HiI have Graves disease - diagnosed 30 Sept 22 with zero TSH and high TRAB count.
Carbimazole 40mg less than 3 weeks and neotrophils dropped with slightly raised AST and ALT liver enzymes.
Endo told my GP to stop that and go on PTU.
One week on only beta blockers then started 400mg PTU. Liver enzymes went up to 6x normal levels. Liver ultrasound returned normal but have constant pain in RHS abdomen. PTU also makes me feel really sick. Only been on it just over 3 wks. Urgent referral to endo took place a few days ago.
Endo has put up my PTU to 500mg with view of Thyroid levels coming down to enable RAI in new year. I told him i don't want RAI but really didn't have energy to press the point as the aapointment was very rushed.
My GP is phenomenal and seeing her Monday after giving her my less than impressed view of endo appointment.
Reasons i am against RAI - studies re increased cancer risks, need to remain on PTU for months, unpredictable effect etc etc. My eyes are increasingly painful like inturned eyelashes (but not) and pressure/ light sensitivity and going to get referral to ophthalmology.
I also have borderline personality disorder and dissociative identity disorder on 50mg sertraline daily. Been on this 10 years.
Stuck between a rock and a hard place as any form of medication treatment is out.
Decision to have TT is not exactly a walk in the park, despite inherent risks of surgery, i am definately leaning that way.
My issue is either way i am concerned how i will respond on thyroid replacement medicine.
Think i am just looking for a bit of reassurance around TT. Im 46 so hopefully got a good 40 years left in me and trying to find the best quality of life decision.
Would really appreciate any experiences you could share with me of life a few years after TT.
Been reading some studies on cancer risks from levothyroxine- so seems RAI a double cancer risk whammy. Thanks
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MsPeartree
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There are risks with any surgery / or procedure, that’s why it’s only considered when alternative aren’t suitable.
Doctors seems to favour RAI as it’s easily administered, and for some it might be suitable, but for many reasons for some individuals it’s not a preferred treatment & if having eye issues this should be taken very serious by specialist.
When thyroid is removed or ablated Levothyroxine is often needed at higher levels so the T4 sufficient convert to FT3. T4 can proliferate cancer & this might be the reason for the research suggesting it’s connection to higher rates of cancer.
Usually anti thyroid treatment is taken round around 18 months & dose adjusted until levels naturally in range. There is a good chance of achieving remission even beyond this time frame. Many take antithyroid for years.
Is there a reason doctors are rushing to definitive treatment?
I have hyper from nodule which isn’t autoimmune & have taken Carbimazole over 3 years. I was referred for RAI early but haven’t agreed to undergo it.
Say you don’t think RAI is suitable option, & If you undergo thyroidectomy will you have FT4 & FT3 regularly monitored and if LT4 doesn’t keep you well - Will they add LT3. They should put an answer in writing. by your doctors response you’ll know if they will ensure you’ll be well treated - or if after treatment it’s expected your GP can perscribe levo, many believe T3 isn’t necessary.
hi I had RAI on 14 April 2014 - WORST thing I ever did. My TSI antibodies have never settled and I’ve been now been told categorically that it is due to RAI.
One month following my rai my eyes went ballistic. I have struggled since then only in July this year finally been listened to by endos and ophthalmologist - in fact took a referral to a neurologist to convince them. I am now allowed to have oral steroids when my symptoms flare up.
A lot more is known now than in 2014 but nonetheless, if I had my time again I would not go the rai route as it left me with cycling symptoms at times making me feel life wasn’t worth it. My best recommendation is to do as much research as possible. Thyroid Uk have loads of info and the charitable TED trust. I wish you well in your recovery and what you choose to do. 🙏.
just another thought with your eyes. Request a scan. CT or contrast mri. My TED is unusual in that I have no protrusion. My skull shape is ‘Asian’ which means my fatty tissue is all behind in the muscles so that it doesn’t look too bad. As soon as I had a scan, after RAI, Drs were shocked at how congested the muscles are.
I’m sure you’ve been recommended to take 200 mg selenium for your eyes and use preservative free eye drops and gel at night. Best of luck 🙏’
Been eating 3 Brazil nuts daily since diagnosis. Saw optician early oct and my eyes were very dry. Seems like getting rapidly worse in last week. When i see GP i am asking for referral to ophthalmology- once there i will ask for a scan. Thanks for this advice
You can buy OTC drops, sprays and heavy duty tubes of grease for overnight - though you'll have trouble seeing your dreams !!
Whatever you choose please just ensure that all of the products are Preservative Free even those that might be prescribed as the eye consultant I was referred to simply compounded my problems by prescribing with preservative eye drops and I had to find all this out for myself !!!
Graves Ophthalmology is a specialised field - maybe check out the Thyroid Eye Disease Charitable Trust as they can signpost you to your nearest specialist clinic where I believe an endo and an ophthalmologist work together to help find your optimum treatment.
hello there, I have graves since 2018.I also have thyroid eye disease.I will reiterate what others have said, RAI isn't recommended if you have problems with your eyes.Insist on a referal to opthamology to be sure.I tried both types of treatment(titration with carbimazole only, and block and replace with carbimazole and thyroxine) but after alot of soul searching and research I decided on thyroidectomy in June last year.I finally had it June this year.I feel so much better.I take thyroxine only and so far things are ok.I have kept my profile updated so if you want to have a look at how things progressed for me just click on the picture at the side of my name and there it is.Hope this will be helpful for you to make your decision.
Well this endo was dismissive and I'm deeply concerned that RAI was still seen as an option and that your eye symptoms were denied -
I now wonder if a second opinion is an option - as with a competent endo maybe you can find a course of AT drug and beta blockers that works for you as previous detailed in my reply to you in a previous post.
This endo maybe just following hospitial trust guidelines so you may need to look further afield to a more enlightened specialist ?
If life on AT drugs is intolerable while you wait for your immune system to calm down the option is to have a thyroidectomy which is considered the cleaner and more precise option with the thyroid gland and contents totally removed from the body.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
The NHS routinely prescribe T4 monotherapy - which is a storage hormone that needs to be converted by the body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4:
Some people can get by on T4 - Levothyroxine.
Some people find that T4 seems to stop working at some point in time and find that by adding back in that little bit ' lost ' that their own thyroid produced they can restore T3/T4 hormonal balance and wellbeing.
Some people can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst other people feel health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
NDT was the original successful treatment for hypothyroidism for over 100 years and on the back of which Big Pharma launched T3 and T4 thyroid hormone replacement medications in the middle of the last century and systematically went about trying to create their market share monopoly.
I had RAI ablation in 2005 as detailed previously and was ok on Levothyroxine for around 7/8 years and then fell down a big black hole which I have had to get myself back out of as the NHS refused me any help and denied me both T3 and NDT - though these are both prescribed on the NHS.
I now self medicate and have been taking NDT for the past 5 years, I look after myself and haven't seen the doctor since 2018 and am much improved.
I went once in 2016 and told to go on the net and buy some ?? and come back and I'll treat you with it privately and at 185 pounds a go - thought the man mad.
I also naively thought that as Head of Endocrinology where all my treatment from diagnosis had been he would have looked back at my medical records and would want to explain why and what had gone wrong and how it could be fixed.
Roll on 2 years and by then having been refused both NDT and T3 by my doctor and the only hospital in the county where I had all my Graves treatment and the RAI - I was on the net buying my own and did it for myself as I wasn't giving that man any further satisfaction for the system in place.
At the time I wasn't well enough to travel further afield and not aware of any other person down here in Cornwall and after reading a couple of books felt confident enough to go it alone.
I agree with Pennyannie - get a 2nd opinion and definitely avoid RAI if at all possible. Drug combinations these days are far superior to what was available when I was offered 'carbimazole or carbimazole' The same applies to patient information/advice and indeed the facts pertaining to your own blood test results, once kept secret but now openly shared so you can make informed choices : zero TSH doesn't sound like a usual test result and what are your FT4 and FT3 scores?
I was shuffled into RAI literally without any knowledge and regret it bitterly. Unless you are significantly over range in your thyroid bloods I wouldn't go near an Iodine pill or a scalpel until I had exhausted every other option.
Thanks - seeing my gp shortly to do just that re 2nd opinion. My original results 30 Sept 22 were...Trab 6.2ul - no range on results
TSH <0.01mul - range .35 to 5
FT4 27 - range 9 to 21
FT3 4.4 - range .9 to 2.5
TPAb 496 - range <6
Last TH tests were 3 wks ago and the FT 3 and 4 had gone up. Don't have those numbers to hand though. TSH stayed at less than 0.01 (what i call zero). Medication - both carb and PTU - have caused more damage than good. My liver enzymes AST and ALT are 6 times over normal... hence why definative treatment now being looked at so soon. My symptoms got a bit better on carb but it started the liver damage and also dropped my blood count. Ptu then started and i swear it is making every symptom worse and much more liver damage to boot.😖
Every situation and result is unique, but in my experience I developed postpartum Graves’ disease and was convinced to do RAI. I wish I could take back that decision because it gave me TED, which I didn’t have before. Now, 4 years later I’m still in an active phase of the disease despite taking corticosteroids. My eyes are disfigured and constantly sore. I would be very careful that whatever treatment you do doesn’t cause TED because it is so much worse than just Graves’ disease.
It is astonishing the number of negative experiences amongst people as a direct result of RAI. Why are they still doing it.....oh yeah its cheap and quick. I feel for you with what you are going through and hope your eyes go into dormant stage and stay there soon.
I had a TT due to thyroid cancer. Balancing meds can be a challenge but with the help of folks here you'd be able to find what works best for you. The most important part is to find a very experienced endocrine/thyroid surgeon. Thyroid surgery can range from a walk in the park (mine was outpatient and we stopped for gelato on the way home) to extensive for some cancer patients with lymph node involvement (which shouldn't apply to you). Surgery will disrupt calcium balance for several weeks (rarely permanently if parathyroids damaged or removed). Laryngeal nerve and vocal cord disruption is also a risk but usually temporary (weeks to months) - this is a consideration if you are a speaker, a teacher or public speaker.
Second opinions are usually a good move though I have no idea how they are handled in the UK. But a well qualified experienced surgeon is key - even if it means travel.
Thanks. I know about the surgeon register on the UK association of endocrinologist surgeons. It details the number of surgeries and complications rate.
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