Where do I start.
I need to talk bee's, I need some advice.
I got pregnant with baby phoenix February 2013. At the exact same time in my life I was diagnosed with Graves Disease. It was a close call. I wasn't doing good at all. They got me into the Endocrinologist the next day. I started PTU 100 mg 3X a day. After baby phoenix was born the doc decided to slowly wean me off PTU 100 mg at a time. A few months later I was down to one 100 mg a day. He wanted to see if the Grave was going to go dormant. All the symptoms came back with a vengeance. I'm now back up to 3X a day. Now the Doc wants me to make a decision. Surgery to remove my thyroid, or Iodine radiation.
Here's the thing with iodine radiation. I can't be near baby phoenix 5 days in hospital. then I can't be no more than 6 feet to her for a while afterwards. I cannot breastfeed her anymore. I have to make sure my milk dries up 6 weeks before the radiation. I went through a lot of struggles to breastfeed this little girl. She had a posterior tongue tie and a lip tie surgery. I had low milk supply because of it. Had to go on Domperidone, blessed thistle and fenugreek. 9 pills of EACH 3X daily. Now after all that things are going amazing with breastfeeding. Yet I would have to quit. There's a high chance that because of the radiation I could end up with bulging eyes and eye problems. I cannot get pregnant until a year after the treatment. Even when a year is done, there's a higher risk of miscarriage in subsequent pregnancy's. Radiation can pool in the salivary glands, ovaries, and stomach lining. I'm currently 32 and we want more babies. Possibly a chance that one treatment won't be enough and will have to do more. (ie more time away from baby girl)Huge possibility that I'll become Hypothyroid afterwords and will need Synthroid the rest of my life.
Second option is Surgery to remove my thyroid, once it's gone it's gone. I will be on Synthroid the rest of my life. I won't have to stop breastfeeding. I don't have to stay away from my baby. I will have to have my levels messed with all the time to find the right happy medium.
What Do I Do?
A huge part of me is saying just do the surgery, but I'm scared of not having a thyroid. I've struggled with my weight my whole life. I'm just tiered of it, but I know without a thyroid I can say good by to ever loosing this extra weight.
I also have to mention that my dad had thyroid cancer. This also scared me.
I'm so stressed bee's
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I am so sorry you have to make this tough choice. If it were up to me I would choose the surgery at this point but both sound very hard. Much love and prayers it all works out.
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It's such a personal choice but I can say I would probably have the surgery. I hope you can find the right option for you and you and your family
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I would have the surgery. It seems less disruptive to your life (even though I get it's scary getting your thyroid removed!) Plus your sweet girl won't care if you carry a few extra pounds. Best of luck to you!
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What a decision. I would choose the surgery, it seems like it would be tough for a shorter period of time, rather than rearranging your whole life + plans for over a year.
I am sorry you're going through this and that you're stressed. I'll be thinking about you.
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I'm hypothyroid, and I'm on synthroid for the rest of my life. It's just a tiny pill once a day. I say that versus all the side effects of radiation, go surgery...
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I'm sorry all of that is happening to you. Personally, I'd have the thyroid surgery. The risk outweighs the benefit to me for iodine radiation.
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I'm so sorry. I would have the surgery though. Best of luck!
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@MrsMccarthy: @cyndistar3: @Ginabean3: @beaker: @tinyperson: @matador84: @Bao: Thank you so much all of you! I was staring to doubt my thoughts on the whole thing and needed fresh eyes to look at the situation for me. I know The Endo is going to push for the radiation being that its their protocol for Graves. He tried talking me out of it once saying I was too young. What does age have to do with it?
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I would have the surgery. A friend of mine had her thyroid removed and from what I can tell, she's doing fine with little or no complications. Good luck with the decision
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I would choose surgery since it seems like a done deal (minus the pill and adjustments) rather than possible future radiation. I am so sorry that you are dealing with this.
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I would also choose the surgery, especially with the thyroid cancer in your family. It seems like a more permanent solution that wouldn't mess up your family plans. But I'll admit, I don't know much about living without a thyroid or how rough take might be. Good luck to you.
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If it were me, I would choose surgery, no question. Radiation scares me. I have a friend who was born without her thyroid, and she has been able to manage her weight after struggling with it during her teens. It has been difficult, but doable.
I'm so sorry you have to make this decision.
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My mom doesn't have her thyroid and she has done a great job maintaining her weight (even through menopause). The surgery went well except they did seem to aggravate her vocal chord. It took about six months for her voice to return to full strength.
One other thought and not to scare you would be to look at the risks of radiation and secondary cancers especially breast cancer in women. I'm very glad my treatment did not require radiation.
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Sorry you're dealing with this
It sounds like the radiation has too many "what ifs" associated with it. I have a friend who had her thyroid removed in her late teens due to thyroid cancer and she has been perfectly fine after having it removed. Synthyroid is a easy medication to be on (I'm on it for Hashimoto's), so I think that would be easier than dealing with the unknowns of radiation.
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I am hypothyroid and will have to be on synthroid the rest of my life as well. Honestly, it doesn't affect me at all. I have to get my levels checked frequently as my levels are leveling out post baby, but I can now tell when things feel "off" and contact my doctor. Radiation sounds very scary, and synthroid isn't scary to me at all. Hugs momma...I am sure this is so stressful.
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Synthroid is no big deal. If you have to have any chronic health issue, hypothyroid or no thyroid (when controlled) is the one to have. You'll do great!
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@MamaPhoenix: if you have the surgery will it be 100% effective?
What about the iodine radiation? -
@locavore_mama: yes the surgery is 100% as long as they do a total thyroidectomy, but causes a me to need synthroid. The radiation I would get is the iodine radiation.
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@MamaPhoenix: Aw, hugs to you! I am hypothyroid- very very very much so. It is hereditary and I probably had it for years without knowing. That being said, with a good doctor you trust to regulate your levels it is very manageable. During pregnancy my OB, for example, checked me every four weeks. It isn't too much of a lifestyle change other than getting checked and having to wait 30 minutes to eat breakfast! I know surgery can be scary but if you choose to go that route, I think afterward should be (hopefully and very likely) manageable. The thought of meds "for the rest of your life" was a bit daunting at first but turns out not to be such a big deal afterall (and I am not a big medicine taker!).
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I'm so sorry! You've been through a lot. I would 100% get the surgery so that I could (hopefully) be done with it all. What a tough decision though.
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I'm sorry to hear you're going through this. I'd go with the surgery as the radiation treatment sounds so iffy in terms of success rates and has the additional complications with it. Big hugs to you, hoping everything turns out ok!
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I have Graves' and was pushed to do RAI. I didn't feel comfortable with it and opted to stay on PTU for the foreseeable future. I was on it for 3 years and we started to reduce meds until I was off completely. I haven't had a symptom since. My sister also has Graves' and she did not respond well to the meds. She opted for surgery. It was successful and she has been on synthroid for a while now. It hasn't been a hassle for her in terms of taking the meds and she isn't constantly adjusting them.
I guess my question is how well does PTU help with your levels and symptoms? Is your heart affected? My sister couldn't continue in meds because her tachycardia was causing atrial fibrillation whereas meds fixed my tachycardia. If your heart isn't affected, then I don't see why you can't stay on PTU instead of the more permanent RAI or thyroidectomy. If I had to choose, I'd go with the surgery though. I don't feel comfortable with putting radiation in my body and the increased incidence of thyroid cancer in those who have RAI scared me.
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I'm so sorry you're dealing with such a difficult situation, I think, taking in mind everything you've said and especially your dad's history, I would have the surgery. Good luck with whatever you decide
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I would go for the surgery. My cousin was born without a thyroid at all, and it really hasn't affected her life too much. Sorry you are dealing with this.
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@MrsKoala: I would love to stay just on PTU but there's damage to the liver and kidney's with long term use. He's already screened for damage last month. So far things are still good, but he wants me off of it.
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What about switching to methimazole? Much lower risk of liver damage. You only need to be on PTU in the first trimester of pregnancy. I have many patients who stay on methimazole for years and do well. If your hyperthyroidism is difficult to control you likely need definitive treatment, but if it can be managed with meds there is no rush.
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I"m so sorry you have to deal with this lady. Without knowing much more than what you stated in your original post, I would choose the surgery.
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@MamaPhoenix: true there is the chance. I second the suggestion of trying methimazole and seeing how you do with it. I often forget about it as a possible solution since I am allergic to it. They probably would have started you on methimazole in the first place if you weren't pregnant when you were diagnosed. I think it's worth a try to control it with meds if you can.
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My mom had her thyroid removed and THEN had the radiation trwatment. I wouldn't do the radiation with a young baby. My mom is living without ta thyroid no problem. I know a few people who live without one and it's not that big of a deal.
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@ashleyt: @MrsKoala: I knew about Methimazole too I wonder why that didn't even cross my mind? My endo didn't even bring it up. I wonder why. He jumped right into "our next route is RAI" right away. Unless I have a goiter that's getting to big? I know my throat has been sore lately.
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I had a complete thyroidectomy due to thyroid cancer. I also had radioactive iodine afterwards, but was not pregnant so didn't have as many of the issues to deal with as you would. If I would have chosen just one of them, I'd choose the surgery! It is not true that you won't be able to lose weight without having your thyroid gland. The medication works just as your thyroid would - it's the same hormone. It's also not likely that you'll have your synthroid dose adjusted that frequently. It takes a little while to get it adjusted, but then for most people, you're stable (much more so than with Grave's, because you no longer have the thyroid gland producing TSH in addition to the medication). I'd be happy to answer any questions you have about either procedure!
It sounds like the radiation has too many "what ifs" associated with it. I have a friend who had her thyroid removed in her late teens due to thyroid cancer and she has been perfectly fine after having it removed. Synthyroid is a easy medication to be on (I'm on it for Hashimoto's), so I think that would be easier than dealing with the unknowns of radiation.
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