[lhc11]

in reply to: Graves and Acne #1062428

I definitely developed terrible acne–on my neck, where I had *never* had acne before–around the time of my diagnosis last year. They were terrible pustule-like things and they scarred, too! I felt like a leper at the time. My endocrinologist claimed that Graves doesn’t cause acne per se, so the only thing I can think is that either she was wrong or that it was the hyperthyroid stress, and I was *very* hyperthyroid initially. At any rate, I dealt with it by getting a good anti-acne toner and wiping my neck regularly, and eventually as my levels came down it went away (and so did the scars). I’m sure yours will as well, and if it’s on your back the toner should work well there too, and at least make you feel like you’re doing something about it. I know just how you feel, it’s like insult added to injury.

lhc11

[lhc11]

in reply to: Anyone had the surgery out there? #1062336

As Shirley notes, I have posted A LOT about my surgery last summer. Just look for my user name — lhc11.

[lhc11]

in reply to: Recently diagnosed with Graves Disease… #1062566

Hi Brianna,

Glad you are feeling better. Keep in mind that remission = being off the meds entirely for a certain amount of time (I think it’s a year? someone else will know better than I) without symptoms/raised thyroid levels once your thyroid levels normalize *on* the ATDs. It does happen for some people, but not for a lot. I hope it does for you! I personally chose surgery over waiting to see if that would happen for me, since my levels were so high that my doctor thought it would be extremely unlikely.

And, Trulydee, please hang in there. It really does usually take at least 6-8 weeks for the meds to make you feel like yourself again — in my case, it was 8 weeks to the day of my diagnosis (which will have been a year ago at the end of this month) that I finally did, and it was amazing. In the meantime, it was the hardest, longest, worst 8 weeks of my life, with all the symptoms you describe. It really does get better, and in the meantime you have this board to vent on every time you feel awful, and to research your treatment options on (meds, RAI, or surgery). Everyone on the board is either like you right now or has been like you at some point, so you are in very good company and you have absolutely found the right place to be for support and accurate information. Be as kind to yourself as you can; it is hard to wrap one’s head around this diagnosis and think clearly about it when you are in the worst active phase of GD, but the folks here, especially the moderators, will help you.

Best,
lhc11

[lhc11]

in reply to: Total Thyroidectomy coming soon… #1062625

Terrific news! Re: Shirley’s advice, above — it can’t hurt to ask, but for the record I was put on Synthroid the day after my surgery and had no problems at all.

I know exactly how relieved you must be feeling! Enjoy it.

lhc11

[lhc11]

in reply to: Total Thyroidectomy coming soon… #1062622

Hi Mykena,

I am just back to checking the board. With your surgery tomorrow, I know you must be nervous today; I certainly was. The best thing you can do is just try to enjoy today as much as you can, watch a movie or whatever you need to this evening to take your mind off of things. It is so hard to know this before going into surgery, but remember: you are asleep during it! And then you wake up and it is over. And after mine I was starving and gobbled down a plate of meatloaf and mashed potatoes an hour or so after I woke up. You will be fine, and you will be so glad that you went this route. Remember that in the scheme of things the surgeons that do this kind of thing consider it pretty minor, even though it seems huge to us.

We will look forward to seeing you post an update about how well it goes!

Best to you,
lhc11

[lhc11]

in reply to: Total Thyroidectomy coming soon… #1062615

Hi! I don’t have time to post a lengthy response right now, but I have posted a good deal about my total thyroidectomy post-op, which was last June and went without a hitch (my surgeon, like yours, does over 300 thyroid surgeries a year). The best way to find my posts is to search for my username — lhc11 — and then look for things dated June 9, 2010 and onward (you can read earlier posts but they will be about me still in hyperthyroid mode trying to come to a decision). I have had virtually NO problems having to do with the thyroidectomy and am still on the same dosage of replacement synthroid they put me on after surgery (even though I’ve gained back the 30-some pounds I lost over just 4 months of being hyperthyroid).

On a semi-related note, I had my TSI (thyroid stimulating immunoglobulin, aka the antibodies indicative of Graves) tested last April as part of the first diagnosis; way up at 395 (reference range of 1-129). Just had them tested again the other day as part of a 7-month follow-up with my endocrinologist — down at 111. Which means they’re not especially "active" right now, which is great news.

Anyway: like Shirley, I have no regrets about having chosen surgery. Is it a little weird to have to take Synthroid every day for the rest of my life? Yep. Is it wonderful to be myself again? Yep.

Do yourself a favor and buy at least one nice scarf to take to the hospital with you. I wore mine out when I left (I chose to spend the night, which I would recommend), and it made me feel better about the bandage. I’m sure your surgery will go great and you’ll be so happy when it’s over!

[lhc11]

in reply to: jazzercise and graves #1062834

I too will put in a plug for yoga. I had only been doing yoga for 3 months when I was diagnosed with GD last year, and I kept doing it (power yoga, so fairly strenuous, but not the same thing as running on a treadmill) while I was ill and am practicing it to this day (in fact I am fairly addicted to it at this point). I actually credit it with keeping my muscles in good working order while I was dropping weight etc., and with helping me to recover more quickly after surgery (I did take a 3-week break from yoga after surgery, or maybe even a little more). That said, I absolutely agree that you should do *nothing* without checking with your doctor. (My doctors never said a word to me about exercising while I was ill, which, looking back, seems pretty irresponsible to me–but I instinctively didn’t want to go running or do other high-powered aerobic workouts at the time).

lhc11

[lhc11]

in reply to: Celiac disease common with graves? #1062849

Hi Kari — in regards to your question about other autoimmune diseases, I don’t know if it’s "common," but I had a flare-up and was diagnosed with autoimmune proctitis (which is basically ulcerative colitis, but limited to the lowest part of the digestive system, the rectum–it is not pleasant!) last fall, about 6 months after being diagnosed with GD. I just did a search and no one else on this board seems to have ever been plagued with it, so again, I don’t think it naturally goes with GD, but it certainly does prove to me that one autoimmune disease often means another. Here’s hoping this is the limit of my collection.

best,
lhc11

[lhc11]

in reply to: surgery- after #1062866

Yup, I just massaged my scar (they should have given you instructions about doing this, for healing purposes, before you left the hospital — if not, definitely ask them. You can only start massaging about 2 weeks after surgery, though, not before). Don’t massage if you haven’t been told what technique to use! I didn’t do it *when* I was out of breath, I just started doing it more times a day…and the issue went away. I hope this works for you!

[lhc11]

in reply to: surgery- after #1062864

I had some getting out of breath issues about 2 weeks after my surgery as well (and difficulty talking for too long, or raising my voice above a slightly-softer-than-normal level). The out of breath thing made me feel really panicky, which made it worse, of course. Here’s what helped with that: massaging my scar as per my surgeon’s instructions for post-op scar massage. Seems weird, but my surgeon’s assistant explained to me that part of what was perhaps going on (because I was actually getting enough oxygen, my airway wasn’t actually "blocked" — something you might want to ask your surgeon to check on if you are really worried) is that the tissue where the thyroid used to be was healing up, causing a kind of new sensation that my body "read" as being unable to breathe. If that makes sense–it did to me at the time.

So, if you can, I would try the scar massage that you may already be doing–but do it when you feel out of breath as well. Hope that helps!

lhc11

[lhc11]

in reply to: new to GD/probably electing surgery/looking for support #1065481

Hi Rebecca,

Wow, this was a flash from the past (mine, I mean, not yours)! (And believe me, looking at my old posts–though I couldn’t bear to really re-read them–that is how it feels, which I hope gives you some hope right there). Oddly enough, I have my post-surgery 6 month (well, 7-month) follow-up in person with my endo later this afternoon. I don’t know if you’ve searched for my username (lhc11) and found any of my subsequent posts, but they might comfort you if you do. I am someone who, it turns out, did fantastically through surgery (even my calcium levels stayed stable) and recovered quickly. Today, I take synthroid and vitamins but no antidepressants or anxiety meds of any kind (and in fact that was true right after the surgery too), and with the exception of another autoimmune issue that has raised its ugly head (it’s proctitis, so "head" is not exactly the right word) and my continued unsuccessful attempts to get pregnant (the issue is age, not my thyroid per se), I am in excellent health.

You are dealing with SO MUCH and as you know, I completely understand it as I have been there. It is so, so, so hard, and your worries about how your body might respond to Synthroid are legitimate, given the situation with Armour in the UK. That certainly complicates your choice, though it sounds to me like perhaps you are coming closer to a decision. All I can tell you is that I was SO worried and scared–as you can see from my first posts–and everything is now FINE. Yes, I’ll be asking my doctor for a new levels test today–and maybe FT3 as well just to be sure about things–but again, I’m in excellent health and have NO REGRETS whatsoever about my decision to have surgery. I think you need to tell your doctor exactly how you are feeling, i.e. at the end of your rope with ATDs–and really push him on the Synthroid issue. Before surgery, of course, your levels do have to stabilize (which they don’t, or not as much, on RAI, at least not from what I’ve read on another thread). Please hang in there. You are obviously very strong and you WILL make it through this, come out on the other side, and one day post here to someone else in the depths of their GD experience. You might also want to start a new thread as you continue exploring your options just so others on here really get that it’s YOU we’re now talking about, not me.

all my very best,
lhc11

[lhc11]

in reply to: Surgery #1063035

Hi Heather — I am one of the people that Shirley is probably referring to above; I had surgery last June after a lot of debating about what to do. If you search for my username — lhc11 — you will find a lot of posts by me from last May-June about it all. You’ll also find lots, as Shirley suggests, just by searching for the word "surgery." I hope it helps!

best,
lhc11

[lhc11]

in reply to: Want to have baby #1062994

Hi again (my, I am doing a lot of procrastinating today),

Someone with more experience with RAI can give you a better set of answers than I can, but one thing about your levels: in order to make sense of them (or have someone else make sense of them), you also need to know the "normal" range that the lab your tests were done at was using. This can vary from lab to lab (and sometimes even from test to test; mine, all done at the same lab, have varied a few times in this way).

Re: your lowered TSH, I don’t know, but my guess might be that you are hyperthyroid enough that the dose of meds wasn’t doing enough to keep things from still heading south (which is why they’ve now upped your dose, to try to counteract that).

Re: the amount of radiation they will use. I don’t think there is anything you yourself can do other than carefully follow instructions. My understanding is that first they do a "thyroid uptake scan," a kind of "test run" that measures how quickly your thyroid takes up the iodine; that rate, along with the size of the thyroid, gives the radiologist the numbers he/she needs to calculate the appropriate dosage of radioactive iodine. Another thing to know about this is that in preparation for RAI you both stop the ATDs and eat a low-iodine diet for 10 days (I think it is) beforehand — this is so that your thyroid doesn’t have iodine in your system to work with and so takes up the radioactive material at the expected rate/dosage.

One other thing that no one has mentioned here yet is that after RAI, as you may already know, you can’t go near other people (but especially small children) for a few days. There’s a whole set of precautionary measures you have to take, even though the dosage of RAI is usually much lower than the higher amounts they use for thyroid cancer patients. Others on this board can speak much more authoritatively about all of the above than I can, and of course the radiologist will also explain things to you. Also, they will want to see your levels in the "normal" (euthyroid) range before either RAI (I believe?) or surgery — that is one way they avoid the risk of thyroid storm (I know this is especially true for surgery, though I think it applies to RAI as well….). In other words I think you can expect to be on methimazole for a bit longer–which in a sense is good because it gives you a little more time to make your decision. It’s important not to feel rushed, if at all possible. (In my case I literally scheduled both surgery and RAI for the same day, and only cancelled RAI once I was really, really sure I wasn’t doing it, if you can believe it–but that is how torn I was!).

I did want to just briefly comment on what Bobbi said about surgery/RAI having the same time to heal for you to feel normal again. She is totally right that it will take time to heal, but as I understand it, how much time after either procedure depends on many individual factors, including how long you have been hyperthyroid. In my own (very individual) case, my thyroid levels were normal after surgery and remained normal (the TSH slowly crept back up into normal range, but the FT3 and FT4 remained fine) and, remarkably, I’m still on the same dose of thyroid replacement that I was put on the day after surgery (but I am keeping a close eye on how I feel and also asking for blood tests if I think I feel even a little bit off). And I was able to go for a jog about nine days after surgery. I healed quickly, both from the surgery and from being hyperthyroid, but then again I was only severely hyperthyroid for about 2 months, and even during that time, as awful as I felt, I had been doing yoga (the only thing I could manage to do at all, in fact), and I think that helped a lot. The point I am making, I guess (and let me be clear that I am not disagreeing with Bobbi), is that you have to expect that things will take time with either surgery or RAI, but that there is no way of knowing whether that time will be longer or shorter than anyone else’s since it’s all about your body and how it responds. The only thing that is certain is needing to wait 6 months after RAI to try to conceive.

Trust me when I tell you that you will be ultimately happy with whichever choice you make; everyone who has come back to this board to report on how things went testifies to that (yes, you need to avoid the "crazy" sites–I was on a few of those before I found this one too). Now is the hard part, being torn between the options. I know just how it feels but once you decide and the plan is put in place, it gets MUCH better. It sounds like you may be starting to have that "I know what I want to do" feeling — and I think all you can do, in the end, is trust that, whichever way it points.

lhc11

[lhc11]

in reply to: Want to have baby #1062990

Hi again,

This may not at all be the case with your endocrinologists, but my general impression from when I was looking into all this (and wondering why so many more people had RAI than surgery despite the bad experiences I was reading about online) is that there is such a long and successful history of RAI for Graves that many endocrinologists (in the US in particular) do think of it as the first choice for treatment. There are obvious reasons for this–the invasiveness of surgery and its potential for complications (as with any surgery), the overall rarity of skilled endocrine surgeons (this varies by location)–and then some reasons I think are less obvious, like what health insurance plans will/will not cover. My surgeon told me, however, that he is just now starting to see more people–and particularly women who want to have children sooner rather than later–turn to surgery for Graves (when it is available and covered by health plans) instead of RAI. I’ll say one more thing about RAI that is entirely about what I knew I needed for myself and is not meant as a comment on anyone else’s choice: I didn’t want to wait after the procedure to feel hypo (as pinky35 notes, she is only now hypo after 3 months past treatment) and only then know that it was time to start thyroid replacement; I simply couldn’t deal with the uncertainty of knowing how long that might take and of needing to monitor myself in that way. I just wanted the thyroid out and to be on the replacement immediately (which is what they do post-surgery, or what you want to confirm with a surgeon that they will do) and have that part of things be over. I also want to second what Shirley said about anesthesia. That is the *last* thing to be afraid of if you have access to good doctors. My anesthesia team did a perfect job and when I told them I was worried about being sick (I had been once before after a surgery) they made sure that I was given motion sickness medication both before and after surgery. Nothing bad happened in that regard. And by the way, my surgery took only 45 minutes and my surgeon apologized to my husband that it had taken him that long, but my thyroid was more enlarged than he had anticipated. I have a tiny scar that is already fading (and that I think of as a badge of courage).

But in terms of what you are reading re: regretting RAI, what you were wondering and what Ski has said is really important to keep in mind; she said it to me once too and it was very helpful. The people who come onto online support boards tend to be either those who have been newly diagnosed like yourself (or me last May), those with ongoing issues, and those–like our generous facilitators–who are simply donating their time to help others. MOST people who have successful treatment of whatever sort do not spend their time in online communities, because they are busy getting on with their lives. (For myself: I’m an academic, always in front of a computer, and I check in here off and on to procrastinate [which I really need to do less of!]; when I see something I think I can help with, I step in because I’m "paying back" the help I got here when I was ill). I have a close friend who, it turns out, had RAI for Graves over 10 years ago (it was an obvious choice for her, since she was truly beyond terrified of surgery); it worked great for her and she would be horrified at the thought of spending a single minute discussing it online. She also went on to have a healthy baby a few years ago, by the way (10 years after having been treated for RAI, and that delay only because she wasn’t ready for children before then).

Hope the above helps a little rather than makes things more confusing for you. This board is a great place to debate your choices even with yourself (though folks will of course also respond).

Hang in there,
lhc11

[lhc11]

in reply to: RAI #1062961

Hi there — I agree with all the above. I’m just writing in to say that Shirley has given you my username in the wrong order and you’ll never find my posts about surgery that way. ” title=”Very Happy” /> It’s lhc11 (not lch11). Search away, and good luck to you as you move forward. It WILL be ok.

Best,
lhc11

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