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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
in reply to: Wondering? #1065403Hi — just posting back about my experience yesterday at the hospital. I spent most of the day doing the "pre-op" stuff for my thyroid surgery (yikes), and then the late afternoon speaking to a (ridiculously young-looking) reproductive endocrinologist. I tried to get him to give me a definitive answer about PTU and pregnancy vs. thyroid surgery (vs. RAI too, but I also mentioned that I didn’t want to do that in my particular situation and with my particular psychology). He actually said something like "six of one, half a dozen of another," and said he’s seen both. He also even said that there’s new evidence that methimazole is perhaps not as dangerous as was previously thought, though he didn’t elaborate. But for me–having already had one miscarriage–I want to be as safe as possible the next time around, because if something were to happen and I hadn’t been, I would blame myself. I actually decided that my husband and I are going to try artificial insemination as soon as we can after the thyroid surgery when we know my levels are ok to do so…since no one is getting any younger here and since my husband and I don’t actually live together except in the summer and one month in the winter, and it’s far too stressful for me to think about traveling to be with him around my cycle like we tried last academic year.
I am not giving any medical advice–you have to decide what is ok for/with you, in consultation with doctors–just reporting back on what I was told and what I think I/we are doing. One thing I will say, though, is that I am very glad I saw the reproductive endocrinologist; just doing that made me feel more positive about having Graves/wanting to be pregnant than I have in quite a long time. It’s their job, of course, to make you feel like it’s all going to be possible–but it still made me feel better. My insurance covered the consult (they don’t cover fertility treatments, but consults/evaluative stuff, yes), so you might want to check to see if yours will do so if this sounds like something you want to do.
in reply to: Wondering? #1065402Hi,
I just want to offer my sympathy. I’m in a somewhat similar position, as I was diagnosed with Graves about a month and a half ago (which may have been triggered by a miscarriage I had in September), am turning 39 in August, and want to start a family. We got pregnant on our first try without any help last summer (and then didn’t manage to conceive after the miscarriage), so hopefully we can do it again, but the diagnosis has obviously thrown a huge wrench in our plans — particularly since my husband and I are two academics and haven’t managed to get jobs in the same place yet. I too was wondering about PTU and trying to conceive again this summer while we are together, but my doctors have advised me to deal with the thyroid issue first and not make myself more of a high-risk pregnancy. Given our limited time frame and the fact that if I got pregnant after RAI and had another miscarriage or something was wrong (especially since we would want to try again ASAP, i.e. right at the 6-month mark), I would have a hard time forgiving myself, so–unless the reproductive endocrinologist I am seeing today has anything radically different to say–I am going ahead with a thyroidectomy on June 9th (in fact I have my pre-op physical today, before the reproductive endo appointment). That said, I live in a university town with expert endocrine surgeons, which certainly affects my decision–just yesterday my endo said that if we didn’t live here with this particular resource, she would be pushing RAI over the surgery. I know that it may take some time to regulate my hormone levels after surgery, but I have my fingers crossed. I guess I’m with Laurel–I would feel better about a pregnancy not on anti-thyroid medication (especially since I may also be on an antidepressant). But I am a little younger than you so that does of course make a difference too.
Anyway….I will let you know what I learn today in case it would be of any help. I just want to say that I know how much this totally sucks. I’m actually jealous that you were given the green light to try to conceive!
lhc
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.
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….
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.
one is also on zoloft and thyroid replacement at the same time. But I will have to finish this later as clearly doing it on an iPhone doesn’t work….I’ve lost two longer posti
gs already.Ack–I just wrote a long reponse about all sorts of things on my iPhone while travelling and lost it when the boar wanted me to log in. In short: I don’t know how to stop thinking about all this, it is being in limbo that is making me crazy, but pro and con lists rarely help me if the items aren’t equally weighted which they’re often not. Then I asked if any
Well, my surgeon wrote me back first thing this morning (I asked him both about risk and about subtotal vs. total thyroidectomy). He said what I actually already knew from my research–that is, that subtotal and total surgeries both carry risk of damage to the parathyroid and hoarseness, and that subtotal carries a higher risk of continuing hyperthyroidism (TT does make total sense to me in this regard–why have the surgery at all if you run the risk of becoming hyper again [though I do know that some tissue remains no matter what]). He then said: "in my hands, the risk of long-term damage to parathyroids and vord cords are 1%. about 5-10% can have temporary problems but the vast majority resolve." I don’t think he’s bragging–as I’ve mentioned, thyroid surgery is pretty much what he does, and at a renowned university hospital. I want this to make me feel better. I want it to be ok to go with my gut that surgery is the right choice for me….of course it is ok, but I’m in a psychological state in which I keep second-guessing, wondering why I am willing to run risks I don’t have to run with RAI.
I woke up anxious this morning (well, like every morning), unsure if I could go on this trip today to my husband’s and then on to his weekend family reunion with all of this preoccupying me so much. But I think I just need to get out of town for a few days and try hard to just stop thinking about all this if only for a little while. It would probably be healthiest for me to put a moratorium on googling things with my iPhone as well as being away from my computer–I wouldn’t take the iPhone if it weren’t the only phone I have.
Yes, you’re right (re: the populations on boards like these, and all the rest too). And: I need to calm down. My surgeon — whom I just emailed — does 100-250 parathyroid surgeries per year; that doesn’t include the other thyroid surgery he does; he’s an endocrine surgery specialist. I need to assume that this is a guy who knows his way around the parathyroid glands. Plus I found a glowing review of him online from someone he did a TT for in December.
Ok, well, I was just talking to a friend’s daughter (who just finished medical school) on the phone and she was very concerned that I think harder about possible damage my parathyroid glands and future possibilities of osteoporosis if I go the surgery route. Aaagggghhh. I *do* know about this risk but maybe I haven’t been thinking enough about it? I’m about to email my surgeon directly and ask him what he thinks (not that he can know until he operates…..or even after that). I say "aaaggghhh" because I thought I was really close to a decision and now feel almost back at square one. Searching for "parathyroid" on this board doesn’t really help….some have had no trouble, some have had a lot…..
Meanwhile I’m supposed to be packing to go out of town tomorrow for 6 days. And instead I’m frantically researching…once again.
Thank you, Ski and Shirley, for the truly kind responses. I have indeed been going through hell. I’ve always been really healthy, and having to suddenly confront a future with Graves and make this decision has just thrown me for a complete loop (as you can probably tell from my first scattered post). I have been feeling better back in non-hyper mode, but Ski, I guess you’re right, I haven’t been really thinking about the fact that my body hasn’t healed from being hyperthyroid, largely because right now I feel physically fine. And to be honest, the weight I’ve lost (combo of the hyper mode and anxiety) has put me at a size I’ve wanted to be for a long time–so I am also dreading becoming hypothyroid, gaining it back, or gaining even more, which SSRI’s don’t help with either. I know a lot of weight gain doesn’t have to happen but I am still scared. Shirley, to answer your question, I didn’t finish the school year; I did just get my doctor to take me off medical leave for the last two weeks, but mostly to get back some sick leave time. My classes got taken over, including one by a senior colleague who is also responsible for putting me up for tenure — which, by the way, I am going up for this summer/fall–another rather scary thing as I currently feel swamped by all of this stuff and not at all motivated by my academic work. I have really been derailed. At least I just went to a yoga class–the one thing I’ve managed to get done all day–and one thing I can’t bear to think about is how post a thyroidectomy (which would/will be total) I will not be able to go for a while because of all the neck stretching involved….
Another thing I couldn’t fit into my last post–I had to cut it down!–is that my husband and I don’t live together because we are academics in two different places. It’s a long story but suffice it to say that it definitely adds to my stress level and my unhappiness as I go through all this. He will be with me over the summer and through whatever procedure I go with, however. I’m supposed to go out of town tomorrow in fact to where he still is at the moment and then to a family reunion of sorts (his) and I just don’t know if I should even be going with all of this going on, but then again, maybe getting totally away for 6 days is what I need. Oh, my husband’s in favor of surgery because he just doesn’t like the radioactive concept; in fact most people in my life are advising the surgery for one reason or another. But I know in the end it’s all my decision. I just wish I didn’t have to make it at all–I am to some extent still in denial about all of this, it’s all happened so fast and been so agonizing.
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