[StillHope]

#1017968

Hello all,

I am new to the site and have found it extremely helpful so far. I am looking for as much advice as possible. Our marriage is about to end.

I am the husband of a wife that has GD and we have been struggling with this for the last 6 years.

My wife was first diagnosed with GD in May of 2005 at 22 yrs old. She had RAI treatment that same month. Her TSH levels have never been stable. Everyt three months for the past 6 years, she is either high or low and they have adjusted her dosage everytime. In 2007, her General Physician prescribed and Anti depressant cause we hit some major hard times. In October 2008, she gave birth to our son, but never got back on her Anti depressants. From there it kept getting worse and worse. We finally got her to see a new Endo in Oct 2010 since her old one kept telling her that the symptoms have nothing to do with her GD. The new Endo in Oct 2010 finally told her that everything she is experiencing has to do with her GD. He then started her on Paxil to help with the Depression and Anxiety. But yet she still thinks that nothing is wrong with her and that her GD is taken care of. We ended up going to another Endo in March 2011 who diagnosed her with Hashimotos Thyroiditis. But yet she still don’t think this has anything to do with her GD. In April, I found out she has been having an emotional affair with a guy she works with. I kind of figured cause she has pushed away everyone that loves her and has been hanging around with the wrong crowd. She had been telling me that she doesn’t feel the same about her son as she used to, all she thinks about is death, and she wants to run away and die. After finding out about the affair, me and my son went on a vacation to see my family(it was pre-planned and she was supposed to go too.) While I was gone, she became extremely suicidal and went and stayed at her mothers house. Her mother(who is on my side with trying to get her help) told me she said she can’t control her thoughts anymore and needs help. Upon my return, she set up an appt with a Psychiatrist and in 35 minutes was diagnosed with Type 1 Bipolar Disorder, OCD, Extreme Anxiety, and Depression. Now she is on 2 different meds for her mental state. All, while she still hasn’t been regulated on her sythroid. I am the one online every night searching for answers, I am the one reading books to try to understand, I am the one that tries to be there for her all while she is pushing me away and staying in denial. Because of her mental status, I am afraid to leave my 2 1/2 yr old son with her. She has numerous other symptoms like, weight gain/loss, irritability, aggressiveness, Atrial Fib, and many many more.

How do I help someone who doesnt want it? How do I be there for someone that pushes me away? How do I get her to see different drs when she wont go? How do I inform her about whats going on when she doesn’t want to listen? How do I help someone who is in denial? I know my vows said "In sickness and in health, til death do us part," but if she is unwilling to get help, I can’t keep myself in this situation and more importantly my son(who sense what she is going through).

Any Advice would be much appreciated.

[Bobbi]

#1061902

My heart goes out to you. What a difficult situation you find yourself in right now!

I certainly don’t have any answers for you. And, as you have discovered, doctors have different opinions, as well. (I.e., yes it’s GD related, no, it’s not GD related.) I will say this, however: Just because someone has Graves Disease, it does not mean that every other health issue that springs up is related. We can, and do, have people who suffer from depression, who would probably have suffered from depression even without the Graves. And Depression, even all by itself, is a horrible disease. One of my family members died because of it – and it had nothing to do with thyroid issues. You might find a book titled "Darkness Visible" enlightening. I believe the author was William Styron, the novelist. But this book is about his personal battle with Depression. His writing skills helped me to understand just how awful true Depression is, and how little I understood of it.

It might also help you to seek counseling for yourself. I did that when my relative was going wonky with Depression, because her disease was impacting on all of us, myself included. I needed to keep my head clear for myself, as well as for her. While you might not be able to fix things for your wife, you may be able to improve things for yourself, and by extension, for your son.

I do wish you good luck.

[mamabear]

#1061903

StillHope wrote:I am the husband of a wife that has GD and we have been struggling with this for the last 6 years.
Hello and welcome
We ended up going to another Endo in March 2011 who diagnosed her with Hashimotos Thyroiditis. Hopefully this is a good Dr. and he will get her thyroid levels in check. But yet she still don’t think this has anything to do with her GD. If her levels are off I can see how she is not thinking clearly thus thinking this isn’t her GD. Denial can happen. In April, I found out she has been having an emotional affair with a guy she works with. I kind of figured cause she has pushed away everyone that loves her and has been hanging around with the wrong crowd. I am very sorry to hear about this, IF her levels are off and she is not herself I can see this happening but it certainly doesn’t make you feel any better. IF it is truly her Hashi’s that is making her an emotional wreck than you have to get to the bottom of it. From what you are saying she was different before this so I would say with just the little info you have given us that this is her health that is affecting her judgment. It still stinks and again I’m sorry.
I am not a fan of any dr that knows someone for 35 minutes diagnosing a patient that has GD or Hashi’s. To me they see dollar signs and I dont like that. Her Hashi’s might be causing her altered mental status and if her levels are not corrected then it doesn’t matter what meds they put her on, her levels will cause her to continue the way she is. I would make sure that her Endo is in clear contact with the Psych dr. and get the endo’s oppinion as well. Like someone already said, you can have GD/Hashi’s/Hypo and also have other issues that are not linked to GD/Hashi’s/Hypo. Her Synthroid really needs to be checked often and find a dose that is right for her. Try try try not to take it personally, this is not about you, your son or anyone else but your wife. She can’t help it or might not be able to help it, you are a good husband and parent for trying your very best to find the answers.
Do you go with her to her appt’s? If not you should, you should also speak to her dr. while she is in the room and maybe while she is out of the room as well depending on her state.
Also speak with the Psych as well and explain the goings on at home as well. Keep in contact with both the endo and psych so all 4 of you are in the loop about her care. She might not be able to take care of herself at this point so it is up to you to make sure that she gets the best care and if this endo can’t treat her properly then go find another and another till you find someone that work with her and you to get her dose right.
Make sure she knows how to take her synthroid and what not to take with it or before or after it, her pharmacist would know this information best.
Will her synthroid be effected by the meds the other dr. put her on, again pharmacist wuold know the best answers for you but also speak with the dr’s as well.
The more you are involved and they see and hear you the more likely the will screw with her in her condition. Meaning= they wont take advantage of her.

How do I help someone who doesnt want it?
Try not to take it personal right now, this is not her that is acting this way, this is her disease. Find a good dr. get her levels where they should be and kick this disease’s butt and hopefully you will get your wife back.
I would document everything that you are going through and she is telling you. Even if it’s just in a notebook and jot some thing down for a few minutes a day before bedtime. It helps you work through it and might help explain to her what was going on if she can not remember.
Any Advice would be much appreciated.

[Kimberly]

#1061904

Hello – I am so sorry you are going through this. The suicidal thoughts are definitely a concern – if you don’t have any local resources where you are, we would be happy to set up a call with our founder, Nancy Patterson. Nancy has a lot of experience with patients who have suffered severe mental and cognitive issues as a result of their Graves’. If you are interested, you can send an e-mail with your contact info to info@ngdf.org.

The fact that your wife has gone 6+ years with constantly fluctuating thyroid hormone levels is no doubt NOT helping matters. Do you have confidence in her endocrinologist? If not, here are a couple of referral sites for endocrinologists:

http://www.aace.com/ and http://www.thyroid.org/.

On the AACE site, click on “Find an Endocrinologist” link on the right-hand side of the screen. Be sure and select the specialty “thyroid dysfunction” when doing a search on this site.

On the thyroid.org site, move your cursor over where it says “Public & Patients” (towards the top center of the screen) and then click on “Find a Specialist.” All of the doctors on this site have expertise in thyroid issues.

Also, the Graves’ Disease Foundation has two bulletins that might be helpful to you.

From the home page at http://www.ngdf.org, click on “publications” (ignore the drop-down options) and then “psychosocial & emotional effects.” There is one called “An Open Letter to Husbands of Graves’ Patients” and another called “What is Wrong With Me? I’m Not Myself Anymore”.

Best of luck – please keep us posted on how you are doing!

[erica]

#1061905

Thanks for not giving up. I am so sorry to hear this happening to you, I felt compelled to write because GD totally affected my past marriage and I see many parallels with what you have shared. I had met my ex-husband just as GD was just creeping into my life, I had many symptoms then, but we thought they were just stress and did not seek treatment. He did not know me without GD to know the real me, so as more symptoms started to worsen, so did our relationship. I got very depressed, would cry all the time, and became suicidal. I was not always rational in my thinking and my thoughts raced-but as that was happening I did not realize it. When I finally did see a doctor, I was in a storm state and literally felt crazed. After seeing MANY doctors, I finally found one endo who understood and helped. Like you guys, I had endos telling me opposite things (that is a whole different post!) What is important to take from this is what she is experiencing, in my opinion, is from the GD. I realize other people and doctors may say she has depression AND Graves. Of course she could, but it IS possible that all this stems from GD.I say this from my personal experience, because when I went into remission, I was the normal erica again, no crazy thoughts of dying or depression, the crying and manic moody outbursts were gone. I didn’t need any medicine for years. I really feel for you and get frustrated when I hear she hasn’t been able to respond well to meds. To me it sounds like you need to search out a new endo, but when she doesn’t want to it can make it difficult.

Like your wife, when I was very ill with GD, I didn’t want to admit it. Anxiety disorders are more talked about today and in movies, so I separated the two in my mind, and felt it had nothing to do with GD. However, over time I came to realize they were completely bound together (at least for me). Does she drink caffeine? Does she eat things with high amounts of iodine? Also foods with red dye number 3, has high amounts of iodine I have heard. I have read that artificial sweeteners are bad for folks with Graves (studies were done as former President Bush and his wife both devoped GD). I have links for that if you are curious. I think the best thing she can do is eat healthy, get enough sleep, have a routine, get a new endo, and have a family intervention-yeah I know that sounds weird, but it helps. In that state of mind, I couldn’t accept I had a problem. My mom would show me photos of happy times in the past and showed me family videos. I couldn’t dispute the fun memoires of myself that I saw. I wanted that back again. It led me on a hunt for an endo that finally helped.

Does her therapist know and truly understand GD? One that understands this behavior is “not normal” for her without graves? Getting one that even has GD would be great. What about getting her to a support group (bribe her if you must) once she hears others with similar feelings, maybe that could help her find the drive get new treatment? If I had seen a shrink during the time I had bad levels, I swear they would have had me committed! I would be careful with the shrink, on one hand, her talking to someone can help her pour out all the feelings that fill up her head, however, sometimes too much talking can twist up her thoughts and feelings, spiraling them into being worse. That is what it was like for me. I needed a strong structure and routine, not time to inflate my crazy thoughts. Having set goals also helped because I was paranoid and worried a lot about the future. Maybe you and some other close family members of hers can print out data that explains those are symptoms of the disease and they are not the “real” her. Of course it seems logical to us that anyone with fluctuating levels are going to have ups and downs, but to her it doesn’t, she (in my opinion) needs a small family intervention. Try to choose people and a situation that will minimize stress. Perhaps reminisce of a fun family time (when she was well). My mom “just happened” to have pics in her wallet and an aunt just “stumbled across” some very important GD info she printed out and brought with her to our “lunch” (intervention).

It is awesome that you are sticking by her side, but make sure you take time for yourself. The stress you are carrying can affect your own health as well. You might want to see a therapist for you. Go get a massage, take a walk, go out with a friend-and during that “you” time, you are not allowed to worry. Take care and know others are send you their thoughts and prayers. Please keep us posted.

[genevieveB]

#1061906

StillHope,

i feel for you.

My boyfriend of the last 15 years just left me this week stating he no longer loves me.
He’s been living with GD for the last 2 years (that we know of…) and he is waiting to get the iodine pill.

Monday, he said to me that he wanted to be left alone, crying in foetal position, dind’t care for anyone, including me.
He stopped taking his wellbutrin over a few weeks ago, whithout seeing a doctor first.

His endo asked him to stopped the tapazole last fall to see if is thyroid was back to normal.
After 2 months, his thyroid levels where up to the roof…so she put him on the waiting list for the tx.

Since then, i barely recognize him.
The gentle giant i used to love is long gone and i was left with a Charliee Sheen type of guy…

He was sexting a 15 years old on facebook (he’s 35 by the way…) and when i confront him about it, he said to me that she understand him, she’s a friend and that she is is confident. This is not him at all…he’s a faithful guy who used to be kind to me and to respect me.

He’s listening odd music and dress like a teenager.
He is angry at me, sometimes for no reason, sometimes for little normal things. He was more and more distant and had mood swings like crazy.

When i asked him to wait for the treatment before taking such a decision, he told me that his GD had nothing to do with it.
He says he’s seeing a social worker and a psychologist and that is decision is made. I don’t care how many social worker or psy he sees, they don’t know GD and cannot help him at this point.

I would accept it knowing he’s ok and not in distress like he his right now but it’s tough thinking he’s making such a decision in a flash when is clearly not in his right mind.

[genevieveB]

#1061907

good luck for all of you in that situation.

This is not easy.
I’ve been trying to help my boyfriend of 15 years who has GD but he doesn’t want my help.

He’s so cold and distant and broke up with me this week.

he says he’s fine with the decision of leaving me, he wants to be alone (despict the fact that he’s clubbing right now…) and says he’s ok with selling the house and not keeping any of the furniture or his stuff. He’s so confident and cocky, it’s very odd since he use to miss me when i was leaving the house for 2 hours to get my hair done…

He wants to quit is job, he wants to start fresh.
He seems out of his mind, inventing things that never happened . He says one thing to me and while staying at his parent’s house since the break-up, he told them something else. This is non stop, my stepmom called his stepmom to make sure they knew what he was up to since they don’t know GD and thinks it’s the same as hypo.

He also stopped taking his antidepressants, like he said "he don’t need them", which i’m pretty sure doesn’t help…

So, not good news, i’m pretty scared for him right now and there’s no way i can talk to him since he doesn’t want me to.
He said he was spending time in Quebec city for the week-end which scared the hell out of me since i was wondering if he were outhere cheating on me , turns out he’s at his parent’s house, 15 minutes away from me…he seems in denial of his condition, saying he found peace (while having the worst labs possible for his thyroid, he’s in a thyroid storm right now) . Ironic.

So, maybe it’s me, i might be crazy as well, but something just doesn’t make sense.
Take care of your loved ones while you can. Good for you StillHope, for me, it’s pretty much NoHope.

thank you for letting me explain my situation, i’ve been living this for 2 years, going nut and ashamed of myself for being so frustrated, because, let’s face it, he’s ill so i must be a witch for being tired of it. Well, that was before reading you guys. now i know the severity of the disease.

So, thanks again, felt normal while writing my comment. It was good feeling normal again.

[Kimberly]

#1061908

GenevieveB – Thank you for sharing your story. By the way, there were two similar — but not exact — posts in the "queue", if you would like one of the moderators to delete one, let us know.

If you scroll back up a couple of posts, I included some instructions for accessing an article on the mental & emotional impact of Graves’ Disease. Having our thyroid levels off kilter can absolutely affect our emotions, our behavior, and our thought processes. Your boyfriend will probably look back and be able to see this once he has been treated…but unfortunately, it’s pretty difficult to *make* someone understand this while their Graves’ is raging.

Please feel free to vent here if you need to — we truly understand what you are going through.

[genevieveB]

#1061909

Thanks a lot Kimberly for your kind words, let’s just say i need those these days…

I already saw the page you were talking about, and i send it to my boyfriend, well, my ex-boyfriend.
He said that this as nothing to do with GD and even if he gets treated, he says that is decision is made and there’s no way it can be changed.

I mean, i read all those posts and articles stating that GD can turn the sweetest one into the biggest monster.
I called his new "friend/confident" to explain to her that he’s not well in the moment and if she cared for him, she would encourage him to seek the right help.

She said to me that he’s doing real fine (she knows him since april, let’s face it, i don’t think she can tell the difference between the GD and the normal him…) and she encourage him to be free, careless and happy, even if it means losing the house and breaking up with me…He told her he was single since they started to talk, which is not true.

And to be honest, i dont recognize him at all. What’s happening when you are in the GD state ? Do you realize that you are not yourself anymore ? And after being treated, do you realize what you have done ? Is it possible to make such a big decision while being in that GD state and to think that even after the treatment, it will be the same decision ?

I’m so lost right now

[Ski]

#1061910

Being hyperthyroid is absolutely horrible, GenevieveB, and unfortunately it isn’t necessarily something we can objectively evaluate about ourselves, so we most often recommend that all patients refrain from making big life decisions while in the throes of hyperthyroidism. Of course, that’s only good advice for someone who agrees the changes are caused by GD, which obviously your loved one does not, so that makes it only more frustrating for you.

I don’t know what to tell you, exactly, but the fact that you’re here speaks volumes about your love for this individual, and so I would just urge you to keep your distance right now, but please don’t give up. It’s quite possible that, following successful treatment, he’ll return to himself and come crawling back, realizing fully the bad decisions he’s making right now. RIGHT NOW he is not likely to listen (as you’ve found), and things may get far more crazy before they stabilize. Just forewarning.

Keep learning about GD yourself, because it will help in the long run if everything works out. I’m so sorry you’re in this position. Many times I think our loved ones suffer more than we do, because watching may actually be worse than living it, in some circumstances.

[genevieveB]

#1061911

Thanks Ski,

Though I wish that this comment would come from him, i’m glad to hear it from someone.
i really appreciate your comment, it’s so accurate.

Like you said, right now, he’s not likely to listen or to admit that GD is taken over his life.
I kinda suspect he likes being in that state because he loses weight, he feels like he’s the king of the world, and he can go pretty much whithout sleepling, so, what’s not to like… It was the same thing 2 years ago and i had to urge him to see the doctor when the symptoms got back. He kept telling me he would go after losing a certain amount of the weight he gain back when the endo was playing with the medication. Promises, promises.

I will keep my distance as i need my sanity back and just see what the future has in store for me.
I will not be of any help if i’m drowning with him.

Thanks a lot for the advice and the support, means a lot to me.

[KAM]

#1061912

Hi,

I will try to keep this short. Reading this pretty much recaps the last two years of my marriage. I honestly think my wife left our marriage more than she left me. That being said things were pretty much the same. People say to find an Endo that understands and find a therapist that understands….. Where? Endo’s think that as soon as they get the patients numbers back in the box they’re good. That’s like saying that an alcoholic is cured as soon as they stop drinking. I personally feel there are a lot of parallels to substance abuse. The mind is being overly stimulated for too long. With substance abuse you have something to point at. Not the case with GD. Sure, the doctors can point at a lab report but that’s just a piece of paper. As with substance abuse the spouse gets sick too, but in a different way. As it has already been stated you need to take care of yourself first. It’s like the oxygen mask in the plane, you are no good to anyone once you pass out. Put your mask on first. The book The Four Agreements by Don Miguel Ruiz helped me tremendously. #1) Be impeccable with your words. #2) Don’t take anything personally. #3) Don’t make assumptions. #4) Always do your best. I have also found Alanon to be very helpful along with Spring Forest Gi-gong. There is also Tia-Chi and yoga and of course fishing to name but a few.

I hate to use the word nothing but there was very little that I could say or do to change her mind about anything. None of our problems had anything to do with GD. I really found no one willing to help or take a stand either. People really don’t want to get involved and they absolutely don’t want to take sides. So where does that leave you? Therapist won’t take a side. They will simply help the person make whatever decision is right for them. The Endo said they where fixed so it must be something else, and it is something else. Basically every bad thing that has ever happened comes up to the service and over takes every good thing that ever happened. We all need to retrain our brains to think about the good stuff. Pretty hard to do when your thyroid is all over the map.

When you log in it will show private message ( 1 ) I’ll leave my contact information there for you.

kam

[genevieveB]

#1061913

thank you Kam.
Did not found the private message though.

It’s exactly the same for me, i think he left our relation more than he left me.

Even if they are seeing a therapist, the therapist doesn’t understand the disease, so, what’s the point of seeing a therapist if they cannot help…Also, i would have liked to be part of the therapy, just to make sure i had done everything i could.

i agree with you, i do think it becomes like an addiction for them.

I’ve asked him to explain to the endo for the last 2 years what GD was doing to him and to us.
Didn’t seem to make a difference. She seems great but i don’t think endo are seeing a human being in front of them, they are seeing a disease. Well, they see the person a few minutes and send them home. We do have to live with them and witness the damage being done by GD.

I will put myself first starting now, and just breathe, relax and take a stand for myself.

Again, thanks a lot, it’s the only place i feel normal, no one can understand the life with GD unless they are living it.

[Halbarad]

#1061914

Stillhope… although this is a few months after your initial post, I too experienced
much of what you have experienced. For about the last 5 years, I felt like she
was so different than the woman I married. None my friends understands. A year of
weekly therapy didn’t help. She became relentless and uncompromising,
but clearly in a lot of pain and not really under her own control anymore.

If it were the year 1650, I would have said she was `possessed’ at times.
The analogy with her having a constant horrible toothache is a good one too.
Tiny things would trigger her, and since she has insomnia, a bad rage could
go until 5am. Over the past year the rages gradually became more frequent,
until the big ones (with glasses and knives getting thrown, etc) happening
weekly. Little ones daily.

Basically there is no understanding of this issue out there… few people can
imagine what it is really like. Our culture attributes rage and violence to
men, and there is no or little understanding (therapists, psychology, family,
friends) if the situation truly is reversed.

I desperately wanted to help her, and did just about everything I
could to accommodate her. I say `just about’ because I did resent what
I perceived to be her irresponsible behavior (in a variety of ways).
Sometimes I’d encourage her politely and in an upbeat way,
but just as often I’d be irritable, annoyed, or numbed and withdrawn.

I felt trapped.

The *only* place I’ve found someone who kind of `gets it’ is in this letter on the
website here…
http://www.ngdf.org/cms/modules/files/u … 762043.PDF

About a month ago my wife had what is called a thyroid storm… lost 12 pounds in two
days; she kind of looked like a picture of a starving child in Somalia. Luckily her
GP insisted she go into the hospital, now she is on methimazole. Reviewing her
test records her hormone levels had been way out of line for a while, but somehow
the diagnosis had not been made until a true crisis occurred.

Haven’t had a big rage since, and fewer little ones. I’m not sure her full emotional
depth has yet returned, though… it was as though she had become narrow,
with rage being the only place she could go. Less rage now, but her full compassion
and understanding is not all back yet.

My attitude has improved immensely. Now taking care of her feels right again,
and not being a servant to a raging master.

There might well me multiple problems but we have to really address the thyroid
issues first… they are the devil we know.
And that might turn into a long road. No-one really knows the
origin of the root condition that leads to Graves disease, and there is only a little
knowledge of what correlates with it… diet, pollen, stress, etc.

Stillhope, good luck. I almost want to organize a group for Graves’ husbands
over Skype… I think that might be the only understanding group imaginable.

[Author]

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