[Gigi]

#1059117

I’m 35 and was diagnosed with graves about 18 months after the birth of my only daughter. Graves made me so sick that I mentally broke down. I thought I was going crazy and even considered suicide one day. I almost failed one of my biannual nursing certifications (which I sharply would pass all the time) because I literally could not mentate well. I couldn’t word find, I couldn’t articulate well. So I couldn’t be a good nurse, I couldn’t be a good friend or daughter or wife but I could put on a smile every day when I saw my baby. I literally faked happiness for her and boy was I good at it.

Now that I’m going toward remission, I’m starting To “forget” about graves. That’s because I feel so good now. I feel like I have my life back and I’m so thankful that I’m alive. I can’t believe how sick this awful disease made me in so many ways! I’m thankful that I’m happy now, but I know others don’t feel like that. I wish and hope and pray that more information can be discovered about this disease that is hidden from the general population.

So what I’m looking for is support from others on our decision not to have any more children. The endo said I would most likely flare after another pregnancy. I even read that I am more at risk of developing another autoimmune disease- pregnancy increases that risK even moreso. I already have PCOS, graves, IBS. That’s enough for me. My happiness and health is so important to our family. I get to work part time and stay home most of the time with this beautiful girl who deserves 100% of me and I don’t want to rock the boat.

Everyone but my husband questions my decision. I don’t want to hear “poor (my daughter), she won’t have any siblings. Well, just because we have siblings doesn’t mean we are better off. I don’t want to hear ” you might regret it”. we’ve already met with a high risk OB, we have already talked with neonatologists (if the baby gets neonatal graves), and we’ve talked with my endo. A green light from all these people doesn’t take away how it will be with a graves flare postpartum, a new baby, breast feeding and a 3 year old.

So please, someone at least congratulate me on making a decision, whether or not you think I’m overreacting. Someone please tell me! Because every time I tell a friend or family member they look at me as if they might cry!

Thanks for reading this!

[adenure]

#1172319

Hi Gigi,

First, congratulations on getting through being hyper and dealing with Graves. Congratulations on having a wonderful daughter, career, and husband. Unless someone has walked in YOUR shoes, they don’t understand and they don’t have any right to make you feel guilty about anything! We have to do what is best for our particular situation and not worry about those thinking they know it all. Easier said than done, but the fact that your husband supports you and you have a strong relationship is what matters. Yes, it’s good to hear opinions, but that is just what they are: opinions.

I can sympathize with you. I was diagnosed with Graves about 3 months after the birth of my 4th child. Yeah, I hear you- what a nightmare. I too tried to pretend to be happy and normal, but admittedly, at my worst, I spent my days in bed crying- too physically, mentally, and emotionally unstable to do much of anything. Fortunately, I have very good in-laws and my husband’s work let him work from home when my in-laws couldn’t help. My dad came out and helped too. I did get on methimazole for 7 weeks and got my thyroid stable, but as it was damaging my liver, I’ve been off it one month. I am scheduled for a thyroidectomy next Friday. The thought of going hyper again is very, very scary, and I never want to see that beast again. So, I understand your desire to not tempt fate so to speak and go through it again.

Even though child birth is a big trigger, realize that anything could trigger a relapse into a hyper state. It is good to feel better (and I feel that way too right now; I’ve actually had a few moments of thinking should I just wait and see and not go through with the surgery??) but, I do know that the possibility of going hyper again– at some point, whether in a month or a year- is likely to happen (especially after only 7 weeks of meds). So, that played a big part in me making a definitive decision regarding treatment. Are you going to consider RAI or surgery? Did the meds. work well for you? Would you take them again if needed? These are all things to think about.

We don’t plan on having any more children either, but the truth is, I told my husband that if we ever DID get pregnant again- the idea of going through pregnancy, labor, delivery and the 1st year with my thyroid, knowing the possibility of going hyper to be a very real situation (especially with not being able to be regulated with methimazole) scares the crud out of me. I’d have a hard time enjoying the unexpected joy of a new baby (again, not that we’re planning on that, but surprises do happen). I also homeschool and that is very important to me. I’ll tell you, my in-laws taught my boys for a few weeks when I was going through the worst of the hyper, but I managed after awhile.

It sounds like you and your husband are at a good place in the Graves journey. Stay strong

Alexis

[Robboford]

#1172320

Hi Gigi,
Although my partner and I have been together for 30 years, we have not been blessed with any children so I am probably not the best person to comment, but from my point of view the decision you have made must have been heart wrenching. If I was in your position, I would be thankful with the beautiful healthy daughter you have been blessed with, and would make the same choices you have made. As I have been told by my Endo, the majority of “Gravers” have been affected due to some genetic connection. (I have been wracking my brain to find a link – unfortunately my mother died when I was 4 and my father when I was 12 so I don’t have any “go to” people I can ask. The only link I believe, is that my Dad’s mother (my grandmother) lived to 79 but was Insulin dependant, one of his sister’s (my auntie) died at 39 (was Insulin dependant) due to complications of Diabetes and another auntie is still alive today in her 60’s and is also Insulin dependant). Unfortunately back in the 70’s a lot of people died as a result of a) old age or b) complications of an illness they were affected with. Today we are all a lot more aware and don’t accept things as easily as back then, therefore these relatives could have died as a result of any number of illnesses or complications). If I had passed on Graves to any child or children we may have had, I don’t know if I could cope with that after knowing the upheaval and the suffering caused by Graves. In saying that though, I believe I am on this journey for a reason and once I do do get well, I will be one of the loudest voices out there in an effort to support other sufferers or to share my experience in the hope that others may find a benefit or a shoulder to cry/laugh on. All in all, I think that we all have a right to the choices we may make (or are forced to make) and even if you decide to have more children that is a very brave and personal decision only you can make. Stay strong and well and best wishes for the future.
Cheers, hugs and kisses
Debbie

[Darcy43]

#1172321

Congratulations on your beautiful baby girl and more importantly, your successful remission of this dreadful disease.

I have been blessed NOT to have kids. I do not say this in a mean way. I say this because it was a choice. Do I love my nieces and nephew, ABSOLUTELY. Do I love the fact that because I am so responsible and successful that ALL my close friend actually willed their kids to me (if a catastrophe occurs I am toast lol) ABSOLUTELY. Have I met a child or a pet for that matter that doesn’t love me? Nope. I cannot keep kids away. So one would think I am the so called perfect candidate to be a mommy BUT I chose not to be. And P.S. I have never terminated a pregnancy.

I cannot tell you how much flack I get. I am now nearing middle 40s and even my gyno says “well you still have time.” ah yeah, time to go back to Europe and do more traveling…time to become a Judge one day. Now I am not knocking ANYONE who decided to be a parent, where naturally, by adoption or just raising someone elses child because it does takes a villiage and it can be a wonderful experience (so I hear). But I get furious when you get slack if you never have a child. First it was “when are you getting married?” I got married at the ripe age of 25 as a virgin (oh the horror I was an old maid), he cheated and after 12 years I am now a free woman. THANK GOD we didn’t have kids. Can you imagine? However, after the first year of marriage we were bombarded with “when are you going to start having kids?” Mind you NONE of these folks were going to contribute to the college fund, the babysitting, the sleepless nights, pushing the little one out my womb, etc. Yeah, you see where I am going with this.

So in closing, I would never, ever give you grief about not having a second child. It seems like you love your blessing with ALL YOUR HEART and trust and believe, coming from someone that had sibblings but still felt mistreated and not loved because my crazy mother didn’t have it in her to love all of her kids the same, your daughter will be just fine being an only child. If she possesses your spirit, she will have lots of friends.

You do what is best for YOU. This is the main reason why many of us have Graves..it is triggered not only by genetics, and antibodies but STRESS. Do you notice that mainly over achievers, people pleasers, etc. are the ones that get autoimmune diseases? Something to think about.

Hugs and lots of support to a healthy life with your beautiful child. You are blessed and if you don’t want to have any more especially due to your health- don’t do it. You want to be here to raise the one daughter you have.

As women we didn’t fight for equal rights, the right to vote, the right over our own bodies, right for equal pay, etc. just to have it thrown in the wind over some other peoples opinions….you know what they say about opinions….everyone has one…just like…

Have a great day and stay true to you.

[adenure]

#1172322

I believe the genetic part. My mom & aunt deal with hypo & my great grandmother had goiter. One of my friends- both her mom & sister have Graves. But, like all things in life… you never know what will or won’t happen. Grab life by the horns & live it- don’t let fear paralyze you. Should take my own advice! Haha

Alexis

[LaurelM]

#1172323

Hi,

What you and your husband decide regarding family size is nobody else’s business. Even if health reasons were not a factor, there are plenty of great reasons to decide that one child is the exactly right number.

This was my experience but in no way am I suggesting that you should or should not consider a second pregnancy:

I also had a toddler and was possibly in remission (very low dose of ATD) when we got pregnant with our second. The first year of our older daughter’s life had been indescribably rotten. I was so sick. We were all expecting that after the birth of our second daughter, that I would relapse. I don’t know why I didn’t but I experienced about a 6 year remission. There was alot of worry. I worried about having to start the pregnancy on ATDs and I worried about having to go back on them while breastfeeding. So much worry. I feel very fortunate to have had great medical care and the best possible outcome. I have two happy and very healthy children.

I know that all people with an autoimmune disease share a genetic defect that just needs a trigger to set it off. It is not a guarentee that it will. My grandmother had GD. None of her 3 children have an autoimmune disease. I am the only one out of the many grandchildren to experience one. Yes, it was an awful, awful year for me and right now I am dealing with a relaspe. But, I think I caught it much sooner and I don’t feel nearly as sick as last time. My house is a bit dirty but I’m still getting my kids to all their activities.

I would not have choosen a pregnancy while still in treatment but now I feel lucky that circumstances worked out the way they did.

Many of my friends have choosen to have one child and they are very happy with that decision. They have a ton more flexibility as a family than we will ever have.

Do what feels right to you and do not allow yourself to be badgered about your decision.

Best wishes,
Laurel

[Ski]

#1172324

I just wanted to add my voice to the chorus! I don’t think I can say it any better than it’s already been said, this is a fabulous community!

Just wanted to make one quick comment about the genetic component of Graves’ — what we know is that the genetic propensity we pass on is the potential for some kind of autoimmune disease, not necessarily Graves’. Millions of people pass along the same “genetic defect,” but not every child of a Graves’ patient gets Graves’ (or any autoimmune disease, for that matter). It could show itself through any number of autoimmune diseases (staggering, really, the list…), or they could never end up with anything. I have two siblings, both in their mid-50s, and neither has ever presented with an autoimmune disease, but we all have the “genetic defect.” That is one component of getting some autoimmune disease. Other components include stress, perhaps environmental triggers, and other unknowns. Hopefully someday the researchers will figure out how to deactivate that defect (they ARE looking into it even as we speak, though saying they’re anywhere near figuring out that magic step is premature, to say the least), but in the meantime, I think it’s important to know where the actual connection lies.

Anyway — the most important message I wanted to impart was that your decision, made with your husband, is YOUR BUSINESS and no one else’s, as you well know. I’m sure you hate telling people about your decision simply because everyone wants to “talk you out of it,” and I hope you find some peace about that over time. I doubt the conversations will stop. People can be so persistent! Try to remember they’re making these arguments out of love, maybe that will help, but let them know that if they love you, they’ll respect your decision and stop trying to change it.

[Gigi]

#1172325

Wow- thank you all for this feedback. I am so lucky that this forum exists. Do any of you know if it’s beneficial to go to a genetics counselor? I wonder if I could find out if my daughter carries the gene? I’m not an expert at genetics but I would love to know. I would love some more info about the genetic link to graves and any recent research. Hugs to every one of you who kindly took time to write to me both publicly and privately.

[adenure]

#1172326

I too am curious if there is a way to know? It at least would be good info. to have to keep an eye out for symptoms as they grow older. I wouldn’t say anything to my kids until they were adults, but information can be a good thing.

Alexis

[catstuart7]

#1172327

Here’s a genetic testing outfit that says Graves’ has a 64% genetic component.

http://www.navigenics.com/visitor/what_we_offer/conditions_we_cover/graves_disease/

[snelsen]

#1172328

I am quite confident there is no genetic test for Graves’ or any other autoimmune disease. The statements about Graves’ result from gathering existing information gathered from family histories, plus from researchers who review medical reports from clinics, doctors and hospitals.

I suggest that you contact the office of a geneticist, as your question, leave a message.
There is a ton of junk on the internet that leads a person to think that this exists, but the research is not behind it.

In the field of genetics and genomics, a field which is in its’ infancy, I am aware that BRACA 1 and BRACA 2 can be tested. The test is done by one lab in the US, the cost is approximately $1500.
As this field grows, I imagine the motivation for genetic testing will be guided by so many factors which are not defined at this time, but the impetus and interested, followed by the funding, will likely be in cancer, cardiac disease and other potentially fatal diseases.

There was a promising genome company in Iceland, which had funding difficulties, but this is a promising area of interest which is still receiving a lot of attention and funding from the private sector.
Shirley

[Kimberly]

#1172329

One tricky thing about genetics is that there appears to be an environmental component to Graves’ (as with all autoimmune conditions) that is not well understood.

Studies have been done on identical twins and Graves’. If the disease was completely determined by genetics, if one twin contracted Graves’, it should be close to 100% that the other twin would as well. But that has not been the case in the research studies that have been conducted. I don’t have the info in front of me, but the correlation is more like 30-60%.

So there definitely is a genetic component, but that won’t tell the whole story.

[Bobbi]

#1172330

Rule #1: Please beware of anyone online who wants to sell you something. They are MARKETING their product, not necessarily providing you with factual information.

[catstuart7]

#1172331

Hey I just put that link out there for general information not trying to sell anybody – it was one of the first legit ones that came up when I googled. They do say they only test ordered through your doctor.

[Author]

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