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#1 Aug. 6, 2012 11:23:43

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 2697
Profile  

OK now what...RAI Seriously???

Just my personal take, as someone who is closing in on 5 years on ATDs and is feeling pretty well.

Since there is no *completely* risk-free treatment, I'm not ready to roll the dice on one of the permanent options. Could I end up feeling *better* after surgery or RAI?

Absolutely. And it sure would be nice to have labs done only once or twice a year, instead of every 2-3 months.

However, I would also need to accept the risks of surgery or the risks of RAI before proceeding with one of those options…and I'm just not there yet.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#2 Aug. 6, 2012 12:31:57

Carito71
Registered: 2012-06-25
Posts: 319
Profile  

OK now what...RAI Seriously???

Harpy
In “my opinion” GD is a “wake up call” that requires one to pay more attention to their health and if one does not change their ways they will have ongoing issues irrespective of what treatment path is taken.

True … I just wish I knew what that was for me. I had a “wake up call” when I was diagnosed with Celiac and I changed so so many things then. I even got a different career so that I could learn more about my body and so that I could reduce my stress levels. I started and continue eating gluten free and yeast free. I could have exercised more I guess (to build up muscle, I'm thin as it is). And also gotten more sleep. Now I can't exercise but as soon as the Dr gives me the go ahead I think I'll start swimming. I have also started sleeping more. But in all honestly, I already live a healthy life … other than the sleeping b/c sometimes I know I didn't get the sleep I needed. I hope the small changes help me …. I don't know what all else I could do to change things.


~ Fellow GD patient diagnosed June 2012 with a non-existent TSH, elevated fT3 and fT4, and a TSI of 4.5. On Methimazole 30mg/day for the first 8 weeks. On Methimazole 10mg/day for the next 6 weeks. On Methimazole 5mg/day for a week and a half. On Methimazole 5mg every 4 days for a month. On Methimazole 2.5mg/day starting Nov 15. Current labs show a normal fT4, a normal TSH, and a TSI of 3.2. Diet: Gluten and yeast free. Love to read and learn. Very interested in the immune part of GD ~

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#3 Aug. 6, 2012 13:02:18

gatorgirly
Registered: 2010-02-23
Posts: 260
Profile  

OK now what...RAI Seriously???

Harpy, I have to agree with Carito. Graves was my first experience with any sort of illness. I was a gymnast and cheerleader and worked out regularly but never overdid it. I ate well and had a speedy metabolism, but it obviously slowed down a bit in my 20's. I didn't drink much and never tried drugs or smoking. I had a stressful job that I hated, but other than that, I lived a responsible, health life. Not everyone who develops Graves did something wrong or unhealthy to deserve it. In fact, the few people I have met who have Graves have no other health issues other than stressful jobs, and there are plenty of people who have stressful jobs, families, lives, etc., who never develop Graves or any health issues. I'm all about taking responsibility for my actions and my health, but Graves reared its ugly head in my life without warning. I have no family history and my immediate family members have all recently tested negative for any thyroid issues.

Graves was a wake up call for me to get out of a crappy relationship and a horrible job, but it forced me to give up my exercise for several months and gave me all sorts of body issues that I hadn't had before, so I don't think it's entirely accurate to say it should be a wake up call for people living unhealthy lives.

Of course, I respect “your opinion” but I respectfully disagree.

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#4 Aug. 6, 2012 14:23:32

Harpy
From: South Coast, NSW, Australia
Registered: 2010-07-19
Posts: 173
Profile  

OK now what...RAI Seriously???

gatorgirly
Of course, I respect “your opinion” but I respectfully disagree.
I'll take that one on the chin.
My apologies,
I did not intend to suggest in any way that one is responsible for the onset of GD, merely that this has revealed a susceptability that one needs to be aware of and adapt to going forward.


I am not a Registered Medical Professional nor am I a Formal Researcher of any description, therefore everything that I say and write is purely my own opinion that is based on my own personal experience and information that I have read, henceforth anything I say or write cannot be construed as advice in any shape or form.
Every individual needs to do their own research so that they can make fully informed decisions about their own future and take full responsibility for the decisions they make.
My partner is the GD patient, I am just her researcher and advocate.
PTU treatment for Graves 7+ years ongoing, Supported by Low Allergenic Paleo Diet, Supplements, Yoga, Meditation, Exercise and Lifestyle changes.
Tests in Jan, March, June, Sept and Dec 2012, normal range for FT3, FT4 and TSH and receptor antibodies only marginally above normal in March, well in range in Dec - Scaling down PTU dose and looking forward to a remission attempt in the near future.

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#5 Aug. 6, 2012 16:32:09

gatorgirly
Registered: 2010-02-23
Posts: 260
Profile  

OK now what...RAI Seriously???

I did not intend to suggest in any way that one is responsible for the onset of GD, merely that this has revealed a susceptability that one needs to be aware of and adapt to going forward.

I agree with this completely. I say it was a wakeup call to get out of a crappy relationship and job situation because it made me realize I wasn't invincible, life is short, I need to be happy, etc. I don't like to live my life in fear of getting cancer or dying in a car crash or falling out of an airplane (I've already intentionally done the latter), but I want to do whatever I can to live a long, healthy, HAPPY life.

Darcy, sorry to hijack your post. Have you made any further decisions? Maybe the conference in October would be a good way for you to talk to other people who are or have been in your exact situation.

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#6 Aug. 7, 2012 09:49:05

Darcy43
From: Michigan
Registered: 2012-04-09
Posts: 125
Profile  

OK now what...RAI Seriously???

No apologies needed gatorgirly. I am glad this post is prompting such dialogue. I am truly learning alot. I too had a very stressful job, divorce, family drama (i.e. the mother from hell), and just internalized everything. But I also was a runner, ate well, was really tiny and didn't consume fatty foods. I believe that extreme stress *may*contribute or aggravate GD, which is why we are warned all the time to stay calm and stress free. Does it cause it? I have no idea, but then again, all cigarette smokers do not get lung cancer either…I think it is highly genetics, a bit lifestyle and then just a roll of the dice. And who knows what we ingest in our meats/dairy/processed crap, etc. We have been dealt funky hand of cards and have to strategize.

Which brings me to my decision: I haven't decided yet. I took new labs last week so I should hear from my endo this week. She said she would call me ASAP if they were horrible results…I guess no news is good news. Still, even as Kimberly stated, it would be nice not to get pricked every 6 weeks, I hate needles…but then again, I am just really scared about the affects of RAI. It is a tough call. TT is not something I want to jump into either because I hate surgery. Having my appendix taken out was simple but I had that feeling…“If I die b4 I wake”…you know what I mean right before they put you under. I cleaned my house from top to bottom, re-wrote my will, etc…yep nerotic…

I will keep yall posted. thanks again for the feedback. I am feeling MUCH better than last week. Still scared, but must better.

I love this board.

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