My name is Angela. I have experienced hyperthyroidism- graves on and off for 20 years. It is usually controlled with medication and I can be without medication for periods of time but for some reason it pops back again and again. I have been told it would be best to do surgery to remove the thyroid or radiotherapy but am very unsure of which one to go for if any. I was told I would not be able to be around my children for 3 weeks after radiotherapy- which made me concerned if its unsafe for them then what is it for me? A friend of mine found this site and suggested I ask people that have probable lived through this experience or chose. I would really appreciate any advice or experience any of you have had. Thank you for reading and any advice given.
Advice and experience would be very m... - Graves Disease Su...
Advice and experience would be very much appreciated
Hi. I think u will receive quite a lot more feedback if U post this very good question on the main site for all thyroid issues hypo and hyper. People do look at this site but not as much as the other site. I am only one year into my diagnosis and I personally would not consider RAI. Ever. I am not ok with that toxic mix in my body. If I ever have to make a decision to remove my thyroid it will be via surgery. I live in New Zealand and we do not prescribe T3 or NDT here only levothyroxine so not alot of pro’s for surgery there if u need T3 support. I think if u can medicate with anti thyroid drugs then that’s all good and well. If your liver decides to give u issues or your kidneys and heart then that’s when a serious decision needs to take place. From my understanding AT drugs are valid long term option and do not be scaremongered by specialists saying otherwise. Obviously every choice comes with consequences. There are alot of people who will be interested and have an opinion on this matter. Kindest regards always NIKEGIRL
Hello Angie and welcome to the forum :
I am with Graves, diagnosed in 2003/4 at age 56 and giving RAI treatment the following year.
I deeply regret this treatment option but wasn't given an option though well on the AT drugs, and in all honesty just went along wih what I was told, believing it to be in my best interests.
I think first and foremost we need to know, for sure, that you have postive and over range Graves antibodies as generally speaking Graves is considered life threatening if not treated as T3 and T4 levels tend to keep rising to very high, dangerous levels without medication.
Phases of hyperactivity are generally associated with Hashimoto's AI thyroid disease which initially expresses itself in a similar way to Graves, but generally isn't treated until the patient starts becoming hypothyroid.
Since we have seen people on this forum having been misdaignosed Graves instead of Hashimoto's it is important to know which antibodies are attacking your body.
Both Graves and Hashimoto's are auto immune diseases, Hashimoto's only attacks the thyroid, whilst Grave's attacks can be multi organ.
For Graves the unique antibodies are usually written as being a TSI ( a thyroid stimulating ) antibody and or a TR ab ( a thyroid receptor blocking ) antibody.
Do you have any current TSH, T3 and T4 blood test results ?
It is now known that there is very little evidence, if any, that states that staying on the AT drug long term is dangerous or harmful.
In some people Graves can burn itself out, rather than taking RAI, a toxic substance, to speed up the process.
I am now self medicating and buying my own full spectrum thyroid hormone replacement as the NHS routinely, only prescribe T4 thyroid hormone replacement which stopped working well for me around 8 years after RAI treatment.
I found no help nor understanding withn the NHS and after around 4 years of various outpatient appoitments and no resolve, and going in a continual circle of ever decreasing wellness, referred to as a conundum and offered anti depressants, I had no option left but to do it for myself.
You might like to start reading up on the Thyroid UK website, who are the charity who support this amaing forum, and which enabled me to get my life back on track.
You might like to read further of Graves Disease on the Elaine Moore Graves Disease Foundation website. Elaine had RAI at the end of the 1990s and finding no help with her continued ill health started researching this poorly understood and badly treated auto immune disease herself.
Now, 20 odd years later Elaine is something of an authority on Graves with several books and a world reknowned website available to all, to read and understand the complexities of Graves and other thyroid AI diseases.
Thank you so much, this is so informative and giving me lots to research. I live comfortably without medication for long periods of time, so I am going to read up on Hashimoto's AI thyroid disease. I am getting blood test this week so will share me results if you don't mind. I am so glad my friend recommended this site. thank you again.
Hey there :
Do you have online access to your past medical records ?
If so you should be able to work backwards to when first diagnosed and see the medical evidence of which antbodies were over range and positive and it will also be interesting to see your initial TSH, T3 and T4 blood test results and ranges at diagnosis, before you started the anti thyroid medication.
Better safe than sorry :
I don't have online access however I have requested each blood result and kept them at home. At work at the moment. Sorry you have had such a hard time and didn't get the support you needed from the NHS.
I had episodes of needed to be medicated for a year in my 20's, then each time I was pregnant (all been high risk pregnancies and have miscarried due to spikes). All together the amount of spikes I have had is about 6, in between these spikes I am medication free, is this normal? I have ended up in hospital with all my joints swollen but this was later diagnoses as an arthritis episode- which quickly went away once my levels came down. This time my GP quickly referred me to consultant. I was a little uneasy with the way the consultant managed the appointment with me- I asked questions like; why this happens, is there anything I can do to minimise it but was informed that 'nobody knows'. Which probably is the case 
but i was also given these two options which sounded quite drastic and was told that radiotherapy was like getting an X-ray, which I really do not believe. Hence joining the site, i am so glad i did.
Serum TSH level (XaELV) < 0.01 mu/L Serum free T4 level (XaERr) 28.4 pmol/L
Serum free triiodothyronine level (XaERq) 14.9 pmol/L
I need to make myself more informed; It is clear I have no idea and just got with what is recommended instead of getting to know what each thing means.
No worries was this the blood test as diagnosis ?
Does it show any antibodies : TSI / TRab / TPO / TgAb / ????
The bloods before any medication were prescribed.
Any antibodies - I've just listed them above ?
No TSI / TRab / TPO / TgAb at all.
My TSH is still .01
Do you have any T3 and T4 blood test results along with this TSH of 0.01 ?
T4 31.6TF3 24.0
So it's coming down, and am getting bloods done this month.
Hey there :
I'm not ignoring you - my laptop has "unexpectedly " closed down twice in the last half an hour and I've lost twice what I had written ;
I'm going again, but if it goes again, I'll pick you up in the morning :
Oh my goodness, that sounds like a nightmare. No, not at all, I never thought at all you were ignoring me. I thought it was very late for me to message, sorry I never noticed the time.
Well yes, I usually close this by 7 pm otherwise I can't sleep by 10 pm - never mind :
I'll try again, as with my Graves I need to have everything " done and dusted " before my brain switches off ?
You turn off, so there's no expection for me to reply tonight as this takes the pressure off us both and I'll pick it up in a while, or tomorrow morning.
Thank you for all your help and sleep well. 
OK - considering you are on the AT medication these results look high - can you take more AT medication to bring the T3 and T4 down more quickly ?
How are you feeling ?
When either hyper or hypo and metabolism running too fast or too slow you will find it more difficult for your body to extract essential nutrients from your food. You need to ensure you maintain your core strength strong and solid and keep ferritin, folate, B12 and vitamin D at optimal levels to help support you through this phase.
Now maybe is a good time to ask to have the antibodies run.
It looks like Graves but to be sure the antibodies should have been identified at your original diagnosis.
Your understanding is correct - Graves is an autoimmune disease and as such for life.
All the radical treatment options do is offer switching you from what is considered a " life threatening " health issue to a possible " life limiting " health issue.
You will still be on daily medication but mainstream medical seem to believe treating hypothyroidism is " easy ' . It is not, especially if you haven't a thyroid and unable to access more than T4 thyroid hormone replacement, which is the only medication doctors in primary care can prescribe.
Well last time I looked there were over 112 thousand people registered on the Thyroid UK website, looking for help with their thyroid health and experiencing a great lack of knowledge and treatment in primary care.
With Graves medical mainstream are at a loss and the thinking is by destroying the thyroid the Graves is solved - it isn't, it's an auto immune disease BUT if you haven't a thyroid the symptoms are not life limiting nor needing a hospital appointment.
Hospitals have always been encouraged to be actively reducing O/P waiting list times and with the current situation the backlog is even more acute and numbers of patients not even having had their first appointment growing by the day.
Hospitals general allocate a 15-18 month window for treatment wih the AT medication and the suggestion is put that if not " successful ' the better option is to have RAI as it's just a drink, or a little tablet, and a discharge back out into primary care.
RAI is likely the hospital first treatment option offered - it is the cheapest option - and a quick fix for them, just a 20 minute O/P appointment and a discharge note, but not necessarily in the patients best interests.
Surgery is more expensive but actually " cleaner " as the thyroid gland is removed along with all it's contents, but it means an operation, and a theatre, bed and board.
So, the options aren't great, you're between a rock and a hard place, drink a toxic substance or have your throat slit open - for an auto immune disease that you'll still have, but then have hypothyroidism to manage as well ???
The long term treatment with AT medicaton is the most sensible though most expensive option and discouraged though current thinking finds there is no harm to the patient staying on AT medication long term and taking this route.
There is a very interesting article written by Professor A Toft - check him out - entitled Thyroid Hormon Replacement - A Counterblast To Guidelines - 2017 - written in his retirement year from the NHS in which he writes :
" I am so concerned about the state of advice on the management of primary hypothyroidsim that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Grave's disease, irrespective of age or number of recurrencies of hyperthyroidism "
The full article in on this forum somewhere, and the whole 3 pages says exactly where we all are in the current climate.
I'm sorry my ability to cut and paste is that of scissors and glue, so can't do this bit for you :
You have been a godsend. I should know more and you have directed me in the right direction. I will defiantly ask for the additional blood to find out about antibodies. I am not sure how to thank you enough for all the effort, information, and staying up late
I've rewritten bits of it since first posting so you may need to reread it as I didn't want to loose it again - I've actually forgotten what the question was and just " gone off " on one !!!
That is 100%
There are now 119 thousand people on the Thyroid UK website looking for help with their thyroid health ???
Thank you - I'm now up the wooden hills :
Catch you tomorrow and try ad ask any questions you may have, and probably some you haven't !!!
Night night
Sweet dreams:
night night, you too..
Ok these look high - are the ranges 12-22 for T4 and 3.1 - 6.80 for T3 ?
Are these your current results and are you on any AT medication, Caribazole or PTU now ?
T4 normal range 7.5-21 and 3.8-6.0 for T3. Ya, it is high. I am on Caribazole currently but is it normal for this condition to come back again and again. And to live normally without medication for so low between episodes. Because of what I read it is a long-term condition that needs medication to stable it.
A TSH seen in isolation is pretty meaningless - do you have any T3 and T4 blood tests drawn along side this TSH of 0.01 ?
No TSI / TRab / TPO / TgAb at all.
I don’t have Autoimmune Hyper, but would need to take carbimazole lifelong to stay euthyroid. My last resort will be RAI or surgery.
The specialist informed me RAI was my treatment plan almost immediately. They do imply you don’t have a choice, but you don’t have to accept their designated treatment. If your instincts say you shouldn’t proceed you can decide how you should be treated.
Bear in mind much of what you might read may not be the most positive examples. To give a balanced view please try and remember there are many who undergo treatments & do not experience any complications. They are living their lives without the need to seek help from a forum & there isn’t the data to show by what majority completely recover & the percentage may have some struggles.
Thank you for you message, this is true for me also.; It was the first time I met this consultant and I believed I had to pick one surgery or RAI before our next appointment. You have remined me that this is something that I need to be in control of. Thank you. Am going to get as much information as possible.
You may want to have a read of the patient information leaflets about RAI, surgery and anti-thyroid medication, from the British Thyroid Foundation. hospitals often hand them out & the information is presented how a doctors might explain the treatment ie they are factual, but lightly touch on the negatives. So it worth familiarising yourself with how medics view the treatment.
I have found doctors prefer to dish them out whilst refusing to discuss any queries I wish to raise. I’ve now been sent a collection of 4 ‘out of date’ versions.
btf-thyroid.org/Pages/Categ...
This information from the anti thyroid medication leaflet is useful to know.
Can I take CMZ or PTU long term?
In theory there is no reason why not, provided your thyroid gland remains well controlled. It will initially involve regular clinic visits and blood tests every six to 12 months, under the supervision of a specialist, as doses may continue to need to be adjusted. Once you are stable on a low maintenance dose you may be discharged for follow-up by your GP. You will, however, remain at risk of side effects. Many people feel that radioactive iodine is a more straightforward solution.
Thank you, this is very much appreciated.
@hanflow
Good morning to you :
Just a thought - on the Thyroid uk forum there is a post by a lady
@hanflow
Low TSH normal T4 and T3 :
very similar situation to yourself - might be worth a read and contacting ?
Thank you will have a look. x
Well, if nothing else if you work through the answers you'll find the missing link ??
to the Prof. A Toft article !!!
Hi Angie_O, another Angela here! I had a very over active thyroid (Graves Disease) in 2012 that did not respond to meds so I had the RA Iodine in May 2013. I was advised not to have surgery due to the damage that might be caused by such, and the problems with calcium balance for years to come. So far, I have had no problems and am stable on 100mg 125mg Levothroxine on alternate days.
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