[Bobbi]

#1065462

The pros and cons will probably NOT be equally weighted. Our subjective feelings weigh in subtle ways. But if you put things down, and give yourself time to mull them over, you will come to a sense of what you feel MOST comfortable doing. I totally understand your comment about limbos, and feeling the need to move out of the dithering mode. At some point you will need to make a decision. But as long as you are using an effective treatment now, you do have time to let your thoughts settle. Take some deep breaths, plan something you enjoy, and get away from the issue for some hours or some days. If you are currently being treated, unless your doctor thinks otherwise, you do not have to rush yourself through this one.

[lhc11]

#1065463

Yes. We’re off to the Smokies and renting a cabin for a couple of nights after the family reunion. I am actually under time pressure, in the sense that as an academic, I either do something this summer or next summer, as early as possible to allow for recovery (whether surgery or RAI). Seeing my husband and thinking about how I want us to try again to conceive sooner rather than later is helping me with the decision. I think.

[snelsen]

#1065464

I sense that you are close to the right decision for you! The cabin in the Smokies sounds delightful!
Shirley

[lhc11]

#1065465

Just an update. Had a really nice weekend with my husband and his family; then yesterday, on the way back to the Nashville airport, I couldn’t stop reading online about graves/thyroidectomy etc. Same for last night. I really am an obsessive type. Over the weekend I was able to come to some peace with the fact that I am probably having the thyroidectomy–everything points in that direction. But of course I am scared. Last night I read literally every related posting on this board that came up with a search for "thyroidectomy"; it actually seems like most people do ok, and of course I realize that many of those who post on boards in general are those with problems; here is very much hoping I won’t be one of them. One of the things I thought about this weekend is that fact that psychologically I just don’t think I can deal with waiting for RAI to take effect, wondering if has really worked, monitoring the move from hyper to hypo, if I will be one of the people who have to redo it–not a good place to be for someone who also wants to try to conceive soon, completely aside from the 6-month advised wait. Anyway: this afternoon I have a short appointment with my new primary care physician — I was forced to pick a new one in January when my ob-gyn could no longer be my primary doctor according to the new insurance plan rule. And she (the new doctor) has only seen me in my extremely hyperthyroid/anxious state, and both times–because I admitted to suicidal ideation–she focused on wanting to get me hospitalized. I understand that completely and appreciate her concern, but as a result I have had a very strange feeling about her and our rapport, and I realized over the weekend that as I venture deeper in the Graves waters and approach surgery that I really need to reconnect, let her see me in a calmer (if still anxious) state, and make sure I’ve really got her on my side. Speaking of anxiety: I am really anxious about how much I will have to push for regular monitoring of my TSH (which I know doesn’t change very fast) after the surgery, since from everything I’ve read it’s pretty crucial for conception. I’m hoping to ask my endo’s office today if I can already get a referral to a reproductive endocrinologist for later in the summer or not. Oh, and I’m also between ob-gyns because mine went to another practice; I have to figure out if I should follow her or not, but we didn’t have much of a relationship so I’m not sure it matters….but it’s still an odd place to be in. Sigh…I am trying so hard to take charge of this thing that is not entirely in my control….

[snelsen]

#1065466

So glad your weekend was a good one. I think you will gain confidence and much less anxiety when you have made your final decision. Sounds like you have, and although all of us choose different routes for different reasons, both subjective, objective and just plain emotional, you have done all your homework, you know yourself well enough and you know your reasons for wanting to move forward as quickly as possible, which does speak for the surgery. Go, girl!

Welcome to the world of human beings, feeling anxious about having surgery. It is the real outlier out there who does not feel some anxiety, and at the same time, feeling good, because the decision has been made. YOu know why, so you are golden.

YOu next posts can be about your post op course!
Re the primary care person, and her heightened awareness about your comment @ suicide ideations, this profession is
encouraged to really have heightened concern if they hear that in any context, so you can expect what happened. Your idea of seeing her again, in your present state, and simply explaining that you had a lot to work through, plus anyone who is hyper is all over the map emotionally at selected times. When I was at my most hyper, everyone thought I was nuts, and I did too!

Your idea of seeing her again, referring to that whole situation as a non-issue, and that you appreciate her concern but that it is completely off the table in your mind, should do the trick. This where you are now. You have had lots of stuff going on, and maybe it is time to slow down on your internet surfing. There is a lot of junk out there, too.
It sounds like you have a great surgeon, that you will be as ready and informed as you can be for this, and I can PROMISE you that you will feel sooooo good that you are taking action. I think the surgery and the post op weeks are all feathers in your cap, indicating beacoup progress to where you want to be!!! Moving toward your pregnancy planning.

I do not think it will be much of an issue for you to find an ob person, and definitely will not be a problem for you to have good care coordination with the endocrinologist and the labs will definitely be followed. Not sure where you live, but if there is a high risk ob person in your sights, maybe you can go to them. My son’s wife went to one for two reason, her age, she was 40, then turned out she was having twins. A reproductive endocrinologist is an outstanding idea. I guess I would talk to your friends, see if there is an ob they like which is covered by your insurance. It is certainly nice to have a good and friendly relationship with your OB, it is important when you are having it, but once that baby is here, they are out of your life except for a few post partum checkups. do some thinking about your primary care person, grab another appointment as soon as it is convenient, and get your concerns cleared up about that!

Now, I am a micro-manager and control freak about my own medical life too! I do the best I can in finding out about docs, and the MOST reassuring thing I can do is get copies of all dictated reports, labs, etc. Of course you need to sign the medical release of information forms, so put at the top of your mind to ask for it and sign it, as you check in for any new doc. Pay attention to how long they last. Some offices have a fair amount of common sense about that, and will just click a button on the computer and hand the dictated notes and labs to you. Others are very rigid about signing the forms..so sign the darn things!

WRite again, keep us posted about your decisions, your surgery date, etc etc. YOu are in the best of hands with "us" and the facilitators. Such a good site.
Shirley

[lhc11]

#1065467

Thanks, Shirley (and anyone else reading/responding). I did meet with my primary yesterday; her first question was "are you better?" and I said "well, not entirely, but better than when you last saw me." She did refer me to a high-risk ob in the same practice I’ve been going to, so at least I’ve got that set up for mid-August. Then today I just had my opthamology appointment. The doctor said he saw a little lid retraction but that that’s about it; he did have to order a separate "visual field" test because it hadn’t been put into the system, so I’m supposed to do that on June 21st, but that doesn’t involve dilating my eyes like today; he asked if I wanted it to establish a baseline and of course, the answer is yes. He said he mostly sees people *after* they’ve had RAI and have eye issues, so that doesn’t quite help me with my decision.

Got new bloodwork results yesterday too: FT3 at 3.0 (range 2.0-4.9) and FT4 at .49 (range at .75-1.54). So the endo has cut my Methimazole down to 5 mg from 10. We spoke on the phone today; she is referring me to a reproductive endocrinologist but doesn’t know if that will be covered by my insurance, so one more thing to figure out. It’s all the more complicated since my husband and I don’t live together; I am so frustrated by the fact that we will be spending the summer together but unable to try to conceive unless my levels are really ok before he leaves. The endo did say that if we lived somewhere without the surgical resources in my university town at our disposal, she’d advocate for RAI — but that because we do have such excellent resources, surgery can be offered as an option. She said I basically couldn’t have a surgeon with whom there was lower risk.

Despite all the above: I anxious today and feel unable to focus on my academic work; I have my preop physical tomorrow morning which is probably part of it. and I’m still feeling sorry for myself/preoccupied by all this. I need to try harder to give myself a break.

Oh, surgery is scheduled for June 9th. Assuming I really do go through with this, two weeks from today it will have happened.

[mamabear]

#1065468

Hi and welcome!
I wanted to ask if there was an option to use Tapzole(methimazole) or PTU(Propylthiouracil) before trying RAI or surgery or have you tried that already? I am so sorry for the loss of your baby.

I wanted to gently remind you that you must look after you first before trying to conceive again. I know this is happening so fast and you are not ready for it. It’s scary for sure. My first reaction was there was no way I was going to do RAI because it meant that I wouldn’t be able to conceive for 6 months and then who knows what after that and how long it would actually take. I did see a reproductive endocrinologist (RE) as well. I opted at the time for the medicine PTU and was able to achieve proper levels and with the help of the RE I was able to get pregnant. Then pregnant again, then pregnant again with no help at all. It’s a much longer story but I wanted you to know that I have not had my thyroid out nor have I had RAI.

I am currently in remission with no medicine being taking at all for almost 3 years now. I consider myself very very lucky. I have learned that regardless of how fast we want to get pregnant it will not happen unless it is truly the right time. I learned that in order to get pregnant again (i had one child many years before having issues so there is quite a gap between 1st and 2nd), I had to make sure that my body was healed properly.

Just having the RAI or surgery doesn’t mean you will be able to get pregnant right away. You need to feel better and not be tired and be able to feel 100% before you even try to conceive. You need to consider that your dh isn’t home with you and if you get pregnant and need help who will be able to help you. What happens when baby does come and you need help or your levels are off and you need help. These are not questions that I want you to answer to me, but to yourself. Having a plan will make all the difference, at least talk to your dh about it. Ask him if he will come home and stay with you or once baby comes ask him if he will work near you so he can stay in the same house. It takes two and if your health is an issue at any time you will need his help and you will need to know you have it before hand or you will stress over it. Stress is not good for anyone.
Just something to think about while thinking of surgery or RAI.

I hope what ever you do helps you become well again soon. Its never easy to feel like crap. Having a good support system from family does help a lot! You certainly have support here !!!!!

I remember that feeling of not be able to have a baby and thinking why can everyone else but not me ! I was so angry for so long. Again I have hind sight and realize that my body needed to be better, just like you. It doesn’t matter what you opt for but your body either way should be better and you should be feeling better before you have another baby. That way you will be able to have the strength to do this and be able to not stress over it and then be able to enjoy that little cutie pie!

Keep us posted. you are in my prayers.

[lhc11]

#1065469

Hi mamabear — thanks for your support. I have read your story with interest elsewhere on this site and have certainly thought about going the PTU/pregnancy route. I asked the reproductive endocrinologist about this on Friday and he did say "six of one, half a dozen of the other"–in terms of getting pregnant, he’s seen both. The thing is–at the high-risk age of 39 and with Graves, and having already lost one pregnancy–I want to do the safest thing I can for the next fetus, which from everything I’ve researched seems to be to have the surgery. If I was on PTU and anything went wrong–even if it had nothing to do with the PTU, which would be hard to know–I would blame myself.

Believe me, dh and I are doing everything we can to try to be in the same place–it’s just not that easy at the university level. I know we’ll have to wait to conceive, but I’ve decided to try to be positive and think that post-surgery my levels will adjust sooner rather than later. Also I do think we’re going to try freezing dh’s sperm (sorry if TMI) and trying IUI so that I am not stressed about traveling to be with him around my teaching. Seems like an investment worth making.

Anyway–just want to say I appreciate your perspective. If I were younger I would certainly be more interested in going the PTU route than I am right now. But I’ve decided to think of the surgery in a week and a half as my first "parenting" decision, if that makes any sense.

lhc

[snelsen]

#1065470

Good morning, lhc!
Just read your last post. I am full of admiration for you, how you have sifted through all the variables, factored in the human stuff, weighed your personal pros and cons as well as the available objective choices. The relative "instant gratification" of the surgery as opposed to the RAI makes sense in your case, you have made a good decision for you.
I know that it is challenging to live in the same place in the academic world, if the positions are not there. You will be fine. I think your idea of freezing some sperm makes sense. My view is that all your decisions have been made with the result that you are doing the right thing for your own situation. I look forward to your posts during your post op recovery, and to additional thoughts from you between now and June 9. Remember, it is a normal baseline to be anxious before any procedure. I would be worried about you if you weren’t! Love, shirley

[djones]

#1065471

Congratulations on making your decision. I’ve found decision-making based on sound reasoning to be challenging with GD! I’m very interested in how your surgery goes because I am considering it for myself. I got GD in 2007 (if not earlier), but was not diagnosed until the middle of 2008. I found a holisitc MD who put me on PTU as well as several supplements to support the organ systems that get so stressed from the overproduction of thyroid hormone. The one that helped the most with my depression was support for the adrenals. I have much more energy now (although nothing like what I had pre-GD) and no depression.

Best of luck next week. It takes alot of courage to have surgery. Let us hear from you.

[dixiegirl]

#1065472

Hi lhc,
You and I are pretty much in the same boat as far as our Graves diease decisions. Our levels are much the same, as are our options. I am leaning towards surgical removal as well. For me it has come down to, how much more of this can I take? I lived for a few years not even realizing my backpain, tremors, anxiety, and exhaustion stemmed from Graves. It got to the point I couldn’t drag myself off the sofa for more than a few minutes a day.
Since my diagnosis, I have logged countless hours in front of the computer researching options and treatments and complications, etc. Then one day, I realized my chances of severe complications from surgery weren’t much different than falling down a flight of stairs and breaking my back. It is a chance I, personally, am willing to take to reclaim my life. Not saying this is the right path for you, but if fear of complications is all that is holding you back, maybe that thought will help. Also, I have found myself sometimes unable to make some of the simplest decisions due to the anxiety that tends to be inherent with Graves. It sounds as though your surgeon is better than the average in his class. Trust his experience to lead you in the right direction, even though at the end of the day the ultimate decision is yours.
From reading your story, I can say that you certainly sound like a strong, intelligent woman. You should be admired for your ability to overcome and endurace to persevere. You will be in my thoughts.

[lhc11]

#1065473

Thank you, Shirley and djones and dixiegirl! I really, really appreciate the support. I have to say that I myself can’t believe I’ve made this decision…since I spent nearly two months in the GD-enhanced back-and-forth anxiety about even the simplest decisions, let alone this huge thing. I feel lucky (if that’s the word) that I was diagnosed so quickly compared to so many others–I can’t even imagine living longer than I have with the condition unrecognized. At any rate: the countdown to surgery all feels very surreal to me, including the potassium iodide drops I started taking yesterday (note to dixegirl and djones: if you go this route, go for cranberry juice to dilute the drops–that’s what my surgeon’s nurse recommended and she’s right, you can’t taste them in it). I am *really* holding tight to the "this is my first parenting decision" remark I made up above. And Shirley, you were right: with the decision already does come a renewed sense of determination and peace (and anxiety!).

[suzzie]

#1065474

Hi im new to computers,dont realy know my way around the keyboard so,escuse any mistakes.Anyway,i had all my thyroid out about two and a half years ago after being over active.it took along time to get my medication right and after going into hospital about five times to have the opp,it finally got done.It took a while to get my medication right (again)but now i am getting better all the time.The scar is not realy noticeable,there isnt any change to my voice.The consultant advised me to have the opp,he said it would help to supress the thyroid eye desease,but it didnt.I have gone on to have two wall orbital decompression in each eye.I am due to have cosmetic surgery in about eight weeks.I hope you are doing ok.

[carlydm]

#1065475

Hi,

I had a thyroidectomy 4 yrs ago and for me it was the right decision and I don’t have any regrets. I didn’t have any complications and took 6 wks off to recover. I have had some depression since my surgery but it’s not been too bad. One thing that I think is important to mention is to have your levels followed closely. My TSH went very hypothyroid within two weeks after my surgery I was at +56 and had no energy whatsoever. I’ve read that being put on some synthroid right after surgery can prevent this from happening. It did take time to get my levels back to normal as I did a bit of yoyo-ing but once my levels stabilized I’ve been pretty good. Good Luck!

[lhc11]

#1065476

Hi Carly, and thanks for your message. Yes, as the surgery approaches I get more nervous about my levels; I intend to discuss the post-surgery monitoring with my endocrinologist on Tuesday when I get my last pre-surgery bloodwork. From what I understand, the plan is to put me on the synthroid right after the surgery, so I have my fingers crossed. I am a little worried because since my levels leveled out to normal last week, I have already put on some weight (or rather, put back some weight), and I can imagine it being hard to get the dosage right if I keep gaining steadily. Anyway: glad it was the right decision for you–can you tell me how you came to it? I’m taking any and all support on this right now…..

best,
lhc

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