RAI

[Chell48]

My Endo wants me to have RAI.

My scan and bloodwork shows the following:

TSH  0.1
Free T4   20     22-28

Scan shows MULTI-NOLDULAR - but says benign
Also says the following which I dont understand:    ultrasound was undertaken and demonstrates the gland to be at the upper limits of normal in size.

Small multiple benign hyperplastic nodules throughout both lobes (dont know what HYPERPLASTIC means)
There is increased VASCULARITY on colour doppler imaging.  (dont know what VASCULARITY means)

Also would a profile like mine be SAFE to have RAI.

Many thanks

Chell

[Smilerdeb]

Keep drinking the water. I felt like a goldfish at the end of it but it was really worth it.
Suck on lemon slices if candy makes you wanna choke...thats what I did.
I had tearing of the eyes and it lasted on and off for a couple of weeks but nothing since.
I also got a 'hot neck' about 12 hours later.....a cold wet towel soon got rid of that.
By day 3 I was wondering what all the fuss was about.
My Doctor summed it up...he said.."Deb, dont wait for 'something' to happen as it wont".
And it didnt.
I did get a hyper 'spike' around the 4 week mark before I went Hypo.
Dont let the Doc/Endo let your TSH go higher than 10.0...then take baby steps.
You are on your journey to recovery!
Congrats and yell out if you need assurance or want to ask questions.

Hugs

[Ericamegan]

I received 30mcg of RAI 24hrs ago. I'm feeling pretty good, but have a lot of flem in my throat. I listed some of my hyperthyroid symptoms in the journal on my page, including rapid heartbeat, hand tremors, anxiety, & TED. I started prednesone 4 days before starting RAI for the TED.  My eyes did blur up a little yesterday, but feel okay today.  I'll keep you posted if I have any neg. side effects in the next week!  Good luck.

[Chell48]

Hi again

Well, thank you for all this information.

Actually I have been so afraid of making the right choice with RAI or surgery that I have forgotten to look up things like you suggest eg.  drinking of lots of water and what it will be like to feel hypo.  Cant believe I will be using this HYPO word yikes!!  haha

Its fabulous to get your input and many thanks for this.

I have just phoned another Endo for another opinion and he said RAI is the way to go.

In South Africa we have only 11 Endos.  We had 34 but the others have emigrated - I wonder why haha  ???    Its Africa I suppose. lol

Anyway the ones that are here are very good so I do feel in good hands.

THanks again and hope you continue to get more and more better.  I really do.

Big hug

Chell

[Smilerdeb]

The doc can prescribe steroids before RAI and for some time after and I think this may be a good idea.
I was like you ....felt that if this was life , I didnt want it as I was so ill.
I had RAI and havent looked back.
Yeah I get my 'sh@@ty days like most but not half as bad as before RAI.
Now start learning the other side of the fence so to speak.
I researched HYPER all along and then figured...I had better research HYPO and was glad I did then nothing took me off guard.
Make sure Doc/Endo doesnt let your TSH go over 10.0 after RAI.
Demand fortnightly bloods like I did and you will be fine.
You may need the beta blocker when the thyroid decides to 'die off' as it tries to 'fire up' for a few days just before going Hypo and you may get a few hyper soikes.
Nothing to worry about if you know what to expect.
I took the beta blocker around the 4th week after RAI and havent taken any since.
Be prepared for feeling like cr@p after RAI around the 4th week as thats usually when the levels start to fall and you start to go Hypo.
Once you feel 'cold' or feel 'different...then see about a T4 med.
Then your journey to wellness begins.

I dont regret having RAI...I was scared (like most are) and was waiting for 'something to happen' when nothing did .
After having such a fast heart rate for so long, I felt 'strange' when the heart rate didnt beat in my head, when the heart rate wasnt thumping in my chest.
That is a weird sensation you will get used too but strange at first.
I even told my boyfriend..'I cant feel my heart beat. Am I dead? "
I think that was the hardest thing to get used too.
Now I panic if my heart rate does go fast for any reason after it being normal for so long lol.
You will be fine...research all you can and drink non stop water the first 3 days after RAI.
If you cant suck on sour lemon candy...do what I did. Eat lemon slices.
This is important as the saliva glands get knocked about a bit and sometimes a metallic taste in the mouth.
That all wears off.

All the best and dont hesitate to message me if you need any help or questions.

[Chell48]

Thanks for your reply Smilerdeb

Yes I am Hyperthyroid and also diagnosed with Graves Disease.
Also have had Antibody tests and are really HIGH too.
TSH suppressed   and  Free T4 not too bad right now but is often way too high.

Had Isotope scan 2 weeks ago and results:
The count rate is elevated consistent with the history of hyperthyroidism.
No focal hot or cold nodules.
Multiple nodular - less than 7mm - benign hyperplastic nodules throughout both lobes consistent with multinodular hyperplasia
There is increased vascularity on the doppler imaging.

Please note that I have had Graves Disease for 5 years and had Carbimazole but twice now the disease has resurfaced and my heart is not feeling too good which makes me a 'useless idiot' most of the time and I am very upset by this.

I am also 48 years old and had a ECG a few months ago.  THe doc says my heart is fine but will never be normal due to Graves - wonderful!!

And am I battling with fatigue and palpitations at the moment.  Everyone can see how unwell I am but my son piped up to say that I never do anything anymore.  That is true because even hanging washing on the line is an effort.  Do you get like this too??

Im feeling very upset, alone and tearful today.  So im doing this week what the Endo suggested and am having RAI.  I cant take anymore.

Just one more thing.  Went to eye-specialist and he said eyes are perfect but Endo says I have very mild Graves eye disease.  Eyes do often hurt and burn.  There is no visible signs but endo says he can see a very little damage.

Do you know, can I be treated with steriods BEFORE RAI, to lesson the impact of getting the Graves Eye disease later on and to treat what I have now??

Thanks again and great to see your story to.

Kind regards

Shelley
Ultrasound demonstrates gland to be at upper limits of normal in size.

[Smilerdeb]

Hyperplastic means ....An abnormal increase in the number of cells in an organ or a tissue with consequent enlargement.

VASCULARITY means carrying fluid.

The next step would be to have a FNA (fine needle aspiration).

I cant comment on the levels as they are all different worldwide.
Can you post the reference ranges?
Also , have you had antibody testing done?
If not...ask for it to be done to rule out Graves Disease and Hashimoto Disease.