[elf]

in reply to: Excellerated Graves Disease? #1074551

September 2005 – went to bed looking normal. Woke up the next morning with a goiter 6" x 2" x 1". Diagnosed with Graves the same month. Put on PTU, it helped to suppress the thyroid levels.

November 2005 – one eyelid started puffing up.

December 2005 – RAI.

The eyes inflamed (sady, gritty, weeping) – from January 2006 to December 2006. Slowly, not noticeably, they were protruding. Pictures taken on Dec. 2005 and Dec. 2006 – two different people.

Jan 2007 – present – no eye change, feeling healthy. Contemplating an orbital decompression surgery.

Your eyes will settle in between 6 and 18 months. There is a stage called "hot" stage, you are in it, you will need to wait it out. The eye disease will burn itself out eventually.

[elf]

in reply to: Surgery, Change of heart :( #1074556

When my GP got my tests results that pointed to Graves (up to that point, she and I hoped that it was just thyroditis), she pulled her chair up to mine, stuck her face very close to mine, and said: "I strongly recommed RAI. You will have to take a hormone supplement for the rest of your life, but it’s a minor thing. Hormone is not a medication." You need to know what a generally hands-off this doctor is, to realize how unusual this gesture was for her to do.

I went home and researched about RAI, read all the scary stories of people whose RAI went badly.

Still, still, – my gut feeling was telling me that I preferred RAI. I read the remission stories of people on ATDs, and they scared the hell out of me, because of those relapses after periods of remission. I wanted to have another baby, and it was written everywhere that Graves flares up after giving birth. I had this vision of my eyes popping out after giving birth. I wanted a permanent solution, without living on eggshells, fearing remission, or crazy post-partum Graves. I didn’t want to cut myself open as in a surgery.

Researching on Internet, I saw that younger people took RAI much better than middle-age people. There was a report of post-RAI pregnancies (some as soon as 1 month after RAI) – the rate of complications in newborns was the same as in the general population. I don’t encourage anyone to have babies until a year after RAI, but that was encouraging news.

My endo wasn’t as personalbe as my GP, he was stuffing my hands with RAI pumphlets, but not actually saying what he recommended.

I would strongly encourage you to do what feels right for you, because nothing is worse than having regrets for the rest of your life.

[elf]

in reply to: Success rates for treatments #1074625

Hi Lynne –

I am a happy RAI case ” title=”Smile” /> As others said, there is not need for people like me (with no problems) to be getting on boards. The only reason I’m visiting is that I’m contemplating an eye surgery, so I’m on a lookout for that info.

I had RAI 3 years ago, my levels were eurothyroid for 5 months afterwards (no pills of any kind). My tests showed hypo 5 months later, but I personally didn’t feel any effect of going hypo. Started Synthroid and am on the very same dose ever since.

RAI freed me from the very same problems that people come here to look for help. I feel healthy for the last two years (in the immediate year after RAI, I had inflammed eyes, but that was all).

[elf]

in reply to: I am new here #1074723

bn605 – good luck for Thursday! I gained about 10 lbs in the first year after RAI, that was about what I had lost. I had little kids though and didn’t look after myself too much, so I gained 20 lbs more in the 2 years after that. I can’t stress enough, it’s all in your hands. Watching your portions and excersising should keep the weight away, as in any other healthy person.

[elf]

in reply to: Eye Problems #1074745

I would think the problems you listed ARE Graves eyes symptoms. As you may know, the protrusion does not affect all Graves ophtalmopathy sufferers, it’s just one of the possible symptoms. I had eye fatique long before I was diagnosed with Graves, though I looked normal. I wanted to close my eyes and give them rest in the afternoon (just when everyone went to gyms and to parties). When there were more stress, the eyes got more easily tired. Fluorescent lights in stores and offices irritated my eyes.

Double vision and drooping lids are symptoms of TED, too.

[elf]

in reply to: Questions I Have #1074825

Mickey – I replied with my post-RAI experience in more detail replying to your thread of what happens after RAI, if you haven’t seen it yet. – It just has more detail (I had RAI, like you, on Dec.13 but in 2005). Glad to hear that your symptoms keep improving.

[elf]

in reply to: Questions I Have #1074823

It’s slightly unusual to be on PTU 4 months after RAI. Do your tests show hyper?

After my RAI 3 years ago (I was also 41 then), I wasn’t taking anything for 5 months (the tests were within normal ranges for 5 months), the tests showed hypo 5 months after, I started taking Synthroid. Looking back, the whole year after RAI was a blur. Just because I was listening to myself, then there was a hyper spike 3 months after RAI (when the thyroid was finally dying off), – and the main reason, my eyes were bothering me (scratchy, teary). After a year, the eyes settled and it seemed like everything cleared up. I got back to my pre-Graves feeling of general well-being. This was my experience.

As for Why GD happened, I’ve almost resigned to figure out. No history in my family, neither. Was diagnosed after a stressful event 3 years ago, but looking back, my symptoms and behavior were slightly pointing to Graves, since my youth. I might have had pre-disposition all my life, because I never could handle stressess, they caused much more distress in me than in *normal* people. Basically a bunch of stresses pre-cipitated clinical Graves.

Please keep us updated,
elf

[elf]

in reply to: hearing problem/totally frustrated #1074852

I have a familial hearing loss (that runs in my family). I was wondering if that was connected to Graves. Nobody in my family had Graves or other thyroid problems, but thinking back I think my family might have had pre-disposition (carrying Graves antibodies). My grandma had what you’d call Graves behavior – easily irritated, suspicious, rage-prone. She had her hearing going down in her 50s. My dad (not her son), I think, kept Graves at bay by having a sunny cheerful attitude all his life. He started losing hearing at around 45.

My hearing went slightly down in my 30s (just when my eyes started behaving funky, but no clinical Graves yet). I was diagnosed Graves at 41, had RAI at 41, and now at 45 I hear about 60%. When it’s extremely important that I hear, I wear a sound amplifier (much cheaper than hearing aid). My right ear is almost completely gone, and the left one is functioning at about 80%. I have nothing against using hearing aids when time comes.

[elf]

in reply to: Lost Post – Question About Causal Link #1075228

I’ve been harbouring a similar thought about my situation. I never mentioned it to doctors, because I know it would be categorized in the "who knows" category, something that happened 30 years ago.

I consumed a lot of –iodine– medication when I was 9 years old. In those times, a school nurse would check our thyroids about once a year and give a small sweet pill (iodine). It happens that my best friend’s mom was the nurse, and when coming to play to her house, we’d find these bottles of pills laying around, and knowing they were sugary-sweet, we’d eat whole bottles at a time.

In my 30s, I started having slight pain behind my eyes, and after I turned 35, I could feel my thyroid with fingers (it was a bit enlarged). I meant to ask a dr. about it, but never did. My eyes (which I never connected with thyroid) were behaving funky when I was under stress, with not enough sleep (which was a lot in the dot-com years). Again, never knew where to even start to suspect anything.

Two late pregnancies around 40 years old finally kicked my thyroid out of whack, from sub-clinical state to clinical Graves (diagnosed at 41).

So the question about those bottles of iodine pills will always be hanging in the air for me, whether they made me off-balance and more susceptible to the impact of stresses -? My childhood friend doesn’t have Graves visibly, but I don’t know anything else about her (just saw her picture).

With this disease (Graves) you learn with time that some questions will never be answered. "Who knows". The good thing is – I’m better now, I’ve learned a lot, I’m waiting for my eye operation, and just taking life in the way it is.

[elf]

in reply to: Graves and Stomach Issues? #1074896

kallikat – I had RAI in Dec. 2005, and the thyroid was gone 5 months later (I went hypo). No, my thyroid didn’t wake up ever again.

[elf]

in reply to: Orbital Decompression surgery stories #1074891

Thank you, Dianne. I understand the necessity of waiting for the eyes to stop movement, or some call it "waiting for the cold phase", or "settling". I had RAI 3 years ago, (diagnosed 3 months before RAI). For the first year after RAI I has those uncomfortable feelings in my eyes, the process was under way, so I didn’t contemplate any surgical involvement. For the last 2 year, my eyes have been settled, no uncomfort, no change. I think (and my orbital surgeon thinks) the surgery is OK now, I don’t think my eyes are going to get better (if you’ve seen pictures of Oriental ladies with Graves that are out there, that’s what I look like). I’m glad to hear that the self-esteem issues are greatly helped after OD. And the fact that the surgery techniques have evolved and the invasion is now very minimal, is great. I’m curious now if I will feel less pressure afterwards – I’m not aware if I have it now, as well.

[elf]

in reply to: Graves and Stomach Issues? #1074894

Just wanted to give you a ((((hug)))). I’m reading about the conditions you mentioned, I didn’t know about them. What stress does to us.

[elf]

in reply to: Touch #1074950

Kam – if what you mean to say is that your wife says hostile things to you – that is most likely Graves. Or part of it may be that she’s unhappy somehow, but the Graves makes people very irrational. People with Graves may be realizing, in the moment, that they are being psycotic, but they can’t do much about it. I’ve said a lot of things to my husband, I’ve thrown things at him – before I had RAI. It takes almost a saint to accept a Graves person, and help her.

If your wife’s disease is under control, either with meds, or she had RAI or thyroid surgery – then she’s vastly a normal adult, and then it’s a different story.

[elf]

in reply to: Surgery #1074926

Oh, maybe the surgery route is chosen because of your youth – some in the medical community consider RAI not suitable for young people, though it’s a murky world of conflicting researches. Plenty of researches prove no child-bearing ability or baby affected, even when pregnancy started 1 to 6 months after RAI. But the precaution still rules sometimes.

[elf]

in reply to: Surgery #1074925

I still don’t understand why you are given just one and only choice. Unusual choice for North America to start with. Keep asking questions until you get answers, even if you need to grab the doctor by lapels to sqeeeze an answer. You have the right to completely understand what is going on with you, and why a certain route is suggested to you (or in your case forced on you).

These side effects or dangers are the reasons I was never comfortable with surgery. Not even speaking about the fact of letting to slice yourself open. I had RAI, you walk out of the hospital 45 minutes later, and the end effect is the same – thyroid removal.

[Author]

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