# Just wondering if anyone gets the same thing with family and friends!



## Sunny (Sep 11, 2010)

Hi everyone!! I'm Sunny and I'm new to this board. I'm a 40 yr. old female, and I was diagnosed with Graves Disease back in June. It was a complete surprise to me at the time seeing as I went to the doctor's for a follow up on a Tick bite I had a rash with. lol I guess it must have been pretty apparent that I was hyper or something because the Dr. immediately suspected I had something going on with my thyroid and had some tests done. Tests revealed I was severely hyperthyroid so he then had me have a thyroid scan and an uptake test done to confirm Graves disease, then shipped me off to an Endo. It was definitely all a shock at first but once I accepted the fact that I did have this disease it became so obvious that this is what has been going on with me for so long. Even though I've been in denial of anything being wrong and am always "fine" as far as I was concerned, but once I was diagnosed it really was an explanation for all the weird things that were going on with me. So in a way, I guess it ended up being some form of good news even though it didn't seem much like it was. lol

I'm just wondering if it's just me or if other Graves people out there get the same sort of responses and attitudes from friends and family that I seem to be getting. For me, it seems like the attitude that comes from those around me is.... well it's not cancer or a terminal illness so what's your problem? You should be happy it's something minor. I'm not sure why, but that sort of attitude REALLY does hurt my feelings. No one seems to want me to really discuss the disease and no one seems to have any interest what so ever to read anything about it either. Everyone seems to think I'm crazy for being so apprehensive about treatments and having the RAI done next month and the biggest thing of all is no one "gets it" that I REALLY do NOT feel well and that I AM sick even though they don't think I am. I'm just frustrated because I really AM thankful that I wasn't diagnosed with a terminal illness, of course!! But having said that, it doesn't make Graves Disease a "minor" disease or something that's not important. I am seriously PETRIFIED of developing the Graves Eye Disease and will be devastated if I do end up getting it and I'm scared to death of having the RAI done even though I know it's the only option for me at this point. So I'm literally just filled with fear, apprehension, anxiety and just complete confusion about all of this and yet, the people who are the closest to me seem to feel I'm foolish and irrational for feeling this way. That I should be fine and not worry, etc, etc. Is this something that any of you have encountered with friends and family? I'm going to be honest, I REALLY do feel completely lost and alone with this and I question if I'm just being overly sensitive or if it's normal to feel this way. Any input at all or opinions on this would be super appreciated!!


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## lavender (Jul 13, 2010)

I think that what you are feeling is completely normal. Graves had gradually affected me for many years. It is an invisible illness. Except when I was at my very worst, people would look at me and say, you don't look sick. 
Graves doesn't only affect you physically, it affects you mentally as well. I was super anxious, my moods were up and down all the time, and I had fits of rage over little stuff. Until I got diagnosed, I had no idea why. It affected my memory and my ability to process information so I had a hard time understanding the doctors. I had no idea if I would ever feel better again.
I would tell people how I was feeling, and they would say I sounded perfectly fine. What they didn't realize was that I was choosing to use my few good moments out of the day to contact them. 
My doctor had me out of work on disability for months, and people could not understand why. I knew I could not function, but it was really hard to explain. And then I had to fight with the disability people every week to get a check because I did not fit into their expected recovery period. 
There are a lot of activities and support groups for people with cancer. If someone has a heart attack or breaks a bone, their illness is obvious. Trying to describe what happens in your body when a little tiny gland starts poisoning you is not so easy.
Some people got it, others didn't. It was really hard, but I kept reaching out until I found people who could be there for me, and I had to rotate between friends because people would start to tune out when all I could talk about was being sick. I can't blame them. Illness is scary, it reminds us of our own mortality. I have tuned people out myself before, and I imagine I will probably do it again. 
Graves is treatable, and I believe you will feel better again. It's scary when you are in the midst of it, you feel awful, and none of the treatment options are appealing. I know I never thought I would choose to have surgery, until I got so sick that I was ready to beg the doctors to take out my thyroid. Then I got to deal with the shock of feeling better again!
Hang in there. Hopefully this forum can be a part of your support system.
hugs2


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## Sunny (Sep 11, 2010)

Thank you Lavender!! It's nice to be able to hear a point of view from someone who's been through this and understands what it's like!! Thank you so much for taking the time to reply to me! I really appreciate it and just having someone "get" what I'm talking about is incredibly helpful. It really does help in making me feel like I'm not losing my mind completely!!! I'm sorry that you had to deal with so much with your Graves Disease and I hope things are going much better for you now and I hope you're feeling better too!

I guess it's time for me to just deal with this stupid disease head on and attack one problem at a time as it comes my way and not worry about what others think!! First on the agenda... knock the crap out of my "out of control" thyroid!! lol Then I'll move onto the next phase!! Eventually I'm bound to find myself again in all this mess and maybe even feel human again too!! lol


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## Lovlkn (Dec 20, 2009)

Sunny,

Welcome - we "get it" and will be happy to listen.

I have had similar experiences and have internet friends with Graves or post on boards as people who do not have the disease just don't understand.

I bought a book called The Thyroid Solution by Ridha Arem and made my husband read a few chapters and he was amazed how it described what I had been going through to a tee.

As far as


> and having the RAI done next month


Did they offer you anti thyroid medication? Normal process is to go onto an anti thyroid medication for up to 18 months to see if you will reach a remission. Many people can live comfortably with low dose anti thyroid treatment - for life if necessary.

Do NOT rush into RAI and it does sound like that was the only choice given to you. Do you currently have eye involvement? Have you had a baseline exam from a doctor who specializes in TED?

Do you have any lab work with ranges you could post? What medications have they put you onto?

If it were me I would postpone the RAI and try to stabilize on anti thyroid meds and take some time to explore your options which are anti thyroid meds, RAI or surgery.


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## Sunny (Sep 11, 2010)

Hi Lovlkn!! Nice to meet you and thank you so much for replying!! It means so much to me to find people who understand what this is all like!! I will have to check out that book. It sounds like it's a really good book to read and to have others read as well. This whole thing is completely overwhelming!

Here are my labs/tests-

June labs 
TSH- .05

July labs/tests
TSH- .04
Free T4- 2.74
RAI Uptake- 48%

August
TSH- .07
Free T4- 1.29

September (at last week's appt.)
TSH- (I have no idea but she said it hadn't changed much)
Free T4- .59
Scheduled for RAI for Oct 8th

I do have a goiter. My thyroid is 5 times the normal size. My heart rate is pretty fast and my blood pressure is elevated. I had pretty bad hand tremors for awhile too. My Endo did spend quite a bit of time on my first visit going over all my options and what she felt was in my best interest to do and why, etc. She was very concerned with how severely hyper I was and wanted to get me stablized as quickly as possible. She feels that remission is very unlikely to happen with the size of my thyroid as well as the blood flow to my thyroid. She said that even if I were to be able to achieve remission it wouldn't last and I would go right back into a hyper state again. She feels that surgery is too risky with the all the risks associated with it and she feels that the RAI is in my best interest and would have the least side effects and the best outcome for me in the long run. She did leave the decision up to me though. But both her and my GP feel it's best for me to do the RAI.

As far as meds, she started me off on 60 mg. of methimazole a day. She also wanted to put me on beta blockers but I didn't want to do a bunch of different meds at once. I started the methimazole on July 31st. In mid-August she wanted me to bump up to 80mg a day. Before even getting the chance to bump up to the higher dose, I started getting itchy and had hives that would pop up here and there and then disappear. I went off the meds for a week and the endo felt it was the Graves Disease reacting to the meds and not an allergic reaction. So she put me back on the meds. But instead of taking the 80 mg. a day, I put myself on a lower dose of 40 mg a day. I actually felt much better on that dose. No hives, no itching and felt pretty good so I stayed on that until my next visit on 9/9. She discussed my labs and said I was actually a bit hypo and she was going to decrease my dosage. I then told her that I had actually only been taking the 40 mg a day instead of the 80 mg. She was fine about it and told me to go down to 20 mg a day. Then she addressed the RAI with me again. Asked me how I felt about having it done, if I had any concerns, etc, and then told me I was ready to have it done if I was ok with doing that. I was nervous but agreed to having it done. Although I told her I wasn't expecting to be having it done quite this soon. I was hoping I would have a bit more time before having it done. So she discussed it a bit more with me and then told me she'd put the order in for the RAI to be done and that I would need to continue with the 20 mg a day of the methimazole and to stop the meds a week before the RAI. Then restart the meds again two days after the RAI. Then she wants to see me 2 weeks after the RAI as well as have my labs redone at that time as well. 
I do feel a little rushed but at the same time I do understand that if I try for remission I am most likely will just keep going in circles with this disease and I did tell her that the one thing I was positive on was that I don't want to do "this" for the rest of my life. This roller coaster of being hyper, then hypo, and contending with side effects of meds, etc.

As far as any eye involvement.. I haven't been to any eye doctor at all but my endo feels I don't have the eye disease. She does a quick exam of my eyes at each visit checking for lid lag, etc and she says that I am not showing any signs of it and feels that if I haven't developed it by now with how severely hyper I was that it is highly unlikely that I will develop it at all. And she doesn't feel I will develop it after the RAI. But even though she's repeatedly reassured me on this, I can't help but worry about it. I've seen some horrible stories and pictures of what this eye disease can be like and I'm just incredibly scared of developing the eye disease at some point. I know that it's something that I would have to get through if I do develop it but it's down right scary!! I guess I need to just chill out on that and hope for the best.

So basically I do feel rushed but yet I do feel she's been working really well with me and been very patient. I wish I could go the route of remission but I do understand why it's just a highly unlikely option for me. Unfortunately. And once again.. thank you so much for your thoughts and for your reply. Soooo appreciated!!!


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## Andros (Aug 26, 2009)

Sunny said:


> Hi everyone!! I'm Sunny and I'm new to this board. I'm a 40 yr. old female, and I was diagnosed with Graves Disease back in June. It was a complete surprise to me at the time seeing as I went to the doctor's for a follow up on a Tick bite I had a rash with. lol I guess it must have been pretty apparent that I was hyper or something because the Dr. immediately suspected I had something going on with my thyroid and had some tests done. Tests revealed I was severely hyperthyroid so he then had me have a thyroid scan and an uptake test done to confirm Graves disease, then shipped me off to an Endo. It was definitely all a shock at first but once I accepted the fact that I did have this disease it became so obvious that this is what has been going on with me for so long. Even though I've been in denial of anything being wrong and am always "fine" as far as I was concerned, but once I was diagnosed it really was an explanation for all the weird things that were going on with me. So in a way, I guess it ended up being some form of good news even though it didn't seem much like it was. lol
> 
> I'm just wondering if it's just me or if other Graves people out there get the same sort of responses and attitudes from friends and family that I seem to be getting. For me, it seems like the attitude that comes from those around me is.... well it's not cancer or a terminal illness so what's your problem? You should be happy it's something minor. I'm not sure why, but that sort of attitude REALLY does hurt my feelings. No one seems to want me to really discuss the disease and no one seems to have any interest what so ever to read anything about it either. Everyone seems to think I'm crazy for being so apprehensive about treatments and having the RAI done next month and the biggest thing of all is no one "gets it" that I REALLY do NOT feel well and that I AM sick even though they don't think I am. I'm just frustrated because I really AM thankful that I wasn't diagnosed with a terminal illness, of course!! But having said that, it doesn't make Graves Disease a "minor" disease or something that's not important. I am seriously PETRIFIED of developing the Graves Eye Disease and will be devastated if I do end up getting it and I'm scared to death of having the RAI done even though I know it's the only option for me at this point. So I'm literally just filled with fear, apprehension, anxiety and just complete confusion about all of this and yet, the people who are the closest to me seem to feel I'm foolish and irrational for feeling this way. That I should be fine and not worry, etc, etc. Is this something that any of you have encountered with friends and family? I'm going to be honest, I REALLY do feel completely lost and alone with this and I question if I'm just being overly sensitive or if it's normal to feel this way. Any input at all or opinions on this would be super appreciated!!


Sunny; welcome to our board where you will find friends and a wonderful "cyber-family!"

I practically have an all new family and I definitely have all new friends. I was treated horribly with Graves' not only by family for those I "thought" were friends and strangers as well.

It was hurtful to the core and I don't think I have ever healed from that. But, I have made a new life and it is so much better than the old one. I also availed myself of a very good psychologist to help me deal with the aftermath. It was worth every penny. It enabled me to put my life back together again.

People can be very cruel and disinterested. Need I tell you this? We are living in the "It's all about ME" era.

The first thing I recommend if you have not done so is for you to see a good Ophthalmologist (7 years of training and then some) to assess your current status w/ your eyes, establish a "baseline" so any changes can be noted and believe me, there is much to be done for the eyes. Especially if done early on.

Why is RAI your only option? You also have the right to have surgical removal if you so desire. That is good for many reasons, one being you don't have to seclude your self for fear of contaminating anyone and second, the organ gets sent to pathology to check for cancer which is a very good idea also.

Stick with us. We won't dis you and we "sure do" understand.

Welcome.


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## AndiB (Sep 7, 2010)

Hi Sunny...

I just had RAI done on Tuesday and it has been a breeze! Many people talk negative about RAI and we need more to speak positive about the treatment. I kept flipping back and forth from surgery to RAI, because of all the negativity about RAI. Yet surgery has its own issues/risks also that can be very serious.

I also am just TERRIFIED of my eyes getting worse. I went to an Opthalmologist before my treatment on Tuesday and said my eyes were fine. However...I know my body and I saw my right eye, very very slightly buldging. It terrified me!!! He gave me eyedrops called Acular. I used them before my treatment of RAI and I am still using them after. They seem to be helping my eye and controlling the swelling. I know something is going on with it, because when I put the drops in my left eye it barely burns, but my right eye burns like fire. So, it is not my imagination, it is slightly swollen. I am trying to stay calm about it, but difficult. I pray my eyes do not get worse, but again all my doctors say my eyes look good, but I see my right eye slightly different.

I wish you the best...RAI has been great for me so far and I do not regret my choice. 
Best to you...Andrea


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## AndiB (Sep 7, 2010)

Sunny...

I also wanted to mention I was on methimazole also for 1 month and it was great, never felt better. Until....my hands and feet were itching terribly!!! I thought I was going to go out of my mind with it. I went for blood work the same week and my liver enzymes were high, so I had to discontinue the methimazole. There went my wish for remission. This is why I chose RAI.


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## desrtbloom (May 23, 2010)

Hi Sunny:

I can sooooooooooooo relate to your post about all the symptoms and problems and once you are diagnosed a light goes off in your head and you go "So THAT is what has been going on!!!"

I am so sorry people in your life are not understanding. People need an education about thyroid disease and chronic and sometime life threatening auto immune diseases like Graves.

As others have said, we know as we are going through it and I wouldn't wish what I have been going through on my worst enemy. So please know that we care and we do understand.

I hope the endo you go to is very understanding and takes the time to listen and explain everthing to you. Having an endo that you like, can work with and that explains this disease is so important. It's a lot more complicated than anyone knows, until they are faced with having a chronic illness.

Just so you know, please do not exercise or overexert yourself while you are severely hyper as you can have a heart attack. I don't mean to scare you, but you need to know if you haven't been informed. When you are very hyper your heart rate is usually elevated, as well as your blood pressure. You'll be given medication to help it while you are on medication to stabilize your hormone levels. Once you get stabilized, then you can exercise again, but in the meantime the docs usually don't want you doing so.

Take care!

Best Regards,
Patti


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## karen18 (Jun 19, 2010)

Sunny, from someone that was only diagnosed with Graves Disease just a little over 5-months ago I totally understand what you're going through. My symptoms just kept getting worse and there were days when I was just in tears wanting it all to be over. The people on here have helped me through some tough stages of this illness and I am now happy to say that after being on med for 5-months I now feel like my old self again. I go to see my Endo every month at the moment just to make sure I'm still taking the right dosage.

I started off on 20 mg of Carbimazole a day to begin with and I'm now down to 2.5mg a day (low maintenance dose).

If I can say one thing from my own experience it's that I don't want to go down the track of having my thyroid removed if I don't have to. I have to admit the first 3-months were hell for me and I nearly threw in the towel and had the RAI. The thing is with RAI there's a high likelihood of you then becoming hypo and then you will be taking drugs for the rest of your life. I have 2 girlfriends that have already gone down that path and they're still struggling and don't feel normal. One of the girls had her thyroid removed when she was only 20-years of age, and still regrets making that decision. There's just no turning back once your thyroid is gone, so it's not a decision that should be taken lightly. Of course I don't want to scare you either into not having the RAI if it's the right course of action for you. Like I said everyone reacts differently to this illness and treatment.

I opted to stay on meds for the time being. It's one tablet a day, and I have to admit I feel great on them. 100% actually at the moment  It does take a while to adjust to them, and you might have quite a few ups and downs like I did. Then again everybody is different and their body reacts in different ways. My right eye did flair up. It wasn't bulging or anything, however I did feel a lot of pressure in it and then there were days that I couldn't see because of light sensitivity, and it was blood shot and felt gritty. It was hell I won't lie to you. A course of steroid eye drops cleared it up almost instantly, and since I've dropped back on my meds again it hasn't come back thankfully 

I love my Carbimazole and I am so so happy I stuck with it.

I am now going to stick with it for 18-months and then my Endo will take me off it and see how I go? I have to say I am optimistic and I will only do RAI as a last resort. Fingers crossed that never happens.

I think the one thing that got my back up from day one, was that I could never see the benefit in removing a perfectly healthy organ just because my immune system was attacking it. I have to admit my Endo was pushing for RAI as well. I am so stubborn when it comes to my body and I am not giving in without a fight. I believe doctors tend to take the easier option these days and to be honest, it's your body and something you have to live with for the rest of your life, so make the choice that's right for you.

Meds are working great for me  I will keep everyone updated as to how it all turns out, but I am quietly optimistic like I said.

We're all in your corner so go with what makes you happy, and what feels right for you. Good luck!


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## lavender (Jul 13, 2010)

Karen,
It's great to hear a story of someone who is doing well on meds. I think it is important for people to know there are choices other than RAI. I personally felt awful on meds, did not like the idea of RAI, and opted for surgery, which was also scary. I felt that it was the right thing for my body, and I haven't regretted it for a moment. I have been on levothyroxine since surgery and haven't noticed any issues. I guess I have the rest of my life to learn to deal with hypothyroid. I would take this over hyper any day.
We are all different, and the treatment that is right for one person is not necessarily right for another. It's so important to know and trust ourselves and not let doctors, friends, family, whoever bully us around. 
Sunny, good luck with your RAI or whatever you decide to do! Just trust your decision, and know that you will feel better once this is treated.


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## Sunny (Sep 11, 2010)

Hi everyone!! Sorry it's taking me so long to get back to this and reply. I want to thank EVERYONE for all the wonderful advice and all the support. I don't even know how to express just how much it means to have people understand all of this and to have replies that are so caring, sincere, informative and genuine is just really incredible. All the advice was very helpful! Thank you SOOOOOO much!!!!

I took some time to REALLY think things over. I do feel that I will most likely go with having the RAI done, BUT.. having said that, I made a decision to first see an opthalmologist to check my eyes before I have the RAI done. I've spent the past couple weeks freaking out getting this RAI done and the not knowing if I do or don't have the eye disease for sure or not has been driving me INSANE!! So I finally have made the decision that I'm going to cancel the RAI and postpone it for a later time after I've had my eyes checked. I haven't cancelled the rai yet, I actually just made this final decision earlier tonight. lol So I will have to call and cancel it and break the news to my endo dr. I'm a bit worried that she's going to be upset with me but this is something that I NEED to do for my own peace of mind. So hopefully the endo won't be too ticked off with me. I really do like her a lot and would hate to lose her as my dr. But I do know that this IS the right decision for me right now. I DO need to slow all of this down, take my time, and REALLY make a decision based on what I definitely feel is best for me and I can't just jump into this RAI without knowing if my eyes are all set to do this. So I do feel seeing the eye dr. first IS what I need to do. So she's just going to have to understand.

So anyway, just wanted to update everyone and also wanted to thank all of you for all the words of advice and all the help. It truly really does mean a lot and definitely helped me keep my sanity with knowing that I'm not completely alone in this and that there are others out there who "get" what all of this is like and understand. THANK YOU!!!!!!


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## Debbie from Milwaukee (Apr 18, 2010)

Sunny:
I am just catching up on your thread. Sounds like your decision to take things slowly and deliberately is giving you some control back in the midst of a crazy and often uncontrolable condition. Kudos to you for sticking to your guns!

My middle daughter was diagnosed with Grave's disease 3 1/2 years ago when she was 17. First she was given Methimazole (but not offered a beta blocker to ease her symptoms until I asked about it). I know what you mean about how the treatment needs to be tailored for each individual. When I read about the research on Methimazole and asked my daughter's doctor about going with RAI, she said that the ablation would be a good option to go with, so that is the ultimate treatment my daughter had. My daughter was declared to have a balanced thyroid a year later, but more recently she has been having more thyroid and mental health issues. She is only just getting back to seeing doctors after several mental health hospitalizations and a lapse in health insurance.

Three years ago I thought I understood my daughter's condition, but more recently I have seen how incredibly complex thyroid imbalance can be. Please keep informed on all of your options and available research on treatments. Hope it all goes well at the eye doc as well. Best wishes for steady improvement in your health!


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## lavender (Jul 13, 2010)

Good to hear from you. Glad you are getting your eyes checked out. Better to be cautious now than sorry later.


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## carli (Sep 5, 2010)

Sunny said:


> Hi everyone!! I'm Sunny and I'm new to this board. I'm a 40 yr. old female, and I was diagnosed with Graves Disease back in June. It was a complete surprise to me at the time seeing as I went to the doctor's for a follow up on a Tick bite I had a rash with. lol I guess it must have been pretty apparent that I was hyper or something because the Dr. immediately suspected I had something going on with my thyroid and had some tests done. Tests revealed I was severely hyperthyroid so he then had me have a thyroid scan and an uptake test done to confirm Graves disease, then shipped me off to an Endo. It was definitely all a shock at first but once I accepted the fact that I did have this disease it became so obvious that this is what has been going on with me for so long. Even though I've been in denial of anything being wrong and am always "fine" as far as I was concerned, but once I was diagnosed it really was an explanation for all the weird things that were going on with me. So in a way, I guess it ended up being some form of good news even though it didn't seem much like it was. lol
> 
> I'm just wondering if it's just me or if other Graves people out there get the same sort of responses and attitudes from friends and family that I seem to be getting. For me, it seems like the attitude that comes from those around me is.... well it's not cancer or a terminal illness so what's your problem? You should be happy it's something minor. I'm not sure why, but that sort of attitude REALLY does hurt my feelings. No one seems to want me to really discuss the disease and no one seems to have any interest what so ever to read anything about it either. Everyone seems to think I'm crazy for being so apprehensive about treatments and having the RAI done next month and the biggest thing of all is no one "gets it" that I REALLY do NOT feel well and that I AM sick even though they don't think I am. I'm just frustrated because I really AM thankful that I wasn't diagnosed with a terminal illness, of course!! But having said that, it doesn't make Graves Disease a "minor" disease or something that's not important. I am seriously PETRIFIED of developing the Graves Eye Disease and will be devastated if I do end up getting it and I'm scared to death of having the RAI done even though I know it's the only option for me at this point. So I'm literally just filled with fear, apprehension, anxiety and just complete confusion about all of this and yet, the people who are the closest to me seem to feel I'm foolish and irrational for feeling this way. That I should be fine and not worry, etc, etc. Is this something that any of you have encountered with friends and family? I'm going to be honest, I REALLY do feel completely lost and alone with this and I question if I'm just being overly sensitive or if it's normal to feel this way. Any input at all or opinions on this would be super appreciated!!


I totally 100% know how you feel. I am a 26 year old female who has been suffering with this same disease. It is really hard for me to function a normal life. Sweaty, jittery, irritable, extreme hunger, problems concentrating. My boyfriend thinks that I will be fine . none of the treatments I have tried are working for me. I did the RAI last year and there was no effect. Now i am on the Tapazole and beta blockers which i just found out yesterday have not been working either. My thyroid id being stubborn. I just feel like crao all day from the meds i am on. sleepy and nauseated. I have no support from home I will sit im my room and cry because I am soo sacared that something really bad is going to happen to me because i cannot get my levels back to normal. The meds by themself make it hard to even clean my house. If i dont take them I can do anything I love to do. So it is really hard for me to just live and accept the fact that if i dont do this treatment i will not get better. You can always writer me if u need to talk to someone or if u are feeling down :hugs: this message board is where i have been finding girls like me to talk with and put some sort of comfort in my day. Just keep your head up and remember that you will be better soon.


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## Sunny (Sep 11, 2010)

Thank you lavender, Debbie from Milwaukee and Carli!! Thank you for all the support and encouragement!! 

Well, I called the Dr's office today to cancel the RAI for next week. Was told I had to call the hospital and cancel through them. So I did, but never did end up getting a "person" to talk with to cancel. Ended up having to leave a message instead. So I'll have to call again on Monday and make sure they got the message ok and everything. Ughhh, I felt like a kid getting in trouble or something when I called to cancel. lol I sure hope I'm making the right decision. It feels like the right decision for right now. I KNOW there is no possible way that I could make myself do the rai next week so I feel cancelling and rescheduling at a later time when I'm ready and after I've had my eyes checked, is the right thing for me. The endo dr. doesn't know yet so I'll have to call her office on Monday as well and I'm sure she's not going to be too impressed with me.  But, she's going to have to understand that I just can't do this right now. I'm just not ready to do this yet. Ughhhh, I feel like I'm being such a chicken about this!!!!!


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## lavender (Jul 13, 2010)

good for you for sticking up for your needs. RAI is a big decision and your eyes are important. Now you can have some breathing space to decide what is best for you.


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## AndiB (Sep 7, 2010)

Sonny...It is very important to check your eyes. I had my eyes checked with an Opthalmologist before my RAI on Sept. 14. I cancelled my RAI 2 times, because I just was not mentally ready. My eyes appeared to be fine before the RAI, but I have had slight swelling of my eyes and lids since the RAI. It appears "Acular" is keeping it controlled. I saw the Opthalmologist the other day and he measured my eyes. My right eye is slightly and I mean slightly protruding more than the left eye. I guess my question is your eyes and everyone elses eyes can be fine before treatment, but from my understanding after treatment things can change. Anyone on the board correct me if I am wrong...Its not the RAI that causes the eyes to get worse, its the antibodys that are fighting against the thyroid for some unknown reason can/will attack the eye tissues? This was explained to me by two dr's. Holding off on treatment can actually make things progress and get worse. But I have to say my overall experience with RAI is very positive. I am feeling wonderful, levels are perfect right now, and overall feel like a new woman. I am not trying to scare or be negative, but it is very important to feel comfortable with your decision and know your on your way to healing. Whatever comes along during your journey, take it one step at a time and you will do just fine. Ive learned this as I went through my journey. I dont handle sickness well, as I have never been sick in my life! Good luck with your decision and I wish you the best.

I wanted to add...I was reading your 1st post of this thread and your words/explanation of GD was PERFECT. Soooo.... how I feel. Lost my bestfriend because of it. People can be very insensitive and cruel. I am so hurt from her words, not thinking before speaking. I am most definite I will not be friends with her again.


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## poohbear61 (Oct 11, 2010)

Oh yeah. I just found out a couple days ago. Everybody keeps telling me "but you look great!" And someone I work with, who is hypothyroid and on replacement meds, asked me if I thought that if he took a little more than his usual dose of meds, he might lose a little weight too? I said sure, you might also have a heart attack and become manic-depressive as well. Not to mention the eye problems rashes etc. Try it, you'll like it!


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## lavender (Jul 13, 2010)

poohbear61 said:


> Oh yeah. I just found out a couple days ago. Everybody keeps telling me "but you look great!" And someone I work with, who is hypothyroid and on replacement meds, asked me if I thought that if he took a little more than his usual dose of meds, he might lose a little weight too? I said sure, you might also have a heart attack and become manic-depressive as well. Not to mention the eye problems rashes etc. Try it, you'll like it!


you made me laugh! thanks! 
I know when I was in hyper storm and had to request leave time, my boss told me she always wished for a hyperthyroid so she could loose weight! Be careful what you wish for. It's hard to really know what this disease takes from you unless you have been there. Scary stuff.


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