Waiting on RAI......!!!

[Itsjakefromstatefarm]

Post TT waiting for RAI in my third week. Very Hypo now feel so sick!!! My blood sugar drops now too. I want to get the RAI over with!!! I am crying. I been taking this hour by hour...i can't stay up. Have to sleep so much. This seems cruel. I hate this. I am afraid Of RAI and this waiting with no hormone. No one can prepare you for this. I just keep praying.

[Lucieb01]

What is RAI

[shaws Administrator in reply to Lucieb01]

It is short for Radioactive Iodine which is given to kill the thyroid gland completely. It can be given if the person has thyroid cancer or hyperthyroidism.

endocrineweb.com/conditions...

[Itsjakefromstatefarm]

Thank u are you waiting too?

[shaws Administrator]

I am so sorry that you are coping with this on you own and being scared takes over all our thoughts/feelings.

I shall also say a prayer for you as it can bring comfort to some. You are out on a limb at present and many who've had RAI will respond and it has been successful op for them as I'm sure it will be for you when you begin hormone replacement which I hope is soon.

Regards.

[Itsjakefromstatefarm in reply to shaws]

thank you for bringing me comfort and prayers

[mii101]

hang on in there as in my experience the worse is over with the TT. you will soon be able to put this behind you and maybe also jokingly refer to yourself as a cancer survivor! I know it is not a joke but I like to tease my friends and partner by throwing it in the middle of the conversation! almost there

[Itsjakefromstatefarm in reply to mii101]

I found the surgery to be much easier than going three weeks with no thyroid hormone

[SilverAvocado]

ItsJake, Are you not getting thyroid replacement while you wait for RAI? I was given liothyronine and had to give it up for 10 days before the RAI. Or you can have Levothyroxine right up to the treatment, with an injection I forget the name of to make your body believe it's all cleared out.

Three weeks with no thyroid and no hormone is terrible! You must be so scared and struggling so much to take care of yourself.

[Itsjakefromstatefarm in reply to SilverAvocado]

Yes I am getting no thyroid hormone. That is why I'm upset ..my insurance doesn't cover the shot that they give to stop it

[SilverAvocado in reply to Itsjakefromstatefarm]

The hospital I was in wouldn't fund the shot, either. The standard treatment there (which I had) is to take liothyronine. It leaves the body much more quickly than Levothyroxine, so you only have to give it up for 10 days before. It's a good situation to be in, because lots of people prefer liothyronine (T3) as a long term medicine, and if you've had it prescribed in the past I think it's easier to make an argument you should have it again.

Its totally barbaric to keep you for as long as 3 weeks! At this moment you will have close to zero hormone in your body, with all your thyroid panel blood tests off the charts. I waited a couple of months between my operation and RAI, so you could be stuck for ages, yet. I, ve been down to zero for 2 weeks before, during RAI treatment, and it's dreadful!

This sounds to me like a mistake, although doctors will always underestimate how bad it is, I can't believe this is the accepted procedure anywhere. Have you slipped through the cracks between departments? You are well within your rights to kick up a big stink about this!

[Itsjakefromstatefarm in reply to SilverAvocado]

They tried convincing me to wait six weeks!!!! I almost went psycho

[SilverAvocado in reply to Itsjakefromstatefarm]

Oh my God! Did you manage to get a prescription?

[Fruitandnutcase in reply to Itsjakefromstatefarm]

Jake, I'm so sorry you are feeling so terrible. could you speak to your doctors again and tell them how awful you are feeling, could you pressure them into doing something for you? I don't know much about the wait for RAI but could they not get you in a bit faster so that you don't have to be like this for so long.

I'm sending good thoughts and (((((big hugs)))) and lots of sympathy to you - and although it probably won't help at least you know we all sympathise and care for you.

[Itsjakefromstatefarm in reply to Fruitandnutcase]

I spoke to the docs RAI on Tuesday then isolation for three days. I count down the days I'm at zero hormone

[Fruitandnutcase in reply to Itsjakefromstatefarm]

Glad you are having it soon. Life wasn't going to be much fun for you had you to wait much longer. Good luck tomorrow, hope it all goes well