3 weeks post RAI: Hi everyone, I’m looking for... - Thyroid UK

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3 weeks post RAI

Rachpiki
Rachpiki

Hi everyone, I’m looking for some advice. I am 24 days post RAI. I was told when given my date for that blasted pill that I would be all clear and safe to have close contact with my children. Who are 11,9,6, in time for Christmas. I had a measurement scan Friday and now I’ve been told I can only have 30 mins contact not close for next few weeks. Anyone else had a measurement scan or was told that after day 23 you could resume close contact? I also have tender saliva glands not every day. Anyone else experienced any side effect like this? Any advice would be so appreciated. Thank you x

27 Replies
oldestnewest

Sounds a bit over the top, after I had rai I carried on as normal after a couple of weeks.

shaws
shawsAdministrator

I hope this link will be helpful and I wish you a speedy recovery, especially over this festive season and I hope you feel better soon.

endocrineweb.com/conditions...

bantam12
bantam12
in reply to shaws

That link refers to rai for thyroid cancer which is much higher doses and usually requires isolation.

Rachpiki
Rachpiki
in reply to bantam12

My rai was for Graves’ disease.

bantam12
bantam12
in reply to Rachpiki

I had it for Graves to.

Rachpiki
Rachpiki
in reply to bantam12

Do you have children? I’m just wondering with the moving of goal posts for close contact etc. What to do?!?!

bantam12
bantam12
in reply to Rachpiki

I have 3 children, at the time I had rai they were 4, 9 and 13, I still did the school run and virtually carried on as normal except for only arms length contact for two weeks.

I've never heard of anyone have a post rai scan for radioactivity, any that isn't taken up by the thyroid is said to be eliminated within a few days, that's why you need to drink lots.

You have to make your own decisions whether to follow the doctors advice or not.

Rachpiki
Rachpiki
in reply to bantam12

They scanned me because of my job. I’m a district nurse. I have three children too. Did you give hugs after two weeks? On the letter they gave me with precautions it said 23 days no prolonged contact so I was aiming for that now they are saying a few weeks. Rubbish!

bantam12
bantam12
in reply to Rachpiki

If you hadn't had the scan you wouldnt know any different and you would just follow the letter saying 23 days as everyone else does !

But only you can decide.

Rachpiki
Rachpiki
in reply to bantam12

So true. That’s what I was saying. Thank you xxx

HiddenThis reply has been deleted
bantam12
bantam12
in reply to Hidden

You may not like it but many 1000s are perfectly happy after rai 🤗

HiddenThis reply has been deleted
bantam12
bantam12
in reply to Hidden

As on the forum that will be a small number, others are off living life, you personally haven't experienced either Graves or rai, note I said personally !

Not getting into anything more, to busy enjoying a happy healthy Christmas 😊

HiddenThis reply has been deleted
bantam12
bantam12
in reply to Hidden

Hmm that's 1 patient and 1 doctor 😉

HiddenThis reply has been deleted
Hidden
Hidden
in reply to Hidden

Personally I think both stink.

Hi there, I too have had RAI - never had a scan after the cocktail - from memory waited two or three weeks before I had close contact with my nieces.

Take good care

Penny

Rachpiki
Rachpiki
in reply to pennyannie

Thank you penny! Do you remember what dose you had? Xx

No, I'm sorry - at the time 2004 - 2005 I knew nothing of Graves Disease, took carbimazole for about 15 months and then drank the RAI cocktail !

I went hypo within a month or two and relatively OK for several years.

I am on this site as I've been unwell these past 4 - 5 years - it has been a massive learning curve and am pleased to write that, thanks to this site, I am now getting my life back.

In my experience Graves is poorly understood - and to some degree I have had to become my own doctor.

I am currently self medicating with NDT - it's early days but I believe I'm going in the right direction.

You might like to read Graves Disease A Practical Guide by Elaine Moore - there is also a website - It is stateside - medical protocol slightly different from here - this lady has Graves Disease -

Also from the USA - Tired Thyroid by Barbara S Lougheed - another woman who has been through RAI and felt the need to write a book and help others -

And then a UK book written by a doctor who has hypothyroidism -

Your thyroid and how to keep it healthy - Dr Barry Durrant Peatfield.

You may now not have a functioning thyroid but you need to know what you have lost and what you need to do to keep yourself healthy - vitamins, minerals, etc etc.

Many people " sail through " this autoimmune disease - and the RAI treatment -

those many thousands of people will not be on this site, as they have no need to be -

Obviously most people you will find here are with misgivings and questions -

Put simply, read all you can, regain your strength, and be aware of all the treatment options available, though not necessarily promoted or considered in primary care.

Take good care

Penny

Rachpiki
Rachpiki
in reply to pennyannie

Thank you. X

I had a mega dose of RAI for my rampant Graves 10 years ago - can’t remember the amount / numbers but it was likened to the dose given to thyroid cancer patients. I worked from home for 2 or 3 weeks as I had a work colleague who was pregnant at the time but other than that I carried on as normal as per my excellent endo and nuclear medic’s advice.

I didn’t have a scan after RAI either - I was told that any excess is eliminated via urination within a few days.

I was advised to suck lots of sherbet lemon type sweets after the RAI to avoid any potential salivary gland issues. All went smoothly and I have been well on Levo ever since.

I do hope you manage to enjoy Christmas time with your family.

Rachpiki
Rachpiki
in reply to MrsGraves

Thank you. Merry Christmas xx

Hi, I had Rai for Graves’ disease when I was a secondary school teacher. I was not allowed to teach for 16 days and then could only be within 1m of the students for 15 minutes per day for the next 8 days. After that I had no restrictions. There were no restrictions for mixing with adults, children need greater protection as they are growing so have more cell division occurring.

I am a physics teacher so understand some of this. The half life of the radioactive iodine is 8 days. After 24 days the activity has fallen to 1/8 of original. It is a beta emitter so only has a range of 1m.

After 6 half lives (another 24 days) it is down to 1/64 and considered to be down to the background levels naturally occurring.

I would suggest you can give occasional hugs but generally keep 1 metre distance for their safety.

I hope thyroxine works well for you when you start it.

Rachpiki
Rachpiki
in reply to R2d2c3po

Thank you.

Hi - I had RAI Sept 2017 for severe Graves (believe it started back in Jan 2017 as started to not feel myself and gradually got worse but the doc never did a TSH test, just told me I had to stop coming in so often, that he could get his license taken away). Finally end of august I went for my oncologist annual checkup as had breast cancer a few years ago and she did a TSH test and told me to get to the endo immediately) By the time I did I was in really bad shape, too bad to wait for the thyroid meds to kick in so had to have RAI or surgery. I had 20 microwhatevers. Was told any paper cups, plates, plastic utensils I used could not be put in regular garbage but saved for 3 months so hubby put the triple bagged stuff in the back of the garage and it went out for Christmas. Was told it would set off the alarm at the drop off station and I could be fined $1,000. Right after I had it I went into thyroid storm, that's how bad it had gotten. If only caught sooner but......

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