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[Mamie]

I attend an endocrinology bone clinic each year at a well known London hospital regarding my osteoporosis and they also keep an eye on my thyroid.  I have a goitre (swollen thyroid gland) and was told by them several years ago that it is indicative of subclinical hyperthyroidism.  A 2019 nuclear medicine scan suggested a right upper pole autonomous nodule.  Anyway they suggested a wait and see approach. 

So last week my yearly appointment came around again and as recent blood tests show my thyroid to be still suppressed (TSH 0.13) the endo asked if I have any symptoms like palpitations, insomnia, anxiety etc.  I told him I get very intermittent palpitations and certainly find sleep difficult on many nights.  I am certainly off the scale anxious at times, which feels different that the usual anxiety I have had for years.  But cannot say for sure if that might be a mental health issue.  I have not lost weight which has remained steady at approximately 9st for several years.  Nor do I get diarrhea (sorry cant never spell that!), more prone to constipation regardless of high fibre diet. 

He explained that hyperthyroidism affects the bones and heart and that mine would not get better.  He suggested radioactive iodine treatments and asked how I felt about that.  I told him I would need to look into it more and he was understanding saying that "of course you're not a doctor".  He said he would refer me on to speak to someone about it.
Then today a letter came with an appointment for a Thyroid Scan with uptake Technetium.  Also a copy of the letter from the endo saying that he has 'referred her for radioactive iodine treatment, which she is in agreement with, and she will have a discussion with the nuclear medicine team prior to receiving this to go through in more detail'.  The thing is I never agreed to this.  I thought I was probably being referred to another consultant/doctor to discuss the pros and cons.  It's not something I would go in to lightly. 

My intention is to go ahead with the scan and ask the people carrying out the scan (next week)  what happens from here. 

I would be grateful for any advice and am wondering if there is anyone on the forum who has had RAI for their thyroid?

Many thanks,  Mamie

TSH 0.13 free T4 13.2   antibodies ok 

[CLKD]

You don't have to agree to any treatment until you are absolutely certain it's 4 U.

I would ring the Consultant's Secretary and ask her to check what is written in the notes, as well as speaking to the GP Surgery to find out what the initial letter after that appt. states.

Have U been offered anti-anxiety medication on an 'as necessary' basis to ease palpitations etc.?  Beta-blockas even?

[Wrensong]

First, if there's a tel no on the appt letter for the scan I would ring & ask them what to expect on the day if there's not sufficient info with it.

The following link is from an American site so procedure may differ here, but it was the most detailed I could find that's aimed at patients.

https://www.radiologyinfo.org/en/info/thyroiduptake

The quote you've given from the letter seems ambiguous, so as CLKD suggests, ringing the Consultant's sec for clarification would be a good starting point or a tel call flagging up your concerns to your GP.   

Your Endocrinologist obviously knows your history & has advised what he feels is best, but I think you are right to ask all the questions you need to before agreeing to treatment that may result in your becoming hypothyroid.  You can also request a 2nd opinion from another consultant. 

Your TSH is low but your FT4 doesn't look high according to the ref range for the lab I use, so I'm not sure what to make of that.  As you say, those symptoms you have that could be due to hyperthyroidism may also relate to other issues, menopause included.  Hopefully the scan will show more clearly what's going on.

There are some links here from the British Thyroid Foundation which also has a helpline (& one NHS link). The BTF may be able to put you in touch with someone who's faced the same decision as you &/or been through RAI treatment if you ring them.

https://www.btf-thyroid.org/treatment-of-an-over-active-or-enlarged-thyroid-gland-with-radioactive-iodine

https://www.nhs.uk/conditions/overactive-thyroid-hyperthyroidism/treatment/

https://www.btf-thyroid.org/hyperthyroidism-leaflet

https://www.btf-thyroid.org/telephone-helpline

Sorry I can't help more - I'm hypothyroid so my situation is different.

[Mamie]

CLKD -  Many thanks for your input.  I wont be rushing into any treatment without being fully informed about the pros and cons.  I intend to ring the secretary today to try and clarify matters.  No I haven't been offered either anti anxiety medication or beta blockers.  I have used a zopiclone intermittently from time to time over the years.  The problem with them is that they can leave a nasty hangover feeling the next day, but helpful if one is desperate.

Wrensong -  If I was definitively hyperthyroid rather than subclinical, then the decision would be easy.  But it feels a little like being caught between the devil and the deep blue sea at the moment.  If definitively hyperthyroid with many symptoms, then treatment would almost certainly improve health and quality of life.  But in my case I am worried that I will exchange one set of problems for other possibly worse and harder to control symptoms.  The consultant said that most people after RAI (radioactive iodine treatment) become hypothyroid.  So that will entail lifelong thyroxine medication. 
The scan may make decision making a little clearer. 

Very many thanks for all the links.  I looked up a brilliant webinar on RAI on the British Thyroid Foundation's site yesterday evening. 

Mamie

[Wrensong]

If I was definitively hyperthyroid rather than subclinical, then the decision would be easy. . . But in my case I am worried that I will exchange one set of problems for other possibly worse and harder to control symptoms.  The consultant said that most people after RAI (radioactive iodine treatment) become hypothyroid.  So that will entail lifelong thyroxine medication. 

Yes exactly.  As you say, the scan outcome may help you decide.

I don't use it myself, but Thyroid UK have a forum where you may make useful contacts.  Glad you found something helpful on the BTF site.
Wx

[Mamie]

I have been in touch with the consultant's secretary and she said to email my questions which she will pass on to him.
I will post again when I get clarification of the issues.  In the meantime I am doing a lot of reading around the subject, mostly on the wonderfully informative British Thyroid Foundation's site. 

If there is anyone on this forum who has experience of radioactive iodine treatment, I would be be very glad to hear from you 

Many thanks.

[Wrensong]

So glad you're making progress Mamie.  I've been a BTF member for about 25 years - used to just be newsletters & a medical question & answer service.  Website is more recent.  Do let us know how you get on.  Everything crossed for you.
Wx

[Mamie]

Thank you Wrensong 

[Nas]

Hi
I’m hyperthyroid too and have the goitre. I take 10mg carbimazole daily.
This treatment has been offered to me too, but I declined as I was scared!

I have palpitations, anxiety and poor sleep. At present I don’t know what is menopause and what is thyroid. Next week I’m having a blood test to check oestrogen and thyroid. Then I will know what’s what.

My dad had opted for removal of the thyroid, but was offered that iodine treatment initially.

Best of luck.

[Mamie]

Thank you for responding Nas.  I am sorry to read that you are experiencing all those symptoms.  I'm 69 and went through menopause many years ago, but have never felt quite "well" ever since.  The initial reason I came on this forum (September of last year) was to ask members opinions and feedback on starting HRT at this late stage.  I even made an appointment with a well known Harley St. specialist.  But on seeking another medical opinion of someone who thought it was too big a risk at my age (though not if I had been on it right from start of menopause) and who said that of course I will come out of there clutching a prescription for Hrt as that's their bread and butter.  I subsequently cancelled the appointment.  I feel regarding that issue that I need to accept that I cannot change the poor advice and decision making of the past and must let that go .. I cannot go back in time. 

So I feel this latest ramping up of my anxiety and palpitations over the past 2 years or so may very well be to do with my thyroid going a bit haywire.  I have been an intermittent anxiety sufferer for most of my adult life so it's difficult to say where one ends and the other begins.  I suppose the difference I can point to is that this anxiety feels a lot more physical if that makes sense.

I will ask what they think of Carbimazole as an option as opposed to RAI if I get to discuss it all with someone.

Take care and many thanks.