# Success stories??? Anyone???



## I DClaire (Jul 31, 2011)

My hero (or heroine) is Andros who seems to have fought her way through many years of pain and frustration to find answers that work for her, diet/exercise/medication that apparently allow her to enjoy the quality of life she wants.

Who else has found their way back to feeling energetic, to knowing they have enough stamina to make it through each day, to not being totally absorbed with their physical/mental/emotional symptoms 24/7? I don't like how I feel and I'm weary from worrying about myself all the time and always making excuses to avoid activities I used to love because I am so tired. When do you know you're going to be O.K. OR is this the way it's going to be from now on?

I've been talking to several local friends who have longtime thyroid issues. The ones who still have their thyroid (even if it is totally non-functional) say it's taken years to feel relatively normal - the ones like me who have had their thyroid surgically removed mostly seem to be in the same boat I'm in, every day presents another challenge...once in a great while they may think they've found what works for them but it won't last.

Two (with non-functioning thyroids) have told me their only way to maintain a relatively normal energy level involves lifestyle modification I could never endure - one has not drank ANYTHING other than bottled water for years, would die before she'd eat anything sweet, basically lives on egg whites so she can stay thin (to the point of almost looking anorexic) but she has boundless energy and is taking a huge dose of Synthroid every day.

The other gets up every morning at 3:00 to attend a powerful aerobic class then goes to a fast-paced, demanding job all day then comes home to exercise more and also lives on a restricted diet that never fluctuates.

I'm not like that - I try to live a healthy lifestyle, I'm not overweight, I do not get any aerobic exercise but I do walk twice a day. I eat and drink much more healthy foods than junk foods but I can't follow a rigid diet and honestly don't even want to try.

Does a thyroid patient have to somehow find and maintain a rigid, restricted diet and exercise program before their thyroid medication will work OR is it reasonable to think a person who leads an average life can hope to eventually find success with drugs like Synthroid or Armour? Am I expecting something I'll never attain? At the best, does life ever feel normal again? One lady told me she has more good days than bad days BUT the bad days are really bad and she seldom makes long range plans.

I need inspiration bigtime! I told my endocrinologist the last time I saw her that I'd foolishly thought I would recuperate from having my thyroid removed, find thyroid stability with Synthroid and happily enjoy feeling normal for the rest of my life and her reply was, "That's the way it goes for MOST patients." Is it? Do most people find their way back to normalcy after being diagnosed and treated OR after surgery or loss of their thyroid?

I read so much online - either all/most of the happy camper thyroid patients are off doing something else and not sharing their success stories online OR a lot of folks are having an awfully hard time with all things thyroid.


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## webster2 (May 19, 2011)

Dear IDC, I am sorry you are not feeling as well as you would like to right now.

For the most part, I feel great. I don't look great, yet. I am not able to exercise regularly, yet. I am very chunky....don't like the word fat. Before this lovely experience, I was very thin and very very fit. My hair is weird, but I have hair. The list goes on and on.

Right after the surgery, I was most anxious to get back to my normal. It hasn't happened, yet...maybe it won't be what it was but I do anticipate improvements still to come.

I have most recently come to the realization that it took my body a long time to get in the condition it was in when I was diagnosed with Graves, and cancer. It is most likely going to take some to to get righted around. Now that I am no longer the stark raving brain fogged crying lunatic that consumed most of my waking hours, I can see a light at the end of the tunnel..

A week from today will be 6 months from surgery for me. On Tuesday, I am going to have minor surgery and I am in a hard cast on my right arm. I am right handed, wouldn't you know it! I know if 4 months or 8 months ago these things would have been added to the mix, I would be in an institution.

Give yourself sometime. I do think it takes time. Our Andros says 18 months. I have read one account that says 4 years. Whatever the timeline is, don't wait...enjoy now as much as you can. It is passing us by, even if it isn't perfect....Enjoy. I know it is tough when you have so many other things pulling you in different directions.

I am off to walk my dog. In my normal times, I would be spending the day snowshoeing or fishing on a frozen lake because it is 11 degrees...and no wind!

Please know I keep you & Paul in my prayers. Be happy, my friend!


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## joplin1975 (Jul 21, 2011)

I, too, am really and truly sorry you are having such a difficult time. I wish I knew what to say to make it better...or some helpful words of advice.

I can tell you that I'm doing really, really well. Outside of the residual weight and some minor dietary changes (that I think are changes any person, punky thyroid or not, would make), I'm more or less back to normal.

The thing is...is telling you that really helpful? We're all so very different, I'm hesitant to make comparisons, ya know?

Thinking of you...


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## lainey (Aug 26, 2010)

For my entire life, I have carefully watched my diet, watched the scale, exercised and played sports.

I have always been average height and average weight. When I was a teen, I had an eating disorder--everyone around me seemed so thin, and it was the only way to be thin too.

That said, now that I am middle aged, everyone around me is getting wider while I remain the same--lol, most people say I am thin now--see, I knew the others would catch up.

For most, maintaining your weight and shape requires vigilance. I don't live and extreme lifestyle--I eat mindfully as always, stay as active as possible, and cut back when the numbers creep up, as they like to do, because it's easier to take care of a couple of pounds than it is to try to lose 10.

As for medication, I would say it took me a year before I was regulated and feeling well. From my perspective, I am so much better than what I was for all of the years that I went un-diagnosed, that it really doesn't occur to me to look at what I don't have because it is really nothing compared to what was missing before I was treated.

I find that people in general complain of tiredness, weight gain and the like--it seems to be the common complaint of modern day life--regardless of thyroid status. Normal people should be tired after a busy day.

The most important factor to me is a positive outlook--because things are what you make of them. I function a lot better on thyroid replacement than I ever would without it.

You can and should expect to function normally with out extremes. People do, believe me.


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## Andros (Aug 26, 2009)

I love this thread; keep the comments and sharing of personal experiences coming.

All of you are so precious to me. Stay on the healing pathway. 
This is a 7 day a week project, 365 days a year. That is part of the secret.


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## Octavia (Aug 1, 2011)

I DClaire said:


> I read so much online - either all/most of the happy camper thyroid patients are off doing something else and not sharing their success stories online OR a lot of folks are having an awfully hard time with all things thyroid.


I would say it's a bit of both. The vast majority of thyroid patients are doing very well, and are off doing things they want to do (and not posting their success online)...kind of a silent majority. And there are a lot of folks who are not having such a successful time of it who do seek out help online because they can't find it in the people around them.

I actually feel very good, nearly a year after my surgeries. Honestly, the hardest time I had was the extreme nausea for a few days after my first surgery. Compared to that, much of the rest of this "trip" has been a walk in the park. But that doesn't help you, as Joplin mentioned.

It is so easy to allow ourselves to be consumed by things that aren't going well. The challenge is to keep moving forward, slowly requiring more of ourselves each day to build up to our personal best, whatever that best is at the moment. It may not be the best I was 3 years, 10 years, 20 years ago, but if my best keeps getting a little better each day because I make sure it gets a little better each day, then I have succeeded, and before I know it, I've reached a new level. Sometimes it's a matter of challenging ourselves to do more than we thought we could do that day, in order to build up the stamina we want. Sometimes it's a matter of recognizing and celebrating even the tiniest of successes...anything positive...then we begin to notice more and more positives because we're looking for them, and that helps us to not be consumed by the negatives.

What is ONE THING you can change for the better today to make you feel good?

Hugs... :hugs:


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## I DClaire (Jul 31, 2011)

I didn't have a chance to get online yesterday until rather late last night and was too tired to type! I thought about your question, Octavia, but I really can't think of a reasonable answer. In my mind, I feel like I'm going above and beyond what I feel like doing now. There are things I wish I could change but can't - there are things I believe might help but they're beyond my reach right now. I think perhaps that's why I'm so hung-up on wanting more energy and stamina - the way I view my life, more strength to work harder longer (so I can survive the daily demands of caring for an elderly mother and a husband whose health is a constant concern) is the only tangible thing I believe could help me.

This is not where I ever imagined I'd be at this point in my life. I almost grieve for the way my life used to be before it was touched by so much heartache, disappointment and frustration and such a sense of losing myself. There are only so many hours in a day and every minute I lose to the miserable lethargic droopy-ness I associate with my thyroid problems seems like a major loss.

You've shared some really good ideas and I'll definitely keep them in mind. I woke-up at 4:00 this morning and couldn't go back to sleep pondering what you had asked. :anim_55::anim_55:  I'm never one to ignore any possible way to improve my life - I'll ordinarily take something and just about think it to death if it seems to help someone else!

I feel like the bumpy road through Thyroidtown has all but worn the wheels off the bus! I want so desperately to feel better but I'm not sure if what I am so fixated on finding even exists.

I love and appreciate you for caring!!


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## Andros (Aug 26, 2009)

I DClaire said:


> I didn't have a chance to get online yesterday until rather late last night and was too tired to type! I thought about your question, Octavia, but I really can't think of a reasonable answer. In my mind, I feel like I'm going above and beyond what I feel like doing now. There are things I wish I could change but can't - there are things I believe might help but they're beyond my reach right now. I think perhaps that's why I'm so hung-up on wanting more energy and stamina - the way I view my life, more strength to work harder longer (so I can survive the daily demands of caring for an elderly mother and a husband whose health is a constant concern) is the only tangible thing I believe could help me.
> 
> This is not where I ever imagined I'd be at this point in my life. I almost grieve for the way my life used to be before it was touched by so much heartache, disappointment and frustration and such a sense of losing myself. There are only so many hours in a day and every minute I lose to the miserable lethargic droopy-ness I associate with my thyroid problems seems like a major loss.
> 
> ...


I'm a great hand-holder!

And this little fellow is a great window licker!


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## nikkij0814 (Jul 13, 2011)

I think you might not see many success stories here because it's more of a forum where most of the people who gravitate toward it are seeking answers and struggling. I know that I visited the site every day when I was a wreck. Now I seem to just stop by occasionally to poke around.

I had my thyroid surgically removed in 05, and was overdosed by my old doctor on Synthroid. It took me basically losing my mind and hardly being able to function to figure it out. Then, once we figured out the problem, it took about 9 months to straighten out. Around the middle of it I really wondered if it will ever go away. Remember, a major symptom of depression is hopelessness... the feeling that you'll never feel any differently.

I can honestly say that I've felt much more like myself and as though I have a normal amount of focus and energy, which I had lost for about a year. It was awful! And, doctors think that if your numbers are "close" you should feel okay and just a little sleepy. No-sir-ee. Once my TSH got to 1.8 I noticed a considerable difference. We're shooting for 1.0 TSH, but I've only been on this new dose about 7 weeks.

It sucks ... I totally know. It just sucks. It sounds like you've done a bit of research, you're your best advocate in the doctor's office. Good luck, and keep remembering even the smallest victories or improvements.


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## nikkij0814 (Jul 13, 2011)

I think you might not see many success stories here because it's more of a forum where most of the people who gravitate toward it are seeking answers and struggling. I know that I visited the site every day when I was a wreck. Now I seem to just stop by occasionally to poke around.

I had my thyroid surgically removed in 05, and was overdosed by my old doctor on Synthroid. It took me basically losing my mind and hardly being able to function to figure it out. Then, once we figured out the problem, it took about 9 months to straighten out. Around the middle of it I really wondered if it will ever go away. Remember, a major symptom of depression is hopelessness... the feeling that you'll never feel any differently.

I can honestly say that I've felt much more like myself and as though I have a normal amount of focus and energy, which I had lost for about a year. It was awful! And, doctors think that if your numbers are "close" you should feel okay and just a little sleepy. No-sir-ee. Once my TSH got to 1.8 I noticed a considerable difference. We're shooting for 1.0 TSH, but I've only been on this new dose about 7 weeks.

It sucks ... I totally know. It just sucks. It sounds like you've done a bit of research, you're your best advocate in the doctor's office. Good luck, and keep remembering even the smallest victories or improvements.


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## scottyg354 (Jun 13, 2011)

I DClaire said:


> My hero (or heroine) is Andros who seems to have fought her way through many years of pain and frustration to find answers that work for her, diet/exercise/medication that apparently allow her to enjoy the quality of life she wants.
> 
> Who else has found their way back to feeling energetic, to knowing they have enough stamina to make it through each day, to not being totally absorbed with their physical/mental/emotional symptoms 24/7? I don't like how I feel and I'm weary from worrying about myself all the time and always making excuses to avoid activities I used to love because I am so tired. When do you know you're going to be O.K. OR is this the way it's going to be from now on?
> 
> ...


Your not alone. I watch my mom not even look sick from her thyroid and it drives me nuts. Only time I have ever seen it affect her was when there was a dosing mishap, which seems to happen a lot at the pharmacies around here. It took her a year to get back to normal.

I've spent years feeling horrible, I probably could have had this problem solved 6-7 years ago, but like a stubborn young guy I blew the doctor off, and I suffered pretty bad. Fatigue, Weight Gain, Abdominal Pain's, Constipation, Depression, Anxiety, all the symptoms. The said part about being a guy and having this problem is that every thinks your supposed to be really strong and tough and push through this crap without making it known that it's bothering you. I do believe there is light at the end of the tunnel though. I've watch my mom, my grandmother's and my grandfather all be hypo and live productive lifes all on synthroid alone.

It just blows my mind how some people with a subclinical TSH level can feel worse sometimes than somone with their TSH in the 30's+.

I recently convinced my doc to try some T3 if I don't start feeling better which is a positive in my eyes.

I have been doing somewhat better. Today has been a rough one, I'm tired, stiff, bloated and it really sucks. I was just upped to .175 of Synthroid last week so I am assuming I am still adjusting as the adjustment perions takes a while.


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## Octavia (Aug 1, 2011)

scottyg354 said:


> It just blows my mind how some people with a subclinical TSH level can feel worse sometimes than somone with their TSH in the 30's+.


I agree - it's fascinating how different we can feel with the same TSH level, and how similar we can feel with very different TSH levels. Such a wide range of feelings and levels...


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## Weeble (Jun 22, 2011)

IDClaire...
I'm so sorry you're struggling. I know how frustrating and discouraging it is. I have been there, too.

I had my 3 month post surgery appt in October had bloodwork done. Doc was pleased with the numbers and didn't want to make any changes to the Synthroid dose. (112mcg) I told her that if this was as good as I was going to feel, I just wish I'd left my cancerous thyroid alone. She thought I was kidding.

I just felt awful....much worse than before surgery. I had times when I felt pretty good (I was waterskiing in Sept) but mostly I was tired, moody, and so foggy-headed I could barely put words together to make a sentence. I was having episodes of high blood pressure and heart palps...not sleeping well and having bad dreams.

She asked me to try to be patient....try some stress relieving and relaxation techniques and they would re-check in January.

Ok. Whatever.....I didn't think she was being helpful and I wasn't convinced.

But I started walking more and paying more attention to how I was breathing. I didn't make any drastic changes, but tweaked my eating some.

Lo and behold! I suddenly realized around the first of the year that I wasn't feeling so bad. I haven't had any more anxiety attacks and I was sleeping better. I'm thinking more clearly and even beginning to like people again. 
(yeah, I pretty much hated everyone for a while) 

Re-did my bloodwork last week and it all looks pretty much like it did in October:
TSH 0.13 (.4-4.5) Low, but that seems to be where they like it for cancer patients
T-4, Free 1.4 (.8-1.8)
T-3, Free 3.2 (2.3-4.2)
The thyroglobulin number is low 0.2 (2.0-35.0) but that's a good indicator that the thyroid cells are not growing back (yay)

So, my point is, the numbers haven't changed, but how I feel has. I think maybe it just takes some time for the body to settle down after such trauma. 
Someone told me it would take 8 months to a year....and at the time, I thought that seems totally unreasonable. But now that I'm 6 months post-op and feeling the way I do, it make sense. I have a ways to go, but I'm feeling hopeful - I think I might be on to "it".
I just needed to be patient and make a few changes.

I wish you the best and hope you find a path to feeling well.
Take care.

Weeble


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