This Is My Story - Personal Stories - Living with Graves Disease

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This Is My Story

ted graves disease rai surgury

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#1 babyluv000

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Posted 07 November 2012 - 10:49 AM

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This is my ongoing story...
I was diagnosed with Graves Disease with noticable TED back in August 2012. It is now Nov and I am still suffering greatly .
I was unknowingly having symptoms for months. The red flag for me was the tremors which let me to the dr in August.
When you read the list of symptoms....thats was me.... yes all of them. So I went to the endocrinologis and he immediately diagnosed me with Graves Disease just by looking at me. Yes I have the bulging eyes. He then did lab work and it confirmed it.
My first labs were the following
TSH <0.006 0.450 - 4.500 uIU/mL THYROID STIM IMMUNOGLOBULIN 358 0 - 139


THYROGLOBULIN, QN. 143.0 0.5 - 55.0 ng/mL THYROID ANTITHYROGLOBULIN AB 46 0 - 40 IU/mL T4,FREE(DIRECT) 5.88 0.82 - 1.77 ng/dL


This was also with a noticable goiter.
We discussed my options regarding RAI and medicine. With some research and my severe symptoms I elected for RAI. The difference between the RAI and taking medicine...is I wanted my goiter to go away. I had seen pictures on the web of huge goiters and I did not want that. I wanted my obvious one to go away. I wanted to feel better sooner than going through the long process of taking medications. I seeked a 2nd opinion that agreed that RAI would offer the most benefit. I was put on steroids to "protect my eyes" from the RAI.

I had the RAI August 28th. I had no affects from it. I stayed away from family and friends for 48 hours and returned to work. However, I went through some major stress that night. Did the stress/emotional stress have have something to do with my recovery...just maybe.

I seeked out an eye dr that specialized in TED. She became very concerned about my severe TED. A ct scan confirmed her suspicsion that there was a lot of swelling behind my eyes. The nerves in my eye are being compromised and that she needed to keep a close eye on me...

Research has shown and dr told me....RAI is 95% effective...however 5% have had to have a repeat dose.
6 weeks after RAI to the dr for my checkup...he tells me.......you are still extremely hyper...again labs confirm...
T4,FREE(DIRECT) 5.23 0.82 - 1.77 ng/dL TSH <0.006 0.450 - 4.500 uIU/mL


Someone had to be in the 5% correct? Well that was me. He adviced me that a 2nd doce of RAI was needed. However he put me on methimazole to help lower my levels. I had a bad allergice reaction to that...so not an option any more.

We are now in Nov. a week and a half ago I went in for repeat RAI. However, they could not do the thyoid uptake scan because I was still radioactive from the dose Aug 28th. They rescheduled it for Nov 19th & 20th.

Went to they eye dr...my eyes have gotten progressivly worse and orbital decompressin is needed (just my left is urgent). I am in a lot of panic. My endocronologist will not clear me to surgery because my blood pressure is dangoursly high.

I am still in the same condition today that I was 3 months ago if not slightly worse. My endocronologist told me a few weeks ago surgery was not an option because my levels were to high.
However, now that I am in urgent need for eye surgery....blood pressure to high, there is a very high probability the RAI will make my eyes worse....
Endocronologist is now considering surgury to remove my thyroid. My situation changes by the day.....None of these changes are the good ones....
May be facing a double surgery 1) to remove pressure on my eye 2) removal of they thryroid.
Either way....something must change. Blood pressure medicine is causing migraines. I do not regret having RAI. There were no serious side effects. I just wish it would have worked and I would not be facing the issues I am today. I have faith and confidence in my doctors that they will do the right thing and what is best for me. I realize my symptoms and treatment may not be the same for everyone...but they have been the cards that I have been dealt and trying to make the best of it.

I will keep check back once I know what is next. I just want to feel better.


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#2 Misty

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Posted 07 November 2012 - 01:08 PM

Hi and welcome.

It sounds like the most critical thing right now is to get your thyroid levels under control while the rai works (6 weeks is too soon to tell as it takes the thyroid longer than that to die off). PTU is the other antithyroid med, and your doctor should start you on that.

Also, there are many different blood pressure medicines, and if the one you;re on gives you migraines, you should be switched to a different one.

Best wishes,
Yvonne, remission since 2005

#3 babyluv000

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Posted 09 November 2012 - 01:23 PM

RAI is no longer an option. I have been told it is to dangerous for my eyes. I am now in the need of OD for both eyes urgently. My eye sight is dwindely fast. I have coler desaturation in my left eye now. I had a reation to the PTU drugs (methimazole). I believe most of them are all in the same category so that will not work either at this point.
Surgery has been postponed from today since my dr does not think I am stable enough for surgery. I am very worried.
I seen a neurologist yesterday and she feels that my blood pressure and the steroids should be helping my migraines. Biggest help again to get my thyroid under control.
I am limbo and miserable.

Thanks

#4 Misty

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Posted 09 November 2012 - 01:50 PM

Hi,

My endocrinologist assured my that PTU is quite different from methimazole. When I started to itch on methimazole (actually this was likely because the dose needed reducing) my endocrinologist switched me to PTU, which I was able to take with no problem. This should be well known by your doctor--and you would feel much better taking an antithyroid med to get your symptoms under control.

Having had rai increases antibody production, plus the thyroid gives off spurts of thyroid hormone as the radiation begins to kill it off, which takes several months. You need to be on PTU during this time. If your endoctinologist won't work with you, you will need to find a doctor who will.

Best wishes,
Yvonne, remission since 2005

#5 Pinkbird

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Posted 08 March 2013 - 01:11 PM

Hi

New to the forum and just wanted to say how nice it is to meet someone else in that 5%, though I lasted a bit longer than you.  I had RAI in April 2010 and we are now looking at whether surgery is required. My eyes have never been as bad as you but I am worried about the increased pressure I can feel this time around. I really hope that you have managed to move your journey forward in a positive direction.  There's not often much of that with Graves I know.  Best wishes







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