Hello! I was diagnosed with Graves Disease in May 2017, my levels of TSH came down to normal range and so I was taken off Carbimozole in March 2019. Two weeks ago I was admitted to hospital with a heart rate of 160, where they'd found I was down to 7.5 stone and unfortunately that my hyperthyroidism has returned. :(. I am now fhaving to have definitive treatment. I don't know which option to take. The thought of the scar on the front of my neck with a thyroidectomy really upsets me. However, with the radioactive iodine, my endo said that I would have to stay one metre away from people for three weeks. To me, this feels very isolating. Having gone through treatment like that and not being allowed near anyone. Has anyone had different advice? That you are allowed personal contact before the 21 day mark? I really would appreciate hearing of others experiences and what they chose to do as I am struggling to find any pros with any of them. Many thanks in advance 
Radioactive Iodine Treatment or Thyroidectomy? - Thyroid UK
Radioactive Iodine Treatment or Thyroidectomy?
When I had RAI there were few restrictions, I had young children and it was arms length for a week, I carried on much the same as usual.
Scars from thyroid op are usually really fine and unnoticeable providing they heal well, I had my first neck op in my teens and a 3rd one four years ago, the scars have never bothered me.
Only you can decide what to do 🙂
Hi Bantam, thank you for your response May I ask how your experience of RAI was? Did it cure your hyperthyroidism? Are you now on Levo?
Giorgia
RAI is easy, pop into the hospital nuclear dept, swallow a pill and go home, I had no after effects at all other than tiredness when I went Hypo within 4 weeks and I've been on Levo since.
The surgery isn't bad either, my thyroid op was a long time ago so I can't really remember details but I had parathyroid surgery which is similar 4 years ago and although it was uncomfortable for a while it was ok. I now have 3 scars on my neck which are fine white lines, one is about 4" long but it doesn't bother me at all.
Hi I’ve just been taken of carbimazole after 18 months and back to see the consultant in September for more bloods to see how I’m doing, he told me if I go overactive again I have two options RAI or TT and like you I really don’t want either and don’t know what to do, I’m following your post as I would like to know more about the RAI treatment as well.
Hi Ginger Bread. I really think it is down to the individual. When I was taken off Carbimozole in just March of this year I was told that it has a 50/50 chance of returning. I was unlucky. I had a blood test just two weeks before being admitted to hospital and my levels were normal so they really have shot up on a short period of time. Best wishes to you and I really hope your thyroid woes were cured once and for all with the carbimozole!
Giorgia
Thanks gio, I’m just hoping that I stay stable and don’t go over again, I was diagnosed with Graves’ disease, I really hope you found out what’s the bed road to go down, I’m not sure which I would want wether RAI or tt, I will have to see how I go and then think about it if I have to have one or the other, good luck and let me know how you go on 😊
Hi Gio,
I am so sorry to hear you are ill. I had a TT 4 1/2 weeks ago with Graves and toxic multinodular goiter.
At one point my MD was talking about RAI - I was told the period of being away from others was 1 week. I have never heard of a 3 week period.
With the TT, as far as scar goes, mine is almost gone - it’s a bit reddish, but I am told that will disappear within another 6 months. It is hardly visible now.
One question I have, do you have a goiter and if so, it is big? And if you don’t mind my asking, how old are you?
If you have a goiter you may need to have the thyroid removed eventually. So the question becomes do you do it now or later. I have found from reading posts here that younger people and men seem to do better with RAI than older women. Just an observation here with no science behind it.
However, there are some scientific studies that suggest that those with Graves fare better with surgery than RAI. It has been explained to me by my endo that when you leave thyroid tissue behind, it is still possible for Graves to continue to attack the tissue. This the reason that you might eventually need surgery anyway.
Again, these are very tough decisions. Neither solution is really great - because you will be hypothyroid and that will have to be managed. And you will always have Graves antibodies.
My surgery went very well because I had a skilled surgeon who specializes in thyroid. I have a good endo who has me on the right meds. Sadly this is not the case for many on this forum. For me, RAI was not an option because of my goiter.
Even with all that - I am still not well adjusted to my meds yet and have a ways to go. There is definite improvement but not there yet.
Pros and cons: TT is a tough surgery - at least 8 weeks total recovery to be back to some semblance of functioning . The pro is that you have the diseased gland out. With RAI you have no surgery - but have other issues - side effects from the radioactive iodine and long term effects with greater risk for Graves eye disease. Please read posts and replies from pennyannie. She knows a great deal about RAI.
Hope this is helpful to you in making your decision. It is not an easy one to make and very personal. I wish you all the best.
Hi Greek chick.
Thank you for your reply!
I wonder if the 3 week mark is an NHS guideline, if you are not based in the UK?
That is comforting to hear with regards to your scar. I have seen many neat scares but some look awful. I don't know if they have gotten better over the years. I'm also worried that as I cannot afford private treatment the scar will be worae than if I could afford to go private.
I have a slight goiter at the moment. I had a rather large one when I last was hyper. It isnt very noticeable presently but can feel quite tender and generally uncomfortable at times. I'm also a 25 year old female. However, the endo has offered me both TT and RAI.
I'm glad to hear your surgery went well and I hope your condition continues to improve!
I will have a look at pennyannie's posts now.
Thank you so much
Giorgia
Sorry - typo in last post - should be one week not two weeks.
Hi Giorgia,
I don’t think the 3 week guideline is UK - because most of the people on this forum are from UK and they all say 2 week. Maybe your doc is very conservative.
In North America, most thyroid surgeons are trained to close incisions with plastic surgery techniques. I do not know how it works in the UK - and would not want to venture a guess. I think it depends on the skill of the surgeon.
You are lucky you were offered both options - some people are told what they will have with no consult at all!
Thank you for your good wishes - I so appreciate them and I wish you well. Let me know if I can answer any other questions. All the best to you.
In my opinion...exhaust all efforts before you do either. The thyroid effects so many things in the body. I had RAI & wish I would have tried everything before I did it (although I was really sick too). But it thru my body for a major loop. I have not been doing well since I had RAI about 4 years ago. I would rather have RAI & be isolated for a week...than to have someone cut into me. I think they both have kind of the same end result. I just hate the thought of someone cutting into me.
I had the same choice back in 2005. However, it is only the first week where I had to not sleep with my wife and avoid close physical contact with my kids. The one group I had to have total avoidance of was pregnant women, which was quite fortunate as I shared an office with an expectant Mum - it gave me 12 weeks off work when I felt fit and well!! Seriously, for me it was a no brainer, the thought of having my throat cut and then the recovery from the op was not for me. The RAI was painless, relatively easy (the only hard part is the awkward shape of the thing I had to swallow, it was like a small chess piece) and most importantly very effective. Good luck.
Hi Gio,
I cannot comment on the RAI or Graves. But I did have a TT in November 2017 due to multiple goitres pressing on the windpipe and making it hard to swallow. I wish I had undertaken research, as you yourself are doing, I will always wonder if I had been told I had thyroid disease could I have averted the TT. But, it's a hard road either way. Getting the medication levels right is an ongoing saga. But you may be lucky. As far as the scar is concerned. In Australia here they do the cut in the crease of the neck, and I used silicon patches every night for 6 months and I have no scar at all. Good luck.
Hi GioFarmani I choose the thyroidectomy - it was 27 years ago - because I didn't like the idea of something 'radioactive' being put inside me - my scar is only about an inch and a half and over the years has faded. Yes it is still noticeable but truthfully it has never bothered me. I wear low tops and never even think about it. But it is a personal choice and I understand your concerns. Good luck with whatever choice you make.
Hi, I had a total thyroidectomy many years ago which I chose as opposed to RI. I avoided the RI partly because I was told to be away from people for so long and I had a young baby which simply wasn’t practical. I felt that for me, a thyroidectomy was the best of the two options. I think you have to go with your gut feeling on this. All I would say is, if you decide on a thyroidectomy, find a surgeon who is a true specialist and does them all the time, as opposed to someone who does them occasionally, as I was initially offered. I felt much more reassured and have a tiny scar that is pretty much invisible. It is a difficult decision to make, but something will point you in one direction or another. For me, finding the right surgeon really helped. Best wishes.
Hi. I had Rai treatment many years ago. The time was only a week. I didn’t have any children at home but l did have pets and except for not going out l carried on as usual. Good luck with whatever you decide to do. Yvonne
I had RAI in June 2016 at The Royal Marsden and was given very detailed info on how long to stay away from different situations. I still have the sheet they gave me and it is 23 days away from pregnant women and infants under 3yrs. 3-5 yrs avoid close contact for 18 dayt 5-16 12 days. Avoid long journeys 2 hours or more for 5 days. No social events for 3 days. Sleep separately from partner 3 days and a metre away from people for 3 days. Do not share towels and luckily I have 2 toilets but good cleaning of toilet after use as radioactive comes out in the urine. Do not become pregnant or father a child for 6 months. I also had to carry paperwork when I went on holiday as the airport scanners can pick up radioactivity firbup to 6 months after. I flew 3 months after my treatment and the scanner picked up on me. I regret having my thyroid killed off as life without a thyroid for me has not been great but when the carbimazole doesn’t help (as in my case) we seem to have no choice. 3 years on and I’m still trying to accept the changes that have happened to my body. Hope these guidelines help. Everybody is different though I guess. Good luck
Hi kazb1966. Could u share how the carbimazole didn't work for you?
Thank you
Hi I was on it for 2 years (my Endo said they really don’t like you being on it for longer than 12/18 months) by then I think if it was going to do its job it should have in that timescale but I still remained hyper so they suggested RAI which of course doesn’t always work or only kills off part of it but my scans after RAI showed my thyroid was dead. It turned out that in 2013 I actually was hyper I had severe itching and was referred to immunology then but nobody acted on it and I wasn’t aware of all this until 2017. I had so many nodules growing where my thyroid had been on the attack that RAI was my only option.
I had thyroidectomy for Graves in 7 years ago. If I could have my thyroid put back in I would. Haven’t felt right since with hypo symptoms- 3 stone weight gain/ fatigue etc. Feels like constant fight to get treatment including threat of withdrawal of liothyronine which helps me somewhat. The scar doesn’t bother me, but it shows more when I am tanned. It is meant to be in a neck crease, but mine is lower. Perhaps another option is to ask for another go with the tablets especially if you tolerated them well ? /second opinion if consultant refuses? Good luck.
Hello GioFarmani
I am with Graves Disease, diagnosed in 2003 and told I was to have RAI thyroid ablation in 2005. I am now with Graves Disease, thyroid eye disease - a known possible side effect of radioactive iodine and hypothyroidism.
Radioactive iodine is a toxic substance that you drink down, it is an easy, painless treatment, and just a quick appointment in outpatients. The toxic substance collects, mostly, in your thyroid and burns out this major gland, destroying the glands ability to function, ultimately rendering you hypothyroid. It is known that a proportion of this substance will be taken up by other glands and organs in your body.
Radioactive iodine can also aggravate and increase the probability of your developing thyroid eye disease.
All I will say here is that I received no information on the above potential issues.
Had I known my eyes might get damaged and my appearance change, my vanity, if nothing else would have kicked harder against this treatment, considered in many countries barbaric and not an appropriate treatment for a hyperactive thyroid.
Apart from my visual appearance having changed, I became hypothyroid within weeks and became underactive and was dosed on Levothyroxine. I never felt " back to my old self " but as I was then 58 I thought it was an age thing and just got on as best I could, being assured I was well, as the blood tests were in range, and offered anti depressants as a sort of consolation prize.
In around 2014 my eyes, ears, nose felt as though they were drying out with no lubrication and eventually my mouth stopped producing saliva, my salivary glands appeared to have stopped working. I was found negative for Sjogrens Syndrome and given no answers or help from the NHs, the only clue being I had a low ferritin level on the blood tests.
I started helping myself, as no one except my dentist seemed able to help me.
I found this amazing site and learnt of the importance of vitamins and minerals.
I found the Elaine Moore book - Graves Disease A Practical Guide, and read how symptoms similar to Sjogrens can occur in some patients, after RAI. I was so relieved to read of my symptoms in a book and started further research. Elaine Moore has Graves Disease and found no help herself when going through RAI in the late 1990's so wrote a book to help others. She now runs a very well researched and respected website in the States on all things Graves for all Graves patients and their families. The platform is well researched and documented, very much like this excellent site, and there are open forums for free exchange of information and help and advice from real people.
I discussed this with my doctor, I purchased a second copy of this book, thinking I was helping but it was no taken up by her, so my sister became my back stop reference support.
After about eighteen months my saliva started to reappear, I have had to have extensive dental work undertaken and I would not wish the past five years on anybody else.
I believe I have been suffering from the long term consequences of RAI, my whole digestive tract having been damaged, my gastric mucosa burnt, which became evident when an endoscopy had to be aborted and the colonoscopy so painful I collapsed waking up with both arms attached to machines and drips, and a medic who continued to exert pain while he poked around and told me I was a nightmare patient but that he couldn't see anything suspicious. I had had both these procedures before, prior to RAI without any issues, so the only change in my circumstances was the RAI treatment in 2005.
Many patients do have RAI and would appear to be fine afterwards.
I guess it's a game of % and I fell through the crack, I don't know why, or by how many, this treatment fails some of us, because I have found no help within the NHs system.
RAI is the treatment of choice on the NHS as it is the cheapest option, but it may not be in your best interests.
A 20 minute outpatient appointment and a discharge back out into primary care, compared to the costs of financing a operation and all that that means.
Please do your research, the thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual wellbeing. The thyroid is the main conductor of your body orchestra and controls your metabolism and central heating system.
Living without a thyroid comes with its own set of problems especially when you are unable to access the relevant thyroid hormone replacements through the NHS.
A fully functioning thyroid supports you daily with approximately 100 T4 and 10 T3 but under the current NHS rules after thyroid ablation or surgery, monotherapy with T4, Levothyroxine , is the treatment of choice. Last year I was refused a trial of T3 by the NHS despite my un wellness and erratic T3 blood test reads, which I might add, I had to pay for, to prove I had a problem.
Professor Toft has written an article entitled Thyroid Hormone Replacement - A Counterblast to Guidelines - 2017 Journal of the Royal College of Physicians Edinburgh:
in which he states :-
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism. "
Well the whole article, is available on this website somewhere, and is very interesting but that particular extract is relevant, and hope you make an informed decision and look at all the information, that isn't necessarily on the NHS website.
I am now self medicating with Natural Desiccated Thyroid, I am getting my life back but sadly, outside the NHS system that I thought was there to help, believe in and trust.
As a P.S. I was ok on carbimazole, I continued to work, and knowing what I know now, I would have asked that my treatment be continued on with anti thyroid medication with a view to titrate me down, once my antibodies were low in range with a view to stay on anti thyroid medication or even finding remission, thereby giving me options in the future.
I believe my age at 56 was the deciding factor in my treatment being RAI - there was no treatment choice open to me. Nor any additional treatment offered, of which I now read of, that is offered prior to the RAI in an attempt to offset some of the swelling and disfigurement around the eyes that can happen after RAI.
Dzień dobry. Jestem po leczeniu radioaktywnym jodem. To lepsze niż operacja. Bierzesz tablet i wszystko. Najtrudniejsze dwa tygodnie. Ale można to tolerować. Przez tydzień zerowy kontakt z ludźmi za 1 metr. Dłuższy okres dotyczy dzieci i kobiet w ciąży.
Got curious and used Google Translate:
Good day. I'm after radioactive iodine treatment. It's better than surgery. You take the tablet and everything. The most difficult two weeks. But you can tolerate it. For a week, zero contact with people for 1 meter. The longer period concerns children and pregnant women.
Hi there,
I have been reading all the excellent advice you have been given - as some say it is up to you - I don't like having a full anesthetic but don't mind a local. I had a couple of medical opinions before I decided so I opted to swallow radio active iodine - only trouble was their monitor wasn't working properly and they overdosed me. That was over 30 years ago and I was told then not to go near children or pregnant women for a week. but I could mix with adults. I had my elderly parents living with us at the time. I have been on Oxine ever since but then that is another story.
I had thyroidectomy almost 3yrs ago and you can hardly see it
With thyroid problems, the last thing you need to be bothered about is a little scar or 2 on your neck. I have 3 of them, parallel to each other and I'm rather proud of them. Back in 2005 I was dismissed from hospital after a total thyroidectomy, fully fit and well, still with the stitches in my neck. It was great fun going round Tesco's and watching for reactions. The till operator looked as though she thought I was Frankenstein's monster! Also great for scaring the kids. Wonderful fun.
Being serious, no surgeon is likely to recommend surgery unless there is no alternative. It is a rather dangerous operation and needs a very skilled hand.
I am not particularly inclined to recommend RAI as an alternative to surgery, but at least you will not die from it. It will be quicker and easier to recover from, I was not advised to take any extensive precautions after 2 or more maximum doses for the ablation of residual tissues. There was a funny situation on a TV documentary last week where a women was going through customs shortly after having RAI and readily identified by inspectors; there are a few laughs with thyroid illness, but few and far between!
Whichever way you choose, or is chosen for you, you will most likely find yourself in the position where levothyroxine alone fails to give you good health and no alternative medication is provided.
I would try everything else you can before having either surgery or RAI - I have followed the Amy Myers Auto immune protocol in the past and got myself back into normal range but it’s hard maintaining it long term so I’ve just started on it again. I take bugleweed, lemon balm and motherwort to manage my symptoms and a whole host of supplements but it’s worth it despite the fact it is hard and I’m doing it unsupported from the medical community!
Try to avoid TT at all cost if you can. Everything is better than living without an important organ, which regulates everything in your body.
I believe radio active iodine takes out a LOT more than just your thyroid, my new endocrinologist said he does not recommend it because he carnt get patients feeling well after. I had RAI in 2012 would NOT recommend it. If your thyroid is not stopping you from swallowing properly I would stay on thyroid suppressive medication , have blood tests immediately if you get sore throat , consult a naturapath who specializes in thyroid (as long as your not at risk of a THYROID STORM) . if you do have thyroid removed make shore you get avery EXPERENCED surgeon .it needs to be done by some one with lots of experience.
Thank you so much! I am going to go down the homeopath route before I make any drastic decisions just because the doctors are pushing me to do so! I just feel like there is a lot they aren't telling us. The thyroid is responsible for so many things in the body I don't understand how it is possible to feel well at all without. I'm currently back on carbimozole to get me up to scratch for definitive treatment . Apparently he highly recommends not staying on it as it can damage bone marrow.
Giorgia,
Hi will be able to tell about bone marrow by making sure he does the proper blood work for it. If your readings are OK, you should not suffer bone marrow damage or loss. If they are not OK , that’s a different situation . Wishing you all the best.
Good idea, there is whole section on alternative and holistic options on the Elaine Moore Graves Disease website as mentioned to you in my reply yesterday.
I think this last sentence is another statement said to put you "off balance "and as Greekchick points out, it can be monitored and checked if necessary.
It would seem we are given a time scale of around 15 months during which time endo's have the job to manage our symptoms, in an attempt to bring us back into " range " and considered " well " and to fit into this time frame many patients are advised to consider thyroid removal or ablation, rendering them hypothyroidism and a discharge back out into primary care.
Thyroid management takes time, and a considerable degree of skill and knowledge by an experienced endocrinologist. There is no focus or knowledge within the NHS on how to control the autoimmune component of this disease which is ultimately, what we need to do.
I believe the NHS to be target driven with outpatient waiting list times and not patient centred or focused. It's a process and you are a time slot, a 3.15 on the 12th. The endo isn't and can't get involved with individual patients, that's not his job and not what he is paid to do.
I read of people on anti thyroid medication for years, and also of a few people who have found long term remission.
Hi Penny Annie.
Thank you for your response.
I thought the same when he was telling me about the Bone Marrow. I was on it for almost two years before being taken off.
I'm reading up a lot about the way in which the NHS deal with it. It shocks me that they want to kill / remove a symptom rather than deal with the main health problem. I am reading lots on how to tackle and reverse autoimmune disease. I think it will start with diet. I am also on long term antibiotics (12 month course) for a chronic uti. Something I found out I had on my own through research and paid to see a private urologist because of months of failings by the NHS. This is where my trust in them failed.
The heavy metals involved in my high dose Antibiotics cannot be good for auto immune disease.
Have you or any others tried alternative remedies with success? Bugle weed, motherwort, lemon balm etc? I want to try but have been advised not to take it whilst on carbimozole as it can have adverse effects.
I'm sorry to hear about your Thyroid Eye Disease. I had 6 months of one obviously pushed forward eye. Nothing could be seen on scans but I think it was the beginning of TED and therefore another reason why I don't want to undergo the ablation.
Giorgia
Hey there Giorgia,
No I have no offer of anything " alternative ". I have learnt about my situation back to front, having had RI in 2005 and living with those long term consequences really knocked me for six about 5 years ago.
I'm in a better place now, thanks to this amazing website, self treating with NDT and staying away from the doctor.
Check out the Elaine Moore website, there are chapters on self help treatments, diet, life style management, stress triggers, and relaxation techniques. There is also a section on the use of herbs and amongst many interesting articles one on Low Dose Naltrexone, that does seem to benefit some people.
P.S. Your Thyroid and How to Keep it Healthy Dr Barry Durrant Peatfield is a very easy, insightful, sometimes funny read regarding all things thyroid. This doctor has hypothyroidism himself, and takes Natural Desiccated Thyroid. His " controversial treatment " was well received by his many patients but his life was made very difficult by the medical establishment so he volunteered to be removed from the medical register. There are chapters in his book that I think you would find very interesting.
Giorgia,
Try vaginal probiotic capsules :Canesflor at Amazon.uk - for your UTI since you are on antibiotics. Please note these are NOT taken by mouth. They may help you. All the best.
Hi , if you try herbs start out with minute amounts to test them out and if no I'll effects then build up slowly to amount suggested . I would buy blood pressure monitor and keep an eye on your BP as my only real WORRY is thyroid storm. One thing I took before I had RAI that seemed to help was SARSPARILLA , look it up ,and don't forget sore throat always needs blood test to count out leucopenia when your on carbimazole.
SARSPARILLA the drink?
Can u share why you had to get an RAI?
Thank you
Sarsparilla is in the drink but I took the capsules don't know how much they put in the drink. I was on carbimazole to control my hyperthyroid GRAVES but my ENDO did not order blood tests and I ended up with leucopenia consequence of that I got pneumonia consequence of that was artil fibrillation I was in a mess , could not take any more carbimazole because my white blood cells were not forming properly so had no control over TSH that was effecting my heart , could not have my thyroid surgically removed because of the pneumonia so ENDO said RIA was the only way.if she had ordered blood tests when I said I was feeling unwell this could all have been avoided. You need blood tests when on carbimazole if you have sore throat or feel unwell.
Hi Giofarmani
I've just had my TT May 8th this year my scar is thin and fine I just pop a small amount of foundation on my brush and it compleatly covers it can't tell you have any scar at all..unfortunately I had to have my TT as my thiyroid was toxic so no choice but my scare is fine..❤️❤️
Hi ,you may want to look up ( NATURAL TREATMENT SOLUTIONS for HYPERTHROIDISM and GRAVES DISEASE by ERIC.M.OSANSKY how to avoid Radio active Iodine.) I only came across this yesterday, dont know how good it is.
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