[Ski]

#1065448

I am SO GLAD you found us! Sorry to hear you’ve been going through this, and with your particular set of issues it must seem like complete torture.

Couple of quick thoughts ~ alternative/holistic medicine may be able to help you feel a little better as you go through your treatment and healing, but it cannot do anything to adjust your thyroid hormone levels. Believe me, if it were true, I think 100% of us here would’ve done it. There is absolutely NOTHING that suggests, scientifically, that holistic treatment can "cure" hyperthyroidism and/or Graves’ Disease.

The next thing is that I think you need to stop kicking yourself over what appears to be your choice of treatment. I know you haven’t fully decided, but here’s the real truth: all three of our treatment options can return us to health. We all have a myriad of reasons, physical and emotional, why we choose a particular treatment over another. NO ONE has the right to tell you that you made the "wrong" choice because you didn’t choose the same treatment they did, or feel they would, in your position. No one knows you better than you, no one has to live with the decision except you. All that is really, truly important is getting well.

Your decision process is definitely complicated by the disease and the treatment process ~ all the while you’re having other issues, your thyroid hormone levels are bouncing all over the place too. Remember that your body has not yet begun to heal from the hyperthyroidism ~ it can’t even start until your levels are normal, and stable. I would say you’re smart to consider RAI in light of your anxiety issues ~ it’s a long process, and wondering if/when can be hard for anyone. For you, it may just be too much.

Perhaps it’d be helpful to make a chart with the three treatment options, and write down your "pros" and "cons" for each form of treatment. Hopefully it will start to become clear, and that’s something you can look at and remember that you went through a real, objective process to make your decision. THEN you have to just put it behind you and move to the next step, healing and feeling better! It won’t be terribly quick, no matter which route you go, but we’ll be here for you throughout. ” title=”Very Happy” />

[snelsen]

#1065449

Hi, Ihc11!!!!!!
I just got home, pretty tired now, time for a small siesta after I write this quick note, with more to come later tonight.
You will LOVE this site. Here is a suggestion for instant gratification. Go to the search" box, type in thyroidectomy, do the same for RAI. I did not find the particular book you referenced to be helpful. I prefer endocrinologists familiar with Graves, surgeons who do the surgery, and ophthamologists who have Graves patients. This site, and your docs, is where you want to be. Not too far back in the posts, there is someone wrestling with the same issues you re having right not.
Maybe you will see that thread.
Question, do you feel better now that your are getting your hyper feelings under control,…that you can go back and finish the school year? How does that feel when I ask the question? I know it’s work, but I am sure it has been hard to be on medical leave, too.
Lots of folks on this site have had RAI, including some or most of the facilitators.
I had the surgery, really, it is not that big a deal post op recovery wise. Important thing is to get a surgeon who understands all of it, and does the surgery on a regular basis. They know their anatomical landmarks, and you will be fine! From my view, concerns @ your voice is related to the skill of your surgeon. Check it out with your doc. I don’t think anyone on this site has mentioned that issue.
Probably you are getting very good referrals for this. Also had it at a univ. hospital, Iowa City. I wanted it done. NOw!~
I would say that your interest in getting pregnant is an additional reason for having the thyroidectomy.
I would say that I was more tired for 2-3 weeks after the general, my neck throat was a little sore, not enough to even take anything for it. I wanted to know that i would never be hyper again. In fact, it took several decades before I needed to take a thyroid supplement.
I suspect you will get a lot of reassuring responses. Check the old posts until you do. Sounds like you have really good group of docs, yea!
I know I did not address everything, but it is now raining in Seattle, and we are to have very strong winds, and I think I will add a short nap to that mix!
Shirley

[Ski]

#1065450

We have actually addressed the possibility of voice issues quite a bit, along with the possibility of losing or damaging the parathyroid glands (which affect the body’s calcium levels) ~ but as Shirley says, the bottom line is that an experienced surgeon who has a low complication rate is your best defense against any of these issues. I understand there is a device they can attach to your vocal cords during surgery to "warn" the surgeon that they may be coming too close, but I don’t know much about it. Our conference docs have consistently told us that getting a surgeon who does THIS specific surgery a lot is the best resource, because while other surgeons may say to you "oh, it’s just another surgery," they are wrong. The structures near the thyroid are very complicated, and it takes a trained hand to deal with them successfully.

I think the encouraging thing is that we haven’t had many people post with problems in their voice after the surgery. That’s a good sign. Just to be fair, I should mention that one member from Scotland did have a "rough voice" for a period of time after her surgery, and I think her surgeon told her it may not fully resolve. She did not LOSE her voice, though I know that paralysis of the vocal cords is a very remote possibility. I don’t want to promote anxiety, but I do want to be fair and let all the facts out, as we know them.

[lhc11]

#1065451

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.

[Bobbi]

#1065452

Hi —

I just wanted to give a word of encouragement. While being hyperthyroid makes us horridly ill, if we get it treated effectively (and there are two main ways –"antithyroid" drugs or removal of the thyroid) we do have a wonderful chance of getting well again. It might help you to figure out what is best for you by setting down a list of pros and cons, using as objective a set of information as you can. Add to this any comments your doctor has made for you for or against the treatment options. While I agree totally that this is your decision, there can be sound medical reasons why one person should do, or not do, one of the treatment options. Our doctors typically weigh in with these. For instance, if someone has a wonky heart to begin with surgery, or RAI, might be more dangerous for them than for the average person. Or,if someone’s liver is compromised, the antithyroid drugs might not be a sound medical choice. These things happen rarely, but we really should pay attention if our doctor warns us against something.

Having things written down helped me to figure out what I wanted to do. It might help you, as well.

As for weight — one of the more dangerous aspects of being hyperthyroid is that we lose muscle, especially the larger muscles in the legs, arms, and chest. Muscle weighs more than other tissues in the body, so losing muscle can appear to be weight loss. But the presence of muscle helps to raise our metabolism because muscles burn more calories, even at rest, than other tissues do. When we get back to normal levels of thyroid, the muscle mass lost starts to come back. It is "mushy" muscle (according to one of the doctor’s at a conference) and needs to be exercised to strengthen it and regain stamina. That returning muscle looks like weight gain, but it is GOOD weight to gain because it helps to raise our metabolism. My point: don’t look at the scale as the absolute guide. I regained 15 pounds after my RAI, without changing into a higher clothing size — I was regaining muscle, not flab. Regardless, the aim is to get healthy again, and regain our normal life style — at which point weight issues should normalize over time.

I do wish you good luck with your decision, and with whatever treatment you choose.

[lhc11]

#1018524

Hi — I’m introducing myself and, I guess, looking for support and probably information as things move forward. I got my diagnosis of GD about a month or so ago; the general "hyperthyroid" diagnosis was back in late March in an emergency room. As of labs taken yesterday, my FT3 is 2.9 (range of 2-4.9) and my FT4 came in a little low at .58 (range of .75-1.54), so I’m now down to 10 mg/methimazole per day instead of the 60 mg/day I started out with.

I’m 38, turning 39 in August; just got married last summer (my husband just turned 51); we got pregnant literally on our first try but then I had a miscarriage, which may have been what sparked the Graves (just a guess–it’s after that that I noticed that I was getting super-hot at night, and that lasted all through the winter, and I live in a very cold state). We want to try again (and were doing so until I got this diagnosis), and that is one reason that I have signed myself up for a thyroidectomy on June 9th; however, I haven’t completely decided and thus am also signed up for RAI on June 9th/10th. I have to pick one and cancel the other. I do know that I’ll have to have my hormone levels right even after surgery before we can try to conceive. But here’s the thing: I ended up going on medical leave from my academic job as of the hyperthyroid diagnosis, which seems to have helped lead me into the pretty major depression I am still going through (started as anxiety back in late January, and I do have a history of anxiety/depression), and so *now* one of my rationales for the surgery is no longer even about pregnancy but about my psychological issues, which include being unable to deal with uncertainty/indecision–i.e., doing RAI and wondering if/how fast it’s working, if I’ll have to do it again, if it will worsen any eye issues (which I don’t even know yet if I have–my endo says she didn’t see any evidence, but I couldn’t get an actual opthamology appointment to check things out until May 27th; I am having trouble with my contact lenses, but then again they are also a year old). Am I out of my mind to be willing to go under the knife just because I feel this way? The surgeon who will do the procedure is a university hospital thyroid surgery specialist, so I am not as worried about complications as I might otherwise be, though I do know that the risks are there, and as an academic I am worried about my voice–but this is a reason to do the surgery sooner in the summer rather than later in order to be recovered for teaching in the fall.

I went through this past weekend reading (skimming) some of Elaine Moore’s book which is so biased either aggressive procedure, and all the testimonials from those who have used herbal/alternative remedies really freaked me out–made me feel irresponsible towards myself for going forward in either aggressive direction. But either going holistic or going through 18 months of medication to *see* if I maybe go into remission, at my age and with my set of issues, doesn’t seem like it will work for me (though I did make an appointment at an integrative medicine clinic–however, that’s not until the day before my scheduled surgery and that seems maybe not the best time for such a thing?). At any rate: I am currently finding myself consumed by thinking about GD, which is also fueling the depression but I can’t seem to help it. And I just came from an appointment with my (new since this all started) psychiatrist; he’s had me on prozac since my weird reaction to going back on zoloft in early February (I went off it for the pregnancy after being on it for seven years), but it just hasn’t been working to pull me out of things–and so he just agreed to let me try to make the switch back to what used to work for me, especially since the side effects we initially thought I was having from the zoloft (tremors/palpitations) may well have been from the undiagnosed hyperthyroidism. He’s also got me on 200mg seroquel for sleep, which I hate but he didn’t want to change that along with the zoloft-prozac thing; his goal is to get me off it but he says he thinks I should stay on it right now until June 9th and the surgery if that’s what’s happening. feel good that he’s letting me make the switch back to zoloft–frankly, I don’t care if it only psychosomatically improves my depression, but I do also know (a little) about SSRI’s lowering TSH levels and I wonder how this is all going to work post-surgery, IF that is indeed what I do.

So again: am I crazy to go the thyroidectomy route and try to move forward from there? I’m terrified to wake up and think "what have I done to myself?" No physical exigency is forcing me into the surgery–I kind of wish it was, I wish I didn’t have the choice, stupid/ungrateful though I know that is.

[lhc11]

#1065453

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.

[Ski]

#1065454

Remember that we have basically two populations here on the Bulletin Board: those who are newly diagnosed, and those who have had an unusual amount of difficulty. That means the posts you find here can be skewed toward illness, rather than successful treatment. I mean, how many people would seek out a support board to say that they had a great treatment, all went well and they feel fine? I’m sure you see what I mean. So definitely don’t try to use the percentage of complications with patients on this board to try and make some sort of guess as to how common those difficulties are in the overall patient population. Ask your doctor or find good studies ~ the treatments we use have been in use, and carefully studied, for a very long time. RAI, more than 60 years. ATDs are a little more recent, but we still have some very good, longterm info. TT has been done the longest. So there are some really good empirical studies on each. The fact that each of these treatments may have a downside is not in question, so the fact that someone can say there’s a CHANCE of a bad outcome simply cannot remove that treatment as an option. We do not have an absolutely perfect option, that’s just the way it is. Right now, since you’re using ATDs and finding some relief, give yourself a moment to let the whole thing settle in, do your research, and I think by the time your appointments come up, you’ll have reached a decision you’re happy with. If not, you can also move the appointments out, probably without much fanfare.

[lhc11]

#1065455

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.

[Bobbi]

#1065456

One of the reasons why RAI is often recommended over surgery is precisely because it involves fewer side effect risks than the surgery does. There are other "cons" in the RAI column, but some of the "pros" are that there is no endangerment to the parathyroids, nor to the vocal chords, nor is there risk of infection the way there is with surgery.

That said, my sister-in-law had a parathyroid that was running amok, and she had to have it removed. The problem was that the doctors could not determine which parathyroid to remove until they had removed it, and tested it, during surgery. She had at least one, and possibly two healthy parathyroids removed before the doctors found the bad one. She told me that it wasn’t a problem, as long as there was still at least one functioning parathyroid. I do not know if this information is absolutely true, and it is indeed something you should check out with your surgeon and other doctors. But if it is true, it would eliminate at least some of the worry the recent medical studen implanted in your head.

[lhc11]

#1065457

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.

[snelsen]

#1065458

Hi lhc11!
You have learned from the posts that there is no "right" answer, except the one that YOU choose, with the help of your endo and your surgeon, combined with your own conundrum of thoughts. You have done everything so well. I would like to tell you again that you seem to have ended up with marvelous docs.
A new thought for you. I think you will feel VAST RELIEF and HAVE MUCH MORE HOPE AND CONFIDENCE once you have made your decision. My own experience with myself is that I do not do well with limbo, even when I am creating it myself. I feel less confident and in control. Once I have made a final decision, it is like a huge weight is off my mind. Then I want to take ACTION, move forward. People are different, so you can also throw in this thought among your pros and cons.

My TT barely slowed me down, and at the time I had a lot on my plate. A 3 month old, a husband who was a third year med student, a full time job as an RN, and breast feeding. I think I went back to work, which was fairly strenuous, in three weeks. That was a dumb thing to do. Because I had so much going on in my life, and my work involved a lot of lifting, I would replay that part of my post op recovery, stay out at least five weeks.
I equate "sore neck" post op with the experience of "sleeping wrong" and waking up with soreness. If you choose to continue yoga, you can accomodate to any temporary limitatio. Probably stretching does not make a lot of sense until your surgeon says it is ok. There is an incision which needs to heal.” title=”Smile” /> Not sure how critical yoga is in your life, but if you choose a TT, you can discuss it with him.

I am very impressed with the quick response from your surgeon. His comments are appropriate and reassuring.
In the end, I am sure you will make the right decision for you.
I have just been through the decision of choosing a surgeon for another procedure. I talked to five! I was a mess until I made a final decision. Then I was a peace. Felt I had done the right amount of thinking, homework, pros and cons, and the day looked brighter from that moment forward.

Whatever you decide, it will have been the right decision for you. I hope you are going to the reunion where the weather is nice. Your thoughts of getting away from this for a while, being with your husband, getting away from research on your iphone, sounds like a happy interlude for you. Distractions have a positive place in this process, too!

I am sorry you had to even KNOW about this website. I do not like to have Graves, and I look forward to the time when I have gone through the whole Graves’ process. Then I plan to be one of the people on this site who can tell others that "Yes, this WILL end!"
Shirley

[Kimberly]

#1065459

Hello – Sorry to hear of your Graves’ diagnosis, but you have definitely come to the right place for support! I agree with Ski that a good old-fashioned "pro" and "con" list is helpful. In your first post, you mentioned a desire to get pregnant — if you are hoping to conceive in the near-term, that will end up influencing your decision. RAI is not recommended if you are looking to become pregnant within 6 months of treatment. I’ve heard some say as long as a year, but 6 months seems to be the most common approach.

Also, if you choose to stay on Anti-Thyroid Drugs, PTU is the preferred drug during the first trimester of pregnancy, due to the increased risk of a specific birth defect for women who take methimazole during the first trimester. The downside is that PTU comes with a higher risk of liver complications than methimazole. This is a *very rare* side effect, but is something that should be factored into your decision.

And, as you said, regardless of your treatment choice, you are smart to want to wait to conceive until your thyroid levels have been stabilized.

[lhc11]

#1065460

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

[lhc11]

#1065461

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.

[Author]

Posts