[Sneagle02]

#1060554

I have had Graves’ disease for 2 years. Initially it was controlled on low dose methimazole but now I have had to increase the dose over the last few months and it has been harder to find the sweet spot so I have been feeling lousy. I stopped methimazole yesterday for a radioactive uptake scan next week in preparation for RAI. So now I feel worse.
And I’m just so tired of not feeling good and I’m not sure I will ever feel good again. I don’t even know what normal is anymore.
And I’m not sure if I should tell people at work or not. Any thoughts on that?

Linda

[flora]

#1183275

Hi Linda,

I’m one year and 9 months into this journey, on Tapazole, and still looking for my sweet spot dose, too. While the swings have not been huge lately, with each blood draw, my levels seem to be a little bit up or a little bit down, and I never feel as good as I’d like to – some days are almost 95%; while others – well, lousy would be the word for me, too. Just thought it might help a little to know that others like me, are in the same boat as you. I’ll try and stick with the rollercoaster ride for now, but maybe others here will post their experiences with RAI – many, many have chosen that option and have been glad they did.
In the meantime, we’re never alone here – all the best,

flora

[Sneagle02]

#1183276

Flora:
Thanks for replying. I appreciate the encouragement. It feels lonely and I feel like I should be functioning better despite the Graves. I am pretty hard on myself, I know, but I can’t stop feeling like that. And I’m really not sure if I should tell people or not. If I had something like cancer, it would be more clear to me about disclosing and probably more obvious. I don’t want to complain and I don’t want to make excuses, which is how it feels to me.
This board seems really good, I’ve only been here a short time, but I have to say it is discouraging to have close to 200 people view this post and only 1 reply.
So, thanks for reaching out.
I hope you find your sweet spot soon.

Linda

[flora]

#1183277

Yes, it has been pretty quiet here lately, but as Kimberly noted recently, many views are likely from Guests, who have not yet joined us and cannot post until they register. Also, I imagine that once they hit their levels and feel better, many former posters move on – wish they could stay, for those of us still struggling, but I suppose it gives us something to look forward to. I have received much support here – advice, empathy and loads of humour! If you need a lift today, take a look through the posts under my User Name … flora … with a small “f”. Lots of encouragement there – and laughs, too! Hope today is a good day for you,
flora

[Liz1967]

#1183278

You will feel good again. I have had Graves for 18 months and have the eye disease too. I found after my thyroid was totally gone via thyroidectomy I felt better right away. Hopefully once yours is no longer functioning you will quickly get into normal range and make minor adjustments to where you feel best, not just least bad! This disease teaches you patience for sure. Hang in there.

[Kimberly]

#1183279

Hello – The work question is tricky. I assume that you will at least need to take some time off due to the radiation safety precautions, which will restrict close contact with others, in particularly children and pregnant women.

So you might need to give your supervisor and HR a more detailed explanation. I took anti-thyroid meds and told very few people; I told the one person who worked for me that I had a thyroid issue. That’s common enough that it didn’t really raise any eyebrows, as I wasn’t ready to share the whole story.

A couple of notes on RAI – first, make sure your doctor is looking at Free T4 and T3 and *not* TSH when they decide when to start you on replacement hormone. TSH can remain suppressed and is not a good benchmark. Also, if you have any active eye issues, you might want to see an ophthalmologist prior to RAI, as this treatment can sometimes make eye issues worse. Steroids can reduce this risk, but this is a decision that you will need to make with your doctor.

We do have a number of posters here who are success stories with RAI – hopefully, they will chime in here as well.

Take care!

[barbra]

#1183280

Hi Linda,

One of the reasons why it’s a bit slow here on the forum is probably because of the upcoming holiday season. December is bound to be busy for some people.

I had my RAI in July 2013, went through a hypo period, did some of the adjustments on the meds but am feeling fine now. Of course, it wasn’t quite as simple as all that but I didn’t want to get into my many complaints here.
I know it’s hard to hear someone say that it’s going to get better, that with patience you’ll find your way back, when you feel so very bad and hopeless. And since most of the Graves symptoms are not very obvious we don’t get the sympathy we need from family and friends. It would be much easier to hobble around on a broken leg where everyone could see the crutches. Sadly, as it is, most people don’t know what Graves disease is and sometimes think we’re making it sound worse than it is.

But you will make it through this misery! Don’t give up. We are here for you, whine and complain all you want because we have all done it here before and we are listening.

Hang in there, Linda.

Hugs.
Barbra.

[scanders]

#1183281

Hang in there! You’ll feel better. You’ll have some good days and bad days along the way, but eventually you’ll have more good days than bad. (I’m one of those still looking for the perfect dose of MMI, and having a few ups and downs along the way.)

I’ve told some people at work, but on a case by case basis. Working in healthcare, there are some folks that are truly interested in learning about the disease. One of my team members is a nursing student, and said she passed her endocrinology class because I shared with her. (I have TED that’s really noticeable, so it’s pretty clear something’s still not quite right with me. Some people ask, but most just stare, do a double take, or avert their eyes. Before the eyes were so noticeable, it was just a big weight loss, then gaining it back, and people really didn’t want to comment on that so much. )

Best of luck with your treatment! It really will get better!

[swhited]

#1183282

Hello,

This whole Graves thing definitely bites! I’m pretty new to it. I am using anti thyroid meds and beta blockers at this point, so I don’t have any experience with RAI other than what I have read here on this site. This forum is the one place I found that does at least let me know I’m not alone and others feel as bad as I do. Please keep coming back even through the busy holidays for support because this is the time we really have to rally for each other. People who don’t have Graves really don’t quite understand how up and down many days can be simply because we “don’t really look all that sick.” Check out the link to the spoon theory. It was shared with me on this forum. It made me feel better and gave me a tool to talk about how I feel with close family at least. I truly hope you start feeling better soon, but try to remember you’re on your own timetable and if it isn’t what others have experienced it doesn’t mean you’ve done something wrong it’s just how your body needs to heal. I agree with you 100% that patience is very hard when you want to feel better. Just know that people here truly understand and we do care.

[snelsen]

#1183283

Hi Linda,
It is really, really tough to have this drag on. Especially cause you had a good experience for a while on ATDs. hell to regress and feel like crap.

Not sure about your work situation. I think Kimberly’s thoughts are good. Definitely HR and your boss should know, cause you will need to take some sick leave or LWOP (leave without pay) if you want to save your sick time. I can tell you that I worked in health care, and it is so busy, that the general expectation from my co-workers that I continue to “pull my weight” at work, which was discouraging and demoralizing to me, all the more, because I worked in health care..

You are having your RAI very soon, so most likely you have a “note from your doctor?”

I totally “get it” People understand the word “cancer’ and most people have relatives who have had it, or they themselves have. Now and they you will find someone who totally “gets it” about Graves’, but it is not as common, cause Graves’ is not as common.

I hope you get to the “sweet spot” about talking to friends and work. You need and deserve support and understanding, and really, it is kinda hard to get sometimes. But with each day, you will progress to being your”Old self” and one of these days, you be writing (I hope) on this forum, giving another newbie encouragement that it DOES GET BETTER, and most of us get back to our old selves, pretty much. This is hard to evaluate sometimes, cause other stuff keeps happening, including getting older! And other stresses in life.

Please do keep writing. I was out of town, then sicker than a dog with a respiratory thing. Back in the world of living and feeling better now.

That period of time prepping and waiting for RAI is really limbo, and it does take a while to get to feeling better after an RAI, regarding management of your thyroid dose. but it will happen!
Shirley

[Raspberry]

#1183284

Hi Linda, I’m trying to respond to your homophone post but I keep getting rerouted to a web page that won’t let me reply! So I reply here. Yes, this happens to me but in a different form. Often when I am writing I’ll write a homophone word. Like I might have written right instead of write. That is a mistake I just didn’t tend to make before GD. Two years plus in and I still do it some and have to proofread my stuff more carefully than I used to. I’ll have to pay attention to see if this is happening for me in listening to others!

I’m sorry you are having a rough time too. This disease is a rough gig – partly because it seems so hard for others to understand its impact and maybe even for us to explain it. Take care and hugs.

[Kimberly]

#1183285

@Raspberry – I just pasted your comments over on the other thread. I have no idea what happened when you were previously trying to post! If you have that issue again, could you send a screen shot to info@gdatf.org? We will research to see if it’s something on our end that needs to be corrected.

[Bella1]

#1183286

Linda,

Just to pass on a little hope, 2 years ago I was where you are. I was diagnosed with Graves (TSI 417%) and Graves eye disease. I was on higher and higher doses of Methimazole, I couldn’t relax or sleep and I was constantly irritable. It was horrible and I came to GDATF several times for advice. In fact, I learned more here than I did from my drs. Well, last Dec my thyroid started growing like mad until it was squeezing my throat, choking me and making it very difficult to eat or drink. I was prescribed Lugol solution (to shrink my thyroid), was scheduled for a thyroidectomy 2 weeks out and began preparing for life after thyroid. A few days later my endo called to tell me that I had gone into remission and that I had become very hypo (TSH 125) from the Methimazole still in my system, and that had caused my thyroid to grow to compensate. After both 6-mo and 1-yr bloodwork (all normal, including antibodies) I am still in remission with no set-backs. Dr Stan (Graves Specialist at Mayo) says I’m probably one of the 40% who permanently go into remission and that I only need follow-up bloodwork once a year. YEEEEEEEEE HAAAAAAAH!!

So hang in there. Everybody’s experience is different and unpredictable. Good luck.

[JEH]

#1183287

I apologize for not visiting this site more often. I have a disabled spouse and it takes a lot of my free time. I was fortunate that Graves hit me after I had retired from the workplace and was running a business out of my home. I was able to manage my own schedule.

The workplace question is tricky in my opinion. I worked in HR in a hi-tech company for 9 years. Although I could feel sympathy for the health challenges of others, there were plenty, especially in management, who did not. My advice is to keep things as close to the vest as you can. Your health is no one’s business but yours. That’s why we have to deal with Hippa now. Your workplace cannot discriminate against you on the basis of your health, but that doesn’t mean you might not get the opportunities you might get otherwise if they think investing in your future is iffy. Productivity bars are really high these days. Use your sick days sparingly. Check out options for medical leave, paid or unpaid, so you are prepared for whatever comes.

The best of luck and use this forum. We will always sympathize.

Jane

[Sneagle02]

#1183288

Thanks to everyone who has replied. The bad news is that going off the methimazole for the uptake study has made me feel much worse. I am jittery and cannot focus for the life of me and all the other fun symptoms. And I think in one week I have lost a ridiculous amount of muscle mass.
The good news is that I can’t wait to get the scan today and restart the methimazole until I am scheduled for the RAI . It’s like the story my grandfather used to tell about the farmer who had no room in his house so the rabbi kept telling him to bring in another animal every week and then when he finally told him to take them out, his house was much bigger! Or something like that.
I am not feeling as down about this right now, maybe because I feel like I am moving towards a more definitive resolution. I refuse to think about the logistics of doing RAI as a single mother by choice with a 9 year old and a dog and a job that involves working with children. It has to work out.
I still am on the fence about telling people about the Graves disease. I know my productivity is down, especially this week but I hesitate to share why. Partly because when I tell myself why, I feel like I am making excuses.
Anyway, the scan is this afternoon and I have my medicine with me to take after and hopefully will know then what kind of precautions I will need to take for home and work and can make further plans.

Linda

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