[elf]

in reply to: EYES #1068377

Hi hyperm,

I would say generally, for people with Graves, anything "different" happening to the eyes, is most likely connected with Graves, or should be assumed connected with Graves, and should be checked by an ophtalmologist trained in TED.

What you are describing, is a slight reduction in vision that should happen with age (I’m 45 and just recently started having troubles finding a needle’s ear, and can read one line less on the visual test). You are way too young to start experiencing this.

Generally, they say it’s nice to have a baseline of your eyes done when TED is non-existent yet.

Take care,
elf

[elf]

in reply to: 6 weeks post RAI and all better?!? #1068385

Good news! I had all three normal – TSH, FT3 and FT4, for 5 months after RAI. But, the inevitable happened, and my TSH showed hypo after 5 months. Your dosage of I131 was lower, so it would be interesting to see if they have managed to keep you eurothyroid in the long run.

Very nice to hear that you feel well though, and that you can run ” title=”Smile” />

[elf]

in reply to: Graves Eye Disease #1075502

Lyn, what you are seeing, IS the double vision. It IS caused by your thyroid eye problems (not your age, ha). Your slightly bulging eye must have swollen muscles pushing your eye just slightly so out of line. This happens to people with TED, before any surgeries, or happens as a result of a surgery. I had this double vision for a while after my recent orbital decompression on one eye, – two lines of text, two TVs, and closing one eye to see single vision.

[elf]

in reply to: What happens after RAI? #1068452

4 years post-RAI, I’m weighing 20 lbs more than before Graves. But, I have not exercised for all these 4 years. Still planning to start exercising. Ha. I’m in my 40s, too.

You will always have Graves (they say). Well, I don’t notice it anymore, there is nothing to notice. I am not hyper, and my thyroid supplement keeps my levels normal. I feel normal, so when I say "I have GD", I don’t really know what exactly that means. They talk about antibodies, but if the antibodies are not acting up, (because there’s no thyroid), then there is no manifestations.

How long your body will take to get back to normal – there will be a time of a "thyroid dump" after RAI, (to me it happened 3 months after RAI, for others earlier), and after that, your body will get back to normal pretty much.

The only other thing that may be bothersome, is your eyes. If you have Thyroid Eye Disease, it will run its own course, independently of your Graves. So in that sense, I had problems with my eyes for a year after RAI, but my body felt healthy starting about 6 months after RAI.

[elf]

in reply to: First Doctor appoint today since RAI 3 weeks ago #1068433

So you don’t have any PTU after RAI? That would be the second time I’m reading of this protocol?

I had to have 1/2 of my pre-RAI dose of PTU for a week or two after RAI (don’t remember exactly). That was the protocol 4 years ago. Kind of makes sense to counter all that thyroid hormone dump that’s definitely going to be happening after RAI.

[elf]

in reply to: Would you switch docs? #1068521

The only time I waited for 2 hours, was for my oculoplastic surgeon, – who covers ALL OF CANADA EAST OF QUEBEC. You cannot argue with that, and I let it go since I like her. Those 2 hours were a torture, I feel ya.

Otherwise, there are many more Endos to be enduring this kids of "care". I was having a primary doc with this over-booking because she worked 3 hours a day, 9-12, wanted to be home when her kids came from school. I don’t know why I mopped with her for 6 years. Just changed a Dr, and it’s like a breath of fresh air. He works till 7pm (!) and fixed a couple of our problems in a heartbeat. The previous Dr couldn’t even diagnose what they were.

In short, if you see and feel in your gut, something is wrong, – it is. Trust your gut.

[elf]

in reply to: 4 weeks since RAI update #1068665

I had 10 mci, 4 years ago, and thought that was the smallest dose… Apparently they keep fine-tuning the dosage. With my dose, it took 5 months for me to go hypo. Theoretically, it could take a bit longer for you… Could be too early to be thinking about a second RAI.

[elf]

in reply to: At a crossroad, want your opinion, please. #1068624

Unlike the majority of people, after reading about treatments of Graves, I was NOT scared of the permanency of some treatments, but I was scared of living in hopes for years and being pulled-pushed by the hypo-hyper see-saw.

I was diagnosed at about your age, 41. Got RAI a few months after my diagnosis. That was 4 years ago. The best thing I did to my Graves.

[elf]

in reply to: RAI time frame for worsening from die off? #1069009

My worst (die-off) time came 3 months after RAI… I actually hadn’t felt too bad before that. Right after RAI you are on the half of your pre-RAI PTU dose, right?? I don’t remember for how long I was on the half-dose, a few weeks. Then wasn’t taking anything, and my tests were within norms.

3 months after, increased anxiety, slight hand trembling, more watery eyes… Then I knew that was the last ditch effort of my thyroid. It was over in a week.

Turned hypo still 2 months after that, that is, 5 months after RAI.

Graves is a disease that requires a lot of waiting. I did OD on one eye a month ago and came here 4 days after my OD, asking just when my eye would go in. Waiting still.

[elf]

in reply to: Orbital Decompression – when visible results? #1069698

The internal swelling!!!! smacks her head

Of course! How did I not think of it! Thanks for this piece of info!

[elf]

in reply to: Question for 12 month post RAI/ Surgery people #1072644

Huh? Mockery?

Lots of people feel fine after RAI, and carry on with their lives, not coming to boards, – and that fact will skew your quest for answers, on these boards. That was my point. You will hear the same from our moderators, but not from actual post-RAI people, because they have no reason to be here.

[elf]

in reply to: Question for 12 month post RAI/ Surgery people #1072642

genuinruby wrote: I think I may have asked my question the wrong group of people. I expected more responses. How can one know if RAI is the "answer" if there are not an appropriate balance of success stories?

Because WHY WOULD success stories be hanging around here?

I myself don’t know sometimes why I’m visiting Graves’ boards LOL. I feel pretty healthy, in fact, I need to go to my gym right now instead of sitting at the computer.

[elf]

in reply to: article in UK paper regarding USA health insurance #1072622

hyperm – the link shows just the image of a man, not the actual article. Or maybe the server senses that I’m not in UK, and is not showing the article -?

[elf]

in reply to: Bilateral Orbital Decompression Surgery – Need Advice! #1072627

I haven’t had OD yet (though dreaming of it!) There is a thread here called "Orbital Decompression surgery" with a link to a YouTube slide show of Patrick who did the bilateral, part I shows his first 20+ days, part II shows what happened over 4 months past.

I’m sure you will be able to see before your baby will start walking.

I used to have fear of OD, but now the fears of the mirror and of the camera, out-weigh the fear of OD. Think of it this way: your kids will be growing, with their birthdays and birthday cakes, and Christmas trees, and there would be no mommy otherwise in the pictures because she’d be scared of the camera! It’s a perfect timing for your OD, so that your kids will have pics together with their mom.

[elf]

in reply to: Question for 12 month post RAI/ Surgery people #1072637

Hi Ruby,

I have 3.5 years gone since my RAI. 12 months after RAI, discounting the eyes, I definitely felt better physically and emotionally. Physically, I felt healthy, with no shaking or heart problems. Emotionally, I was much less liable unlike before RAI. My BMI went from 21.6 to 23.3 (in 12 months). I also didn’t exersise in that year.

PS: Noticed "for your age". Looking at the age – BMI correspondence, I went from 12th percentile to 23rd percentile for my age in that year.

[Author]

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