[SueAndHerZoo]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179627

Thanks, Karen, as usual, for the wonderful updates. I’m following closely since my TT is scheduled for July 16th.

So you took a full three weeks off work, right? I am going to go down and talk to our HR person one day this week to discuss short term disability and was debating if I should estimate two weeks off or three weeks off. There is, of course, no way of knowing how we’re going to feel 2, 4, or 6 weeks after TT but I am assuming that I will probably be capable of returning to the office after two. However, I can almost guarantee that I will not be “myself” in only two weeks…..not to mention I don’t even know what “myself” should feel like anymore.

Are you on short-term disability? Can you take another week or so off? Or can you go back just a few hours a day and wean back in? My estimate for what I’ll do is either 2 or 3 full weeks at home, and then half days for whichever week I return. I’m fortunate in that “my boys” at the office will let me come and go as I need to but I still would like to give the HR department some idea of how much I’ll be out.

I can’t imagine going back to work while your eyes are bothering you. Not only will that be incredibly difficult, it’s going to exhaust you. My vote, if possible, is to extend your time at home a little longer.

Please keep the udpates coming.
Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173631

So happy for you…. so sad for your friend, but she’s facing this with such strength and integrity that you can’t help but admire her and know that she’ll be OK.

Thank you for the update and messages…. very powerful.
Sue

[SueAndHerZoo]

in reply to: no medication “prep” prior to TT? #1179950

My surgeon said she would start me on calcium while in the hospital and then on synthroid 5 days after the surgery.

Will be thinking of you and sending positive thoughts and prayers tomorrow. I am sure you will be fine, and don’t push yourself too hard to update us… just take care of yourself and check in when you’re up to it.
Sue

[SueAndHerZoo]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179622

Wow – what a shocker —bet you didn’t see that “C” word coming! Such bad news and good news in the same visit. Bad that it was there, GREAT that it’s now gone. Makes me even more happy that I’m having mine taken out in a month. I have had a goiter for over 20 years . . . who knows what’s lurking in there.

Glad you’re feeling so good. I am actually really looking forward to the valid excuse to take 2-3 weeks off from work, especially in July.

Sue

[SueAndHerZoo]

in reply to: no medication “prep” prior to TT? #1179945

Talley ….. update, please?
Sue

[SueAndHerZoo]

in reply to: Hyperthyroid Symptom Question #1179895

karenz516 wrote:

Sue, I agree with you on the food issues, I try to be really careful about what I eat. I do notice if I have a day of not eating well, I do not feel well and I am also working not to gain any weight, the only good think about the Graves Disease/Hyperthyroidism was a 30 lb. weight loss, I put 15 lbs back on and I would like to lose 10 of those pounds. I said to my endo I eat a salad and yogurt everyday for lunch at work and try to eat a healthy dinner, what the heck. I try to stay away from bread and red meat, and eat alot of vegtables and chicken and fish. Its hard when you work all day because I am exhausted when I get home and don’t feel like cooking anyway but have a husband and son who are usually starving. My endo feels that it is related to my heart rate going to low, I feel better when it is in the 60’s, anything lower I get the dizzy feeling. All of this is a job in and of itself, so frustrating! My anxiety jumps like crazy when I feel off and I think something is happening.

I’m right there with you, Karen, on the anxiety jumping whenever I feel the slightest bit off (which is a lot lately). The physical symptoms are bad enough but to get anxious and focus on them is even worse.

Let’s all find the cause, then the solution, and save the world!
Sue

[SueAndHerZoo]

in reply to: Thyroidectomy scheduled #1179963

So sorry your son (and you!) are going through this…..there’s nothing worse than feeling helpless when our children are not feeling well. Hopefully this will all be a distant memory in a few months.

I don’t have any first hand experience with TT but I also have one scheduled for July (the 16th) so perhaps we can compare notes afterwards.

Good luck, and keep us posted.
Sue

[SueAndHerZoo]

in reply to: Just need to vent…in other words, at my wit’s end… #1179913

Stymie wrote:

Hi Rebecca! Welcome.

I felt the same as you. I had RAI last September and went severely hypo in November. Started Levo and felt horrible. You’re right people with allergies have difficulty with the fillers in some of these drugs. I am on tirosint also.

I have felt much better since switching to tirosint. But I feel as though I’m not back to my normal self yet. I’m vit d deficient and just recently started taking some B12 which has helped some with the anxiety.

I hope you are feeling better soon. My family seems to think I should feel fine now. Take your pill, be on your way. Little do they know its just a tad more complicated.

Wishing you the best.

Diane

Hi Diane. You mention B12 helping with “the anxiety”. Do you think the anxiety is a direct result of your RAI or was it there before? Curious why you would have anxiety (at least thyroid-related anxiety) after you had gone hypo. I was thinking (and hoping!) that the anxiety reduces greatly once the thyroid isn’t racing anymore.
Sue

[SueAndHerZoo]

in reply to: Hyperthyroid Symptom Question #1179893

linzyyyy wrote:

This has happened to me before. Both times after waking up from an accidental nap. First time was before Graves diagnosis, I was so scared I had to call my husband to come home bc I felt too weak and dizzy to bring the baby downstairs! Chalked it up as an anxiety attack. Happened again last week, this time I just “let it ride” and pushed through. I just kept telling myself it was bc of my current state of hyperthyroidism. I have had more minor versions of this scenario happen all the time, but those were the two biggest.

Sorry you are going through this. (Sorry we’re all going through this!)

But what do you think the cause is? I’m trying to figure out if it’s sugar/carb related because lately I seem really intolerant to those items. I know when I was low-carbing several years ago I had never felt better, and I think there is a connection between the thyroid and blood sugar levels, so try to pay attention to what you’ve eaten right before these happen.

Today I ate lousy and I feel lousy.
Sue

[SueAndHerZoo]

in reply to: Hyperthyroid Symptom Question #1179890

karenz516 wrote:

Sue, yes the anxiety does rise when I get those bouts of dizziness. I have xanax but try not to use it and only take a half if I have one of those spells, it at least keeps the fear at bay. I hate when I have those episodes, a month after my RAI, when my thyroid levels were coming down I passed out, thank god I was home and my husband was here, my heart rate was in the 30s, and I ended up in the hospital for another week because my heart rate dropped too low

Karen

Wow, Karen…. you actually fainted from your heart rate being too low? That’s so scary, both for you, I’m sure, and for me! I’ve never heard of that happening to someone after RAI or TT – was there something else physically going on to drop your rate that low?

I don’t think I’d be able to check my heartrate after a dizzy spell because the spell causes instant extreme anxiety so the pulse and BP go way up.

Hope everything is turning around for you now and that those days are all behind you. We all deserve some relief from this nasty beast.
Sue

[SueAndHerZoo]

in reply to: Aches #1179880

Boomer wrote:

Hey there!

When I started on Tapazole (Nethimazole) as well as a few days after any dose increase I had joint pain, muscle pain, and more cramps than I’ve ever had mostly in my feet of all places.

I was told by my Endo that this is indeed a normal side-effect and that rash, nausea, vomiting, and fever are the ones to call him about right away.

I swear the cure feels as bad as the cause sometimes. Just think about how tough this makes us though. The Graves Gang: Fear us.

Hang in there and stay positive!

Health and good vibes comin’ atcha,

Boomer

Ooooohhhhhh…. that sounds like the perfect thing to put on the back of a leather motorcycle jacket! Do you have a logo to go with it????
Sue

[SueAndHerZoo]

in reply to: no medication “prep” prior to TT? #1179943

I asked my surgeon if I should expect to put on a little weight after my TT and she said there is absolutely no reason I have to. She said “Just like you adjust your methimazole up or down to find your sweet spot and the place that you feel your best, you will adjust your Synthroid up or down to find what works best for you.”

I hope she’s right.
Sue

[SueAndHerZoo]

in reply to: no medication “prep” prior to TT? #1179936

Wow, this is a tough one and I SO WISH you had more time before your surgeries. I agree totally with everything Shirley said and it’s hard for me to write this reply because on the one hand I want to express my thoughts and concerns but on the other hand I do not want to scare you and add to your stress.

I hate the fact that your TT is being looked at as “secondary” and almost an afterthought. I hate that it seems to be that the primary purpose of surgery is for the tumor and “while we’ve got you under, we may as well grab your thyroid, too.” Yes, there are some practical reasons to do both at the same time, but only if both surgeries are being taken equally seriously and with the utmost attention to detail to BOTH surgeries.

Perhaps my surgeon was over the top with the time she spent and the precautions and tests she performs before surgery, but then again it’s Yale so I wouldn’t expect anything less. Before I even met her she had contacted my endo and had my entire file in front of her and examined the past 6 years worth of records. She told me she would not have agreed to even consider surgery if my labs were not currently in the “normal” range, and she stressed that even though they are “normal” she wants to doubly ensure there will be no complications or risk of thyroid storm or bleeding by shutting the thyroid down even more with 7 full days worth of SSKI drops. When I showed a little concern about why she insisted on the SSKI she told me that she does that with EVERY patient, and that it’s not that mine is at extra risk but that she wants to take extra precautions so that there will be no issues during surgery. The smaller and less inflamed the thyroid is, the less chance of nicking the parathyroids or vocal cords, etc.

She explained that the average TT takes her 2.5 hours but stressed to my husband that if she’s not out to speak with him at exactly 2.5 hours that he should NOT worry – it only means she is being meticulous and careful to only get the thyroid tissue she needs to and not anything else. I have no way of verifying it but she and her nurse stated (separately) that in the 5-10 TT’s she does a week, she has never had an issue of any type.

I guess my point is that any surgery is nerve-wracking for the patient. I am totally and completely comfortable with my surgeon but will, of course, still be nervous. In your case, you do not feel that total confidence and I sympathize and feel badly for you. This is going to be stressful enough on your mind and body for you to have the added stress of whether or not the doc knows what he’s doing.

Sorry this is so long but this is a very serious question you posed and it deserves serious attention. Is the surgeon who is doing these operations an endo surgeon? Is the same surgeon doing both surgeries or will one do the tumor and another do the thyroid?

Had you asked this a week ago I probably would have said “eh, get them both done and over with” but now that I’ve had my consult and see how much prep is being put into my surgery, I would have second thoughts about doing both at the same time.

I am so sorry that my post probably scares you even more and I thought long and hard about posting it, but I would feel terrible to have these concerns and NOT express them since we’re dealing with something as serious as surgery. This isn’t filling a cavity and deciding to extract a tooth while they’re in there……. it’s a bit more complicated than that.

I actually wonder if you should call the doctor this weekend. Even if he has someone else covering for him it would be good to hear their opinion, or maybe they would see the seriousness of your question and have your doc contact you before Monday. If you can’t do that, can you be in your doctor’s office Monday morning to express your hesitation about proceeding on Tuesday?

Please keep us posted, even if it’s just to vent. I’m sure it will all be fine, but it can only help to be as prepared as possible.
Sue

[SueAndHerZoo]

in reply to: Hyperthyroid Symptom Question #1179888

Hi Karen.
Thanks – your reply did help a lot. I, too, have a heart rate and BP monitor not only in my home but a separate one on my desk at the office. LOL I only take a beta blocker if my resting heart rate is over 100 but I sometimes wonder if I should take it more often. I take a very low dose and all my doctors urge me to use the beta blocker as often as I’d like, but I always try to test the waters and see if I can go without them. I now wonder if these episodes happen on the days when I do take the blocker…. maybe it goes too low. I also need to see if it happens more right after eating.

There are so many things that could be causing those spells but I think my best goal would be to stop trying to figure them out and stop giving them so much attention. As soon as one starts, for whatever reason, the anxiety kicks in and makes it all worse.

Thanks for your reply…. always feels better to know you’re not alone in these things.
Sue

[SueAndHerZoo]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179618

Thanks for the updates, Karen….. keep ’em coming.

I read somewhere (during my countless hours of research) that some docs use drains and I couldn’t imagine how or why!

It’s amazing how many stupid, little details I’m already worrying about during the day of surgery. Not the normal, important stuff that the average person would think about. No, I’m worrying about how soon after the surgery I can get a cup of coffee so I don’t have to feel the awful caffeine withdrawal! If I have to stop eating and drinking at midnight the night before, and since I want to get a good night’s sleep the night before I will probably have my last cup of coffee at 6:00 p.m., that could mean I might not have coffee again for 24 hours! I’m not sure since I’ve never gone that long without it but that sounds like a major caffeine-withdrawal headache to me!

Maybe if I worry about and write down the trivial worries now I can focus on the big stuff as it gets closer. LOL
Sue

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