[JenP]

#1060673

I was diagnosed a week ago with grave’s disease. My endocrinologist has discussed the treatment options, and I have researched them, but I am scared. I am not looking for medical advice, just personal experiences with anti-thyroid meds and radioactive iodine as these are the two options my endo would like me to consider. I am normally a very active, busy person. I have two kids and two step-kids. I own my own business and teach college classes as well. I have been very sick for about 9 months and struggle to fake it everyday and fulfill all my responsibilities. I am so tired and am getting depressed by all the things I feel I am slacking on. I only say this so that you understand my situation and hopefully can relate. I would like to hear from others who have lived with this and can provide advice and support. Thanks and nice to “meet” you all.

[Kimberly]

#1184027

Hello and welcome! Hopefully, others will chime in with their experiences. You can also read past posts by using the “Search Posts” feature (in the top right-hand corner of the screen) and searching for keywords such as “RAI”, “Radioiodine”, “Methimazole”, “PTU”, etc.. (Note: you must be logged in with your user ID and password to use the “Search Posts” feature).

The “Treatment Options” thread in the announcements section of the forum has a couple of nice links that go through the pros and cons of each option.

Personally, I chose anti-thyroid medications. I took the meds for 7 years and have been off for around 16 months. Even though I’m med-free, I don’t really feel comfortable using the term “remission”, as I still have some eye involvement, and my antibodies are a little elevated. I feel this was the right choice for me, although one down side is that all these years later, I still get labs done every 3 months or so and have a followup visit with my endocrinologist. (And I unfortunately have terrible health insurance coverage).

As you consider RAI, definitely talk to your doctor about how long you would have to be away from your kids after treatment*, waiting period for future pregnancies, and the risk of developing eye issues (which can happen regardless of which option you choose, but happens more frequently with RAI).

Wishing you all the best!

*You only have to keep a distance of several feet from children for a few days post-RAI, but really little ones won’t understand this. Many patients find it easier to have their kids stay with a neighbor, grandparents, etc. for a few days.

[Liz1967]

#1184028

Why isn’t thyroidectomy an option for you? It was a one and done thing for me. So much easier to adjust levothyroxine than methimazole, which has toxicities, and no radiation, lesser risk for eye involvement.

[vicky0306]

#1184029

Hi I was diagnosed with Graves Disease 2 days ago and i am struggling to cope i keep crying all the time and feel i am not getting any support from family and friends. Any ideas how to get through this?

[Ellen_B]

#1184030

Hi Vicky,
The emotions are high with Graves’ patients. Crying is one of the most common behaviors that Graves’ patients report. The very smallest event or no event at all can cause you to cry. Talking to someone else with Graves’ can be very helpful to let you know that you are not alone. Also talking to others who have been through it and gotten better after treatment is helpful. Conversing with others on the Forum is a good place start.
Remember your emotional upheaval is caused by too high thyroid hormone levels. Also remember that there are treatments—antithyroid drugs, RAI and surgery which will bring your levels down and allow you to be normal again.
The problem is the treatments all take time so you have to drag yourself through the treatment period to get to the other end.
To learn more about your emotions you might want to take a look at a lecture entitled Emotional Impact of Graves’ disease by Ira Lesser. You can find it on YouTube http://www.youtube.com/watch?v=CB8_5rbCso8
You might also be able to get some ideas about how to relax from Dr. Herbert Benson “Thyroid Disorders and the Relaxation Response– also on YouTube
http://www.youtube.com/watch?v=Mea202U9wgQ

Getting others to understand what Graves’ is all about is a difficult problem. Not feeling well is bad enough and on top of that being isolated by others who are so important to you is a major additional problem. Can you get any of your family members and friends to read literature?
One article from our website you or your friends might read is–What’s Wrong with Me?
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

Another article you might want to take a look at is entitled An Open Letter to Husbands of Graves’ patients.
http://gdatf.org/about/about-graves-disease/patient-education/an-open-letter-to-husbands-of-graves-patients/

The information in it can be for any family member—not just husbands. It tells us how other family members perceive a family member with Graves’. Most important it tells us that Graves’ patients do recover and become accepted and loved by members of the family again.

The forum is a very good place to come to find support.
We understand the challenges you face with your Graves’ disease.

[JenP]

#1184031

Vicky, I am so new to this I cannot offer any advice, but I do understand how it feels to be so lost. I do feel better now that I know what is causing all these problems I have been having, and finding this group will be a huge advantage I think as well. I hope you find some relief knowing that you are not alone. I know I feel very isolated as well. I have felt so bad for so long and have been faking it for so long, I too feel like my family does not get it, but hopefully with time, they will. I guess, I can offer you understanding and support, and maybe those who have been dealing with this longer can give us both advice.

[JenP]

#1184032

Vicky, I am so new to this I cannot offer any advice, but I do understand how it feels to be so lost. I do feel better now that I know what is causing all these problems I have been having, and finding this group will be a huge advantage I think as well. I hope you find some relief knowing that you are not alone. I know I feel very isolated as well. I have felt so bad for so long and have been faking it for so long, I too feel like my family does not get it, but hopefully with time, they will. I guess, I can offer you understanding and support, and maybe those who have been dealing with this longer can give us both advice.

[JenP]

#1184033

Vicky, I am so new to this I cannot offer any advice, but I do understand how it feels to be so lost. I do feel better now that I know what is causing all these problems I have been having, and finding this group will be a huge advantage I think as well. I hope you find some relief knowing that you are not alone. I know I feel very isolated as well. I have felt so bad for so long and have been faking it for so long, I too feel like my family does not get it, but hopefully with time, they will. I guess, I can offer you understanding and support, and maybe those who have been dealing with this longer can give us both advice.

[JenP]

#1184034

Thank you for this info!

[JenP]

#1184035

My endocrinologist did not mention it. I have been very recently diagnosed and just found her quickly so I may seek an expert in Graves now that I have researched more. I am not sure I am ready for the permanence of surgery or RAI, so I think I am going to start with ATD and see how it goes.

[vicky0306]

#1184036

Thank you all for your responses it’s nice to know i am not alone. I managed to get some family members to read up but still don’t think they get it. I am happy to have people to talk to and understand as i am finding this forum very helpful and nice people to chat with. Thanks again JenP and Ellen_B xx

[snelsen]

#1184037

Hello all, but especially vicky0306 and JenP

Vicky and Jen, you are totally “on track” by feeling discouraged, crazy, stressed, worried, and that life as you knew it will never return! Welcome to our Graves’ world. BUT the wonderful news is, that we were all there, and we are all fine. Each of us has a personal story, as you are learning, and also personal preferences regarding our treatment. In almost every situation, it is up to you. Don’t feel bullied into anything.

Regarding the beginning of all of this, you will find that the ATD’s are wonderful After you have them a little while, you WILL begin to feel like yourself,and you will be in a much safer position relative to your overall health, and will e able to think more rationally about anything and everything. Some people also take a beta blocker, if their heart rate is too fast.

Of the three options, I chose thyroidectomy, and did not think twice about it. I wanted it DONE, permanently and forever. And I actively was not interested in RAI. In my case, thought I did not know it then, that was a great decision for me, for later in life, I had two breast cancer, unrelated, but both required radiation. Lots of it. So that was also good for me.

Others have reservations about surgery and prefer RAI. And as you know from Kimberly’s note, the option of ATD is an option if you want to continue to think about everything. You will maybe find in your reading, that ATD has been, and pretty much still is, the early intervention until RAI or surgery is chosen. But as Kimberly will attest, that is what she wanted, and that worked well for her. In all these case, having thyroid labs will be part of your world, as well as reporting how you are feeling and having a good endocrinologist.

At this stage, believe you will feel better and be like yourself again. And that this is not a fun disease to have. True. Ellen’s references are good, they might be helpful. My thoughts, which really helped me understand (when I was VERY HYPER, and relatively unreasonable about everything and everyone!) are that
before I had Graves, even though I had studied the endocrine system, I had NO IDEA what a person experienced. It really is difficult for people to understand our short fuses, our fatigue, our stress, and some will not understand. For work, I tried to get a reduced work schedule, which I did receive for a short while. But dealing with HR and co workers was so stressful for me, I am not sure I would even try it again. HR people not my favorite people! (: As soon as the ATDs kicked in, I was much much more tolerable to myself and everyone else. You will find that this board is wonderful, especially to know that you are not alone, and that everyone here “gets it.” All for now, time for force myself to get a little exercise in the Seattle rain before it really dumps!
Shirley

[JenP]

#1184038

Thank you snelson. I am having an uptake tomorrow and then will be starting atd. I am really looking forward to any relief at this point. Your words as others’ have helped me feel validated. I am really looking forward to recognzing the woman I am again.

[Kmess]

#1184039

Hello, I am new here and found all your posts to be very helpful. I was diagnosed with Graves in February. I went ahead and had the radioactive iodine treatment in March and have been struggling to get my levels ever since. I am on Levothyroxine, selenium, and take propanolol for my heart. This disease is very hard to deal with and I agree that family members just don’t understand. Everyone seems to think that since its so common that I should just feel ok instantly. Graves has really affected my personal life and me being a single Dad. I find it hard to have the motivation and energy to do anything and I feel so helpless all the time. I was just wondering how and if other people are dealing with the emotional issues and physical ones like I am? I would love to hear your stories and maybe we can get through this together. Everyday seems to be such a chore to get through and I feel like I am such a downer to everyone around me. I seem to have such a short fuse and my emotions just take over and make me unbearable to be around. Physically I am exhausted and feel so sore all the time. My eyes hurt as well, no bulging yet but I have the pain behind them a lot. Sorry if this is just a post about me complaining, but I just am looking for help like Vicky and Jen. Thank you for your posts and I hope we can maybe all come together and support one another here. Thank you

[Kimberly]

#1184040

@KMess – Hello and welcome! Definitely check out the links that Ellen provided on page 1 of this thread…there is a lot of great info on dealing with the emotional aspects of Graves’ disease.

You mentioned that you were having issues getting levels regulated. One thing to check is to make sure that your doc is looking at Free T4 and T3 and not just TSH. TSH can stay suppressed in Graves’ patients for quite some time, so it’s not a good benchmark for dosing early in the process.

Wishing all the best to you and your family!

[Author]

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