Thyroidectomy or radioactive iodine

[beagleem]

Hi 👋

I have thyrotoxicosis and have been hyper for over a year now. My T3 and T4 are in the normal range (on 200mg PTU daily)but my TSH has remained at <0.05 for over a year.. I’ve had the antibodies test and It’s been confirmed that I do not have Graves..my specialist said that I have a particularly angry thyroid 😂

So..I have been given the choice to have either radioactive iodine treatment or surgery..I have a few months to decide which and I’ve been given a number of academic studies to read up on.. but I have no idea what to go for.. they both seem like pretty naff options but I have to choose one..

So I’m looking for some advice really..Have you had the surgery or the RI treatment? If so what’s it like? Did it hurt and how long did it take to recover?

Thanks in advance!

[madge1979]

Quite simply put .. your body cannot survive at all without Thyroxine which your Thyriud Gland makes

... And if you destroy or kill your Very Vital Thyroid Gland you will have no Thyroxine

Therefore you must replace the Thyroid Hormine with a synthetic

Alternative

Personally the thought of that terrifies me ...

And

That is why 4 years ago, when I was diagnosed with Graves Disease ... HYPERthyriudusm with Antibodies , And I was told to either have RAI 🦋 or surgery to remove my Thyroid 🙀

I was angry that my GP wanted me to do this !!

So I decided to treat myvThyroid

Myself

After having to take Carbimazole

For a few months

I then set about Fixing my Thyroid by replacing all that it had lost whilst I was going at 100 miles an hour with HYPER

My idea was to feed my Immune System with minerals vitamins and nutrients

I did that and became Euthyroid

.... ie normal !!

And Thank God 🙏 I’ve been normal since .

It most certainly can be done .... and importantly ... naturally

It involves taking

Magnesium

Vitamin B12

Vitamin D3

And a few more ... and t it works

Many people have gone this particular route

And with your levels you could

Too...

Why any doctor would want you to

To destroy your Thyroid Gland beats me

He obviously knows not a jot about thyroids ...

Best of luck and I hope you become empowered to save your Thyroid and your health ..

Luv Mx🌹

[Simplyred57 in reply to madge1979]

Look at slow dragons latest posts there is an article about RAI - I had it 20 years ago worst mistake of my life.

[madge1979 in reply to Simplyred57]

Very courageous of you to say so

Almost all women in my family

Have thyroid dusease if one sort or another

No one but me has become Euthyroid

I’ll read that article and thank you for your very valuable opinion ..

Luv mx🌹

[Verve001]

Hi beagleem,

I had radioactive iodine treatment about five years ago as I had graves I was advised by the doctor that if I didn't it would put pressure on my heart as my levels were that high they suspected I may have had it all my days . Of course they advised that once I had I would treated for an underactive thyroid as it's easier to treat they told me so I opted for this tbh I feel worse now than when I was over active various issues fatigue pins and needles brain fog etc and only now since finding this site and the lovely people on here I am gaining some knowledge which they kindly share. It's not to say it may not be for everyone but my experience so far hasn't been positive hope all goes well whatever you decide 😊x

[Simplyred57]

Sorry sent my reply to madge1979 by mistake

[madge1979 in reply to Simplyred57]

Okay

🌹

[pennyannie]

I was diagnosed with Graves Disease in 2003 and had RAI in 2005.

I was told I was to have RAI after 15 months on Carbimazole - there was no treatment choice offered, and sadly I knew no different. I now regret having had RAI.

I now read that the RAI is the treatment of choice offered by the NHS - it is in the hospitals best interest ( financially ) but not necessarily in the patient's.

RAI is generally given as a drink in outpatients, it goes through your whole body.

The ramifications of drinking this toxic substance are not well understood, monitored or publicised.

With surgery the problem gland is removed - it's a cleaner, contained procedure.

Ultimately, you will become hypothyroid whichever treatment you choose.

Fortunately, you do not have Graves, and you do have a choice.

Read all you can - knowledge is vital - as being without a fully functioning thyroid you will need to become your own doctor in managing the resultant hypothyroidism.

Take good care -

[sandywandy1]

I deeply regret my thyroidectomy. If I could have it put back I could.

If t4 and t3 in normal range you are not overactive, feedback mechanism takes time to recover and sometimes never does. There are loads of studies on this.

Do you feel well?

I felt 100 times better overactive than I do now with no thyroid on medication.

Mum had rai but similar problems. She told me not to go ahead, but I thought the doctor knew best- wrong. Same problem for friend scared by warnings of health problems.

Now constantly have to ‘fight’ for medication I need to function from supplier shortages to hospital reviews.

I would ask to wait for longer, review in a year.

Easier for endo to recommend take it out/rai as they can refer you back to gp for medication and don’t have to see you any more.

Good luck.

[madge1979]

I hope your kind advice to beagles will help not only her but all who must face that frightening choice .

It’s wonderful when people come back on here with positive things to say

But it’s extremely brave to come in and say that mistakes were made and knowledge was not given freely by doctors .. well done

Luv Mx🌹

[madge1979]

Beegleem

[bantam12]

I've had both surgery and RAI, no problem with either, RAI was the best thing for me.

[beagleem]

Thanks everyone.. just to be clear the medication is the only reason at present that my T4 and T3 are in the normal range.. I was diagnosed 14 months ago after a thyroid storm.. my endocrinologist believes that it had been overactive for possibly a year by this point without treatment due to the extreme symptoms I was having and my doctors had fobbed me off with suggestions of anxiety stress and gave me beta blockers..

I started on Carbimazole and that was awful.. I felt so I’ll on it, in general. He swapped me to PTU after a couple of months and I was on 3 weekly blood tests until January this year. now I’m on 5-6weekly bloods and meet the specialist every 4 months. He has attempted to lower my dosage of PTU from 300 to 200 to 100 on 2 occasions to see if my TSH will kickstart but it hasn’t moved, but my T4 and T3 have shot up - (to toxic levels - way beyond the normal range). This has resulted in having to maintain the dosage at 200 a day..so although I agree that when the levels are in the range I’m not hyper, without the meds I am. I now know when my levels aren’t right as I have palpitations, shake profusely, get extreme tiredness and insomnia, irritability and anxiety.

I would like to hope that my thyroid will start working in the next few months but I’m not expecting anything.. I don’t feel well 80% of the time..

The specialist is not keen on keeping me on such a large dose of PTU in the long term so has asked me to pick my treatment.

I must say my experience with the specialist has been very positive, I am able to call him about any concerns I have or issues and if anything my doctors have been the biggest pain as they issue the prescriptions and seem to take 6 weeks at a time to update their systems. This won’t change either way.. I’ll still be under the same specialist and doctors after treatment.

I’m interested in why some of you have said having RI was the worst decision you ever made? Is this because the treatment was bad or because you no longer have a thyroid?

Thanks again for taking the time to message me x

[Simplyred57 in reply to beagleem]

It was the worse decision because afterwards it took years to get me to an acceptable level of health, I went severely under active, despite being looked after on private healthcare, my dose was at an “acceptable level” so I stayed under active for years, on anti depressants because I was so low, and gained so much weight, but nobody would listen to me. If I’d had an option back then I would have taken it, was told surgery was messy and I would be scarred, so just take this pill, your thyroid will stop working and we will treat you and you will be your old self in a couple of weeks- years of been miserable followed, I would choose overactive over under active in a , so please follow your instincts I wish I’d had the knowledge I have now back then.

[beagleem in reply to Simplyred57]

Thank you for this Simplyred57. I have been told by my specialist that they are not happy to keep me on such a high dose of PTU in the long term and because Carbimazole didn’t agree with me there aren’t very many other options to treat an overactive thyroid (that I’m aware of). If anyone has any papers that I could read to counteract this claim I would be happy to read them and argue the toss with my specialist or seek a second opinion.

I’m fully aware that if I have RI treatment or surgery I will be under active for life - not something that anyone particularly wants! I really do feel for you having really bad experience of under active.

[Simplyred57]

Hi beagleem, I wish you well, and hope you find an alternative to both the options on offer, I’m just thinking back to the day of my RAI , when the nurse came in the room with the pill in a large sealed capsule and wearing protective clothing ( I’m serious very space age ) she placed the radioactive pill in my mouth with tongs( she was wearing protective gloves) I then couldn’t sleep in the same room as my husband, use the same cutlery or sit next to him, or be near children as I was radioactive ( for about a week I think ) years ago you would be put in an isolation ward, maybe alarm bells should have rang then, but felt so ill I just did it, I’ve just rang my husband to ask him was my recollection correct and he said yes remember we laughed it was so surreal. Sorry I don’t mean to scare you, please do your research, before you choose.

[dusty2]

I had RAI without any problems afterwards. The only downside was staying away from everyone. I'm so glad I had it, like you I was given the choice of surgery or RAI.

[Hidden]

I had surgery....Fast recovery and hardly a scar. I would make sure you have a good surgeon....and get ready for the ride of your life afterwards.

[pennyannie]

Hello again beagleem

Just to say, most people who are well will not be on this website, as they will be getting on with their lives and not looking for answers as to why their medical treatment has left them worse off - so you must keep a balanced view and read and educate yourself of what is in your best interest.

If you check out my profile you can read in more depth my story.

I have Graves Disease and I read RAI stimulates immune cells within the thyroid gland to produce more thyroid antibodies - symptoms similar to Sjogrens Syndrome can occur - this has happened to me, some 8 - 9 years after drinking the RAI. I can find no answers from the medical profession and am searching for answers myself. I read that the side effects of RAI can take many years to manifest themselves in some people.

So I have joined up my own dots, rightly or wrongly.

You do not have Graves Disease and do not have to have RAI.

Professor Toft, an eminent endocrinologist wrote a paper last year, entitled :-

Thyroid Hormones - A Counterblast to Guidelines - within which, he states that he is no longer referring people for RAI - that in itself should be enough of a warning -

it will be on this site somewhere - sorry, I don't know how to link it in -

Take good care, read up all you can -

[beagleem in reply to pennyannie]

Thank you pennieannie, that’s very interesting! I will definitely have a look into this. Thanks again x