graves’ disease

So I have Graves’ Disease, which is an autoimmune disease wherein the body produces antibodies that attack the thyroid (which is in the throat), and the thyroid retaliates by producing more thyroid hormones. This has been confirmed by a pretty fantastic endocrinologist, who performed an antibody test. This is the cause of my hyperthyroidism. It has, apparently, nothing to do with our losing Emmett. It’s just a super rare coincidence. (His chromosomal abnormalities were extremely rare. Only one in five hundred women gets Graves’ Disease. It’s like two lightning strikes at once.)

The cause of my Graves’ Disease is (and will remain) unknown.  Maybe I had a genetic predisposition towards developing the antibodies. Maybe I caught a virus (a cousin of the Bubonic Plague; I couldn’t make this stuff up) that brought it on. Maybe I’ve had it for years and years. Maybe something about how my body responded to pregnancy brought it on. There’s a link between GD and extreme emotional stress (whatever that means exactly). There’s no way of knowing, and really, when it comes down to it, the cause doesn’t even matter. It’s something to fixate on, but it doesn’t matter.

If treated, GD is rarely (directly, at least) life threatening. The biggest risk if it remains untreated is heart failure, but we’re treating mine now, so that risk is low. I’ve been on anti-thyroid drugs since my thirteenth week of pregnancy, which is the first-line medical response to GD. The drug I was on until today was the safer of the two for pregnancy, but it has a greater risk of causing liver failure, so it is not recommended outside of pregnancy (assuming you can tolerate the other medication). Though safer for mothers, the other medication is dangerous to a fetus, which is why Maternal Fetal Medicine put me on the first drug. My endocrinologist was willing to leave me on that drug, and monitor my liver and blood count numbers regularly (as that would be the drug to take if I were going to start trying to conceive again soon), but I decided a few days ago that the risk to my other organs was too worrisome, so he switched me to the safer.for.me/not.safe.for.pregnancy drug yesterday. I’ll start on that today, and we’ll see what happens. It still has a risk of causing liver failure, and aplastic anemia, and other terrifying things, but those risks are a little lower in this drug, and the endocrinologist will monitor me with blood work at every appointment. Blood work is a regular, rest.of.my.life thing now anyway.

Apparently, the anti-thyroid drugs only have a 20%-30% chance of putting me into long-term remission (which is the goal, as the drugs cannot be taken for long). There is a chance that I might enter spontaneous remission. If I don’t go into remission, though, they’ll want to use iodine radiation to kill parts of my thyroid, which is, obviously, dangerous. And if that doesn’t work, they’ll want to operate to remove parts of my thyroid, which is, obviously, dangerous too. We’re not there yet, and I’m committed to keeping us from getting there if it is at all within my power to do so. These paths almost always move patients from hyperthyroidism to hypothyroidism. Then they’re stuck on synthetic thyroid hormone replacements for the rest of their lives. I understand that I will have Graves’ Disease for the rest of my life, but I’m hoping to enter remission for, at least, long periods of time.

I’m scared of lots of this. I’m scared of heart failure. I’m scared of liver failure. I’m scared of radiation and of throat surgery. I’m scared of needing drugs to survive, and of the impact those drugs have on the body’s fragile systems over time. Getting this news within three weeks of losing Emmett is tough. His death made me aware in a brand new way of how vulnerable we all are. I love him so much. I would have done anything to help him stay here, but there was nothing to do. I feel more powerless than I have ever felt. I did everything I could to help him grow, and now he’s gone. Now everything feels precarious. If I couldn’t save my son, what makes me think I can save myself? That’s dangerous thinking, and I know that. My body was always as fragile as I now know that it is. But I love being alive. I love my family. I love time. So I’m threatened by anything that threatens those things. And I’m only three weeks into grieving Emmett, so I don’t have the perspective to make any sense of this. I do know, though, that this is a treatable disease. I have lots of options, and this, in and of itself, is rarely life threatening. But he died. So I can die too. My mind is a scary place to be right now.

But I found a book. It’s called Graves’ Disease: A Practical Guide, and it was written by Elaine A. Moore and Lisa Moore. Here’s the synopsis (as found on barnesandnoble.com):

Emphasizing the patient’s role in healing, this book provides information about this common form of hyperthyroidism which affects three million people in the US. Topics include basic information on the thyroid and its hormones; Graves’ ophthalmology, dermopathy, and acropachy; autoantibodies and autoimmune diseases associated with Graves’ disease; genetic and nongenetic influences; allopathic and alternative treatments; special considerations in pregnant women, children and teens; and anecdotes and testimony of patients with Graves disease. Elaine A. Moore is a medical technologist; Lisa Moore is a writer.

Annotation c. Book News, Inc., Portland, OR (booknews.com)

This got me excited. I read an interview with Elaine Moore that made me believe, for a moment, that I might feel strong again once the shock and immediacy of sadness wears off. That I might feel empowered again. I feel powerless to do anything right now, but maybe this book will show me a path. She talks about how the medical community in the United States focuses mostly on the thyroid. But it’s an autoimmune disease. She talks about how to treat the immune system. The underlying cause. I’m excited.

But then there’s Graves’ Disease and making another baby. Because God, we’re ready to raise children. So here’s the thing: I’ve had to put down the idea of getting pregnant again right now. I don’t feel safe on the pregnancy-safe medication. There are too many unknowns with this disease. And the stress of pregnancy does make it worse, and that’s dangerous for me right now. This scares me because I’m 32. I never, never, never thought I wouldn’t have kids by 32. I’ve wanted kids since I was, like, 17. I’ve always wanted to adopt, as well, but I’ve always wanted to carry a child. And then I did. And then he couldn’t stay. And now I’m heartbroken, and my body is broken in some ways too. My prayer is that I’ll go into remission in a year or two, and then I can try to carry again. Being pregnant will probably bring me out of remission, but at least I’d be stable first. I don’t know. This all scares me.

The crazy beautiful thing is this, though (because life is, in spite of all of the pain, crazy beautiful): my wife has always wanted to carry too. It was always our plan to have me carry our first child (because I’m four years older), then have her carry our second child, then adopt one or two other children (maybe siblings). But she’s willing to try to carry now. She’s willing to rewrite years of planning and narrative-building and just open her body up to pregnancy right now. This would give my body time to heal. It would give us time to find answers. Right now, it’s heartbreaking not to have a child to parent. We feel like parents, but no one needs us to fill that role. I made Emmett, but he isn’t here. It hurts so much.

It’s been hard for me to put down the narrative that if we move on to J this time, it means that I’ve failed. Or that I’ll never carry again. That I’ll never make a baby who gets to live. J has been very supportive of these fears. If I need to wait, if I need for it to be me, she’ll support that. But what I’m learning is that none of us knows how long we have. What I want, more than anything on earth, is for us to be a family with children. I want to raise kids with my amazing wife. I want to see them grow, and to discover who they’re going to become. My desire to live a long healthy life, to spend that life with J, and to raise a family together is infinitely stronger than my desire to give birth, or to see my genetic input in a child.

I was still confused, though, and not quite ready to let go of the idea of being pregnant again soon (because with my whole being I miss being pregnant. I ache from feeling so empty), when I saw this: Nineteen year old Zach Wahls speaking at the Iowa State House against a proposed constitutional amendment to ban same-sex marriage in that state. If you haven’t watched this, click on the link now. You won’t be sorry. Zach is the child of two lesbian moms. I watched him, and I got some perspective. I want to watch my children grown into adult men and women in the world. I’d like to have the experience of making another child, and I pray I’ll have that, but it’s not as important to me as raising a family. I watched this kid, and I couldn’t imagine that his birth mom was any prouder of him than his other mom. They share the work of raising him, and they share the joy. They share the memories. The intimacies. He’s their son. As a person who always wanted to adopt, who only ever wanted to carry once, I thought I already knew this. But letting go of Emmett, and of the dream of carrying again soon, has forced me to learn it in a new way. So I’ll read Elaine Moore’s book, and I’ll figure out – just as I’m learning how to carry Emmett with me – how to carry Graves’ Disease too. And J and I will rewrite narratives about birth order, physical vulnerability, femininity, parental roles, and a zillion other notions we’ve amassed over the years. My God, I am grateful to her. She is my hero every day.

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6 thoughts on “graves’ disease

  1. Hello there. Wow, what a rotten time to find out about the Graves’ Disease. While difficult and sometimes hard to manage, I have seen many people do very very very well with the disease and its management. I have a great deal of confidence that your endocrinologist and your healing self will be able to whip it into remission in no time. Good luck!

    As for your wife carrying and you rewriting your future. We’re sending you big hugs. Your story really spoke to my wife and I since our main baby name is Emmett and we’ve been praying/thinking of you frequently.

  2. Such a difficult thing to go through, but you and J will handle it with love and grace – I’ve never known you two to do otherwise, and it’s one of the things I most admire about you both. Lots of love and let me know if you ever need anything, M

  3. I’m sorry you’ve had lightening strike twice and so close together. You haven’t even been able to take a breath and process the first hit and here’s another to back it up. Talk about a one-two punch. I know your strength and determination will carry you through. You’ll have your family and your health. I just know it.

    I sort of feel like I can relate with Linus’s situation. There was less than 1% chance we’d have identical twins and we did. 1% of the population has Aortic Stenosis and only a tiny fraction of that 1% has Critical Aortic Stenosis requiring infant surgery. I can’t begin to tell you the tiny fraction of identical twins that have Critical aortic Stenosis requiring 5 surgeries by the time they are 5 mos old. It’s mind boggling. The surgeon looked at me like I was nuts when I was so shocked by the 5% chance of death during his upcoming surgery. It’s such a big number compared to what we’ve been dealing with.

  4. Ugh, I’m so sorry for this diagnosis. Making peace with the body can be so bewildering, frustrating, and heartbreaking. There can be peace and it comes with some time. I know how hard all of this is for you: losing Emmett, the disease, and letting go of the beautiful narratives you’ve both written about this time in your lives. I’m so overwhelmed and proud of your strength in trying to accept and let go. It’s not easy, not remotely easy, but it is good and crazy beautiful and so sad.
    Lots and lots of love to you and J.

  5. Oh, my dear friends. This time of grief and heartbreak must seem unending for both of you. Life is so unfair. I am in awe of your strength and courage in the face of all this sadness and uncertainty. We will continue thinking of and praying for you as you rethink and rework your narratives.

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