[joy123]

#1060528

Hi everyone
Well my RAI was yesterday and thought I`d share the experience of what happened over here in our local city hospital.

First off a nurse gave me a jab of a small amount of radiation for the uptake scan- she sent me away to get a drink and to be back in 25 minutes. Another nurse called me and the scan took 5 minutes. She said they do an average of 8 RAI treatments a week, which reassured me that I was doing the right thing- for me!
I was put in a waiting room to wait for the nuclear tech/guy who arrived about 15 minutes later.
We went to his room, my husband was allowed to come too. The tech said that the scan of the thyroid showed a pattern typical of Graves where the radiation was `taken.` ( I didn`t know that Graves can show a pattern on the scan?)
We asked as many questions as we could think of – my main one being `will this make me feel better?` And the answer was yes, although perhaps not straight away as the thyroid is renowned for being slow to change. And if not they can do it again.
My radiation dose came in a drink, a half a test tube amount, that I drank through a straw and then given a small drink of water to wash it all down.
And that was it……
Interestingly I`ve read everywhere on the net that RAI inevitably sends us hypo but this guy volunteered the information that – it can send you hypo but it can be years for that to happen.
I was given a yellow card with rules and regs and dates of when I can go to the cinema (for instance) – but things like shopping are ok right away because I`ll not be in contact with anyone long enough to cause them problems.
The tech guy said the radiation will head for my blood stream 1st and will be taken up fully by my thyroid today…and each day that passes I`ll be less radioactive.
Last night I was awake most of the night so assumed that this was because of the RAI. Today I keep getting a little warm and then it passes.
I can`t say I`ve got a bundle of energy yet – but then I was awake half the night!!
I`m so ready to get well and this is the beginning of that journey.
Joy x
ps The time on this post says 3am, but for me it`s 11am uk time

[Kimberly]

#1183143

Hello and thank you for sharing your story!

(Note: there were actually two identical posts, and I deleted the second one so that you will get comments on a single thread).

The uptake test can diagnose Graves’ disease in addition to being one option for deciding how large of a dose of RAI to give. In Graves’ disease, the thyroid gobbles up a lot of the iodine, and it is spread evenly throughout the thyroid. With hashimoto’s thyroiditis, there will be very low uptake, and with nodules, there will be high uptake, but concentrated in one specific area.

RAI usually does its work in 6-18 weeks, so hopefully, you have a follow up scheduled soon to check labs. Also, don’t be afraid to be pushy about getting Free T4 tested – TSH can remain suppressed for quite some time after therapy and is NOT a good benchmark for deciding when to start replacement hormone. Starting replacement hormone *before* you go too hypo is critical in reducing the risk for eye complications.

Take care – and please keep us posted on how you are doing!

[joy123]

#1183144

Thanks Kimberly
you have all helped me a great deal understanding this.

My hospital provides me with a thyroid specialist nurse, who I can phone. She sends me blood forms to have my blood drawn at our local cottage hospital, then the nurse calls me to tell me what amount of carbimazole to take.

Now I`ve had RAI the nurse has sent me another blood form and a list of hypo symptoms to watch out for- and to get the blood drawn if I get them. Or if not in 4 weeks time.
The NHS can be hell sometimes but once you`re in the system – it can be wonderful, the biggest problem is getting our doctors to treat our symptoms and not our levels but that seems to be happening world wide!

Day 3 after RAI and I feel different in that I WANT to do things -against haven`t wanted to do anything for over a year.
Trouble is some old health problems are kicking off big- time. I had previous surgery that gave me balance problems which I usually deal with ok. Right now my balance is terrible- I feel drunk! I`m thinking that RAI has affected my `weak spot` – my balance.
Also yesterday and today, I`ve had a mild sore throat and mild headaches. Plus feeling warm that comes and goes.
Your opinions are really appreciated
Thanks again
Joy x

[Kimberly]

#1183146

Glad the info was helpful!

If the balance issues continue, it wouldn’t hurt to put a call in to the nurse (or your primary doc) just to get an expert opinion. A mild sore throat is common, but if that gets worse, it’s good to call as well.

My guess is that most U.S. patients are NOT sent home with a list of hypo symptoms – that’s a great idea!

Take care – and please keep us posted!

[joy123]

#1183147

Thank you again Kimberly, in fact I can`t thank this forum enough as I`ve found so much information on here to help me through this.

Day 6 post RAI and my sore throat has gone.
I think I`m `dumping` thyroid as I`m getting hot now and then.

I`m still having problems with my balance – which is worse since the RAI. I have balance issues from a previous surgery to my ear where the docs had to destroy my left sided balance, and even if I have a cold this causes me problems.
I spoke to my GP when I was 1st diagnosed and he wasn`t concerned but said this is bound to cause me imbalance too- although if it carries on I`ll speak to him again.

I`m happy so far with the outcome of RAI and I`m having moments of normal, where at one point I never thought I`d feel normal again!
I actually cleaned the house…..well some of it…..I even wanted to do it!
I hope this update helps someone else make the hard decision of whether to have RAI.
Joy xx

[Kimberly]

#1183148

joy123 wrote:

I`m happy so far with the outcome of RAI and I`m having moments of normal, where at one point I never thought I`d feel normal again!
I actually cleaned the house…..well some of it…..I even wanted to do it!
I hope this update helps someone else make the hard decision of whether to have RAI.

Great news – thanks for the update! And definitely keep your primary care doctor in the loop on the balance issues – that has to be frustrating!

[joy123]

#1183149

Over here on the other side of the pond things went downhill right on the 14th day post RAI. I had sweats, sore eyes, headache, palps like in the past.
So I phoned my thyroid nurse, who verified what I was thinking myself, that I`m `dumping.` bigtime!
However the nurse did arrange for a GP to examine my eyes just to be sure I didn`t need referring to the eye specialist again. I`d seen the specialist before, she said I have minor Graves eye problems , gave me eye drops and cream, discharged me- but said she`d be happy to treat me if needed.
Anyhow the GP was happy that my eyes were ok, they look ok but they feel sore, so I`ll just keep using the eyes drops and hope they improve.

A welcome piece of info from the thyroid nurse was that, although it`s not comfortable for me- the symptoms I`m having from a doctoring point of view are very good. It`s indicating that the RAI is working and working well!
She said that if I`m no better in a week`s time, they will intervene.

She said that some people can suffer badly post RAI and they won`t let me, but to give it a week and then get bloods early.
I didn`t think to ask but wondered if anyone here knows what they can do in that circumstance?
I already feel better than day 14 so I`m hoping I won`t need them to intervene- I just wondered what they can do?
For anyone about to go through RAI – I`m day 16 post RAI and getting glimpses of normal. I made the right decision to have it done.
Joy

[Kimberly]

#1183150

joy123 wrote:

She said that some people can suffer badly post RAI and they won`t let me, but to give it a week and then get bloods early.
I didn`t think to ask but wondered if anyone here knows what they can do in that circumstance?

Thanks for the update! I’m not sure exactly what the nurse is referring to…maybe that some patients are allowed to go too hypothyroid before starting replacement hormone? It’s definitely important to catch hypothyroidism early by monitoring Free T4 and T3 and *not* just TSH. The TSH can remain suppressed for quite some time after treatment, so it’s not a good benchmark for deciding when to start replacement hormone.

Take care!

[joy123]

#1183151

I had the impression the nurse was meaning they wouldn`t let me become too hyper- but you may be right Kimberley!

More has happened, I started feeling cold the past few days, tired and headaches but worse was a low mood.

As I`m only 3 weeks post RAI, I didn`t expect much information from a blood test – so I saved the official thyroid nurse`s blood form for when its supposed to be used in 3 weeks – and used the blood form the doctor gave me last week when he checked my sore eyes. On the form he`d asked for WBC and TSH only but I thought hey ho I`ve got this so why not use it?

I`ve gone hypo at 3.69 ( 0.35- 3.50) at exactly 3 weeks post RAI.
I`ve been on 5mg carbimazole since 5 days post RAI- so I expect they`ll suggest I stop that – I`ll know later as the thyroid nurse is calling me back.

I didn`t expect this to happen so quickly and I`m dearly hoping that this is the end in sight. Or can it mean my levels may still be fluctuating?
Thanks in advance for all your advice, past and present.
Joy x

[Kimberly]

#1183152

Hello – The time frame I usually hear referenced is 6-18 weeks, but that is for patients who have discontinued anti-thyroid meds, so I don’t think it’s unreasonable to see numbers like that at 3 weeks with the carbimazole.

Keep us posted on what the nurse says – and don’t forget to keep an eye on your Free T4 as well!

[joy123]

#1183153

Thank you Kimberly
That`s so reassuring that the numbers seem ok.
I`m beginning to feel anxious and I`m usually an upbeat lady so I`ve especially noticed my lower mood, which I don`t like!!:o

As expected the nurse told me to stop the carbimazole and go for bloods in 3 weeks time as planned. Those bloods will show the T4 as well.
She also told me that a TSH 3.69 they wouldn`t treat! I was like yikes when I came off the phone – and why she volunteered that information, I`ve no idea. So I`m left hoping the drop in Carbimazole will put me in a treatable place?
Thanks again
Joyx

[Kimberly]

#1183154

Hello – My guess is that your team doesn’t want to make you hypER again by starting you on replacement hormone if TSH is just barely out of range. The next test without the carbimazole should be a much better indicator of next steps, especially with the T4 testing.

Take care!

[joy123]

#1183155

Nobody said this was going to be easy, right?
I`m now 5 weeks and a bit post RAI, found I`d gone under active and eventually got my GP to prescribe 25mcg levothyroxine on a trial, twelve days ago.
My latest TSH 4.48 (0.35-3.50) T4 12 (8-21) was thirteen days ago. The day before I started the levo.
Which is under a bit but enough for me to suffer.
I`m so tired with nausea, headaches and occasional sweating…oh and cold!!
My next bloods are this next week, with the nurse calling me on the 24th to say whats next.
I think the levo is helping a bit – but what I`m wondering is how long before I notice a bigger difference?
Ok, I`m not a patient, patient and 5 weeks in from RAI is early, but I feel pretty crappy still.
Any opinions please- am I expecting too much too soon?
Many thanks

[joy123]

#1183156

Oh and sorry for whining……when there`s kids who get this it makes me ashamed. xx

[Kimberly]

#1183157

Hello – Replacement hormone takes some time to build up in the body, so it can be a few weeks before you see a full effect from starting the meds or from a dosage change. However, the good news is it sounds like your medical team is monitoring you very closely to keep you from going to hypo. Unfortunately, some patients end up with a TSH that is sky high and T3/T4 at the bottom of the barrel before the docs catch it and start replacement hormone! Hang in there!

[Author]

Posts