Forum Replies Created
-
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
Thank you all.
I feel pretty confident about the surgery- as confident as I can be. My endocrinologist is willing to prescribe brand name Synthroid (as opposed to the generic) 100 mcg. I kept going back and forth about Nature Throid vs. synthetic, but my endo. says he usually prescribes synthetic- so, I figured I’d give it a try and hope it works well for me. What are your experiences on Synthroid- those of you who are on it? I read a mixed bag online. My worry with Naturethroid was some people have hyper like issues because of the T3 I guess. So, maybe I’ll take my endo’s advice from the get go (for once!) and try the Synthroid.
I’m also really worried about gaining a lot of weight. I have to admit that is a big worry. I’ve always been fit, in shape, and a good weight. I used to dance professionally (for 6 years) before having my babies. Before I got sick, I worked out a lot, swimming, spinning, weights. The horror stories of people gaining 20-100 lbs freaks me out immensely. Vain and stupid no doubt, but still real for me. Then reading how no matter how much they exercise or how well they eat, they still gain huge amounts of weight worries me. Can anyone calm that fear for me? I’ve only read about a few people who didn’t gain much. My endo. is a good guy who is ready to order bloodtests and monitor me and work with me- so I am grateful for that. I just don’t want to balloon up.
Alexis
Hi Stacey
I’m sorry you’re dealing with all of this; it’s no fun, that is for sure. Congratulations on having 2 children though- a beautiful blessing. I think most people will tell you that you have to decide what is right for you, your circumstances, and what makes you most comfortable. Both surgery and RAI have risks; I’ve gone back and forth for a month now. I was on methimazole (like carbimazole), but it was hurting my liver, so I had to stop and make a more permanent decision. RAI just didn’t sit well with me (even before I knew the methimazole was causing me problems). So, finding a surgeon was what I wanted. I am still as nervous as all get out. My surgery is scheduled for June 15th. I’ve managed to stay stable thyroid wise for a month off the methimazole; so, I hope to hang on 2 more weeks. Take time to research your options and then do what sits best with you as long as you are a good candidate for the option you want. My endo. wanted me to do RAI, but he does support me in choosing surgery. I don’t know much about cancer probability from RAI; I don’t think it is very high. I know for my situation (because I’m breastfeeding), if I chose RAI, I had to wean, stop lactating and be dry for a few months before they’d treat me bc of the possibility of the radioactive iodine pooling in breast tissue and causing breast cancer, but that is a different circumstance. I think RAI is considered pretty safe for most people. The links to the treatment options on this website are thorough and helpful. I’d check them out and talk with your doctor, then do what feels right to you.
Alexis
Thank you both for your replies
I am leaning towards surgery. I know that moms often get hyperthyroid postpartum, but the type that resolves itself is caused by postpartum thyroiditis and not Graves. I had an uptake scan to know with certainty which it was. Thyroiditis percentages are less than 4% on the uptake scan and the thyroid barely takes up any iodine & it takes a long time to get a picture of it. My percentages were 19% & 34% and my uptake pictures were easy to take within 2 minutes. The technician said with thyroiditis patients, it can take up to 10 minutes to get a picture.- so my endo. says that it is not thyroiditis. Believe me, I wish it was. Part of me is tempted to wait and see what happens, but I know that if I go hyper again, my treatments will be limited due to my inability to take methimazole. I could try PTU, but I’m reluctant. If I had liver issues on one, it seems like it would be more likely on the other- I don’t know. Surgery would be out if I go hyper, and that leaves RAI. I know for some it works quite well, but I have a hard time being comfortable with RAI. It’s hard. My husband still is hanging on to the idea that it’s thyroiditis. My endo. though is definitely 100% sure it’s Graves.Surgery is scary, and I am worried. But, my thyroid levels are in a very good place right now so, I have a window to do this. hhchong, I was only on methimazole 7 weeks (5 mg.) and I leveled out right away after my first blood test at 7 weeks after starting the meds. Of course, along with those lovely thyroid levels were some very elevated liver enzymes- so that really stunk. I was a mess that night as I was told by the doctor on call to stop taking the methimazole right away. But, I have maintained normal levels for a month now. My endo. gives me a few weeks maybe a month. He said I could go longer, but he is sure this is Graves. So, I’m reluctant to wait until I start to go hyper. Some have suggested I do that with the idea that maybe I won’t go hyper for years and years- but with only 7 weeks of ATD’s… I don’t know. I worry about the horror stories I read online and complications, but as my husband says, stop worrying about the “what if’s”. My surgeon is an ENT who specializes in thyroid cancer surgeries, so I feel pretty confident in him. I guess as confident as I can about surgery. He is knowledgeable about Graves too. I’ve had one surgery where I was under general anesthesia before (sinus surgery 3 years ago). I did pretty well with that. Hopefully, I will do okay with this.
hhchong, what prep. meds are you going to be on? I’m supposed to start potassium iodine drops and my betablocker on Tuesday (7 days before the surgery). My heart rate is good, but I guess it’s a precaution for surgery. I’ve never taken a betablocker, so I’m nervous about that. My endo said I can take 1/2 a 25 mg. of Atenolol. Tuesday is kind of my day I have to decide as my endo said that the potassium iodine can “fuel the fire” of hyperthyroidism if taken too long- so if I take it, I kind of feel like, that’s the decision and I need to move forward with the surgery. Nerve wracking.
Alexis
