Huge anxiety 2-3 days after Radioactive Iodine treatment

[D99333309]

Hi, I hope someone can help/advise.

After 2 1/2 years on carbimazole for Grave's disease (5mg for the last year or so), I've had RAI.

It was administered on Tuesday, I felt ok until bedtime on Thursday - settled in bed but felt paniky, very conscious of my heartbeat and breathing, felt the need to breath more deeply.

Worried that I might be having a heart attack!

My husband took my pulse, it was strong and steady, around 75 bpm, so we sat and chatted for a while, I calmed down a bit. Managed to get some sleep.

But woke up today (Friday) feeling shaky & anxious - you know the feeling if you have a near miss of a car accident, you have to pull over and calm yourself before you can drive on. That tight scared feeling across your shoulders . It's lasted all day. Again my pulse is steady and strong, around 80 bpm.

I rang the endocrine clinic, who said it isn't normal, but can't do anything. Call GP. So called the GP, who have no appointments and can't get a doctor to call me or anything. They said go to a walk-in centre, but I'm still radio active, so I can't go and sit in a public waiting area.

Otherwise I could call 111 - but last time I needed to do that they didn't call me back until 12 hours later (4 a.m. when I'd managed to actually fall asleep) and were no actual use when they did !

Do I just have to ride this out? How long will it last ?

Very cross with NHS right now

[SlowDragon Administrator]

Welcome to the forum

Do you have any results from BEFORE RAI

Ideally

TSH, Ft4 and FT3 plus importantly vitamin D, folate, ferritin and B12

Presumably you were diagnosed as having Graves’ disease - confirmed by high TSI or Trab antibodies

Low vitamin levels are extremely common with Graves’ disease

Hopefully others who have had RAI may add comments and suggestions

Have you been started on Levothyroxine or have you been told you need blood test first

[humanbean]

It would be helpful if you told us why you had RAI, what your diagnoses were, and how long these problems went on before RAI.

[D99333309 in reply to humanbean]

I did give that info, diagnosed with Graves disease, been on carbimazole 5mg for 2 and a half years before being given RAI.

[PurpleNails Administrator]

Welcome to forum.

As I understand it you cease carbimazole a week or two before the treatment so the iodine is absorbed by the working thyroid.

Then the cells are destroyed which is what reduces the function & this is usually quite a slow process.

Having stopped medication and having a treatment has likely caused a higher hormone levels so I'm sure it will settle.

Was a repeat blood test scheduled to check thyroid function?

I'm sorry your endocrinology & GP practice are not being helpful. If it doesn't settle you must be politely persistent & ask for more checks to be done.

Your doctors is very likely to ask if you were worried about having the treatment? and suggest you are stressed about the treatment & having to be isolated afterwards rather than the treatment causing any sort of immediate reaction.

[pennyannie]

Hello D99333309 and welcome to the forum ;

From what i remember I was fine after the RAI apart from having to isolate -

I read that RAI can induce increased antibodies in some people, but hopefully these will subside - if not you really do need to go back to the hospital.

You might like to read further around all aspects of Graves Disease, which I presume is your diagnosis and why you have had RAI thyroid ablation.

elaine-moore.com

[pennyannie]

Hello again :

Have you contacted the hospital - are you more comfortable now ?