[SueAndHerZoo]

in reply to: TT 8/8 #1180563

LaurelM wrote:

Sleeping in my own bed without something waking me up every 2 hours felt great. Must have slept almost 10 hours. Just some discomfort at the site that Tylenol is taking care of. Feeling better than I expected but of course I say that while I am comfortably ensconsed in a big soft chair getting waited on. I plan to stay here all day.

Good for you, but modify that plan just a tiny bit: plan to stay there all WEEK!
Sue

[SueAndHerZoo]

in reply to: Sue’s TT – Part 2 #1180646

Thanks, Alexis. Actually I’m having blood drawn Tuesday for a Thursday endo appointment. I know it’s early but he hasn’t seen me since before surgery and he will be going on vacation after next week so he wants to check on me before he leaves. I will have blood drawn at the 4 week TT mark but that’s only a little over 3 weeks since starting Levothyroxine (started on day 5 post TT) so I’m not sure we’re going to change anything off these labs unless we see something drastic.

I’m glad to hear this is probably normal and part of the process. It makes sense when you say that my body is trying to heal and find it’s new normal…. everyone said this could take months, but I try to figure out WHY it’s fluctuating since I’m taking the same dose at the same time every day. I guess it’s the combination of still having some natural hormone and also my body maybe not knowing how to process the artificial stuff consistently yet?

I always want to know why and how this all works but I guess I should be satisfied to accept that I’m not going to feel stable, consistent and wonderful in 3.5 weeks. I hate patience.
Sue

[SueAndHerZoo]

in reply to: TT 8/8 #1180561

Great to hear – thanks for the update! Get plenty of rest and pamper yourself for a while – you and your body deserve it.
Sue

[SueAndHerZoo]

in reply to: Hello again, and another post-TT update #1180521

Damn it – I can’t stand hearing that someone isn’t being treated or given a procedure or medication because “insurance didn’t approve it.” Really infuriates me! It’s not bad enough that we have to go through the hell of being sick but we then have to do the red tape and jumping through hoops to get a possible solution approved by insurance? I would think (and hope) that once a medical professional suggests something it should be a no-brainer. ugh…. don’t mean to get you fired up — I’ll stop.

I’m so happy you felt better today and had a fairly “normal” day…the kind that most people take for granted. Lord knows we’ll never take them for granted!

I guess all we can do is try to live in the moment, not regret the way we’ve felt in the past and not worry about the way we’ll feel in the future. Here’s to many wonderful “todays”.
Sue

[SueAndHerZoo]

in reply to: Sue’s TT – July 16, 2013 #1180393

Geez, is it any wonder I love you? It’s always so wonderful to hear from you and it’s EXTRA wonderful when I hear that you are feeling pretty good right now. Thank God, right? (Really – thank Him!) That’s quite a lousy journey you were on for a while there so maybe this is the beginning of the good life and the worst is behind you? Yes, that’s what it is. That’s my story and I’m sticking with it.

That one really lousy anxiety day I had was an isolated thing, but I’ve had a few days now of mild anxiety… enough to need to pop a tranq twice. It’s nowhere near as bad as it was before the TT and I’m sure it’s just still having natural and artificial hormone in me. It could also very well be me being bored ….. too much time on my hands and I start watching myself every minute and noticing every little thing I feel and obsessing over it.

I love what you said: “I really do believe that subconsciously, sometimes, our bodies/CNS is pre-programmed to fall into anxiety as “default mode” when we are under stress be it physical, mental, or emotional.”

I’ve never thought of that before but it makes SO MUCH SENSE! I’m sure after spending most of my life having panic attacks and severe anxiety, my CNS is most definitely programmed to fall back to anxiety when any thing is wrong with my mind or body. Never heard or read that before but I really think you’re onto something. I am going to remind myself of that every time I start to feel anxious in the future. Instead of doubling the panic by wondering why it’s happening I will remember that it’s my body’s “default mode” and probably a coping mechanism that it has learned as a self preservation. Such a wise man, regardless of how hard you try to hide that.

My incision hasn’t itched yet…. you must be mixing up the females in your fan club. You’re not cheating on us, are you?????

Me? Normal? Surely you jest. But it’s funny you pointed out my statement about being “nervous” about going back to work. When I mentioned it to my therapist last night she said “why wouldn’t you be? It’s absolutely perfectly normal and to be expected.” Geez… don’t think I’ve ever been accused of being normal before, let alone twice in two days.

Thanks for checking in…. I think of you often. And, oh, by the way: I WIN!
Sue

[SueAndHerZoo]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179653

Gabe wrote:

Sue, thanks for your post. You have articulated everything I should be doing. You’ve lit the fire for me to get moving on finding an Endo that has more time and availability and will cater to me and my needs. I always worry too much about being a burden on others. Crap on that. Tomorrow I start hunting for my dream Endo!

Yay, karen

EXCELLENT! Time to stop being complacent and “nice” and take control of your treatment…. it’s your body and your health and your life that is being put on hold. Enough is enough!

I know doctors are busy and that patience is sometimes necessary but this is extreme. Go, You!
Sue

[SueAndHerZoo]

in reply to: Change in taste? #1180617

Hi Barbra.

Let me keep my taste buds for another week or so — I’m really enjoying them — but when I notice that I’m putting on a pound or two I’ll make a swap with you.

Boomer? Calling Boomer…. come out, come out, wherever you are!
Sue

[SueAndHerZoo]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179651

Good Lord! You haven’t spoken to your endo since June and you won’t see him again until October!?!?!? You have a LOT more patience and tolerance than I do….. wow! If I were feeling lousy I would be calling at least once a week to let them know I’m having a hard time and asking for recommendations or tests. Bless you for having that kind of calm and accepting demeanor.

I would also be finding another endo but you say they are hard to find in your area? Maybe it’s worth traveling an hour or two?

Just thinking out loud so don’t let my annoyance get to you…. I just can’t imagine not feeling well and waiting months in between check ups. Not sure how you do it… God bless you!
Sue

[SueAndHerZoo]

in reply to: Hello again, and another post-TT update #1180517

Crap! (I, too, would rather put a much stronger word in there but will reserve that for my verbal expression of frustration). I am sorry that this probably frustrates you and confuses you even more but I’m really frustrated by the new, lowered dose of Levo. I can’t remember: is this coming from an endo you’ve known for years and that you trust and feel comfortable with? You probably don’t want to throw any more opinions or doctors into this mix but I can’t help but wonder if an appointment with a brand new set of ears and eyes (Endo) would be worth a visit.

Please don’t worry about the suggestion to see a cardio — just do it and get the peace of mind that will come with it. Then you can check that off your list and go back to getting your hormone levels in check, either with the old doc or a new one.

Damn….. so unfair. You’re probably sick of hearing this, but… hang in there – it has GOT to get better soon!!!

Thinking of you……
Sue

[SueAndHerZoo]

in reply to: Sue’s TT – July 16, 2013 #1180390

Thanks, Karen. Sorry you’re still having blips and not feeling “yourself” but I appreciate the warning. I’m sure I will get sick of myself being sick long before the people at work get sick of it….. I have no patience for not feeling well. (Perhaps this illness is the Universe’s way of showing me that I can NOT have control of everything, damn it)

I guess I’m fortunate that I don’t really worry about my job security, but I still am nervous about going back next week and not feeling well while trying to keep my happy face on and being the old Sue they remember. Hmmmmm…. sounds like something I should work on….. worrying more about how “I” feel rather than worrying about how others expect me to feel. (makes note to discuss with a therapist).

What a journey, huh? What doesn’t kill us makes us stronger? We Graves patients must be some of the strongest people on Earth!
Sue

[SueAndHerZoo]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179648

Thanks for the update, Karen. It sounds like you FEEL ok even though the labs say you are hypo…..did your doc raise the Levo because of the numbers or because he’s hoping some of your emotional issues will improve with a higher dose? I’m still really new to this post-TT rollercoaster so I have no idea what the process is going to be like, but I would think that if my energy levels were fine I might not want to increase my Levo. Then again, I’m always terrified of anxiety so I will probably tend to keep myself as low as possible rather than on the higher end of the scale so we each need to find our OWN sweet spot.

So sorry about the TED…. what a scary and frustrating challenge! No wonder you’re emotional and having bouts of crying – I’m sure the worry about your vision is a big part of that. I have no idea why these things are happening to you but at this point all we can do is trust that everything works out the way it’s supposed to and there is some method to this madness. Please trust that it IS all going to be OK and take one day at a time until that happens. (I know – easier said than done – I’m the Master of worrying and wondering about the future.)

You’ve been incredibly strong and brave through all this….. I’m betting this battle is nearing it’s end and you will come out the Victor. Please keep us posted and know that I (and all of us) are sending positive thoughts.
Sue

[SueAndHerZoo]

in reply to: Had a TT last Monday. (Graves’, TED, Hashimoto) #1180622

Welcome to the TT Club. I had mine out July 16th and feel OK. Definitely felt a lot calmer after surgery than before, even though I have had a few days of high anxiety but luckily they are short-lived. I was hoping I’d be a little more energetic at this point but part of that could be that I’m just lying around a lot and not trying to do much. Sometimes the less you do, the less you want to do, so tomorrow I may push myself to get up and out for a while.

I felt GREAT for the first 10 days post-op and then the fluctuations started so be prepared for anything…. this is quite an adjustment our bodies are going through. I told my office I’m taking one more full week off and then will go back for half days starting August 12th … time will tell how that plan works.

Good luck, and keep us posted.
Sue

[SueAndHerZoo]

in reply to: Hello again, and another post-TT update #1180511

Glad you called, too, and glad you’re going to talk to your doc on Monday…. something has to get better soon….. you’ve been through enough.

I’m real new at this TT and replacement stuff but I know my surgeon stresses (and sent me home with written sheets about) “SAME / SAME / SAME!” Same med, same dosage, same time! I don’t know exactly how critical that is yet from personal experience (I set my alarm every day for 6:30 a.m., take the pill, and go back to sleep) but everyone else seems to think that consistency is very key to feeling well. I’m sure you do this but I just have to ask…. your calcium supplements (or other supplements) are always taken four hours before or after your Levo, right?

Hope you’re having a decent time at the party tonight. Sometimes I wonder if I would feel better if I would just get off my butt and get back to my normal routine instead of “taking it easy” but in my case it’s only been 2.5 weeks so I’m gonna be a slug a little while longer.
Sue

[SueAndHerZoo]

in reply to: Sue’s TT – July 16, 2013 #1180387

amosmcd wrote:

Hi, Sue–

If you work for a large enough company and work enough hours in a year, you can qualify for 12 weeks a year of FMLA leave (Family and Medical Leave Act). It’s a federal law. Some states gave their own versions as well. It’s a way to protect your job while out sick for a qualifying condition (thyroid stuff is qualifying.). You can take it in chunks (like for post -op recovery) or intermittently (a day here or there.) I would Google it and see if it’s something you can get. You have to use either vacation or sick leave (your choice which gets used first) and then if you run out, it’s unpaid.

I’ve already talked to my boss about it and she said I should go for intermittent. Not all bosses are nice about it, but they can’t do a thing to interfere, and they are not allowed to ask the medical reason, either. It’s a great thing to have. I hope you can get it. Let me know!

Amy

Hi Amy.
OK, I didn’t realize you were referring to FMLA. Yes, we have that but I honestly won’t need it. I am the Executive Assistant to the President of the company and me and “my guys” in the front office are like family. They would never let me go for something like illness. I have plenty of vacation and sick days left this year and will use them as needed and I’m sure even when I run out of those they will pay me for staying home as needed. I was just wondering about the “intermittent” term because I’m sure that’s what you and I will both be needing in the next few months…. intermittent days off.

Thanks for the info.
Sue

[SueAndHerZoo]

in reply to: Hello again, and another post-TT update #1180508

Crap…. the idea of you skipping your pill tomorrow really scares me and bothers me but of course it’s your body and you know it better than anyone (including the doctors). But something about not maintaining “consistency” really scares me. How about a compromise….. can you take half a pill tomorrow? That being said, I really don’t think you will feel the results (if any) in time for the party…. the half life of thyroid meds is very long.

So in a nutshell, you’re having both hypo and hyper symptoms, right? I wonder if it’s time to switch to Synthroid (instead of Levothyroxine)?

Damn, wish we didn’t have to be our own doctors so much with this disease…. it really adds to the pressure and anxiety knowing that there are so many variables and not knowing which way to go.

If it were me (and we are NOT doctors, as you know) I would stay with the same dose for a little longer (I believe there are always about 7-10 days worth of symptoms when changing doses) and take the beta blocker to keep the heart rate under control. Just thinking out loud…. of course I’m not qualified to give that kind of suggestion.

Do what you feel is right, but keep in mind that freaking “patience” is supposed to be key when changing treatments. I forget…. how long ago did you increase your dose?

Sue

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