Need advice

RAI, to go or Not to go ?

Base on the report I attached.

So far, don’t experience enlarged gland (goiter) or swelling at neck

[greygoose]

When were you diagnosed? What were you taking at the time all those tests were done? Because none of them look like Grave's results. Did you have any antibodies tested?

[Hidden in reply to greygoose]

Hi greygoose,

Diagnosed since 2016. With Carbimazole 5mg (1/2 tablet per day currently). Last visit to Endo, He recommended RAI. This scared me away. So far, didn’t do any antibodies test. What can the antibodies test tell?

[greygoose in reply to Hidden]

The antibodies tell you if you have Grave's or Hashi's, or something else. It's a bit rash of your endo to recommend RAI if you don't have Grave's. And, if you have Hashi's, you shouldn't be on carbi.

In fact, if antibodies have never been tested, then you don't actually have a diagnosis.

Your results look more like Hashi's, to me.

Were you 'diagnosed' on 1st August 2016 with an FT4 of 34.4? If so, I very much doubt you have Grave's. But you would need antibody tests to confirm.

You need:

TRAB or TSI for Grave's

TPOab and TgAB for Hashi's

Without antibody testing, I would not recommend you agree to RAI.

[Hidden in reply to greygoose]

Hi greygoose,

Yes. Blood test with FT4 of 34.4 on august 2016 with TSH undetectable.

Ok. Will go and get the antibodies test . will come back once I got the result. Maybe next week.

[greygoose in reply to Hidden]

Well, TSH would be undetectable with an FT4 of 34.4. But that doesn't mean you have Grave's. The FT3 is the most important number, and yours probably wasn't that high, because when your FT4 came down to 20.22, your FT3 was only 5.64, which isn't high at all.

[Hidden in reply to greygoose]

Hi greygoose,

Your prediction is precise. What is your comment base on my recent blood test? Please help.

[SlowDragon Administrator]

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If you are in the UK, Private tests are available. Thousands on here forced to do this as NHS often refuses to test or antibodies or all vitamins

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

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

Link about antibodies

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

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Many Graves or Hashimoto's patients find strictly gluten free diet helps. Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

[Hidden in reply to SlowDragon]

Hi Dragon,

Thanks for all the information. Will get all those tested. Unfortunately, it’s uncommon to have the antibodies test (TRAB, TPOab and TgAB) locally here. The private lab that I checked this afternoon advised those test need to be conducted oversea. We can only get the result after 3 weeks.

[pennyannie]

Hello ahbeng

Well, in short, no don't go.

Why have your thyroid burnt out with radioactive iodine. It's a toxic cocktail that you drink down , going through your whole body and known to cause damage to other glands and organs, in some people.

Trust in your gut and listen to greygoose -

[Hidden in reply to pennyannie]

Hi Pennyannie,

Thanks for the advice. will decide after the antibodies test. Have a nice day.

[dusty2 in reply to pennyannie]

It was one capsule for RAI when I had it, it was not a drink.

[Hidden in reply to dusty2]

Hi dusty,

Do you feel happy with the treatment, or a little bit regret?

[dusty2 in reply to Hidden]

I felt better within a day or two. It was the best thing I did. I do not mind taking Levothyroxine every day I don't find it a hassle.

[Hidden in reply to dusty2]

Glad to hear that you are doing well

[pennyannie in reply to dusty2]

Oh, that's interesting mine came in can with yellow and black stickers all around it, and the medic was dressed in a spacesuit and pushed it towards me with a metal grabber !

That was in 2005, maybe times have changed for the better. It's still a toxic substance.

[bantam12 in reply to pennyannie]

Good grief, I also had it around that time but nothing like your experience, no spacesuits or black and yellow stickers, just a room, a technician in normal clothes and a tablet, couldn't have been easier.

[pennyannie in reply to bantam12]

How strange - don't know quite what to say - thought we all had this service ?

[bantam12 in reply to pennyannie]

Clearly not, your experience sounds a bit over the top !

[dusty2 in reply to pennyannie]

Mine looked like a flu capsule, he handed it to me in a wee medicine cup like you get your medication in hospital. He was dressed in radiologists uniform & sat beside me & handed me the wee cup & a glass of water to take with it. I had it in 2012.

[pennyannie in reply to dusty2]

Well, I had a 1/2 full coke can size of RAI to drink down through a disposable straw.

I've since read it can be administered in tablet, capsule or liquid form.

I was shocked with the whole procedure and am glad others haven't had to go through the same situation. I 'm now starting to think, why me, etc.etc. - am not good with stress and anxiety so need to park this before I try to go to sleep tonight.