[jwgraves]

#1018099

In about a month I will officially be in remission. I go for my level check at the end of April which should put me one month in the world of remission. A celebration, I know. I can’t help but feel apprehensive about it, though. Is this for real? Am I really healthy? It has been a long haul. This disease and the healing process changes you.

I really want to make sure that I do the right things. What should I expect for follow up? My endo has been very much about the numbers throughout. Because of my insurance, I have had to trust him, and he comes very qualified and experienced, but not so comforting with the other effects of the disease.
I do have nodules. Should I ask for a scan? What is the routine schedule for follow up level checks?
Are there other questions that I should ask or other things I can expect now that I am approaching remission?
Thanks.

[snelsen]

#1062691

Hey, welcome to a great group of people!
I would love to know a bit more about your experience, when diagnosed, how treated, how do you feel now? not hyper and not hypo, but pretty darn fine? Did you take ATD’s, beta blockers? How did you follow up from there?
I guess you could/should ask your endo about your nodules if you haven’t already. Lots of people have some. Do you know you have them because you had a scan at some point? Kinda sounds like your endo is fine, watching the numbers is fine as long as he knows how you feel and you are keeping posted. It is that combination that matters!
I hope others write to you with their experiences of remission. I don’t think I ever had one.

My story? Got hyper, got treated, got surgery, got euthyroid, became hypo, began Synthroid and I am still on it. Have more frequent lab tests when I recognize hyper or hypo symptoms, otherwise once a year.
I now have had TED for two years, would not wish it on ANYONE!!!

I’m sure others will chime in with their stories, look forward to hearing more about yourself.
Shirley

[jwgraves]

#1062692

Shirley,
I am actually not new to the site, but have been okay for a while and haven’t visited.
My story… I found out about my Graves in August of 2008. I was severely hyper, TSH being unrecognizable. I had lost a lot of weight, but was not unhappy about that and thought I had finally lost my baby weight.
Anyway… was put on tapazole and beta blockers and have the poke marks left from the many, many level checks – monthly, then bimonthly, trimonthly and now I am at my six month wait to see if I make remission. I have enough anxiety and depression and irritability to be put on happy pills, which may or may not be the result of the Graves. My life is full of stress filled surprises. Probably why I am Graves to begin with. Whatever the reason, I need them to keep me sane still.
I have had eye issues, TED, but not severe enough to have surgery, mostly severe vision changes from near to far sighted and back again with horrible watering and dryness. I did have bulging early after diagnosis.
All in all I have probably been sick for at least 5 years, only knowing since summer 2008.
I have had one nodule since the beginning. I can see them in my neck. My butterfly is greatly diminished from what it was and I can see at least one more nodule.
How do I feel now? Fine, I suppose. I have struggled with who I was/am. I do remember laughing again for the first time just this past year. That was odd. I try not to linger on the Graves. God knows I have plenty more i n my little world to distract me. Once in a while something will be physically different and familiar, like sneaking up on me, and I will think "Is this a symptom? Am I starting this again?" I don’t like that feeling. It makes me lean toward being all done and having RAI if (ever) I need to make that decision. But that scares me too.

[snelsen]

#1062693

Are you OFF meds now? And waiting to see if you are in remission? Which I presume you mean that your labs (AND YOU) are in normal range. The other word that is associated with remission is recurrence! And this is entirely possible at your stage. Sounds like you have a plan, so move forward to see if it works. Remission, as you know, means an abatement of symptoms. But you still have Graves’, always will ,and it is entirely possible that you may become hyper again.

Your thoughts about this will evolve with time. You can type REMISSION in the search engine, maybe you will hear from more people about this. But as you know, from reading this site, and reading the experiences of others, the general path of Graves’ after diagnosis is to take the ADT’s and beta blockers as you have done, which will help us feel like a human again, and then we are more prepared to consider the three treatment to continue getting well, which, as you know, are ATD’s, Surgery, a thyroidectomy, or RAI.

Most of us have chosen one of these three ways to go, usually with much indecision along the way, and then make a decision on our own personal choice, which is almost always possible to do.
Shirley

[Bobbi]

#1062694

Just a comment about what constitutes remission: according to the experts who have given us advice, remission means that we can maintain normal levels of thyroid hormone while off the meds for a YEAR or more. Many people can go off the meds for briefer periods of time. But technically, it isn’t a real remission unless it continues for over a year.

[jwgraves]

#1062695

I am off meds now and will have been off them for one year at the end of March. So I will know in April when I have my scheduled lab test if I am still normal range and officially in remission. I was just wondering if there are things I should know to ask when I talk with my doctor at that point.
” title=”Wink” />

[Ski]

#1062696

First, I hope you get the results you want! Second, it sounds as if you are well versed in all things Graves’, so the only thing I would think you need to ask your doctor is about their recommendation going forward ~ do they recommend coming in every few months for blood draws, or waiting until you feel "off," or some other timeline? Remission can be longterm, but of course it could end and your hyperthyroid symptoms could return, so it would be important to know what your doctor recommends in the future to make sure you remain as healthy as possible.

I’m so glad you’ve made it this far, congratulations! It would appear that you’re on the right track. ” title=”Very Happy” />

Ah, but having said that (and re-read it just now) ~ please don’t consider it a personal failing if your remission ends. It happens to many, and it doesn’t mean you’ve done anything wrong.

[mamabear]

#1062697

Hoping all goes well for you and you are in remission! I am in remission almost FOUR YEARS!!! I was just like you, "i’m not sure", "what do I do", "could this virus take me out of remission", "i’m scared", "i’m stressed, will that cause it","why should I be happy, I know it wont last"…. Oh I can go on and on and on, and most people who know me will say YES I can surely go on and on!

Every day is a baby step! You get sick, you get sick..treat it!
You wash your hands when you come home and make sure kids wash their hands too! That is a rule in my home(although ds15 doesn’t do that anymore, but the other 3 do!).
Live each day…it will get easier and every once in a while you will say "oh I didn’t think about Graves today!" It doesn’t mean you are ignoring it, it means you are living!

If I come out of remission again, I’ll just go back on meds! It’s that simple to me at this point.
if that doesn’t work then I’ll consider RAI(because I dont have a pregnant sister, a dieing grandfather and want to get pregnant anymore at this point in my life), not really sure what I’ll do but it would be an option.
I know I would deal with it if it happens again. And for it to happen again wouldn’t upset me in teh least. 4 yrs is a long time to be in remission!
If you come out of it, it’s not your fault, it’s just a disease. And I truly mean, it’s just a disease. Treat it with respect and learn all about it and try your best to kicks it butt and if that means you can go into remission well there ya have it. When it kicks back then go back on meds or do what you wish!

Let us know what your labs say!!!!!!

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