RAI treatment......

A couple of days ago I asked if anyone had experienced any positive benefits from having RAI treatment for overactive thyroid and there were no replies. Can this be true.....😳

[SeasideSusie Remembering]

FlapJack

The forum has been a bit quieter of late, maybe just the right people haven't been around.

There are some "Related Posts" which may be useful, if on a PC look to the right of your opening post, if on another device maybe scroll down to see them listed. Or use the Search facility which is found by clicking on "Posts" then you will see a box "Search posts on ThyroidUK".

[Hidden in reply to SeasideSusie]

Thanks, and no doubt many having had successful treatment, no longer use the forum

[Wetsuiter in reply to Hidden]

that is a possibility when you think about it. we are a self selecting group

[Fruitandnutcase]

There are people around who have had RAI and are doing well and still come to the forum. If you don’t hear from someone soon try making a completely new post next week and see what happens.

If you have thyroid eye disease then from what I’ve heard you would be better off having a thyroidectomy if you are going down that route (I’m assuming that you haven’t had RAI yet)

[Hidden in reply to Fruitandnutcase]

Thanks, I’m new to this but TSH is 0.02 and my T3 just out of range but returned into range after taking 5mg Carbimazole for 3 months. Not aware of any eye issues but have AF so need to try and do the right thing!

[Fruitandnutcase in reply to Hidden]

Good that they’ve checked your T3. It was never checked throughout my entire treatment. I paid for that and ferritin,folates,B12 and vit D myself.

You would know if you had eye problems - blurred vision, really dry eyes, double vision, watery eyes. Not pleasant.

The pounding heart is pretty awful. I used to feel my pulse by putting my hand on my stomach - it used to wake me up at night - it was quite scary.

Read as much as you can about your condition.

[Hidden in reply to Fruitandnutcase]

👍

[Lora7again in reply to Hidden]

My TSH was 0.002 when I was diagnosed with Graves' Disease. I have decided against destroying my thyroid and I am now in remission for the second time so I know I made the right decision. I am taking no medication at the moment just vitamin D spray and selenium tablets for my high antibodies which are 4000

[Fruitandnutcase in reply to Lora7again]

4000 is high. Try going on a totally gluten free diet and S EE if that helps reduce your antibodies. Coeliac U.K. is a real help with dong that. If you join you get a really good handbook that lists what seems like every food and ingredient known to man.

I’ve been totally GF for more than five years now - since being diagnosed with inflammatory arthritis as well as Graves’ disease which was in remission at that point.

My antibodies are now almost non existent, I put it down to being GF but it could be that it was just their time to reduce themselves. It’s worth a try though.

[Valarian in reply to Hidden]

Have you had any antibody tests ? (Eg TRAb or TSI ?) Have they said what they think is causing you to be hyper ?

[bantam12]

I had RAI around 15 years ago and it worked a treat, I went hypo very quickly and have done very well on Levo since 😁

[Lora7again in reply to bantam12]

You are very lucky because a lot of people on this site don't have the same experience as you.

[bantam12 in reply to Lora7again]

But there are others on the site with positive experiences and many thousands who aren't on the site 😊

We should not condemn a treatment because some don't do well, it happens in all treatments and medications, what suits one doesn't necessarily suit another.

[Lora7again in reply to bantam12]

Good for you ... you are one of the lucky ones ....

[Hidden]

Thanks bantam....encouraging stuff!!!👍

[greygoose]

If I were you, I would insist on knowing if I actually have Grave's before agreeing to anything. And that means having the TRAV or TSI tested. Last of your posts I read, you hadn't been tested for antibodies. Don't give up your thyroid without a fight.

[Hidden in reply to greygoose]

Thanks, I did email my Endo Friday with some questions resulting from responses from earlier post, and one was about Graves. Not heard yet, but hopefully get a response during the week. I’m also hoping to have a consultation at the Royal Marsden before any treatment. This is not something I want to rush into!

[greygoose in reply to Hidden]

OK, well, let us know how it goes. It really does worry me this trend to rush patients into TT or RAI on the slightest flimsy excuse, without doing the proper testing.

[Hidden in reply to greygoose]

hi greygoose, pleased to say the endo has confirmed that Graves is not an issue and that the process, as mentioned below in reply to Angel of the North, will be followed. So grateful to the forum for making me aware of the issues you need to look out for and get double checked, it really is a bit of a minefield and not made any easier due to having AF.....thanks again

[greygoose in reply to Hidden]

Oh dear. I'm going to sound like an awful nag! But why are you pleased to say that? Having Grave's would justify removing - or killing off your thyroid. I cannot see any other reason for it except cancer or a goitre/nodule so large it's obstructing your breathing/swallowing. So, if it were me, I would still be pressing for an explanation and antibody testing. Have they even tested the Hashi's antibodies? I'm afraid none of this makes sense to me.

[Hidden in reply to greygoose]

Your not a nag, you are attempting to help! You seem to be suggesting that RAI treatment cannot be controlled to reduce hormones to an acceptable level as suggested in this video from the Royal Free Hospital.

royalfree.nhs.uk/services/s...

Perhaps I need to seek a second opinion and thank you for your comments.....

[greygoose in reply to Hidden]

I don't know that much about it, only what I've read on here. But, I would say that people on here have found themselves hypo, rather than with controlled levels.

But, I think that before I sought a second opinion, I would be demanding more answers from the first opinion. Because, judging what you've told us on here, he hasn't yet given you one good reason to go ahead with this. And, as he doesn't appear to have done the right testing, I doubt he has any idea what your real problem is. These people need to be held to account. You shouldn't just accept whatever they say just because they have letters after their name.

[greygoose in reply to greygoose]

Also, I'm not sure you've been asking the right question on here. You've asked if people had any problems with RAI. And they've truthfully answered that no, it all went very well. But, they are now hypo, rather than having had their thyroid destroyed just enough to stop them being hyper.

Also so, has your endo completely ruled out Hashi's? Because Hashi's - as has been said before - starts with a 'hyper' period, which can last an undefined period of time. But, the general trend with Hashi's is towards hypo. So, if on top of that, you have part of your thyroid destroyed, you will arrived at the hypo phase a lot quicker, with absolutely no question of being able to control your levels.

[Hidden in reply to greygoose]

Your points are taken and I am not necessarily disagreeing with you. All I am trying to do is to establish what is the best course of action for me. On the AF forum we always make it clear to those who post, that we are not medically trained and therefore cannot comment on medication or treatment recommended by their medics. The reasons are obvious, all we know comes from our own personal experiences, attending AF workshops, support groups etc. Even when we introduce eminent cardiologist’s who speak at support groups, we make it clear that they are expressing their own personal opinions and whilst they will respond to questions, participants must always seek medical help from their doctors because they are the only ones who have access to their medical records.

The situation appears slightly different here in that some posts appear quite critical of those specialising in Thyroid conditions.

In my case, I had blood tests which suggested I had an overactive thyroid. Initially, when I discussed the results with my GP, he was almost inclined to keep the status quo, until I reminded him that I had AF. He then referred me to the Endocrinologist at my local General Hospital who I saw 3 months ago. He said I had a goitre and prescribed 5mg Carbimazole because I was experiencing tachycardia/palpitations some 7 months after my second ablation for AF. It is known that hyperthyroidism is not good for the heart generally and in particular, it is potentially very unhelpful if you have AF. Even though I am quite sure that he is prescribing the treatment he believes is best for me, and this is largely confirmed in the video from the Royal Free. However, like most people, I need to be as confident as I can be that I am doing the right thing. Whilst I very much appreciate the advice offered here, I will seek a second opinion, but the information provided by you and others has been helpful and will definitely form part of future discussions.......

[greygoose in reply to Hidden]

Well, we don't hide the fact that we're not medically trained, on here, either. Because we're not. But, most of us have done an awful lot of reading.

The situation appears slightly different here in that some posts appear quite critical of those specialising in Thyroid conditions.

And, that highlights the difference between heart problem and thyroid problems: there are only a tiny handful of doctors who can claim to specialise in thyroid. So, it's rather doubtful that you saw one of them. Most endos are diabetes specialists who just have a smattering of knowledge of the thyroid. And, some very strange ideas. They could in no way be considered 'thyroid specialists'. And a lot of them have done an awful lot of damage to a lot of people. Which is why we are so suspicious and wary.

In my case, I had blood tests which suggested I had an overactive thyroid.

Have you posted those labs? I can't remember seeing them. And it's very important to take those into consideration because doctors - especially GPs - rarely do all the right tests. If we see what you had tested originally, we could suggest if other labs are necessary.

He said I had a goitre and prescribed 5mg Carbimazole because I was experiencing tachycardia/palpitations

Did you really have a goitre? A lump in the middle of your throat at the bottom? Even if you did, a goitre is not proof of over-active thyroid, because you can have a goitre when you're hypo. And Carbimazole is not prescribed just on the basis of having a goitre.

It is known that hyperthyroidism is not good for the heart generally and in particular, it is potentially very unhelpful if you have AF.

Hypothyroidism is equally bad for the heart and can cause palpitions. But not many doctors know that.

Doctors are very badly educated in thyroid, even endos. They have something like one afternoon on the whole of the endocrine system during their time at med school - so you can imagine how little is said about the thyroid. Your endo may believe he is doing the best for you, but unless he has done all the right tests, he can't possibly know what is right for you. And, most of them don't do the right tests, they just take a vague guess.

I'm not trying to tell you what to do, I'm just trying to put you on your guard. You need all of the tests below to have any idea of your thyroid status - although I'm sure that's been said before in answer to your questions:

TSH

FT4

FT3

TPO antibodies and Tg antibodies to see if you have Hashi's

TRAB or TSI antibodies to see if you have Grave's.

Unless all of those have been done, no-one can possibly know what is going on with you, no matter what they might say.

[Hidden in reply to greygoose]

1st Post a few days ago. I assume the additional peroxidase test indicated that I didn’t have Graves

healthunlocked.com/thyroidu.........

You make it sound as if I’m being critical of others, I am not.

He felt around my neck and said I had a goitre.

I will seek more professional advice and then make my decision on what to do and then live with it

Thanks for your help.

[greygoose in reply to Hidden]

my TSH has hovered between 0.01 and 0.05. (0.35 - 5.00). T4 is has always been in normal range but since 2012 it has progressively increased from 17.9 pmol/L to 20.8 in April this year, but it has now dropped to 16.6 (9 - 22 pmol/L) and T3 has dropped from 5.9 this April to 4.7 (2.3 - 5.1). Se thyroid peroxidase Ab conc was recently checked for the first time at 0.05 ku/L (0.0 - 5.6).

So, those labs were done before you started the carbi? If so, you were never hyperthyroid.

Thyroid peroxidase AB are for Hashi's, not Grave's. So, I imagine the Grave's antibodies have never been done. But, in any case, I know enough about Grave's to know that those results are not Grave's. And, they're not hyper, either.

The TPOab are negative in that test, but that doesn't mean you don't have Hashi's. TPO/Tg antibodies fluctuate - and you haven't had the TgAB tested, anyway - so, one negative test doesn't prove anything. Also, you can have Hashi's without ever having raised antibodies.

What usually happens is, doctors see a suppressed TSH and go into panic mode. They 'diagnose' hyper and prescribe carbi, and only then do they send the patient to an endo. The endo may or may not do Grave's antibody tests - very often not. Sometimes they don't know the difference between Hashi's and Grave's, and test the wrong antibodies. So, the 'diagnosis' remains unconfirmed, but the treatment with carbi continues. And, it's very very hard to get them to stop it. We see that all the time, on here. So, as far as I can see, your doctors have no justification for recommending RAI. It's just another knee-jerk reaction.

I do hope your second opinion knows at least a little bit about thyroid.

[cazmania7 in reply to greygoose]

Blimey ace reply grey. Curious now about my Graves diagnosis years ago. Might dig out my old results for you to mull over 😂

[greygoose in reply to cazmania7]

It's always best to be wary.

[Hidden in reply to Hidden]

Can’t offer personal experience on RAI, but happened upon this about subclinical hyperthyroidism in case of any use. It mentions nodular goitres

endocrinologyadvisor.com/ho...

[ling in reply to Hidden]

The peroxidase test is not conclusive for Graves.

A high peroxidase reading could mean you either have Graves or Hashimoto's.

A TRAb test confirms Graves.

My first TPO test was negative.

My first TRAb test was positive and confirmed I have Graves.

[Valarian in reply to Hidden]

You shouldn’t rush into it, but there are people here who have been perfectly happy with their decision to go for RAI (and bear in mind that many of the people who have been on the forum a long time are here because their thyroid problems haven’t been resolved; those who have been treated successfully are less likely to spend a lot of time on this site)

You really need to know what is causing your excess thyroid hormones before making a decision. Ask your endo what they think the cause is, and on what they are basing their diagnosis.

Here are some links you may find useful:

thyroiduk.org/tuk/about_the...

btf-thyroid.org/hyperthyroi...

btf-thyroid.org/treatment-o...

elaine-moore.com

[Hidden in reply to Valarian]

Thank you Valarian for the advice and the links. I've got a fair old list thanks to the folks here and will be seeking a second opinion before committing to anything. I will also go to the Royal Marsden for the consultation as I'm sure that they will want to be sure I make the right decision.

Thanks again......

[humanbean in reply to Hidden]

Bear in mind that the right decision for a hospital or a doctor isn't always the same as being the right decision for you. They take into account things like reducing their patient load and costs associated with having a patient on their lists who won't go away because they refuse RAI and thyroidectomy. Those issues won't be relevant to you. Instead your choice of treatment should depend on how bad (or how well) you feel while being hyper, how well (or bad) you feel while on treatment, and how easily (or otherwise) carbi puts you into remission.

If you have hyperthyroidism you could go on carbimazole for, say, 12 - 24 months and then go into remission for 1 year, 2 years, 5 years, or possibly for the rest of you life. And the x years of remission (or the rest of your life) will be far more pleasant and healthier for you if you still have a fully functioning thyroid.

Some people on this forum have had several stints on carbimazole and multiple remissions.

Some doctors think that hypothyroid people (who are mostly women) make a lot of fuss about nothing, and we're all hypochondriacs - as if having an underactive thyroid is no worse than having a mild cold. Because thyroid problems are associated with women, and doctor's attitudes towards women's health are often appalling, thyroid disease has been a poor relation in terms of research for years. It is true that some people do well on Levothyroxine for years, but eventually many people find they can't convert from T4 to T3 very well and their health falls apart, perhaps years down the line.

Getting a high enough dose of Levothyroxine can be very difficult. Being able to convert adequate amounts of T4 to T3 is also problematic for many people, and possibly more so if the patient has been hyperthyroid and had RAI.

Getting prescribed T3 is also virtually impossible because in the UK it is more expensive than anywhere else in the world. Instead of fixing the problem that causes the T3 to be expensive the NHS has decided it is easier to deprive patients of T3 altogether. Then they come out with all sorts of post-hoc justification that salves their conscience but does nothing to help the patient. It leads to the absurd situation that British thyroids allegedly work differently from thyroids in other countries or in private patients. (It's a lot easier to get T3 in the UK if you are a private patient who is willing to pay hundreds of pounds a month for 28 tablets of T3.)

So, if you are being pushed into RAI then I suggest that you push back and reject any attempt to make you go through RAI until and unless you are positive that your diagnosis is correct, and that you can't cope with being hyper and actually want to go through with it. Don't forget that thyroidectomy is another option. And also, RAI is not without side effects and can affect your sense of taste (and possibly smell, I'm not sure), your production of saliva, can damage your eyes, and could increase your risk of other effects from swallowing a radioactive substance that effects every organ and tissue in the body.

[dusty2]

Hi Flatjack,

I also had RAI without any problems & have done well taking Levothyroxine.

[Hidden in reply to dusty2]

Thanks dusty, good to hear. Is it normal to go from over to under after RAI?

[Angel_of_the_North in reply to Hidden]

When your thyroid is killed by RAI or removed, you become hypothyroid and need to take replacement hormones for the rest of your life. Your doctor should have explained this to you

[Hidden in reply to Angel_of_the_North]

What my endo said was that after a consultation with the Royal Marsden, they would assess whether or not RAI treatment was suitable for me. If is was decided to proceed, they would make further tests and then assess the RAI dose to take account of the results. He said the outcome could go one of three ways. Either the overactive hormones returned, or hopefully they remained stable and finally they could result in an under active thyroid, in which case I would need replacement therapy for the rest of my life. He said that given my heart condition, that this would likely produce better results long term than taking Carbimazole and possibly having to increase the dose over time.

Is this something you would disagree with?

[ling in reply to Hidden]

After 5 years with Graves, what I can attest to is that, even if your thyroid blood tests show stabilisation, thyroid hormone levels fluctuate all the time and thus are apt to cause problems.

My fluctuating thyroid levels, especially when under stress, be it physical or mental, causes symptoms whenever, and appears progressive. AF is one of the symptoms that I worry about developing.

In your case, you should figure out if your hyperthyroidism is a trigger for your AF. If it is, then it makes sense to have it fixed. But to do that, you need to identify the cause.

If the cause is active nodules in the thyroid, you might be able to shrink these without the need to destroy your thyroid. This will save you the hassle of dealing with the symptoms that come with not having a thyroid.

If the cause is something like Graves, which could be difficult to adequately control by just taking carbimazole, then perhaps RAI or thyroidectomy is on the cards.

[SlowDragon Administrator in reply to Hidden]

Before making any decision you need all four Antibodies tested

You still don't seem to have had TSI or TRab antibodies tested to confirm Graves' disease

Your low TSH and only slightly raised fT4 are typical of early stage Hashimoto's

We see many many Hashimoto's patients misdiagnosed as Graves

Early stage Hashimoto's often results in these hyperthyroid type test results

These results to do suggest Graves' disease

thyroiduk.org.uk/tuk/about_...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

[Hidden in reply to SlowDragon]

Thank you for this information which I will raise with the Consultant at the Royal Marsden. I am mindful that having AF will have a bearing on what treatment, if any I should consider. I may be wrong, but it sounds as if what is being suggested is treatment which is available privately and not on the NHS which if true, raises all kinds of questions. In mid August I was prescribed 5 mg Carbimazole and blood tests in October showed no change to TSH, but a T3 reduction of 1.2 pmol/L which brought it into range. T4 already in range, reduced by 4.2 pmol/L and Peroxidase, which had never been taken before was just in range. Four weeks later, TSH didn’t change, but T4 dropped a further 3.4 to 13.4 but T3 rose to 5.4 putting back to being just out of range. The Endo and my Electrophysiologist (cardiologist) both share the view that hyperthyroidism and AF do not go well together and Carbimazole is not a suitable long term drug for some one with a heart condition. Therefore, the only options seem to be do nothing or go for PAI treatment.

Obviously I do not know what medical qualifications administrators on this forum have, but I do know that the Royal Marsden is a centre of undisputed excellence. Of course, I will let you know their response to the points you have raised. Once I have the answers to their tests, the scan and the various questions which have been raised on this forum, which I have said many times, have been appreciated, a decision will have to be made, or deferred!

[Aslangal in reply to Hidden]

Yes because you won’t have a thyroid so you will take Levo for the rest of your life. I had RAI about 12 years ago and I am beginning to wonder if I had an autoimmune disease then which no one explained to me. Read as much as you can, look at British ThyroidWebsite and Thyroid UK But you will get excellent advice on this forum. My recent blood test showed my antibodies through the roof indicating autoimmune problems. I have been proactive in my own treatment and went privately for the blood tests. GP picked up there was something wrong in August. We are now heading in to December! You have to be your own advocate. Your symptoms are as important as your test results. Doctors do not know everything sadly. Even Endocrinologists unless they specialise in thyroid. All the best 😀

[ling in reply to Aslangal]

What antibodies do you have?

What are your symptoms?

[Aslangal in reply to ling]

Thyroid Peroxidase was 57

[Aslangal in reply to Aslangal]

Thyroglobulin was over 1000

[ling in reply to Aslangal]

What is TPO range?

Why did you get the antibodies tested?

[dusty2]

I was told before I actually had RAI I would go under.

I was given time to make up my mind after I was told my options of surgery or RAI.

I hope your appointments help you decide.

[MiniMum97]

Please get a second opinion before nuking your thyroid. As GG has said, those results provide no reason why you would need RAI. You need a Graves antibodies test (although v unlikely with those results) and a thyroid ultrasound as a minimum.

[Lora7again]

I would never ever destroy my thyroid because it would be like jumping from the the frying pan into the fire because Doctors in the UK simply do not know how to treat thyroid disease. Just look at the number of people on this site who are asking for advice because Doctors don't have a clue!

[Lora7again]

Are you still going to kill your thyroid??