[bobkatak]

#1170257

Just a quick update, wife went through with the RAI, she was given 25 mci which i thought was kind of high but maybe not since her RAU was only slightly elevated at 30% and she cant take ATDs is why they went that high. I would rather they went on the high side vs the low side anyway. Hopefully it wont take three months for her symptoms to improve, I have read it can take one to three months and I dont think the family will survive three more months. I will continue to update as she hopefully improves. Thanks for listening.

[Kimberly]

#1170258

Thanks for the update — definitely keep us posted on how everyone is doing.

Just a quick reminder to make sure that your wife’s doctor is checking Free T4 and T3 in order to determine when she needs to start on replacement hormone. TSH can remain suppressed for quite some time after RAI, so this is not a good benchmark for making dosing decisions; relying on TSH alone can send patients severely into hypO territory.

Hopefully, things will start to get better from here for you, your wife, and your entire family. Take care!

[sharilynk]

#1170259

Hi there. I’m a woman who’s been down the hyperthyroid road like your wife at about the same age, and, although I never cheated on my husband, I can see how it could happen. I certainly went through a long period of being very difficult to live with. I was sure that, after all my years “sacrificing” for my family, none of them appreciated me and why should I continue caring so much about their needs instead of my own needs. Long story made short, I became totally self absorbed and angry about everything. I’m glad they put up with me and that I didn’t go so far off the deep end and destroy my family. But I can see how easily it could have happened. I don’t know where I’d be without my husband of 33 years and my two wonderful adult kids. I used to work in medicine and the docs used to tell our patients when they gave them certain medications that could alter their reasoning abilities, “Don’t make any important decisions while you’re on this medication”. Well, thyroid docs should tell that to hyperthyroid patients. Reasoning goes out the window and onto the street. Sadly, many endocrinologists don’t do a very good job of managing the patient. They want to do lab work and prescribe and not see you for three or six months. It’s hard to find one that really understands the full effects of the disease. Managed care has made things much worse because the docs have to see a lot of patients in order to pay their bills.
You said your wife had a low white count on the methimazole. Was she still on 15 mgs? For me, I am a small frame person, and my doc started me out on 20 mg but quickly dropped me to 10 mg and then to 5 mg. My white counts went low too, but after I went down to 5 mg. my blood counts returned to normal and I was able to maintain normal thyroid numbers on that low dose.
I eventually went hyper again after being on the meds for two years and then trying to go off. I was off meds for over a year before I went hyper again, so last July had rai treatment. It’s been a tough row to hoe. It’s been so long since I felt normal I don’t know what normal feels like. I went low and gained a bunch of weight before my doc started me on synthroid. Now my numbers are back in range and I do feel better but still have heart palpitations and trouble sleeping through the night. My muscles cramp and my skin has changed a lot. I have about 20 pounds to lose.
My point is, while rai stops the overactive part and some of what goes with that, there will be a whole new set of physical issues to deal with. Too much thyroid followed by rai followed by low thyroid followed by medication does a terrible number on a person physically and recovery takes a while. Sometimes I feel like I’ve been through chemo and the effects are ongoing.
So hang in there and I hope your wife will too. Hopefully the crisis will come under control and she will look back at some point and appreciate that you and the girls stuck with her. It takes a lot to do that. Best wishes.

[bobkatak]

#1170260

Sharilynk

Thank you so much for your response. My wife has said those things exactly. She just told me again tonight that she catered to me and the kids her whole life and nobody appreciates it, its time for her to do what she wants. I have been doing a lot of reading about RAI and I understand it can be a long road to recovery. i am willing to stick with her as long as she will let me.

We did talk tonight and she agreed not to do anything until her blood test come back normal. I am trying to repair the relationship between her and my daughters but she told me to stay out of it. i will probably back off until her levels come back closer to normal. Everyday since the RAI her hyper symptoms get worse although I think the beta blocker works well since I havent seen the rage I saw two months ago.

Again I really appreciate your comments and i am hanging on and supporting her as long as she will let me.

[katherinesc]

#1170261

My heart goes out to you because I want to admit here, the EXACT SAME THING HAPPENED to me, except, I went through with the divorce and was NEVER DIAGNOSED with thyroid disorder. It was the WORST THING I’ve ever had happen. I was married for 13 years and divorced for only 6 months THANKFULLY. I’ve been REMARRIED to the same man AGAIN for another 20 years for a total of 33 years now, but it was a HORRIBLE time in my life. If you would like to email me personally to talk, please feel free to do so. I believe, that after my mother’s death, the stress of that took over my existence. I’m so sorry for what you and your family are currently experiencing and it is my hope that your wife seeks the appropriate medical treatment and can see the loving, wonderful family she has before it’s too late. Know you are in my thoughts.

[trudy]

#1170262

bobkatak wrote:

Everyday since the RAI her hyper symptoms get worse although I think the beta blocker works well since I havent seen the rage I saw two months ago.

I think I read that initially after an RAI the thyroid does put out more T3 and T4, then it slowly dies off. I think that’s why they put people on a steroid for awhile after an RAI, to protect the eyes.

I was incredibly angry at the world until this stuff got diagnosed and I’d been on the Methimazole for awhile. Fortunately I live by myself so I wasn’t causing distress to anyone else.

It is shocking to know that our emotional state is so irrationally influenced by our bodies.

[bobkatak]

#1170263

katherinesc

Thankyou for your response it helps me understand how devestating this disease is and that there may be some hope even if very little.

She is 15 days post RAI today. This weekend her rage was back, I asked her how she was feeling and she said great thats why she quit taking the beta blocker, that explained why her rage was back. I did convince her she had to take them to protect her heart and I believe she has started again. She still will not talk to our daughters and their relationship is getting worse, my youngest was home from college this weekend and they didnt speak ten words to each other. A week or so ago she agreed to wait until mid Apr to move out and file for divorce but i know she already has an apartment and filled out the divorce paperwork so I expect to come home one day soon and her things will be gone and i will be served with divorce papers. I can only hope the RAI starts to kick in and her levels begin to come back into the normal range really soon or it may be too late.

It has been a long painful four months and i will not give up but at some point I have to move on. I have become very numb to her over the last four months and have done everything I can to support her so if she leaves now I know I did everything I could. She is very vindictive right now and does things just to make my daughter that lives us mad, very childish things. It just amazes me how this disease can turn a loving gentle woman into an angry mean person with no conscience.

Thanks to everyone for your comments and support and I will keep updating I just hope with some good news for a change.

[Kimberly]

#1170264

Hello – I’m so sorry to hear about this latest setback. Patients are generally advised to *not* to go “cold turkey” in discontinuing a beta blocker, but rather to wean off the meds gradually under a doctor’s care.

Your wife is still early in the post-RAI process…I continue to hope for a positive outcome for you and your family. Take care!

[snelsen]

#1170265

Hi, I am sending a friendly and supportive world to you and your kids. This has been a very rough ride. I realize that you have gotten solid advice about meds, etc. and I am compelled to comment that we ALL realize that it is not as simple as you telling your wife ANYTHING about what she should/not do with her meds. I don’t know if you will have any success with this tactic, but maybe you can tell her it scares you for her health if she stops the beta blocker. That maybe she should check with her endo. Because Kimberly is right. An abrupt discontinuing of a med, some more than others, can be big trouble.

It is possible that at some point you may need to move on. And yes, you have done everything you could possibly do to support your wife and your children. Plus having a job, and the responsibilities involved in running a household.
I KNOW your world will settle down and get better. Just not sure how it will turn out.
Shirley

[katherinesc]

#1170266

I am so sorry this is happening to you but know my thoughts and prayers will be with you and your family. When I read your posts, it’s like deja vu for me. Just know that this disease can make people feel very off-kilter. I’m FINALLY at the point where I “recognize”, pay attention and cognitive more of my actions when I feel this way. Although I’ve been on medication for 4 years, I can tell you that I’m very “reactive” at times and so sorry for my actions afterwards. This is a terrible time and you’re right, at some point you do need to rid yourself of the stress but it just doesn’t seem fair. I will continue to keep you in my thoughts and hope for the best for you. You sound like a very patient man. I hope your wife will see the light before the darkness surrounds her, as it did for me. I’m very grateful for my husband, but after 6 mos. of divorce, he had moved on too. It was tough asking for his forgiveness, especially since at that point, I still didn’t understand what was happening to me and like I said, didn’t get dx until 4 years ago. Best wishes to you, please keep in touch with us.

[snelsen]

#1170267

HI.
Just a thought from a wife who was toxic to the max (hyper) and had a small baby. You know, at some point, we (and I, at that time) need to be accountable to ourselves, our husband and our children. Yes, there is a time we are kinda crazy. But we really know it. We want to be “fixed,” cured and get back to our normal lives.

There is a possibility that, no matter how wonderful your marriage was, it may be irretrievable. I have no idea. At some point, the “disease” can be an excuse.
There are some people who have enjoyed their hyper state, and want to stay that way. Is your wife one of them? I have no idea. But, speaking from her place, there a point in all of this where she should be working with you, not against you not getting an apartment on her own, and not seeing another man. That is simply not a way for you to live your life. You deserve more.

If it ends up that you end up back together and it is working, then all that I said above, does not apply. But if this goes on forever, I encourage you to think of yourself, the rest of your life, and your kids.
Hard to hear (or read) maybe. But put in the hopper with all the other options you have. And YOU have them.
Shirley, former Graves’ wife, who wanted to get better more than anything else in the world, and hated the hyper crazy state I was in.

[PolishTym]

#1170268

You’ve got some great replies in this forum. Graves’ disease can be tough on the family, and I am glad my Graves’ didn’t come on in the first few years of my marriage. My wife and I had 16 -17 years of marriage behind us and experience overcoming problems thrust upon us. My wife could tell something wasn’t right and she was very supportive when we found out, but I also wanted to feel “normal” ASAP. Through the hills and valleys she learned not to be bothered by my infrequent temperamental moments and I learned when to go for walks or do something relaxing.

If there had been underlying issues in the marriage, who knows what would have happened. It sounds like you’ve been super supportive and understanding.

[keesephoto]

#1170269

I personally do not thing Graves is any kind of excuse for seeing another man or being so mean. This coming from a woman who was extremely toxic, tired of it all, and felt completely hopeless many times with this disease (sort of at that point now). While I personally do snap way more often than I would like or realize…it’s not on purpose. It’s an initial reaction in part because of the Graves that I have to keep in check and an eye on daily, some days hourly.

It sounds like there is much more going on here than this disease.

I have to say it….where is God in this matter? Have you gotten on your knees to him about it?
He wants to be in your marriage and your marriage to be about him and only him. Sometimes he will bring a marriage back by putting him first…sometimes it takes both but either way, you’re not alone in it if he’s in it.

HUGS. I really hope you can find your way.

[bobkatak]

#1170270

Thanks to all for your comments and advice now a quick update.

My wife actually likes being hyperthyroid and tells me that all the time. Her mother died at 47 of a heart attack and my wife just turned 47 so the only thing that is driving her to get help is her racing heart. She doent have severe hyperthyroidism so she thinks everything is great especially her new attitude and weight loss. I say new but after talking with the kids we think she has had symptoms for well over a year.

Yesterday she had her first follow-up 22 days post RAI and her labs were more that twice what they have ever been and in the wrong direction. Her endo wanted to put her on PTU since she had a reaction to methamozole until her numbers go down but she decided she didnt want it she is going to stick with the beta blockers. Her dose was 27.5 mCi which I thought was rather high so I thought she would see quick results. Even the Endo was surprised at her lab results and had the lab recheck them. Anyway unless the thyroid is dumping a lot of hormone right now because a large part of it is dying I dont see a lot of improvement coming anytime soon.

TSH 0.01 range .34-5.6 (this hasnt change since her diagnosis)
FT4 4.08 range .61-1.12
FT3 9.89 range 2.50-3.90

Today after 4 and a half months of threats she moved out into an apartment, we have been getting along ok but her and her daughters still refuse to talk to each other and she told me she was leaving because she could not stand being around my oldest daughter that is currently living with us. When I told her she needed to make amends not run away from the problem she told me they will get over it in time its no big deal. Its amazing what this disease can do to someones attitude. Anyway she left taking only some of her clothes, a tv, and bathroom supplies its like she doesnt think about the consequences. We have a rather large house and she could have easily taken a lot more than she needed to furnish her apartment. One of the last things we talked about was she wanted to keep in touch on regular basis and go out for dinners but i am not sure I want that. I am ready for her to move on so we can start healing what is left of our family. if she ever comes around i will have a hard time trying to reconcile after the things she has said and done so I am ready to deal with this. I guess only time will tell hopefully the RAI does something for her not just for her but for our two daughters.

Anyway i just wanted to thank everyone for your support and providing me an opportunity to vent, this is an awesome website. I will continue to update if anything changes.

[Kimberly]

#1170271

Hello – I’m truly sorry to hear it’s come to this.

I wish your wife had an interest in joining this board or contacting someone at the Foundation via phone or e-mail. We really encourage patients to NOT make major, life-altering decisions while hyperthyroid, as it’s so difficult to make a rational, well though out decision while our system is running on overdrive.

My best wishes to you and your entire family.

[Author]

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