# Graves-newbie



## _Sunshine_ (Nov 24, 2011)

Hi all. I am having trouble dealing with having Graves disease so was hoping to find some support on here.

I am 24 and about 2 years ago I travelled through Europe & England for 6 months. Two days before leaving London to head home (to Australia) I fell violently ill which turned out to be a parasite that I picked up in Greece. No doctor could work out what was wrong with me and for some unknown reason; a doctor tested my thyroid which came back with "abnormal" results so he referred me to a specialist.

After a long journey of seeing a specialist every four weeks for over 12 months, they kept saying they were just monitoring my thyroid waiting for it to get worse and to then act on it. I had no idea what was going on and really wasn't given much information. I had two specialists come in at one stage arguing about how to treat what I had which they stated was hashimotos. Then the next appointment I had which was with another specialist (the other one was sick) he said I had graves' disease and needed to decide within the week to either have the surgery or radioactive iodine. I ended up getting the radiation done about 12 weeks ago. I had the four week check up & blood test and they said it had become more overactive and may need a second dosage of the radiation.

Then I had another blood test four days ago which showed it is now completely knocked out and underactive so have now started taking thyroxine.

I was on the beta blocker propranolol up to getting the radiation done and it was HORRIBLE. Was falling asleep in mid conversations, had zero energy, my heart was always racing, just felt awful. Ended up going off it about a week before the radiation.

I am a really active person. I go to the gym every morning, play netball two days a week and also play outdoor soccer. And I hardly find the energy to do anything anymore so I am hoping this thyroxine works soon because I can't handle much more of this! This is not how I imagined I would feel at the age of 24....every muscle constantly aches.

No one in my family has anything wrong with their thyroid so they find it difficult to understand.

Hoping there is others out there who are going through a similar thing as me.


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## desrtbloom (May 23, 2010)

Hi Hon:

I am so sorry you have been going through all of this. I can definitely sympathize. Do you have your blood test results with the ranges? If so, that is very helpful in being able to give you some advice.

It takes awhile after the radiation (or the surgery) to get regulated with your thyroid replacement drugs. So be patient. After having radiation or surgery it can take up to 18 months to start consistently feeling better. I know this isn't what you probably want to hear, but unfortunately thyroid disease and getting it undercontrol and regulated just takes time. Hopefully, once you get stabilized with your thyroxine you will slowly start to notice you are feeling better, getting more energy and on the road to recovery.

In the meantime - :hugs: It WILL get better. Hang in there. There are plenty of us on this board here to give encouragement and hope.

Patti


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## Andros (Aug 26, 2009)

_Sunshine_ said:


> Hi all. I am having trouble dealing with having Graves disease so was hoping to find some support on here.
> 
> I am 24 and about 2 years ago I travelled through Europe & England for 6 months. Two days before leaving London to head home (to Australia) I fell violently ill which turned out to be a parasite that I picked up in Greece. No doctor could work out what was wrong with me and for some unknown reason; a doctor tested my thyroid which came back with "abnormal" results so he referred me to a specialist.
> 
> ...


Welcome!! I had to have RAI 3 times so for you, I hope the second one will do the trick!

Have you had a sonogram or RAIU (radioactive uptake scan) prior to your RAI?

Thyroxine will work once you get that thyroid zapped. To determine this, they should be doing an RAIU to find out what the rate of uptake is. Is this in the plan?

Also, can you share your most recent thyroid panel results with the ranges and any antibodies's tests if you have had them?


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## _Sunshine_ (Nov 24, 2011)

I had a nuclear thyroid scan prior to the radiation. Is that the same thing?

From what I understand, the specialist said my TSH level was 0.02 when it was overactive and within 4 weeks it is now 50.0 and underactive. I cant remember the T3 and T4 levels.

My next blood test will be in 4 weeks or so.

Still feeling tired and have no motivation to do much. I hope I have the right thyroxine dosage!


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## Andros (Aug 26, 2009)

_Sunshine_ said:


> I had a nuclear thyroid scan prior to the radiation. Is that the same thing?
> 
> From what I understand, the specialist said my TSH level was 0.02 when it was overactive and within 4 weeks it is now 50.0 and underactive. I cant remember the T3 and T4 levels.
> 
> ...


Yes; nuclear scan.

What thyroxine are you taking and how much?


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## tespad (Oct 30, 2011)

i to was recently diagnosed and my uptake showed it absorbed 85 % of the dye so really hyper im taken methimazole 30 ml a day and stopped taking my atenalol the blood pressure med cause everything has slowed down havn't really expeirenced any side effects other than dizziness feeling okay so rai sounds like it makes you tired all the time i can't rmb what my blood test result were either but i will find them and let you know let us know how the thyroxin works as i to have decided on rai sounds less invasive than surgery ...thanks tess


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## Andros (Aug 26, 2009)

tess said:


> i to was recently diagnosed and my uptake showed it absorbed 85 % of the dye so really hyper im taken methimazole 30 ml a day and stopped taking my atenalol the blood pressure med cause everything has slowed down havn't really expeirenced any side effects other than dizziness feeling okay so rai sounds like it makes you tired all the time i can't rmb what my blood test result were either but i will find them and let you know let us know how the thyroxin works as i to have decided on rai sounds less invasive than surgery ...thanks tess


Let us know, Tess! When is RAI scheduled?


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