows?
This might interest you healthunlocked.com/thyroidu... Study showing the longer you are on antithyroid drugs the better the chance of graves going into remission, and so you get to keep your thyroid. If you are doing well and your white cell count is fine, it's worth staying on antithyroid drugs for longer than 3 yrs , and there is no reason not to (except that it costs them a bit more money, because you are still on the Endo's books, and hopefully having more regular bloods done then hypo's get,... i don't know if carbimazole is more expensive than Levo, but Levo only costs pennies)
There is also. if i remember correctly, a question of the level of current Graves antibodies (TRab) being relevant to the chances of remission if considering trying to come off antithyroid drugs, but can't find the relevant post at the moment.
Maybe someone else will remember it.
The main reason they want to discuss 'other options' is because you will cost them less money if they persuade you to have RAI, and then you don't have to be seen by an Endo anymore , you just get an annual TSH check from the GP, and about £12 a years worth of Levo .... and a flea in your ear (or some antidepressants ) if you happen to end up as one of those who don't do well on Levo . And also what about any long term damage from RAI ?
I don't have hyper, just hypo, but i don't think i would want RAI unless i had no alternative.
I think tattybogle's and my reply crossed !Regards TRAb, my endo said he would not take me off Carbimazole until I was below 5. I was at 16 two years ago. My TSH is still very low and I would expect to see it creep up a little if I was nearing remission.
If you are well, and happy to stay on the AT drug that is your choice and should be respected.
At the end of the day we are looking at an auto immune disease that isn't resolved by a thyroidectomy or RAI thyroid ablation both invasive treatments that may simply compound your health issues even further.
Just ensure your T3 and T4 levels are regularly monitored to ensure your levels do not fall too low and put you into hypothyroid territory which is equally disabling, and in my opinion worse.
Optimal ferritin, folate, B12 and vitamin D will help keep your core strength strong and solid to support you through any " hic cup " phases and when your immune system response calms down sufficiently and your antibodies reduce back down into range periods of remission may well be possible.
I read of people on AT drugs for years, on minimal doses, and some people with back up medication in the medicine chest for if and when they sense another episode approaching.
Graves is said to be stress and anxiety driven and in the current climate living a life clear of certain triggers an impossibility but it will benefit you to work on your situation and try and understand what triggers you,
You have 2 excellent papers above to keep and copy for your endo and if you want to read further on Graves I believe the Elaine Moore Graves Disease Foundation the most well rounded platform I have found.
I'm with Graves Disease diagnosed in 2003 at age 56 and given RAI thyroid ablation in 2005 - I deeply regret this treatment though was given no information on Graves and no treatment option. I now manage lingering Graves, thyroid eye disease and hypothyroidism and am self medicating as I was unable to secure the appropriate full spectrum thyroid hormone replacement through the NHS.
Thank you for your advice I really appreciate it, I’m sorry to hear that, yes I have been through deep stress and even depression years ago and I have always thought that was the trigger, before I didn’t really think about checking my blood test results was leaving results to the professionals ,but thanks to you guys I will be getting a copy of everything and studying this on a deeper level.
Ok then, good, knowledge is power and you will feel better having some control of your situation.
Hyperthyroidism and hypothyroidism are the extreme opposite ends of the same T3 stick and your symptoms are caused by too much or too little T3 so get copies of all your blood tests from the very beginning - it is your legal right - and plot your progress and T3/T4 levels and symptoms experienced at certain doses and you'll be better placed to understand where you are in all this :
This may sound silly - as I can't remember - and if I look back I'll loose this little message - but just to confirm, when diagnosed with Graves did you have a positive and an over range TSI ( worded as a thyroid stimulating) or a TR ab ( worded as a thyroid receptor blocking ) antibody result ?
There are 2 AI diseases that initialy present as hyperactive : Graves and Hashimoto's.
The only wat to tell them apart is through the antibodies present in the blood ;
Hashimoto's is not treated the same as Graves and we have seen people treated as Graves when in fact they were actually with Hashimoto's antibodies, when double checked.
Sorry for late reply, yeah I’m not sure I’m going to get all my results sent to me from the last few years, also I will post my blood test results when I get them done so I can get a good view from you guys, you lot have been a great help.
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