hi all
I have finally been given a diagnosis and it’s Toxic nodular hyperthyroidism
I’ve already been taking a carbimozole & Diltizim 4 weeks ago
My surgeon has requested a radioactive iodine treat to kill the nodule
Just wanted to get everyone’s take in that
Hi MrsStacCole08. RAI will always be suggested automatically, as it's the quickest , cheapest and simplest option for controlling hyperthyroidism from NHS point of view. However , you should take your time before accepting and make sure you have understood all the implications , and all the options. The NHS won't tell you all the options.
RAI might be the right choice for you , but it's important you realise it's your choice, and there is no rush. As long as your hyperthyroidism can be controlled successfully by either Carbimazole (or the alternative anti-thyroid drug PTU), then you can continue to use that to control it for as long as you like and they can't stop prescribing it if you don't accept RAI .
There is a member on here who is in same position as you ( toxic nodule), who has chosen to stay on low dose carbimazole long term ,rather than accept RAI. I will link her profile page ...
healthunlocked.com/user/Pur...
if you click on it , and click on 'replies' you will be able to read all her responses to others and i'm sure you'll find lots of interesting information in there while you wait for other members who have direct experience of your situation to come along .
The main problem with accepting RAI (or surgery) is that you will almost certainly become hypothyroid as a result , it may take time to get there , but most people who have RAI do eventually need to be on Levo for life to replace their thyroid hormones . This is fine if Levo works well for you , and some people who can't tolerate carbimazole/ PTU will have no choice in the matter .... but there are about 15% of hypothyroid patients who do not feel well on Levo ... this is a risk the NHS are unlikely to make you aware of . many of those patients are the ones on here , struggling to get well .
And so as a balance to the risks of Carbimazole/hyperthyroidism you need to include the risk of you being one of those who do not feel at all well on Levo.
Some people who found they are able to function well with carbimazole controlling their high thyroid levels have chosen to stay on it rather than risk ending up as one of that 15%.
There are many on here who had the RAI suggested very soon after diagnosis ,who now regret that they were not made aware of any other options before going through with it
For example, there is even an option of something called Radio Frequency Ablation (RFA) suitable for some specific types of nodule, which is only available in about 1 or two NHS hospitals i think , but which is targeted to destroy just the nodule , not the whole thyroid.
i'll shut up now ,because hyper / nodules/ carbimazole is not something i have direct experience of , i'm just hypo ... just wanted to give you some info to be going on with, and say welcome to the forum 
Thank you so much as I had no idea that alternatives are available other than RAI, and it’s something I am concerned about as the last thing I want is to hypo also I requested surgery I just wanted the nodule removed, as I’m petite only 5ft 1 and a size 8 it’s very noticeable on my neck. So I wanted the blasted thing removed and let me live with my right lobe but my surgeon said he was very reluctant to operate on me due to the risks involved
However it’s seems from what I’ve been reading the RAI is also full of risks
Not as bad but still with risks
I have an appointment with my endocrinologist on the 9th Sept so I want to go armed with all tue information and alternatives
This has been so helpful thank you
X
Stacey
i strongly suspect that one of those 'risks' of surgery is that it costs more... and needs an operating theatre.... and a surgeon.... and an anaesthetist ....RAI is very.... erm ...'efficient' so it's offered as the 'preferred treatment' from a cost/ efficiency/outcome perspective .. but that does not mean it's 'preferred' by patients or is necessarily the best choice for an individuals long term quality of life .
Personally if i absolutely had to pick one or the other , i'd pick surgery , and hope i could live well enough with the half they left behind. There are risks of any surgery of course .. but at least you know what they are, and it's 'clean' if you know what i mean.. RAI seems to have rather too many long term 'unknowns' for my liking. .... certainly many patients on here are are not happy with the outcome and feel they were pressured into it far too quickly as a mater of routine policy, without being given the full picture or being told they even had much choice in the matter . I know they are not a representative sample, as it's a 'help' forum so it will of course be full of problems and not full of good outcome stories .. but even so .. it's enough to give cause for concern that RAI could have more problematic long term consequences than the carefree way it is usually presented.
Don't take this the wrong way .., but the least of your considerations in this decision should be what the lump on your neck looks like .. the potential consequences of thyroid hormone decisions you make now are things like 'will you be able to live the rest of your life and manage at work the way you want to, or will you feel too ill to cope with any social life at all and have to retire' .
i'd happily swap my hypo life on Levo , for a highly visible and unsightly limp on my neck , if it meant i could have back my energy and stamina as it used to be.
I didn't have any choice , i just went hypo naturally and it turned out i'm one of those 15% who didn't get better properly with 'the one little white pill every day ' ... but to some degree , you have a choice here .... make sure you get to exercise your choice.
my impression from what reading i've done is that RAI will almost certainly leave you hypo eventually . I suspect they use figures from a few months after RAI procedures to say 'x%' didn't become hypo ... ask them how many are hypo after about 6/10 yrs ? ... and see if the answer is the same .... i bet it's not .
Your appt is quite close ... personally i'd want much more time than that before committing to any decision about RAI or surgery ....to see how i felt when settled with good thyroid levels on carbimazole, whether i could stay stable and function well on a low dose , what sort of T4 and T3 levels i was dealing with, what dose of carbimazole would keep them in check , how well controlled my symptoms were etc etc and to take my time to do my own thorough research on the other options .
if you feel under pressure at your appt. to commit to RAI ( you probably will, they are under pressure to get clear patients as quickly as possible, and they are not always entirely , erm ...'ethical'... about how they convince people to have it done) .. stall for more time to decide .. they can't take the carbimazole prescription off you , they do have to continue to treat you for hyper and monitor your thyroid hormone levels and adjust carbimazole dose , even if you don't agree to do as they suggest. re . definitive treatment options .
So if you're not feeling ready to commit to anything , trust your gut and say no thanks ...not yet .
That’s so so helpful thank you
To be honest the unsightly lump is just a very small thing but it’s a thing I’m very aware of at the moment
I just want more than anything my energy back
My zest for living life to fullest, my nick name at work was the pocket rocket
I want to be able to get back to the gym to dance again
Also the other symptoms are horrible
The racing heart and the fear of a heart attack
I want my life back
I was recently promoted at work
Now that hangs by thread due to being off work for the past 4 months
I have a very active physical job and it’s a job I love
I feel like I can’t do my job like I used to before I become unwell
I do feel like I’m being refused surgery for the wrong reasons and I’m being fobbed off
My gut has been telling me the whole time to have it removed
And that feeling has not gone
The RAI is not sitting well with me
That’s why I came here to get more information & other peoples perspectives and knowledge
And it’s been very very helpful
Hmmm I will stalling for more time as 4 weeks ok the meds is not enough time to make a judgement
It’s still very early
Thanks again you’ve been very helpful
Stacey x
Hello Mrs StacCole an welcome to the forum ;
Can I just add a couple of recent research papers that you might like to think about and use to your advantage if you find you need to :
Having had RAI for Graves Disease back in 2005 and totally compliant, as I knew no different then and I only started my own research when very unwell around 10 years later after being refused any other treatment option through my hospital and with my doctor referring to me as a conundrum.
The dose of RAI is not as exacting as it seems and once this toxic substance is ingested, it is a slow burn and doesn't stop until your thyroid is totally disabled with you being primary hypothyroid.
Below are just a few side effects of this option - please do your own research:
Primary hypothyroidism caused by RAI is said to be more difficult to treat.
Symptoms similar to those of Sjogren's Syndrome and fibromyalgia are known to occur.
It is known that RAI is taken up by other glands and organs within the body.
Details on my profile should you wish to dip in :
ncbi.nlm.nih.gov/pubmed/306...
This second link is suggesting that the longer the patient stays on the AT drug the better the outcome for the patient - and I presume it is not widely offered as a first option due to costs and it may need an enlightened endocrinologist and hospital trust to be " on board " with the additional funding for this option to be acknowledged and actioned.
Whilst I appreciate you have not been diagnosed Graves, the principle is the same, as the adage is that the AT drug is too dangerous to stay on long term - has now, through research, been turned on it's head.
pubmed.ncbi.nlm.nih.gov/338...
It maybe worth asking about the Radio Frequency Ablation ( RFA ) I can't think which hospitals now offer this service, or in fact here you are, but it is another option that maybe worth considering.
Thank you so much and I will now sit and read that report
I think stalling for time and really look at all my options is the best way forward
And I still feel surgery is what I want
But I have time and continue with the meds for the time being
I’ve had zero control up to now so it’s about time I take back my control
The nhs hospital I’ve been under is not great and the level of comms form them have been shocking
And have caused me a lot of stress and anxiety
I had to Google my first FNA results as the ENT consultants where not talking to me
Terrible few months all round
I’ve gained more knowledge and understanding from this forum then the whole 4 months I’ve been treated by the nhs
Thanks again and best thing I’ve done was joining here
Stacey
Couldn’t agree more. Take back control, take an active part in your treatment - don’t just sit back and ‘have it done to you’ have an input into what suits you best. RAI seems to be the first choice the offer to everyone. I’ve been in remission fr8m Graves’ disease since 2012. I told my doctors I didn’t care how tiny a pill the RAI was I wasn’t having it. I asked my GP about staying on carbimazole indefinitely should the need arise and she said that was possible. She also said they couldn’t refuse to treat me if I refused to have RAI. Then I set about collecting evidence to back up my case. The articles about the success of patients taking long term being more successful are really interesting and there are people around who have stayed on it long term.
The only reason I was prepared to have my thyroid removed was if it had turned out to be malignant but otherwise - no thanks to RAI.
You do need to be sure the lump is definitely not malignant - my sister in law developed a ‘cyst’ on her thyroid after she had her second baby. Her doctors left her for a year until she stopped breast feeding and low and behold she had thyroid cancer. She had her thyroid successfully removed, followed by RAI. That ‘baby’ is now fifty and my sister in law has led a long and unbelievably active life taking thyroxine ever since - sailing, climbing, mountain biking, hill walking - you name it, she’s done it.
I’d say, do your research and just don’t let anyone rush you into anything. If you feel your NHS hospital isn’t great ask to go to one with a better reputation. Good luck.
For me the nhs get it wrong more than they get it right
My first FNA came back as a U3 indeterminate Thy3a
Then the 2nd came back as U2
And the nuclear medicine scan came back as a hot nodule and the root cause of all my issues
However my serum C reactive levels in my blood have been consistent 20s plus
And my TSH was 0.01
T3 was 6.7
T4 Was 11.8
So I’ll be interested in seeing what they now 4 weeks in to taking the carbimozole
I do feel like I should go for a 2nd opinion
Tell me! I changed surgeries last year when the GP refused to do anything about agonising low back pain - long story but the private physio I ended up go8ng to sent me for private MRI scans and amongst other things I had a fractured sacrum! I feel pretty let down with a lot of the treatment or lack of that I’ve had over the years, I’ve got osteoporosis and I was never warned that it could be caused by my thyroid being hyperactive or my inflammatory arthritis along with the steroids I was prescribed for that or the PPIs that used to be handed out like sweeties.
You’ve got to be pro active. Took me a while to realise that no one will look out for you like you do yourself.
Oh bless ya
I’ve been very very lucky, my gp have been fantastic and have really supported me
I learnt very quickly that you gave to be your own biggest advocate
As no one will fight for you like you can
And I have fought hard to be given priority and be heard and seen in a timely manner
And now I will be head strong and fight for the best form of treatment for me and not be bullied in to cheapest avd easiest options for them and not me
It’s bad really that we have to be like that but needs must
I must say I do break a lot of bones so it’s clearly connected to my thyroid
All the best
Stace
Welcome to forum
How much carbimazole do you take?
Have you ever had any thyroid antibodies tested? TPO, TG, TRab or TSI?
Your results of
TSH was 0.01
T3 was 6.7
T4 Was 11.8
Please add range as ranges vary between lab but by most ranges the FT3 is high but not very much abound range and FT4 looks low.
The Thyroid stimulating hormone is a pituitary hormones which signal the to make thyroid hormones. When it’s low or suppressed (0.01) Doctors automatically say there’s too much hormone.
They don’t like it even if the FT4 & FT3 are in range.
Carbimazole works by reducing the amount of thyroid hormones is made. Keep the FT4 & FT3 low enough / long enough the TSH -should- rise to signal thyroid to make up levels, but the TSH isn’t reliable, takes time to respond & might not respond at all. (Mine didn’t). Plus once the thyroid is able to produce again the nodule will start to over produce - lowering TSH.
The aim should be for FT4 & FT3 to be range but TSH shouldn’t be the the focus.
I wasn’t treated until my FT4 & FT3 were over range but this was because doctors didn’t follow up. My TSH was suppressed years before.
How was toxic nodule confirmed?
Obtains copies of any scan reports you previously had. There are often details about thyroid health with aren’t fully explained to you.
I have information & some links on RFA. UCLH (London) and Berkshire list the procedure if you would like to know more, or you may have found a previous reply of mine?
I had a consultation with ultrasound at University College Hospital London to find out my suitability for RFA (radiofrequency ablation) for toxic nodule. Unfortunately they found I was not a suitable candidate .. 'too many nodules etc.'
In my opinion if one is a suitable candidate, it seems to be the safest treatment in that it only 'knocks out' the troublesome nodule and leave the rest of the thyroid intact, so eliminating the need for lifetime levothyroxine.
I wish you the best going forward with whatever you decide.
Thank you for replying, yes I was looking at the alternatives as I’m really not enthused by RAI and the permanent side affects
So I have been looking at RFA as an option and it does seem to a worth while try
Especially as I only have the 1 nodule
And it’s just under 4cm
I have an appointment with my surgeon on Tuesday and that’s one of my main topics to discuss
All the best 😀
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