[Ski]

#1062708

You’ve been through a lot, that’s true, but first let me say that you will ultimately find relief, and you will someday return to something that feels like normal. It takes time, but the healing does come. When thyroid hormone levels normalize and remain stable, our body only then begins to heal, so it takes a LOT longer than anyone wants it to, but there it is. As for the eye issues, once you’ve come into the cold phase, you can explore surgical correction of the condition that remains ~ and it is not out of vanity, it is not cosmetic surgery. It’s treatment.

As for what to tell family and friends while you’re feeling crummy ~ I think we’ve all struggled with this, at some level. It seems as if Graves’ hits only the Type A People Who Try To Do All Things For Everyone. I completely understand!

One thing you can do is consciously schedule less than you used to ~ and here’s the really important part: do more of the things that heal you and bring you joy, and do less of the things that drain you and do not bring you any satisfaction. If you stick with those guidelines, then you can usually conserve your energy and maintain the schedule you’ve made for yourself without having to back out of things at the last minute. It may mean you see people less frequently, it may mean you can’t attend every function that comes up. You must forgive yourself for that, because it is essential for your own health, both physically and emotionally. Think of yourself as someone in recovery from a horrible onslaught (because that’s the truth), and understand that you need a lot of TLC right now to come through intact.

Does that help?

[FindingMe]

#1062709

I have been a hermit for three years now. My labs are great and by now it is… what it is. I understand that there will be remission from time to time. It will take at least 3 eye surgeries and nothing is guaranteed – at this point I really don’t see me going through it.

I don’t want to hide anymore!! I am tired of feeling embarrassed, less than and I don’t want to make any more excuses! I want to shout that I have GD/TED!! I want to make plans with friends, neighbors, church functions and family – have a quality of life and stop feeling ashamed. Why should I have to be so selective and careful of what plans I make? Just because I have GD/TED does not mean I shouldn’t have a quality of life like everyone else.

I was hoping for some words of wisdom from others who have chosen to live life to it’s fullest with GD/TED. There has to be others that must cancel plans from time to time. For example, I can’t be the only one who can’t drive when it rains.

I understand it’s not a well known disease and I don’t mind educating people – I am just looking for some uplifiting words to share with others when I can’t follow through on something or have to cancel plans.

[FindingMe]

#1018102

HERE IS MY QUESTION…..

Am I the only person who is concerned what people would think if I actually told them the truth… I couldn’t follow through on plans because of my GD/TED? I was always such a strong active person who could be counted on. It’s hard to say… "Sorry, I have to cancel plans because I’m having a bad day." I’m tired of coming up with lame excuses not to mention of the stress of it all.

How do you explain to family, friends and neighbors when you can’t follow through on something or must cancel plans and NOT feel less than????

I had a total thyroidectomy in 08 – at which point I was Severe Hyperthyroid with a very large goiter that I could feel with I took a breath. I had every single last symptom before my doctors finally stopped tossing me back and forth from my PCP to my GYN. You name the symptom and I had it! Finally, my PCP figured out I had GD & TED and soon after I was off to emergency surgery that lasted 5 1/2 hours. From what I understand, the worse the symptoms – the worse the GD and TED affects a person’s life after a thyroidectomy.

I have finally realized and accepted that I will never be able to return to my career, I have started moving forward and have accepted there is no cure. For the most part, I have accepted my limitations (driving); my appearance (eyes); and, psychological issues (anxiety, depression, fatigue, mood swings, etc…) I have seen many doctors and my labs are in range.

However…. I have yet to figure out how to deal with friends and neighbors. I am ready to make plans, socialize and be a part of my community but I am so afraid of disappointing people!

I would so very much appreciate any advise, suggestions, thoughts, ideas….. anything!!

[Ski]

#1062710

If your levels have been stable for that many years and you still find that you are weak and unable to function normally, you should talk with your doctor about adjusting your replacement hormone dose (or ATD dose, where are you with treatment again?). By this time, you ought to have had enough time to heal. If you don’t feel well, go to your doctor and tell them you need to figure this out ~ if they don’t believe it’s thyroid-related, fine, but they should keep looking until they find out what’s wrong, and figure out how to fix it for you. That’s their job. If you keep a symptom diary, you may be able to have a productive consultation with the doctor and figure out which way to tweak your medications in order to relieve the symptoms you’re having.

As far as the eye surgeries, believe me, I know people who have gone through them, and the results are staggering. Your quality of life increases almost immediately. Our conference speakers have mentioned that the emotional aspects of TED are definitely the worst thing about it ~ patients report more trauma over it than cancer patients do over the thought of losing their lives. Correcting your eyes is NOT about being vain, it’s about getting well again, in your whole body.

The truth is that our friends and family may be interested to know every detail when we must cancel plans with them, but most of the time (I’ve found) the details to our specific ailment are not particularly interesting to them. Some of those in your life may be different, and for those, I would give the most basic information at first, and let them lead the complexity of the conversation after that.

I understand completely wanting to go as far as you can go, do everything you can do ~ and you are perfectly welcome to grab life by the tender parts and GO FOR IT. You know, though, that can affect you badly, and can lead to such a bad time that you must cancel other things that you want to participate in. My suggestion is only to craft, very carefully, the things you choose. If you want to take a trip to Europe, just make sure to build in a couple of days where you can do almost nothing, so you enjoy your entire trip. I’m not saying live like a hermit, I’m saying CHOOSE what you want to do. Don’t think you can do everything, because the truth is that you can’t. Try to make some peace with that ~ feel free to push the boundaries, but be realistic, for your own sake.

We have many, many people here who have been where you are. We had a speaker at a conference that told of his journey up Everest, after his successful GD treatment. He acknowledged that it was the hardest thing he’d ever done, the most involved training regimen he ever went through (and he was a regular mountain climber), even more so than it would’ve been, "just" for Everest, before his illness ~ but he did it, it was worth it, and I’m sure you can choose your "Everest" to climb too.

I suppose the answer is, just do it! If you want to do it, do it! If you need to cancel anything along the way or in connection to that, then do that too, and decide within yourself not to feel "less than." We all have limits, for different reasons, and it has to become one of those things you have the wisdom to know that you can’t change. Finding peace is probably the most important thing you can do. Yoga can help with that, and so can lots of other things ~ when you are feeling particularly awful, what do you like to do? Watch a funny movie, take a hot bath? Well, just make sure you build in time for those things regularly, and in the end I think you’ll be successful in having a full life that you enjoy.

[snelsen]

#1062711

Please write to me on this post or by PM to ask me my experience with TED. I think it would be really helpful to you. I have had the most severe of everything relating to TED. In the past year, I have had four surgeries (one last week) and probably will have one more.
I am SO GRATEFUL for the surgeries. I can tell you all about it, why I had them, what it was like. If you have TED, I would like you to be seeing a neuro-ophthamologist. This needs to happen so that your visual fields, and your optic nerves are carefully checked. If you have double vision, which has been my personal hell for two years, the eye muscle surgery, strabismus surgery, has CHANGED MY LIFE for the better!
Shirley

[FindingMe]

#1062712

Shirley: I would like to know more about your surgeries and treatment with your TED and will send you an email with my questrions. Thanks!

Ski: Thanks so much for the uplifting reply!!

I have have been tested for this and that. Have had many doctors look into other possibilities. I’ve tried different medications and dosages. I am currently on 150mg of Synthroid. My doctor does look at the labwork carefully but also listens to me to determine the correct dose.

A few months ago, I started therapy with a psychologist. It’s been extremely helpful. Both my doctor and the psychologist both state that the years/months before the patient is diagnosed with GD/TED and the severity of the disease both have an impact on a person’s future prognosis. I have also done a bit of research on the web and have found articles stating similar facts. I recall one article that discussed how many patients have a difficult time moving foward because they are told by family, friends and physicians that there must be something more going on. Instead of the patient finding peace, he/she continues to believe that if they find whatever that something else is, their problems will go away and they will be the person they were before GD/TED. If and when they don’t find that something more, they go further and further into depression, anger and denial.

I will always continue to listen to my body and, together with my doctors, we do keep an open mind that there could be something more going on; however, my focus now is on peace and acceptance.

Thank you again for the thoughtful reply. The part about climbing Mt Everest gave me goose bumps!

[elf]

#1062713

Hi FindingMe,

I guess I am confused: what used to stop me from being social, was the psychological effects of how I looked. You say you came to terms with how you look (and with mood swings), but can’t "un-hermit" yourself still. It seems to me that there has been no real "coming to terms" maybe.

I tried to come to terms for years, (between the end of my hot phase and OD). But couldn’t. Only OD gave me almost immediate psychological boost. One day, I caught myself – wow, I am not self-conscious anymore. And since then, I got a job, went to school (again), and am living just like any next person.

My hermit years coincided with my staying at home with my small kids, so it was a bit fortunate, considering. What are your prospects of getting eye surgeries?

[Author]

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