Side effects of RAI, how long afterwards?

[stevehat]

Had total thyroidectomy and 24 lymph nodes removed in November, the RAI treatment 2 weeks ago , feeling really bad,, buzzing in head and around scar , itchy skin - no rash think its side effects of the RAI, anyone have experience of this?

Still on 200mg of levoxothyrine.

[LouiseRoberts]

Sorry you had no replies - hopefully someone will pick this up from Latest Activity..

L

x

[Clutter]

Hi Steve,

I only recall dry mouth as a temporary side effect following 100mCi I-131.

You may find something in the following links inspire.com/search/?query=R...

If you're worried call the nuclear physicist and discuss.

[Loopycat]

Think you should speak to your team . I had no symptoms at all although was warned to expect a dry mouth/sore throat - nothing like you're experiencing

[stevehat]

Thanks for the replies, can't get hold of the thyroid nurses or nuclear team, very frustrated. Could it be I'm on too much levoxo? not having my levels checked until mid march

[nickym1]

I did feel quite shaky and strange, excessively tired and weak after tt and RAI. Also had severe itching in different parts of my body - but I'm sure that was to do with medication. I was on t3 only until after my post RAI scan. My symptoms have improved since on t4 and dosage is correct. I didn't have buzzing though. I would continue to try and speak to your consultant for advice and possible early blood test.

It's still early days. Your body has lots of adjusting to do.

Hope you're feeling better soon

Nicky x

[stevehat in reply to nickym1]

Thanks Nicky for the reply, managed to speak to thyroid nurse, think I'm just trying to do too much too soon, went back to work 5 days after RAI. Found out elsewhere that itching is possible and headaches too. The buzzing is occasional. I'm going to give myself more time to recover , the nurse said its not the Iodine being in the body , but the recovery from the damage that it does and most people take a couple of weeks to recover- made sense.

They don't tell you this before do they !!!!!

Can I ask you , is the levoxo T3 ? and whats t4?

[nickym1 in reply to stevehat]

Yes, more recovery time sounds like a good idea.

Liothyronine is T3

Levothyroxin is T4

It's all rather confusing to start with!

I'm glad you spoke to your thyroid nurse.

Btw, around 2 weeks after RAI, I also got very sore nostrils and lost my sense of taste. Phoned the hospital who couldn't explain much about it. (They basically said that I probably didn't suck enough sweets while in isolation!) However, the thyca website had a bit more info about those symptoms - and they are quite common!

[stevehat]

Hi nicky,

Thanks for clarification. So I'm on t4 already just need to check its right dosage. Noticing the nostrils already . Did the ' no taste' last long? Thanks again

[nickym1]

Ah, poor you. The taste took longer to improve than the nostrils. My RAI was April 2013 and If I remember correctly, my taste was off for at least two - three weeks. It got gradually better. Things tasted really bland, or sweet when it should taste salty.

Some people use Vaseline in the nostrils to keep it moist, but if it gets really sore you might have some infection which would mean some ointment from the gp.

Have you had any blood tests yet?

[stevehat in reply to nickym1]

Hi Nicky, No not had my blood tests after RAI , should I have had them done ? my RAI was on 27 January 2014. GP's not much cop.

[nickym1 in reply to stevehat]

Hi Steve, my blood was taken 6 weeks after RAI (I think) to check tsh, t4, ft4. Our tsh needs to be suppressed after thyroid cancer - so does need looking at. I am looked after by a consultant in the Thyroid Clinic at the Churchill Hospital in Oxford. He oversees my meds and blood results.

You should have a consultant too besides your gp. My gp doesn't seem to know much about thyroid cancer, so I researched a bit myself to ensure I get the best care.

[stevehat]

Thanks again Nicky, yeah I've a lot to learn too, I realise now.

It turns out I have got an appointment 17 March at Local Weston Park Hospital, Sheffield, came in the post today.

I assume they will do a blood test and look at my levels then , is that the procedure?

How long have you been post RAI & surgery ? and how long before you felt near like you were pre-op ?Did you have TT and lymph nodes out ? they left me with a really big scar - although it is blending in a bit now.

take care

steve

[stevehat]

Sorry Nicky , just read your Biog, ignore the what questions, I am interested though in how you got through this last year.

steve