[lhc11]

in reply to: potassium iodide drops #1064631

That does sound like the right decision for you, and very kind/thoughtful of you vis-a-vis your co-worker. Now you can just look forward to becoming one of the people who posts about how well surgery went…. ” title=”Cool” />

lhc11

[lhc11]

in reply to: Surgical Consultation is Scheduled #1064614

I wanted to add a small follow-up point that has nothing to do with your question, but that might be helpful to you and/or others after surgery. Everything went great for me, but about two weeks afterwards (!) I had a strange off-and-on experience of feeling shortness of breath, not connected to exercise or exertion (though possibly connected to humidity/heat); I posted about this elsewhere on the board but I don’t think I ever followed up about it. At any rate: I would feel like I wanted to breathe in very deeply, but that when I did, it wasn’t satisfying me, and at one point I panicked about it, which of course didn’t help matters. It was very strange–my throat was not obviously constricted or swollen, and my endo tested and I was 100% oxygenated and my calcium levels were normal. The only thing that helped was massaging my scar as soon as the shortness of breath came on, something I never would have suspected would help (though I was massaging it for healing purposes on a regular basis), and that my surgeon’s nurse recommended when I reported my symptoms; as she pointed out, when they remove your thyroid lots of healing tissue "fills" the space it was in, and that can produce some weirdnesses for some people. In retrospect I think my throat felt tighter than I realized as the tissue/scar was healing, and something about that made me *feel* as if I wasn’t getting enough air even though I actually was. The issue only lasted, off and on, for maybe a week, so it’s no big deal–just alerting you in case it happens. This is NOT to say that if your throat feels constricted at all after surgery that you shouldn’t call your doctor, because you *absolutely* should–there is always the (very rare, if you have a good surgeon) possibility of infection/blockage/etc. that might need to be checked out.

[lhc11]

in reply to: Surgical Consultation is Scheduled #1064610

Hi there — I just had my thyroidectomy on June 9th (you can look up all my musings and postings about it by doing a search with my user name, lhc11). I had Googled and found a really extensive list of questions–almost too extensive–that I asked my surgeon, and I just tried to find it for you but can’t (there are actually a lot out there). But off the top of my head, I would say that the most important questions are:

1. how many thyroidectomies do you do per year (sounds like you already know the answer, and 200 is a very good number!)
2. what is your (the surgeon’s) personal risk rate for damage to a) the laryngeal nerve and b) the parathyroid glands?
3. how big do you anticipate my scar will be?
4. how long do you expect the operation to take?
5. can I spend the night in the hospital if I wish? (this is more of an insurance question, but in my experience it was the surgeon who placed the order for that night–and I *do* recommend spending the night–see one of my posts about needing a catheter for urinating after surgery….sorry, but it can happen though it’s apparently rare).
6. will you start me on replacement hormone the day after surgery? (the answer to this is hopefully yes–I read some things that suggested that people who start right away, which I think is now more standard practice, run less risk of going hypo and do better in general).
7. will you be testing my calcium levels right after surgery, and having me take calcium (and/or Tums) in the week following surgery? (the answer will almost definitely be yes).
8. how long do you expect it to be before I can resume my normal activities (work, exercise, etc. — in my case, a week or so, two weeks before strenuous exercise).
8. when will I need to do the hospital pre-op visit? (I had a day’s worth of blood tests and explanatory discussions about 2 weeks before my surgery–they like to see where you’re at within a certain window of time before the surgery, take you through the details, etc.).

They should have prompt and clear answers to all of the above. Good luck! I don’t regret my surgery for a minute.

lhc11

[lhc11]

in reply to: potassium iodide drops #1064628

Hi there — as far as I know, it *is* the norm to take the potassium iodide for 9-10 days before surgery. I took it 3 times a day for 10 days. The explanation my surgeon’s nurse gave me (though I’m sure Bobbi’s information is also correct) is that it makes the thyroid less "vascular" and so easier for the surgeon to see what he’s doing. So taking it made me feel a little like a lamb preparing for slaughter, I have to say ” title=”Confused” /> — but then again, my surgery only took 45 minutes, so my guess is it really helps. My big advice for whenever you go ahead with things is to do what my nurse suggested: mix the drops in a full glass of cranberry juice, and you won’t taste them at all (though you will get sick of cranberry juice). For the times I was away from my refrigerator’s gallon jug of juice, I got kids’ appple/cranberry juice boxes to carry around with me–very easy to squeeze the drops into the little hole where the straw goes, put the straw in, shake a little, and drink it down.

Good luck! I say, don’t postpone the surgery if you can possibly avoid doing so. I thought at one point about postponing mine and am so very glad I did not and that it’s behind me….

lhc11

[lhc11]

in reply to: First Appt with Endo! #1064732

Hi — that’s great that your endo was so thorough and patient. One or more of the facilitators will surely chime in with answers to your post and questions, but in the meantime I just wanted to say that I’m someone who recently chose surgery OVER rai; I am not recommending one over the other, and I was/am lucky because I live where there is access to superb thyroid surgeons–so at least here, thyroid surgery isn’t done just for emergencies any more, though I know that’s still true in many places. Anyway, you can search for my recent posts using my user name if you’re interested in that option at all; I had a very positive experience. Also, I am sort of amazed that your endo said 50% achieve remission on medication. I was told a much, much lower number–something like 20%, and that the remission can end at any time even if one does achieve it. I know some people do prefer to stay on small doses of the medication long term, especially in Europe (thus achieving a euthyroid state, not remission per se), but others are concerned about long-term effects. There are people on this board who have done that, others who have stayed in remission after going off medication, others who have gone with RAI, and others who have chosen surgery–all for excellent reasons. The key is to make the decision that is right for you, with your doctor’s help.

At any rate, many congrats on the good appointment–hopefully the methimazole will kick in very soon and you’ll start to feel much, much better.

lhc11

[lhc11]

in reply to: Newbie to Site – Graves 3.5 Years #1064806

This is actually more of a response to Cynthia: Cynthia, a good place for medical information is PubMed.com, which is connected to NIH and provides abstracts of biomedical research. Without a subscription you can’t get access to the full studies, but you can see the abstracts and read the hypotheses and conclusions of all kinds of studies related to Graves’ and hyperthyroidism. I found this to be a reassuring resource–if at times difficult to read, even in abstract form–when I was going through the worst part of the disease.

lhc11

[lhc11]

in reply to: HELP!! I feel like I’m losing my mind!! #1064841

Hi there — I just want to reassure you that you are NOT losing your mind and that this WILL get better. I am also a type A, with a 20-year history of off-and-on anxiety issues, but when my Graves’ set in this past February, I felt anxiety like I NEVER have before; in fact, even after my hyperthyroidism was diagnosed I was still worried that I might have become bipolar–that’s how bad it was, and it took almost exactly two months after that (I was lucky it was so short a time period) to feel like myself again–and that’s even after my levels were getting "better." I was thoroughly convinced I was losing my mind on top of the Graves, and despite what anyone said to me (in part because I did feel physically better after only a few weeks on methimazole) I couldn’t believe that what felt completely psychological to me was in fact thyroid related. IT WAS. How you deal with your endo is a separate issue, but again, I just wanted to chime in and say HANG IN THERE–I am very recent proof that feeling crazy can be a major part of the package and that it does eventually go away. It’s hell in the meantime, I know–trust me, I know. You’re lucky in that you’ve found this board much earlier in the "feeling insane" part of things than I did–I didn’t know about it then and just sat in my house feeling nuts all the time when I could have really used this community to vent about how I felt. So vent away! (By the way, I am also someone who opted for surgery over RAI. I am not recommending one over the other, just letting you know that if you search for my posts with my username, you’ll find my extended musings on figuring out what I wanted to do).

best,
lhc11

[lhc11]

in reply to: only sleeping 2 to 4 hours night sooo tired #1065123

Hi Cynthia — glad you are sleeping a little better! I did want to correct one thing, though: sometimes one doesn’t have a choice about taking methimazole in the pm, depending on dosage. I was originally on 60 mg, 20 mg 3x per day at 8 hour intervals, so that meant I had to take a dose in the afternoon and another in the evening. Of course if you only have to take it once a day, or even twice, that’s a different story, as it was for me once I was down to 5 mg per day (within 2 months of diagnosis).

cheers,
lhc

[lhc11]

in reply to: Endo in 3 weeks a little worried #1065033

Just want to emphasize, like Ski, that the choice is yours. Ironic, since when you are hyper (at least in my experience) it’s that much harder to have choices/make decisions. As for research, my two cents are that the best places for research into Graves are 1) this site and 2) PubMed. I wouldn’t necessarily trust anything else too much–I found a lot of stuff out there online that was very hyperbolic/scary/incorrect. There are a lot of folks on this board who have had RAI with no problems (and I say this as someone who chose surgery, for personal reasons). At any rate, if what you want to do is stay on the meds, no doctor should be telling you that you can’t. The meds I was on brought me down to normal levels in about 2 months–a rough two months, I grant you, but the pills worked!

Hang in there,
lhc

[lhc11]

in reply to: surgery???? #1065080

Hi Cynthia — I am the person mentioned above ("Surgery tomorrow–yikes!") and you should search for my posts via my username (lhc11) to find the history of my recent diagnosis and decision-making process. It’s been almost three weeks since my June 9th surgery and I’m doing great–but I had an expert thyroid surgeon at a university hospital, as you’ll see from my posts, and that helped a lot in making my decision. I would write more now, but I’m running late to a yoga class (proof of how well I’m doing!). Almost everything I have to say is in the various posts/updates I’ve written, but feel free to ask more questions here or message me privately with more. It’s a very hard decision but as everyone on this board said to me, ultimately you will make the choice that is right for you–I promise!!

lhc11

[lhc11]

in reply to: Surgery Tomorrow, Yikes…. #1065317

Hi, shanniemom — If you search for "post-surgery update" you’ll see more detail on how well my surgery went (just fine). I was in the hospital just overnight, which was my choice–they would have let me go that day if I’d wanted. I recommend an overnight stay, however, just in case of any problems (I had difficulty using the bathroom and had to be catherized) and I bet the hospital will let you stay with your daughter on a cot (ask them). I did take the SSKI for 10 days before the surgery, .2 ml 3x per day. Mixed in cranberry juice I couldn’t taste it at all; for when I wasn’t home and had to take the SSKI with me, I took along cranberry-apple kids’ juice boxes, which were very easy to squeeze the drops into (I bet your daughter would go for this in general). If your daughter gets easily carsick, tell the anesthesiologist this–they can add some medication pre-sugery that can help prevent nausea afterwards and be ready with other anti-nausea medication as well (they did this for me, and I didn’t get sick).

I also recommend buying your daughter at least one cool scarf to take to the hospital to wear home over the bandage afterwards. Made me feel much better. Having ice cream and popsicles ready at home is a good thing too. ” title=”Smile” /> My throat was only sore for a day or so, however–the stiffness/soreness outside lasts a little longer.

As for vitamin D, I was told to have a bottle of Tums ready and I did; they gave me some in the hospital and then I took my own with lunch and dinner for a week afterwards. But my calcium levels were actually unaffected by the surgery and I was able to stop taking the Tums after a week; didn’t need any other supplementation either. This will of course vary from person to person. I began with the replacement thyroid hormone the morning after surgery.

In short, my surgery and the recovery was not at all the horror I had been expecting–in fact I ran 4.5 miles yesterday, 8 days after the surgery. If you’d like to send me a PM with any more questions, feel free–and you can tell your daughter not to be scared (though it is of course hard not to be). I was really torn up about the surgery vs. radiation and I am SO glad I chose the surgery for myself.

[lhc11]

in reply to: Post-surgery update #1065295

Thanks, Shirley and Susanne (Susanne, sorry I haven’t answered your PM — I did get your very first message, but not I think the second one….). Stitches came out today and the scar looks great (as great as a scar can look). Really pretty small and already healing well. I can stop eating Tums, too, which is a real bonus (why are the fruit ones so much more palatable and less chalky than the peppermint ones, anyway?). For what it’s worth for anyone thinking about surgery down the road, my surgeon’s office gave me info saying it’s not worth bothering with scar cream, that scar massage with lotion (hand or face) and especially sunscreen are the really important things (I know that regulars on this board already know this).

I now (or rather, soon) am going to have questions about TSH levels and trying to conceive post-thyroidectomy and so forth, but I will post those in a new thread….

Moving forward!

lhc

[lhc11]

in reply to: Post-surgery update #1065288

Hi all — just want to say that I continue to feel basically fine today (48 hours post surgery). Yes, the front of my neck is sore, and it’s hard to tell whether it’s inside my throat or outside because of course it’s a bit of both. I feel gingerly about moving it, and kept my head elevated last night (though I usually sleep flat, without even a pillow), which meant I woke up during the night a few times. And so I have been taking the pain meds they gave me (something called, amusingly, narco, which is not quite tylenol and not quite vicodin but rather something in between), which definitely helps (and makes me a little drowsy, which is fine). I haven’t showered yet since I got home because of this feeling of not wanting to move my neck too much and because even though I know the bandage is waterproof (in fact, I could even take the top one off today, the surgeon said), the thought of water on the incision site freaks me out a little bit. Eventually I will shower today, but I’m just waiting until I really can’t stand it any more. ” title=”Smile” />

Did I mention that I spent a bunch of money on fun scarves the other day? I recommend to anyone having surgery that you do that beforehand and then that you take one scarf to the hospital with you. I felt much better walking out of the hospital with an orange-and-white striped scarf around my neck covering up the bandage than I think I would have otherwise. The nurses were charmed. I’m even wearing my scarves a little at home.

lhc

[lhc11]

in reply to: new to GD/probably electing surgery/looking for support #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

[lhc11]

in reply to: new to GD/probably electing surgery/looking for support #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!).

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