RAI i would love to hear your experiences 😊

[sally1972]

Hi i saw my Endo yesterday and he suggests i have RAI for my hyperthyroidism due to my Graves disease, i had a relapse FT4 76 and he thinks it was due to me being on 5mg Carbimazole daily. I was stable at 10mg daily but he tried to lower dose to see if he could get me totally off the meds...obviously that didn’t work. Was wondering if any of you have had RAI treatment and how it went and would you recommend it or should i just stick with 10mg Carbimazole? I do have other medical problems on top of my Graves. Any info would be great thank you 😊 x

[Greekchick]

Dear Sally:

I have Graves and had a TT 6 1/2 months ago now. I was on Tapazole for 2 years before I became resistant to it and then needed surgery. I was first offered RAI when I was started on the Tapazole and declined it because of the size of my goiter and wanted to see if I could go into remission.

There are those on the forum who have had good and bad experiences with both RAI and surgery. For those of us with Graves, the existing research suggests that RAI is not the best choice because it increases the risk of developing TED (Graves Eye Disease). I don't know how old you are, but there is limited research that also suggests that older women tend to do worse with RAI than with surgery (younger men seem to do the best with RAI). RAI is usually the first recommended treatment for hyperthyroidism because it is easier for doctors to manage you once you are hypothryoid without the expense of surgery rather than trying to maintain you on carbimazole and doing frequent blood testing and scanning (and it's cheaper too). Were you offered surgery or told it was an alternative?

I don't know how long you have been on carbimazole, but it seems you were doing OK on the 10 mg dosage. I am not a doctor, but I myself would try to stay on it as long as I could before making a permanent decision. My endo has a patient who has been on Tapazole for 11 years and counting. As long as you don't have problems with low white blood count (and frequent infection) or liver toxicity, and otherwise felt well on 10 mg, it seems like there is no reason to rush, unless your doctor really believes you have a medical emergency. These decisions are best made together with your doctor, as I don't know your complete medical history.

Do you have you latest thyroid bloodwork with ranges? If you post them, this would give some of our members who are expert at interpreting these here additional information to help you with your decision. Do you have a goiter or nodules? Have you had a recent uptake scan or ultrasound? The results would provide further information to make this type of decision.

In any case, most things thyroid move very slowly, so do not let anyone rush you into something that is permanent and irreversible. Sending good wishes your way today and good luck as you move forward.

[sally1972 in reply to Greekchick]

Wow a lot to take in i’m trying to get as much information and personal experiences from other people like yourself so i can decide on the next action for me to take. Im due my next Endo appointment in November and my Dr would like to know my decision on having the RAI. I have to be honest i wasn’t keen on having the RAI when he suggested it but i did say to him that i would seriously consider the option.... hence why i’m interested in other peoples personal experiences. I have always tried to stick with the meds if they are working rather than to go under the knife or to have the RAI. My Dr was saying only a blood test a year but the bloods don’t bother me as i’m always having bloods for my INR as i’m on warfarin. I also have Af Atrial fibrillation and other medical issues. As you read i was stable for years on my 10mg Carbimazole daily until he lowered my dose to 5mg. To be honest i will more than likely stay with my meds coz they work well for me. As i told him i would consider it i am going to get as much info as possible. It’s not a step to take lightly. Thank you for your well wishes and good luck in my journey. I wish you well on your journey also. Also a big thank you for taking the time to comment i do appreciate that.

[Greekchick in reply to sally1972]

If you have AFIb, I can understand why your doc is recommending RAI. That said, if you are well controlled on carbi, you are probably fine for awhile longer and if it were me, I would stay on drug therapy. Doctors always underestimate how long you can stay on it.

But of course, these are decisions only you and your doctor can make and my opinions are only just that - opinions! Again, good luck and let us know how you are doing.

[sally1972 in reply to Greekchick]

Appreciate all your opinions and comments thats what i came here for. Thank you again x

[LAHs in reply to sally1972]

I agree with Greekchic, stay on the carbi for as long as you can. Bear in mind that your reactions might fluctuate, you might get a lot of hormones suddenly generated so you might have to increase your dose of Carbi - and vice-a-versa. You will know when you should take a bit more carbi or reduce it. Don't wait for an appointment to ask the doc, by the time you get there your flare could have died down and he will say don't increase your dose. Then you will get another one and repeat the process - a big waste of everyone's time.

[sally1972 in reply to LAHs]

Thank you appreciate you taking the time to comment 😊

[pennyannie]

Hello Sally

If it were me I would stay on ATD for as long as possible.

Graves is an autoimmune disease and the thyroid is the victim of an attack by your immune system. Currently the NHS doesn't know how to control the autoimmune aspect of this disease and since, in some circumstances, the symptoms experienced can be said to be life threatening, the quickest way to resolve symptoms is to remove this major gland.

Of the two options available a thyroidectomy is the cleanest, and most concise method, though obviously needs serious consideration, since it's a surgical procedure and no one really wants their throat cut open, do they.

RAI does seem the simplest option, in that it's a 20 minute outpatient appointment, no surgery, just drinking down a liquid or popping a pill, and a discharge back out into Primary Care. However RAI is a toxic substance that burns out your thyroid in situ, and is known to be taken up, in smaller amounts, by other glands within your body.

Once rendered hypothyroid by both of the above drastic options future treatment is with Levothyroxine and is the only option available on the NHS. and as you may have noticed by the number of people on just this website, not everybody recovers full QOL with this one thyroid hormone treatment.

The thyroid is a major gland responsible for full body synchronisation, and the conductor of all your bodily parts. It's responsible for your mental, physical, emotional, psychological and spiritual well being, and it regulates your internal central heating system.

I am with Graves Disease, diagnosed in 2003, RAI in 2005 and became very unwell some 8 years later, with what I believe the long term consequences of RAI. and found no help or understanding within the NHS system. I was refused a trial of the additional thyroid hormone T3 early last year owing to my TSH being suppressed. It's academic, and a cost cutting exercise by the NHS -

I am now self medicating with Natural Desiccated Thyroid and getting my life back - though again, refused a prescription of same on the NHS - I would much prefer to have a doctor on side, but thanks to the support this amazing site I'm going it alone, as many of us seem to have to do to have some QOL when left without a thyroid. I am now having to manage Graves disease, thyroid eye disease ( caused, I believe by the RAI ) and hypothyroidism and read that after RAI hypothyroidism it is much more difficult to treat.

If you don't know of Elaine Moore suggest you take a look at her website. This lady has the disease and wrote a book when she found no help with her issues, after RAI, back in the late 1990's. There are sections on autoimmune disease, and what you can do to help yourself. It is Stateside so medical protocol slightly different, but there is much to take in and understand, and along with this website, I've learnt of my situation " back to front " . Thankfully, you are better placed to make a decision, and please do your research. I don't think there is a simple fix, it's your life, your body, and your thyroid.

[sally1972 in reply to pennyannie]

Thank you so much for all the information you have given me I truly appreciate it. Sorry to hear that you have not had the greatest results with RAI and also a lack of support from NHS . A thyroidectomy is not an option i am willing to consider as i am also on warfarin. I wish you well in your battle with Graves. Thank you once again.

[bantam12]

I had RAI, no side effects, no problems, best thing I did.

[sally1972 in reply to bantam12]

Thats great to hear thank you for commenting 😊

[Greekchick]

Hoping whatever you decide, whether it is RAI or staying on medication, you will feel better. All the best.

[sally1972 in reply to Greekchick]

Thank you so much 😊 wishing you well take care.

[dusty2]

I was given the choice of surgery or RAI & I opted for RAI as I had lots of surgeries & wanted no more.

RAI was no problem for me & I am glad I did it.

I had regular hospital appointments in the years following it & inbetween hospital appts I went to Drs. It must be different depending on where u live as I was not discharged to primary care & my appointment for RAI was not just 20 minutes.

[sally1972]

Pleased to hear RAI was a good decision for you. Ive had my fare share of surgeries also another reason why i would try to avoid having another. Thank you for your comment appreciate you taking the time to do so.

[MrsGraves]

Had RAI 11 years ago - uncontrollable Graves, with Afib and everything else that can go along with it. Best decision I ever made - no side effects, no problems , no regrets. Simple process - wee white tablet and a glass of water. Got my life back and feeling just dandy on Levothyroxine alone.

Good luck with whatever you decide.

[sally1972 in reply to MrsGraves]

Thats is great to hear really pleased for you. Still deciding but i’m more for staying on me Carbimazole at mo as at 10mg i feel great. Thanks for taking the time to reply i fo appreciate it 😊 wishing you all the best.