[aimee]

#1018668

I know this isn’t a grieving site and I don’t want to panic anyone on this board with my blunt subject line, but I do want people to read this post and help me better understand what happened to my husband. Had I known about this site or had the time to look for it, perhaps he’d still be here with me, but the period between his diagnosis and death was less than a month and it has taken more than a year for the fog to lift and for me to seek answers.

Back in mid November 2008 I began to notice my husband looking very thin. He relished my frustration as we had just had our first child four months prior and I was struggling with the last 10 lbs of pregnancy weight, while weight seemed to fall off of him with every bagel or burger he devoured. We laughed about it at first, and chalked it up to new baby stress and the fact that he had been working on three major deals at work. But then he began to "feel" thin. His arms, once muscular, were a bit wasted looking; he complained of painful joints and had a hard time lifting heavy objects. The weightloss was not so severe that his friends noticed, but paired with the joint pain, we decided to go get some tests done. About 2 weeks from the time his journey began, he was diagnosed with Graves. I distinctly remember him coming out of the doctor’s room looking perplexed by the diagnosis ("A woman’s disease?") and repeating what the doctor had said, "Don’t worry…it’s not Grave!" Hilarious.

He was given two medications: Propylthiouracil & Atenolol. The prescriptions were filled on 11/21/08. Each day from that point forward was difficult for him. He was in a lot of pain, which the doctor told him would be the case while the medicine stabilized the thyroid. Two weeks it would take, we were told. After a week, he still felt lousy and started calling his doctor to see what he could do. A number of calls went unreturned, then his doctor finally told him to double up on the medication. This seemed to make him feel better–pyschologically, anyway–but it clearly wasn’t enough.

He was turning 50 in December so we were planning a big party for Dec. 7th. People had flown in from all over the world to be at his celebration. He had also gained two pounds which really made his day and he didn’t complain once about joint pain, fatigue or any of the other side effects he had been feeling. The party was a blast. Food, cocktails, DJ, dancing, all of the people he cared most about in one room. He gave a speech and was very emotional. It took a lot of people by surprise, but it was in line with his mood the entire evening. At around 1am, he pulled me aside and said his friends wanted to carry on, but that he was really, really tired and just wanted to go home. He looked physically spent, and I was right there with him–we’d been "on" all night long. We drove home, paid the nanny, crept into our son’s room, oohed & ahhed at him in the dark as we had done for the past 4.5 months, opened some of my husband’s gifts, then went to bed. It was 2am or so.

An hour and a half later, he took his last breath, the details of which I won’t go in to.

The initial autopsy report was inconclusive, so they did another. While we waited for that, the toxicology came in. It was clean. The medical examiner finally ruled cause of death a cardiac arrhythmia due to cardiomyopathy due to hyperthyroidism. Esentially, a big long explanation for heart failure caused by hyperthyroidism. The examiner said he had fibrosis on his heart, but couldn’t tell if it predated the thyroid condition or was a result of it. I knew about the arrhythmia, but it was no big deal from what I was told; that a lot of people have them and they’re no worry. And that’s all I’ve been left with.

So, what I want to know from anyone who is educated on this subject is how someone who hadn’t been sick from this disease for very long or is told by their doctor it isn’t grave, suddenly dies from it. He was being treated and was not given any sense that he was at a critical stage of the disease. I have spent the last year thinking a lot about doing an inquiry into the handling of his treatment, but at the end of the day, it won’t bring him back. Can someone please help explain how this happened? He spoke to his doctor about how he felt–even said he feels so bad it was like dying–but he was told that’s how everyone with GD feels and you have to go through the two weeks stabilization period before zapping the thyroid.

Despite the tragedy, I’m very lucky to have the support I have, not to mention a beautiful son who has all of his dad’s charisma. Still, it’s not the same without the person you love by your side, so at the very least I’m hoping someone out there has some answers.

Thank you so much for reading and for any insights you can share.

[Bobbi]

#1066342

I am so very sorry for your loss. It was a situation like you describe which motivated Jake, one of our facilitators and best supporters to start this bulletin board with Dr. Patterson long ago. One of his relatives had died as a result of hyperthyroidism. Our goal here is to help people to understand the dangers, and the treatment options.

Hyperthyroidism is a danger to our hearts in two ways. The excess of thyroid hormone makes it beat too rapidly, and it is less efficient when that is happening. But that frantic beating wears at the heart, can weaken it. More dangerous yet is that excess levels of thyroid hormone have been known to interfere with the rhythmic beat of the heart, and cause arrythmias like your husband experienced. Arrythmias also occur, though, in people who are not hyperthyroid, too. If there has been any pre-existing weakening of the heart prior to Graves, hyperthyroidism increases the dangers.

Let me point out that your husband may have been somewhat hyperthyroid long before symptoms started puzzling him. The weight we lose is not just flab weight: some of it is loss of muscle. As you noticed, the large muscles of the arms are one of the places where we can actually see muscle loss as hyperthyroidism is allowed to go on. (The legs and chest also often show that muscle loss over time.) Joint pain can start as the weakened muscles put stress on them. But we do not start really "seeing" muscle loss immediately (other than seeing weight go down, typically) so the fact that these symptoms became apparent early on for you may indicate that he had been, perhaps slightly hyperthyroid for a while. It can be an insidious disease that way. I have read articles by doctors about how even minor levels of hyperthyroidism need to be treated because of the dangers. But minor symptoms can be ignored and often are.

When we start on the antithyroid medications like PTU (the medication your husband was on) they begin immediately to interfere with the production of new thyroid hormone. But, unfortunately, the thyroid not only makes hormone, it stores it for future use. And it often takes two or three weeks for our stored supplies of hormone to run out. So we can remain hyperthyroid for those two or three weeks of early treatment. Our doctors often prescribe a "beta blocker" like antenolol to try to protect our heart until thyroid levels are brought under control. But this is still a potentially dangerous time.

And, yes, being hyperthyroid makes many of us horridly ill. Some folks are lucky enough to be diagnosed early by routine blood tests, and we can have a hard time convincing them that these treatments, which often result in some (temporary?) weight GAIN are necessary. But those of us who did not get diagnosed early, like me, know just how sick this disease makes us, and how dreadfully ill we felt. And the problem is that we can actually BE dreadfully ill, and not "look it." Our friends and families often do not believe we are as sick as we feel, because we don’t look it.

I don’t know if any of these comments are helpful to you in any way. I hope so but I obviously don’t have "answers." I do think, however, that your post may be a true help to someone newly diagnosed who may be resisting treatment out of fear of weight gain, or due to denial. You may have helped to save a life. I hope that is a comfort, however small.

[aimee]

#1066343

Thanks for your response, Bobbi. It is a comfort to think someone resistant to treatment might seek help as a result of reading my post. I confess to being one of those people who thought the pain my husband complained of was exaggerated. Aside from looking a little thin, he appeared fine. But my feelings also had something to do with the doctor’s handling of the disease and his "oh you’ll be fine" attitude. Had the doctor made us (me) feel like the illness was more serious or mentioned to avoid some of the things I’ve been reading about now online (excessive stress, smoking, etc) we would have managed his illness differently. I know it’s too late for the coulda/shouldas but we were never told stress exascerbated the condition, or to avoid certain activities (my husband liked the occassional cigar and smoked a few the night of his party). I suppose my frustration lies with the dialogue surrounding Graves. Everyone who heard he had GD said they had a sister or cousin or niece who had had it for years and that everything will be fine. This seemed to be the doctor’s attitude as well, so I’m wondering if there was a way for us to know just how severe his condition was at the time he was diagnosed, or if it fluctuates day to day and arbitrarily. Even though my husband felt like he was dying he believed, like I did, that everything was going to be ok.

[Bonnie1954]

#1066344

Aimee,

I am so, so sorry for your loss. Wow, that is so sad. I will sure keep you in my prayers! I was just diagnosed with Graves a couple weeks ago, and I, too, had severe weight loss. I lost about 30 pounds in a couple of months…I am feeling a ‘little’ better since the meds, but I still have a LONG way to go to feel the way I did just a couple of years ago. I definitely see where your husband was coming from. I have thought some of the same things your husband did. It is a very depressing disease, that’s for sure. My life has done a complete turn for the worse, but thankfully I am now getting treatment. I have been without insurance, and without meds for quite awhile, after being told I was hyperthyroid… but not knowing I had graves disease. I didn’t realize it could be that serious. Thanks so much for posting your story. I have never heard of that happening before, and reading your story, I am sure, will open people’s eyes to the way they take care of themselves…I know you sure made me stop and think. Thank you so much for your posting. I can only imagine how hard it must have been for you to do so. Stay strong…take care of yourself. There’s a really good chance you are saving someone’s life by this.

[Bobbi]

#1066345

Aimee, I don’t know if there is a way to tell precisely how sick someone is at any given point in time with the hyperthyroidism. Pre-existing health conditions, perhaps unknown to a doctor, like an unknown heart weakness, can make hyperthyroidism more dangerous for one person than for another. Rare events, like arrythmias and thyroid storm, are not predictable. And, who in the world would think of a joyous birthday celebration as "stress?" The vast majority of people nowadays who are diagnosed with Graves/hyperthyroidism get well again, because of modern treatments that work. In the bad old days, before antithyroid meds (like PTU) and RAI and modern surgery techniques, it was very common for people to die. But since they’ve been developed, most of us regain our health. So our doctors do not treat things as a death sentence any more.

A few years ago, my oldest daughter died unexpectedly. I went through the same type of second guessing of myself that you are experiencing. I still have those moments of wondering whether I could have done something differently, if only I had "known". But in situations like this we only truly know with hindsight, and it doesn’t do us a whit of good.

My heart goes out to you.

[mamabear]

#1066346

I am truly sorry and will pray that you and your son are looked after. I must say that what you did prior to his passing is special and something that my dh and I do everyday with our kids. We laugh and enjoy them as much as we can because we have 4 and well they are a handful. I hope it brings you peace to know that his last thoughts were of his little boy, his wife and family from that party. I think you are right, going further with questioning the dr. and his actions wont bring your husband back. May I ask if you informed the dr. of what happened to your husband at the time? If not you might want to, it might give the dr. some insight as to how to treat the next patient. Doesn’t have to be a bad thing, something good can come of it if he doesn’t know already.(in person would be best, just ask for 5 minutes of the dr’s time if not then over the phone)
Graves’ disease does tend to run in families so just keep a note in your sons health record with the pediatrician just in case later on in life he needs to be tested for anything like that.

As a patient of Graves’ disease it is very frustrating to not get answers, it’s such an unpredictable disease. 100 people can have it and 100 people can have 100 different ways of what is going on with them.
My mom thought I was hyperthyroid when I was a teenager, right before I got married (the 1st time), she had me tested at age 18 and all was well. All tests from 1992-1998 were fine. After that I didn’t have ins. so I didn’t get tested. I got the Flu in Nov 2000 and by Feb 2001 the thyroid levels finally showed that Hyperthyroidisim was there.
Just proves you can’t predict it and you just never know.

I cry for your pain and sorrow, I adore my husband and can not think what life would be like without him. We had a scare in December with him, he is only 44. I look at things very differently to begin with but this really hit me hard and everyday is a special day to me. KNowing what you did with your dh that night, means you both felt the same way about everyday being special and I hope you continue that and are able to heal from this and be able to raise your boy knowing that his mama is strong and although misses her husband will always keep him alive in her heart so your son knows what a good man he was.

There is nothing you could have done, I am sure you are feeling; "i could have made him gone to the dr. sooner", "I could have seen the signs sooner", "I should have known he wasn’t well"….
The answer is , NO you couldn’t have. You can’t make anyone go to the dr., dr’s themselves can’ predict this disease so you can’t feel that you can, we as women want to be hero’s but we just can’t be sometimes.
Dont’ second guess yourself, it was a horrible tragedy. But you didn’t cause it nor did you cause his death or could have done something more for him prior to his passing.
I am sure you have heard that from many people, I’m saying it because I’m not one of the dr’s, i’m not the ME(medical examiner), I’m not your family, or one of your close friends…They are expected to say those things, I’m just me someone who shares a common earth with you and shares that this disease is something that needs to be SEEN.

You post here anytime you wish. Things happen for a reason. Get involved and share your story where ever you go. YOu never know who it will help.

I am assuming from what you wrote that your son will be turning 2 this August/September. Is he a Leo or a Virgo? I ask because both my girls are Leo’s (July and august birthday’s), I’m a sept baby, i am a virgo. Just wondering if they share the same sign. Girl Leo’s are so different than boy Leo’s!
Prayers to you that you are able to take this and make something positive with it throughout life.

[Beth41109]

#1066347

Hi Aimee,
I am so sorry hyperthyroid induced heart failure robbed you and your child of a husband and father.

I had acute decompensated heart failure from hyperthyroidism after having had undiagnosed Graves disease for over many, many years.

Because I am a woman and have had many pregnancies the high hormone levels would put me into remission for periods of time but eventually the on and off again Graves disease damaged my heart enough that when I had a relapse of T3 thyrotoxicosis I had heart failure.

I had an apathetic thyroid storm which usually only happens to elderly people. Elderly people don’t have the high fevers and hypertension that usually accompany a thyroid storm so often they die before anybody realizes they were in a thyroid storm.

I think my thyroid storm was apathetic rather than the normal storm because I already had years of heart damage from undiagnosed untreated Graves disease.

Graves disease causes hyperthyroidism and hyperthyroidism damages the heart muscle by making it work too hard.
And when the hyperthyroid state remits the heart tries to heal itself. People who have only one acute bout of hyperthyroidism from a thyroiditis that is not Graves disease usually go on to make a full recovery.

But in people with long standing undiagnosed Graves disease every time the heart tries to heal itself after a hyperthyroid bout, a feature of the Graves disease is that too many fibroblasts are put down at the site of injury.

After my most recent bout of heart failure which lasted 8 months I developed restrictive pericarditis symptoms because while my heart was healing the Graves disease was putting down too much fibrous tissue.

But I firmly believe I already had a fibrous heart prior to this most recent bout which is why I had 5 weeks of acute decompensation rather than only 8 days of acute decompensation like I did the previous time (and I had months of heart failure after the acute phase both of these last times during which I couldn’t get a diagnosis.)

The time prior to this most recent time, I though I was sick.
The time prior to that. I just thought I was aging badly.
Only this most recent time was I so sick that I knew it wasn’t age or an infection but heart failure.

The doctor who examined your husband’s heart said he could not tell how long the fibrous tissue had been in your husband’s heart which probably is technically true…he can’t say if it was months years, or even 20 years, that it took for your husbands heart to get fibrous, but my guess would be that it likely was not just from the last 4 weeks of your husband’s life.

Although it is not impossible that your husband had some other underlying medical condition,
everything the autopsy revealed fits entirely with long standing undiagnosed untreated Graves disease.
And probably if you look at symptoms list, or if you husband were here to do it, he would find that many of the symptoms he had for years before he felt sick. He may have complained to a doctor about them, or he may not have.

In my own case some things I did seek treatment for, and other things I let go, but even when I did seek help no one thought to check my thyroid. Every symptom I thought was bad enough to complain to a doctor about was explained away by the doctor as somehow normal or not that bad…nothing to worry about…

Now my feeling is that TSH testing is so cheap, Graves disease so common, and the outcome of long standing undiagnosed Graves so bad, why not test everyone like we do routine cholesterol screening?

Again I’m so sorry you lost your husband this way, and it is especially heartbreaking because there are treatments that could have saved his life had he been diagnosed earlier, and he was just getting to the best part of his life with you and your new baby.
Beth

[Kimberly]

#1066348

Beth41109 wrote:Now my feeling is that TSH testing is so cheap, Graves disease so common, and the outcome of long standing undiagnosed Graves so bad, why not test everyone like we do routine cholesterol screening?

Hi Beth – Thanks for sharing your story. In terms of testing guidelines, the medical community seeks to balance a test’s cost with its usefuleness in early detection. Of course, doctors don’t always agree as to where this balancing point should be — in fact, there is a raging debate going on right now over testing recommendations for mammograms.

The last recommendation I read (although perhaps there is a more current one) for thyroid testing to have a TSH test every 5 years starting at age 35. However, if the patient is in a high risk group (family history, pregnancy, significant radiation exposure, smoker, age 60+, etc.) or is experiencing symptoms, he/she should *request* the test. Unfortunately, this puts quite a bit of burden on the patient. My Graves’ was caught in a routine checkup at age 39…and I found out AFTER the fact that my grandmother, who had passed away several years earlier, had some sort of thyroid issue. I did have some symptoms, but had chalked them up to stress. No telling how long my Graves’ would have gone undiagnosed if my doc hadn’t included a TSH test in my regular labs! I guess this highlights the importance of knowing our family’s medical history — and of getting lingering symptoms checked out, no matter how minor they appear to be.

[bradybunch6x1]

#1066349

Hello Aimee,
I’m so sorry to hear about your husband. I can not actually say much of any that these people have not already said, but I do have one to mention that will help you in the future. I see that you had stated that you had a child. Please allow your childs doctor to know that there father passed from this disease, so that they can monitor the child.
Graves disease in a parent puts our little ones at risk for developing it. There percentange is 20% higher than the child that doesn’t have a parent that has it. So it is best to allow your childs doctor the information about there father. Just my passing thoughts on it all.
God Bless you, and your child.
Valarie

[Jake_George]

#1066350

On an episode of "Dr. G Medical Examiner,” two months ago had a florist in Orlando that died unexpectedly. As the show talked about what was happening before the woman died of congestive lung failure, I sat there and told Jan, “That woman was hyper thyroid for a long time.” When you go down the list of symptoms on our home page, she had all but two.

Sure enough when the labs came back she was extremely Hyper Thyroid. Cause of death was undiagnosed Graves’ disease. That is why we spend so much time on education here and support. Doing nothing is not an option.
And yes, Bobbi is right after my cousin Tiger died at age 23 I felt I had to do something. Losing one person who could have been saved is too many.

Sorry to hear of your husband’s crossing. But know that you will be together again…

[Author]

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