# Just told my hyper is Graves



## Rain (Jun 19, 2012)

My older threads are here and here if anyone would like to see previous lab results.

I went to my doc on Thursday to get the results of the long awaited RAI uptake scan, and was told I do have Graves.

This is what the findings of the 'pertechnetate thyroid scan' said:

_There is intense homogenous uptake throughout the gland.
No specific hot or cold nodules were seen.
The percentage Pertechnetate uptake at 20 minutes is increased at 6.1% (N 1-4%)
Appearances are consistent with thyrotoxicosis due to Graves' disease._

My latest labs done two days before the scan were:
*TSH...........5.12* (0.27-4.20)
*FREE T4.....9.7 *(12.0-22.0)
*FREE T3.....3.9* (3.1-6.8)

Meds weren't changed. I'm on 15mg carbimazole one day, 10mg the next. Told to get another blood test done in a month, and a referral to talk a surgeon who can do removal or ablation.

I am yet to get those other tests done, the TPO TBII etc etc. Will see if the surgeon can organise those. I think I might also try to see an endo, even if I have to drive the 4 hours to get there.

At the mo I feel the same, brain fog, tired, muscles are achy, headaches, dry skin, some mood swings, and my eyesight goes slightly blurry randomly. I'm also getting some stomach issues and reflux, unsure if that's because of something else.

Thanks for reading and in advance for any advice.


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## Octavia (Aug 1, 2011)

Rain, I'm sorry about your diagnosis, but it is good that you now _have a diagnosis_, and can move forward from here.

:hugs:


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## Rain (Jun 19, 2012)

Very true. Thank you.

Is my sight going slightly blurry part of it? I was worried it could be the start of eye disease, which I really don't want to get. Would I know by now if that was going to happen to me?


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## Andros (Aug 26, 2009)

Rain said:


> My older threads are here and here if anyone would like to see previous lab results.
> 
> I went to my doc on Thursday to get the results of the long awaited RAI uptake scan, and was told I do have Graves.
> 
> ...


Please make sure you get in to see an ophthalmologist. Sounds like the eyes are starting up and early intervention is much to your benefit.

http://www.caleyes.com/webdocuments/...ease_paper.pdf

http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html


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## Rain (Jun 19, 2012)

Will look into finding an ophthal. around here. Thank you.

Is there an average time frame from onset until those kind of things show?
I have some symptoms of hyper, but no typical GD ones. I don't have goiter or nodules etc, my gland is normal size.
It would be fantastic if my eyes were just having a hard time watching a computer screen for 8 hours a day at work, not starting to play up. What exactly can an ophthalmologist do to stop eye disease occurring/worsening?

Also I have a consult app with the surgeon in a month, is there anything in particular I should ask him? What other tests should I have done?


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## Andros (Aug 26, 2009)

Rain said:


> Will look into finding an ophthal. around here. Thank you.
> 
> Is there an average time frame from onset until those kind of things show?
> I have some symptoms of hyper, but no typical GD ones. I don't have goiter or nodules etc, my gland is normal size.
> ...


Sadly, this stuff is very insidious. Even you don't notice it nor do folks that you have contact w/every day.

That is another reason to get in to the ophthalmologist; to get a "baseline" to detect changes.

Special eye drops, sometimes prednisone either by drop or orally...............all sort of things to help stave it off.

Make sure your doc checks your liver enzymes in a timely fashion as anti-thyroid meds are very very hard on the liver.


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## Rain (Jun 19, 2012)

Andros said:


> Sadly, this stuff is very insidious. Even you don't notice it nor do folks that you have contact w/every day.
> 
> That is another reason to get in to the ophthalmologist; to get a "baseline" to detect changes.
> 
> ...


Thanks again.

Surprisingly, I've found an ophthal. where I live that has experience with graves patients so I'll book in.


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## Lovlkn (Dec 20, 2009)

Rain,

You are extremely hypo - call your doctor and tell him you need a dose reduction.

Your symptoms and labs are both hypo.


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## Rain (Jun 19, 2012)

Lovlkn said:


> Rain,
> 
> You are extremely hypo - call your doctor and tell him you need a dose reduction.
> 
> Your symptoms and labs are both hypo.


Ya know, I was wondering about that. Especially since they changed so quickly. I will call him tomorrow. Thank you


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## ideborah (Sep 19, 2012)

Rain said:


> Will look into finding an ophthal. around here. Thank you.
> 
> Is there an average time frame from onset until those kind of things show?
> I have some symptoms of hyper, but no typical GD ones. I don't have goiter or nodules etc, my gland is normal size.
> ...


I was recently diagnosed with Graves and I kept thinking not my eyes, not my eyes, it's just the computer, it's just the sun, etc. I also have a normal size thyroid without a goiter or nodules. My eyes feel gritty and dry and preservative-free lubricating eye drops really help. The pain comes and goes. Every morning I wake up hoping to see my eyelids haven't swell. So far no joy, but I've only been on ATDs for a few days.

Really get eye drops and go to the ophthalmologist (my insurance treated like a specialist visit and paid most of the cost). You need the baseline. Good luck.


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## greatdanes (Sep 25, 2010)

Lovlkn said:


> Rain,
> 
> You are extremely hypo - call your doctor and tell him you need a dose reduction.
> 
> Your symptoms and labs are both hypo.


I was wondering when someone was going to point that out. IMHOP, with those numbers she shouldn't even be on anti-thyroid numbers!!!!!


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## Andros (Aug 26, 2009)

greatdanes said:


> I was wondering when someone was going to point that out. IMHOP, with those numbers she shouldn't even be on anti-thyroid numbers!!!!!


Yep!! "It takes a village!" Many eyes, many think tanks! LOL!


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## Rain (Jun 19, 2012)

Well I saw a doc who deals with most of the thyroid patients in my area. Which is only about 20 a year. But he was fantastic, asked loads of questions, told me loads more.
He said in my case, he wouldn't even think about surgery, wouldn't worry too much about eye disease but see the ophthal next week anyway (he thought computer screen paired with being so tired would case strain). Suggested RAI the way to go, looking at my age and the troubles people can have with ATDs, titrating etc.

He's ordered a few more tests along with the usual TSH and FT3/4; UEC, LFTs, thyroglobulin abs, thyroid peroxidase abs, AM cortisol, B12 and ANA.
I'm to be tested again in 4 weeks, and have another appointment with him in December, which gives me enough time to get my levels steady, think about what I want to do, and ask you lovely people for advice 

Thanks for looking and helping xx


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