[CMoore124 August 3, 2012 at 9:22 pm Post count: 9]

#1173301

I was diagnosed with graves back in 1997. In 2005 after it going hyper for a third time, I reluctantly went on PTU (first tried Tapazole but was allergic) I as severely hyper with every possible symptom both physical and mental. I stayed on PTU for 4 years. At the end of that time I was staying normal for at least 2 years and dr decided to take me off after PTU had a warning on it. I had antibodies rechecked and miraculously they were almost zero. Dr said chance of remission was high. That was October 2010. I’ve been in remission since.

My endo was awesome about not pushing things, and he believed in stress management, healthy living etc. he believed remission was possible. (well known and endo for MANY years) he recently retired and the new Endos I’ve followed up suck. They push RAI and tell me not to get my hopes up for long term remission. I refuse to believe it can’t be possible.

Don’t give up hope and don’t let anyone push you into something your not ready for. You have to do what’s best for you, wether it be surgery or RAI but it should be your decision and you should be comfortable with it

[Harpy August 4, 2012 at 3:33 pm Post count: 184]

#1173302

Sorry you are being pushed into making a decision that you are not ready to make.
My partner also had the same sort of pressure after 12 months on PTU, but she was firm in her belief she could kick this and her and the Endo “agreed to disagree” on that point. She continued on PTU, 5 yrs+ now, and when her TSH returned this year the Endo admitted that “they lost the bet on that one”, she is progressing fine, feels great, has no symptoms and is looking forward to remission.
Individuals that are going to have an adverse liver reaction to ATD’s generally see this within 6 weeks of starting med’s otherwise most seem to have no adverse effects from the ATD’s, even with long term use.
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.
I hope you can find a resolution that is appropriate to your needs.

[Bobbi August 5, 2012 at 4:27 pm Post count: 1324]

#1173303

I have been thinking about this topic — long-term use of the ATDs — a lot this week. Yes, in other countries they will allow their patients to use them long term. And long-term generally means really a lot of years. I’ve seen reports of people being on the ATDs as long as 18 years…in Japan, I think. Harpy’s partner has been on PTU for five years now? So, what are we talking about then? Long years, without remissions, on drugs that are known to be hard on the liver. Contrast this to long years spent on replacement hormone which is a substance naturally used by our bodies….i.e. no liver problems. Add to this, that as we age, our livers become less efficient at processing out toxins (the by-products of the metabolism of drugs like our ATDs) and side effects start to increase.

I do understand the concept of every person making their own decisions. But I don’t think we should criticize our doctors when they suggest an option that they believe they have evidence has fewer adverse consequences in the long term.

[Harpy August 5, 2012 at 6:19 pm Post count: 184]

#1173304

All three treatment options carry their own set of potential risks and rewards. With regards to ATD’s the risks are as you say potential liver issues, but these are most likely to manifest in the first 3 months of treatment and are more often associated with high dose treatment and MMi is a lower risk than PTU.
While the reward is potential remission with a fully functioning thyroid gland and no need for ongoing medication/hormone supplementation to maintain normal body functions, and if they should have a relapse they still have all three options open to them.
With regards to doctors & criticism, like anyone with a firm position on anything, they should be able to produce a raft of data to refute the opposing view, failure to do this can only indicate a lack of knowledge or time, both of which in “my opinion” are an indication of poor medical care with a focus on the welfare of the system rather than that of the patient.
A good doctor will have the confidence of their patient and will take the time to discuss, inform, reassure & support them through this difficult time in their healing journey and the need for internet support/discussion groups would fade away into history.
So to Darcy43 and all GD patients I hope you find a healing path appropriate to your needs, there are rarely any easy choices in life usually they lie somewhere between hard & not so hard. Everyone will apply different weightings to priorities in their life and this will then govern why they choose A over B while others will go the other way, both are appropriate with respect to the individual, no matter what ensure it is your choice and you are prepared to take ownership & responsibility for it.

[Darcy43 August 6, 2012 at 11:10 am Post count: 125]

#1173305

thanks Harpy

I am taking my time and not being forced into a “one size fits all” decision. Although we are all made of flesh, bone and blood, we are different. What works for one may not work for another. All three treatments do have risk and I need to just chose the lesser of the evils if you will. Getting will is not something that I think is evil btw, but it just depends on the person and what they can live with.

I am glad there are so many success stories on all treatments, whether long term ATD, RAI and TT. I will continue to pray, research and communicate with my endo and most importantly STAY CALM and wait for my next two lab results. Whether we hit a homerun or strike out eventually we have to swing that bat, so I know I will have to make a decision soon.

I just want to make a fully informed one.

Thanks for all the encouraging responses EVERYONE.

[KimberlyOnline Facilitator August 6, 2012 at 11:23 am Post count: 4291]

#1173306

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.

[Carito71 August 6, 2012 at 12:31 pm Post count: 333]

#1173307

Harpy wrote:

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.

[gatorgirly August 6, 2012 at 1:02 pm Post count: 326]

#1173308

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.

[Harpy August 6, 2012 at 2:23 pm Post count: 184]

#1173309

gatorgirly wrote:

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.

[gatorgirly August 6, 2012 at 4:32 pm Post count: 326]

#1173310

Quote:

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.

[Darcy43 August 7, 2012 at 9:49 am Post count: 125]

#1173311

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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