[subnet]

#1058728

Hello all, I’m new here.

My wife was diagnosed with GD a year ago this month. The majority of the hallmark issues began probably 6-7 months before, as far as we can tell – around the time she’d had laproscopic surgery to remove her gall bladder. She gave birth to our son about 6 months prior to that, but she’d always thought she might have thyroid issues for about as long as I’ve known her, despite tests indicating otherwise.

At the time of diagnosis, it was a relief – so many things were explained with one diagnosis. We were worried about some kind of heart disease or some other issue prior to that. Of course, much of the relief was through knowing that there was an explanation, and ignorance (on my part) of what all the disease entails.

This has been a rough year on the both of us. I don’t question that what she’s going through is far worse than what I’m going through, but prior to all of this, we’d been so close – inseparable almost from the day we’d met 9 years earler. Despite treatment with methimazole, she always seems upset with me, sometimes by my very presence. If I’m in the room, I get ignored, if try to talk to her, I usually get short answers. If I suggest another way to do something (like ordering a list), I get told that she can do it any way she wants… which is true. It just seems that the response is awfully curt and way out of proportion to the situation.

I’ve taken on an increasing number of responsibilities to lighten her load at home. She hasn’t had to do the dishes in months, save for washing particular items she may need right away. I’m usually picking up and cleaning after our 2 year old so she doesn’t have to navigate a maze of toys to get around the house. I do all of this with no problems, but it still doesn’t seem like enough, though it’s in addition to the other things I was already responsible for. and despite the fact that I work 12 hour days and she only works part-time. If I have to start cooking, I will, but it may not turn out pretty!

She sits around all day, browsing the internet on her tablet or laptop, ignoring much of the world around her until her friends come around. I think that’s what bothers me the most, to see that she still has her vivacious side, but it’s reserved for others. We’re able to laugh and talk, too… it just seems to rare now.

I’m a pretty anxious person as it stands. I’m a hypochondriac on top of that. For years, she’s been the only person I could talk to about the things running through my head. I’ve lost that now. I understand that it only stresses her out more, so I’ve tried my best to keep these things inside. This is causing me more problems that I’m about to have to start seeing a psychologist for.

I’ve read the open letter to the spouses of GD, and while it was comforting at first, I still feel helpless. Like my relationship is falling apart and I can’t do anything about it. There was a period of time where she was talking divorce, though that seems to have passed, at least for now. I’m too scared to even bring relationship issues up nowadays.

Any ideas for anything I can do? I’m tired, and I don’t want to be. I don’t want to be a burden to her.

[Kimberly]

#1169627

Hello – I’m so sorry that you are going through all of this. Do you know if your wife’s levels have been stabilized on the Methimazole? Having thyroid hormone levels that are out of balance can absolutely affect emotions. I see that you found the “Open Letter…” bulletin. There is another bulletin that talks about some of the mental and emotional changes that can occur with Graves’. It’s called “What’s Wrong With Me – I’m Not Myself Anymore”. (You will need to use your browser’s “back” button to return to the boards after viewing).

http://www.ngdf.org/cms/modules/files/u … 784485.pdf

I don’t know where you are in the country, but we do have several local support groups available (from the home page, at http://www.ngdf.org highlight “community” and then select “find a support group”), and our annual conference is coming up in Boston Nov. 4th-6th. It can be helpful to connect in person with others who really “get” what you are going through.

One final thought – it’s possible that your wife is trying to be “on” for her friends, despite the fact that she really isn’t feeling well. Do you feel that your communication is open enough that you could show her what you wrote on this board? Perhaps that might give her some insight as to what you are going through. Or is there a trusted person (friend, relative, pastor, etc.) who might be willing to be an “intermediary”? I commend you for being so supportive of your wife – but you deserve to have your own voice heard as well.

[subnet]

#1169628

I have no idea what her levels are. I don’t think even she knows. She doesn’t get tested very often, about every 3-6 months or so. She was on 2x10mg/day to start and has been reduced to 1x10mg/day, but it all seemed like guessing (she even said the when the endo reduced her amount he said "we’ll call you if your labs say you need more"). The last test was 2-3 months ago, was told at the time she’d only be tested once more before RAI/thyroidectomy, due in February, I think.

I saw a pair of links in another thread about locating a specialist, and couldn’t find this doctor on either site – leads me to believe he mostly deals with diabetes. He hasn’t provided her with much information – at least anything that she’s able to remember. I’m not sure what she asked about when she went in there, either. I’ve asked her about getting a second opinion about her treatment, but I think she’s ready to have this over with. It may come up again when she’s hypo.

Thank you for the link, it was a good read. I hate that this disease is so poorly understood, but I’m glad that there’s ongoing research into the effects of it.

We’re in Memphis. As much as I’d love to attend the conference, we’re just not in a financial situation to make the trip. I’ve looked for support groups around here, but I haven’t had much luck.

It’s possible that she’s doing that for her friends, but I’m not sure. Communication really isn’t there anymore. When I bring anything up, it usually turns into how I’m doing something wrong. I don’t want to make this sound like it’s all bad all the time – it’s really not. It’s just not the same, and I’ve got my own share of problems I need to deal with. We do have another married couple that hang out with fairly regularly. I may talk to them and see if there’s any way I can get them to back me up.

Thank you for your time. ” title=”Smile” />

[Kimberly]

#1169629

Just a quick comment that 3 months in between labs is pretty common for a patient taking Methimazole, but 6 months is a *long* time to wait…especially for someone who has a fairly new diagnosis. Thyroid hormone levels can get really off kilter during that long of a waiting period.

As all of us on this board have found, Graves’ is a condition where we really have to be assertive with our medical team to get the care that we need (and deserve).

[Halbarad]

#1169630

subnet, I understand; much of my experience parallels yours.

My wife has insisted that her thyroid hormones and thyroid stimulating antibody
are tested every 6 weeks.

Her levels were extremely high during the summer, and led to hospitalization
for thyrotoxic storm. She began 20 mg/day of methimazole. in July.

By about September she was sometimes the woman I remembered… flashes
of her old fun and funny personality. But, she had gained some weight (not
much, not even noticeable to me!), and stopped taking methimazole, although
I only learned that last week when we visited the endocrinologist… during the last
6 weeks I’d asked her once or twice, and she told me she was continuing to take
it, but to the endo she said she’d stopped.

During the last 6 weeks her mood had shifted back to the very challenging
situation that you describe too. It is as though her empathy is depleted,
and it becomes impossible to work together without a major blowup, so
I end up negotiating the boundary between just doing just about all our
house chores, child care, school etc and drawing her in to work together.

It takes a sixth sense to know what she doesn’t care about and disdains,
and know what she prefers to participate in deciding upon, and what she
actually wants to do.

So now she is taking 5 mg/day methimazole. She strongly does not want to
have either RAI or removal of her thyroid. I have a bit of hope again.

[Bobbi]

#1169631

Halbarad: It might help if you tell your wife that "some" weight gain once our thyroid levels go back to normal comes from returning muscle mass. With muscle mass weight gain we do not gain inches — only pounds. We lose muscle while hyperthyroid. This is very bad weight to lose, because having muscle lifts our metabolism, and we can eat more without gaining weight. When we get back to normal levels of hormone, muscle comes slowly back. That is GOOD weight to gain.

It’s very difficult — especially in the U.S. culture which seems to idolize women who resemble swizzle sticks — to gain any weight, ever. But knowing that muscle weight gain is a positive can sometimes help us through the process.

[snelsen]

#1169632

Halbarad, I am concerned that endo has not taken the time to explain this disease to her and to you. Was she also on a beta blocker to control her heart rate when she had a thyroid storm?
I am hoping she could read this post. She will NOT get better unless she is working with an endo to get better. I is hard to tell from your posts, if the endo has suggested RAI or surgery, because he/she felt that she was not responding well to the ATDs (meaning that she should have felt a lot better and more like herself) which it seems she did for a short while, but this is a serious illness she CANNOT mess around with. People die from thyroid storm, they really do. She cannot regulate her own meds. Someone needs to tell her this, probably not you, based on your current situation.
Is there ANYONE she will listen to? Does she have a primary care doc you can talk to about your concerns?
I am not sure is she is taking 5mg because she has decided to, or if it is prescribed. But the labs cannot be relied upon, nor can her symptoms, if she is making decisions about her dose of ATD. AND, ATD’S work very well for a few people, but not all people. RAI and surgery are very good choices to manage Graves’ ATD is too, depending on working closely with the endo regarding symptoms. She certainly does not need antibody testing every six weeks, and I am surprised the doc orders it, or that your insurance will continue to cover it.
I wonder how your wife can learn about graves’ and begin to believe that she will be better again, but it is a path that takes a while, and it is a lifetime situation. I am so sorry it is rough for you right now. I was one of those crazy, argumentative, hostile wives at one time. It was terrible for my husband and child.
Do keep writing, it really is helpful to know you are not alone.

[trlrunner]

#1169633

Dear Subnet,
Just a few words of encouragement for you and your wife:

I was diagnosed with Graves the first of March and I have experienced all of the usual Graves symptoms including the symptoms your wife has displayed. It is difficult because we aren’t ourselves and we know it but can’t change it because of the crazy hormone imbalance raging within our bodies. My hubby has been a trooper through it all. Just TRY to remember that your wife just isn’t herself right now and her reactions toward you and life in general JUST AREN’T THE REAL HER. I know it’s hard, because it feels so real, TRY to not take it personally because it’s not you. And it’s not the real her. Hang in there, try to not become discouraged, and don’t lose hope. Encourage your wife to continue diligently with her treatment and both of you educating yourself about Graves will be invaluable.

[GinaLco]

#1169634

I read your post for the first time today. If you hadn’t mentioned the fact that you have a 2 yr old, you were describing me. I was surprised that you mentioned, your wife was going to have RAI pretty soon. I was diagnosed in 2007, confirmed diagnosed in December 2007. I started seeing my endo in Jan of 2008. I was put on Tapozol and was on it for 2 yrs. I personally made the choice to have RAI in Jan of 2010. For most of my Hyper stage my husband was in Iraq. (he missed out on the yelling and crying everyday). My husband does everything he can but pushes me to do more around the house. I do what I can but for me it feels as if he doesn’t get that I can’t do it all in one day. He is very frustrated with me. My thryoid lvls have been "normal" for 8 months now. Our relationship is not going well. Divorce has been tossed out there many times. There are days where I have, what I call my Ally McBeal moments. I can actually picture myself pushing his head into a wall. I would never do it, just can picture it.

This disease sucks to live with. Not just for us who have it but for everyone around us. Even without a thyroid we still have GD. It never goes away. It took me 4 years for my GD ahh haa moment. I was at my endo and complaining about how bad I was feeling. She told me, your thyroid levels are fine and that’s all I deal with. Everything I would need to see my primary for. Endo’s have no clue what GD is doing to us except for our thyroids and their side effects.

I feel like I need to stop now because I notice I’m rambeling.

[RebeccaJT]

#1169635

Hi

Poor you! What a difficult and heart breaking situation for you and for your wife! I am not married but I do share my house with a family member who has suffered from my mercurial moods now and then, it is called Graves Rage.

Just to echo other comments here. I have been on ATDs for nearly two years and whilst medically I was out of ‘danger’ I have had a lot of symptoms that won’t go away, and despite turning up ‘normal’ and hypo results, I have still felt wretched. It has taken me a long, long time to realise that there is no quick way out of this situation, this is a serious illness. However I struggled because my doctors seemed to think that all the horrific symptoms I was reporting were a price worth paying for the promised land of remission. The actual odds of remission for someone like me are slim.

I finally went to see an endocrine surgeon for a second opinion (a very, very well regarded doctor here in London, UK) who told me that in severe cases like mine it is the INFLAMMATION in the thyroid itself that is causing most of the symptoms, not the hormone levels. My thyroid has been under attack for so long, and working too hard, and sputtering along that it is damaged beyond repair. There is NO other course of treatment for me, I have to have surgery. Believe me, I really, really wish I’d come to this conclusion much, much sooner.

I appreciate that this must be an incredibly worrying time for you and your wife and I appreciate that you just want her to see sense, but I guess GD symptoms combined with denial is a fairly powerful combination!! I would just say that whilst us people with GD aren’t really ourselves when we are sick, it is still our thinking and our actions, and we are responsible for it.

No one needs to accept abuse, no matter what the cause. Perhaps setting a few boundaries might help push the consequences and reality back over her side of the line? E.g. ‘If you continue to speak to me like that, I am going to leave the room, it is my belief this is your untreated GD, and whilst I love you, I am not prepared to put myself through this’. And then, ‘I am now going to leave the room, if you continue to shout at me I am going to leave the house and go for a drive for an hour’ – etc etc. I know it’s very hard, but in all but the most life threatening situations, it is NOT loving to rescue another adult from the natural consequences of their own actions or to do for them what they can reasonably be expected to do for themselves.

I have to practice this with someone else who is ill for different reasons, and it truly is very hard work (the way out is to sit with feeling like the ‘bad guy’!!!!), but it does also allow people to take responsibility for themselves. That ultimately, is the only way adults can solve problems for themselves, by saying, ‘This is MY problem, and what am I going to do about it?’.

Much love to you both,

Keep us posted.

Best wishes

Rebecca
x

[Bobbi]

#1169636

Well, GinaLco, if I were you, I would find me another endocrinologist. It is possible that whatever is going on is not your thyroid….but it is your doctor’s responsibility to look for what IS causing your problem. There’s a tendency for endos to say, "It’s not your thyroid," when we come in and insist that whatever physical issue is plaguing us MUST be thyroid related. If our levels are normal, they will often use those words. We must turn it back on them. "Well, if it’s not the thyroid, what IS going on?" Any doctor worth your health dollars needs to continue looking,and not say, as you indicate yours did, that the line stops at the thyroid.

[subnet]

#1169637

Thank you, everyone, for your input. It offers hope, but I’m not sure if where she is now is where I may have made it seem, so I’m going to try to clarify:

It’s probably worth pointing out that she’s not having the Grave Rages anymore. She’s decided on RAI treatment if she doesn’t go into remission, but with her not getting checked, it’s hard to say what’s going on with her thyroid. She could be hypo now for all we know.

There’s something always wrong with her – pulled muscles in her back, sick, tired, stressed… Though she doesn’t have the rages, she’s mostly cold and distant, and she generally would rather be absorbed in whatever she’s interested in at the time than spend time with me or our son. We usually never do anything on our days off together, aside from go to a friend’s house where she generally doesn’t directly interact with me. She does eventually spend time with my son and I, but it seems like it just isn’t really what she wants. Her interactions with me in particular seem really impersonal. When I ask her if I’ve done something, I’m usually just met with stoic silence. It’s getting REALLY hard to deal with. I have no power in the relationship, so trying to set boundaries would either be ignored or shot down.

What’s really starting to bother me is that she seems to hate her home life. She loves her friends and the people she works with, but any good mood she may have been in at work seems to be gone when she gets home, and there’s always an excuse for why she doesn’t want to do something. She says that she loves me, but the dynamics of our relationship have changed so drastically it brings me to tears. I’m not even sure if I can believe her.

If you’ve dealt with hyperthyroidism and have been married, do things like this happen despite treatment with ATDs? I don’t want my marriage to fall apart, but it’s starting to seem inevitable. It’s to the point that I’m about to see my doctor about anti-depressants and therapy to deal with my own grief, and I’m losing hope that RAI will make anything better.

Any encouragement that can be offered in light of this would be greatly appreciated…

[snelsen]

#1169638

Gosh. I am sorry about your situation. If she proceeds with RAI, she MUST go to an endocrinologist to get labs, move on with this. And she must learn about it. It is hard to separate Graves’ from your marriage issues, but I am inclined to be very concerned about YOU. What if you tell her that the next period of time cannot be like the past year in your marriage, and you need to work together to get therapy and help to see if this marriage will continue. This situation is not good for any of you.
What would she say? Or, if you don’t want to approach that whole thing, tell her that you both know things are not ok in the marriage,and at this time, you are hanging on to the fact that it is because she is hyperthyroid, has Graves’. But it can’t continue. That if RAI is her plan, she needs to move forward with it. It all takes a while, so it is not a quick fix. Probably surgery is the quickest fix, but as I recall, she does not want to do that. But she better take action and get well. Any family members that can jump on to talk to her/ She needs to own her disease, understand it, and do something about it.
It’s really hard to jump into another marriage, but it sure sounds like life is miserable for you, and to some extent, her. Ask yourself if this is the way you want to live the rest of your life, then see what you can do to get her to listen to you, and you to her. Again, it is tough and i am sorry.

[Halbarad]

#1169639

subnet… very sorry too. By best advice is to hold tight, get way more
frequent T3/T4/TSH/TSI monitoring, and learn up on the meaning of
the levels… maybe you can correlate the levels with her mental state.

Yoga and regular exercise have helped me and my wife a bit. 2-3
times at the local gym. Some sort of common time together is
important.

We did not have good luck with counseling while the Graves was
undiagnosed… my wife literally blew up at the counselor, and
didn’t enter into a level of trust with that whole endeavor.

snelsen…. my wife is very educated (science PhD) and also not
really convinced that methimazole is more powerful than…
calmness in the home, control of diet, etc. But she does seem
committed now to 5mg/day regularly for a while… she definitely
acknowledges the seriousness of her situation, but just can’t quite
believe Western medicine has gotten it right (she is Chinese).
Well, we’ll see at the next test.

An important thing… her TSI (by which I mean the antibody that
stimulates the thyroid, hope I got the letters right) has been dropping.
A hopeful sign. That is the molecule that is not influenced by
methimazole and, when low, might mean remission. In an ideal
world I’d correlate TSI with… gluten, red meat, all the pollens in
the air, dust, stress, etc.

[subnet]

#1169640

I do apologize for turning this thread into a discussion about my marital problems.

There was a bit of a blow up last week, and long story short, she’s going to go and move in with her mother for a few months. We’ll try again after some time has passed. I’m leaving her on my insurance and encouraging her to see her endo to get checked and schedule the RAI as soon as possible. My concern is that her mother lives an hour away, AND the two of them don’t get along in close proximity for very long. I’ve seen it time and again.

She continues to blame me for things that have happened in the past, things that just shouldn’t be that big of a deal in the grand scheme of things. Meanwhile, I’ve become a bit of a dullard, never leaving the house, not involved in anything outside of work, don’t hang out with my friends… the list goes on.

Pragmatically speaking, this is probably the best thing for the both of us, but it doesn’t change my heartbreak at the fact that it’s come to this. It’s better than divorce (which she was originally demanding), but the uncertainty is just overwhelming.

I’m seeing a psychologist now and have started on anti-depressants, and I’ve got a plan for dealing with the sudden change. We’ve worked out a custody agreement for our son, so looking at this objectively, things could be much worse.

Thanks again for all the thoughts and advice. I’m going to take the time to work on myself and try to be prepared for whatever comes next.

[Author]

Posts