[SueAndHerZoo]

in reply to: Levothyroxine side effects? #1181660

Hi Katie.
I can totally relate to the frustration of anxiety and trying to figure out what’s causing it. I’ve had it for most of my life but I’ve also had a goiter for most of my life so now I wonder if that’s always been part of the cause. It got much worse when I got Graves (about 7 years ago) and gets better when the disease is under control.

I had a TT 4 months ago and the anxiety fluctuates depending on where my thyroid levels are. But most importantly, I see an increase in anxiety whenever we tweak my Levothyroxine dosage, whether it’s up or down. Even the TINIEST change in dose sets off symptoms so I guess I’m really sensitive to it. I’m hoping that after I’ve been doing this longer I will be able to tell the difference between a real anxiety problem and / or a physical problem as opposed to a temporary set back caused by changing doses. I think I am probably at a good dose after this latest change so I am going to stay at this one for a while and see if the anxiety simmers down. It’s been 4 weeks since the last dose change and usually at 5-6 weeks I start to feel “normal” again.

Good luck – I hope you find some relief soon.
Sue

[SueAndHerZoo]

in reply to: organization abilities compromised #1181729

I hope I’m not jinxing myself by saying this but, no, haven’t had the organizational or overwhelmed issue. Thank GOD – my job is to keep me and all my execs organized and if that starts slipping we’re all in big trouble! Yes, I’ve had Graves for 7 or 8 years now but have always been hyper, even while on ATD’s and even now after my TT. Haven’t gone hypo at all yet so who knows, maybe I will experience this when I get out of hyper range.

I agree… if I get plenty of sleep, don’t eat much sugar or carbs, and don’t do anything overly stressful or strenuous, I can be more predictable, but even though I’ve only changed my Levothyroxine by 6 mcg. a day (4 weeks ago) I KNOW I am feeling the affects. How ridiculous is THAT!?!?!

Hang in there – this has got to get better for all of us . . . we deserve it, damn it.
Sue

[SueAndHerZoo]

in reply to: Does TTX qualify for Short-Term Disability? #1181713

Mine qualified. I was going to use vacation time but when the HR Director heard about that he insisted I use Short Term Disability instead. I had planned to be out 2-3 weeks but at my post-op check-up asked my surgeon to keep me out another week (total of 4) and then send me back for half days for a week.

Uninterrupted paychecks and a wonderful vacation.

Sue

[SueAndHerZoo]

in reply to: organization abilities compromised #1181727

I’m not sure it’s a GD thing – I’ve always been a very organized person (to the point of being anal) and still am… no problems there. Of course, I haven’t gone hypo yet, either, so God only knows what will happen if I fall into that range.

I was just reading one of your posts from November 4 and it really hit home with me:

My biggest piece of advice for anyone starting out is: don’t wait to be well. If you feel well enough, even if still somewhat sick or off, to do the important things in your life go ahead and do those things. Waiting to get back to full and normal health can backfire – not saying I’ve given up because I certainly haven’t, but I put my life on hold for way too long waiting for a state of “normal” that never arrives. Now I know that sounds awfully discouraging so please also read the many stories of people here who feel that they really did get restored. I think recovery is complicated by many factors including genetic makeup, treatment method, and external events beyond our control so it is unique for each person.

I’ve been trying really hard lately to talk myself into something similar: sieze the day, don’t worry about “what if’s”, don’t let history cause you to hinder your future, etc. but the unpredictability of this rollercoaster makes that SO difficult to live by! I can be feeling fabulous, wonderful, healthy, both mentally and physically, and within 5 minutes – BAM – be wishing that I were home lying on my couch and wishing the world would go away. Most of it is physical but the emotional part kicks in too, causing me to feel defeated, depressed and weepy. So I often end up cancelling any plans I may have had and just head home to give in, and either a few hours later or definitely by the next day I feel much better.

Every time this happens to me I swear I’m coming down with something. I feel general malaise, skin feels warm to the touch (but only to me) feel like I have a fever (but I never do) and I just want to quit what I’m doing and lie down. A few times I have even taken work home with me assuming I’d be calling in sick the next day but low and behold, I wake up fine.

So how do you deal with commitments and plans that involve other people? I find myself hesitant to agree to meet with anyone because I never know when I’m going to have to let them down by cancelling. I’ve tried to push my way through this and just keep going anyway – sometimes it works, most times it doesn’t.

Anyone else? (I know, it will get better, right? Darned patience thing!)
Sue

[SueAndHerZoo]

in reply to: Decision to make btw ATD and TT #1181685

snelsen wrote:

Re short term disability. It is my personal opinion that you have no chance of getting it. I went back to work full time 2 weeks after the surgery. It was a dumb thing to do, and I should have gone part time for a few days. But you could probably take a MOL (medical leave of absence) if you don’t have sick time accrued. Each thing requires paperwork from the doctors office, and their opinion. In my case, I had a baby, and it was great to have other people take him, and generally have people bring some meals, do the laundry, that first week.
Shirley

I’m curious, Shirley, why do you think she won’t be able to get short term disability while she recuperates from surgery? I had planned on using vacation time to recover but my HR Director said “are you nuts???? Don’t waste your vacation time, go on STD!” So he called his assistant, she got all the paperwork going, I had my surgeon fill out a form, and it was a done deal. When I went for my follow-up visit with my surgeon three weeks after surgery she asked if I wanted to go back to work or if I wanted to stay home a little longer so I said “one more week at home, and then back half days for a week”. She sent the “return to work” order to my office and the checks kept coming.

Did you have a different experience?
Sue

[SueAndHerZoo]

in reply to: Decision to make btw ATD and TT #1181683

Yes, I was on short term disability after my surgery. I had told my employer I would be out between 2-3 weeks, and I ended up taking four weeks and continued to receive a paycheck, uninterrupted. The week I went back I only went in for four hours a day. I know lots of people go back sooner but this time frame was perfect for me.

Good luck with your appointment in January!
Sue

[SueAndHerZoo]

in reply to: Decision to make btw ATD and TT #1181681

Hi there.
I was diagnosed with Graves about 7 years ago. I was on ATD’s for most of that time except for an 18 month remission. Once I came out of remission and had to go back on ATD’s it seemed I had to keep increasing my dose to keep up with the thyroid. All the medication changes and the “rollercoaster” that goes along with the fluctuating hormones were making me an emotional wreck so I talked to my endo about a permanent solution: surgery. he suggested RAI but I didn’t like that idea since that requires a fairly long time to get to a consistent level and I wanted stability ASAP. He referred me to a surgeon, I had a consult, and she agreed I was the perfect candidate for a TT.

I had it July 16th and have not regretted it once. I have posts on this forum journaling all the details of my surgery and how I’ve been feeling the four months since then but if you have any specific questions, feel free to ask.

Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173660

Yup, still along for the ride….. we’re all family now. (and we probably understand each other much better than our biological families do!)

Hurray for insurance and DOUBLE HURRAY for potential surgery! Get that sucker OUTTA THERE!

Your attitude and diet modifications have been so commendable…… you ARE going to beat this thing and will be so much healthier and happier at the end of this ride. it seems like an awful way to get an education but I have learned things about myself and my attitude towards life, priorities, etc. that I would otherwise still be in the dark about had it not been for Graves.

My surgery was 4 months ago and I have not regretted it for one moment. I think I’m just about at the perfect dose of Levothyroxine and I can’t remember the last time I’ve felt this good – possibly decades. Sure, there are still some ups and downs but they are manageable and now I don’t let them get to me the way I used to because I know they are temporary and the “ups” are right around the corner. Yours are, too.

Congrats on being so close to being the victor over this thing. What a ride, huh?
Sue

[SueAndHerZoo]

in reply to: Worried thyroid removal will ruin my singing #1181584

I had a TT on July 16th of this year and I have had no issues with my voice. I was talking just fine right out of the recovery room and continue to do so, not even an hour of temporary hoarseness.

My surgeon did a scope of my vocal cords during our initial consult to see if there were anything that might cause a problem and said everything looked fine – no worries.

I think a reputable surgeon who does many TT’s in a year is your best bet for not having your voice affected. It’s a very tricky surgery but if it’s performed by someone who does it often they know the precautions to take and the pitfalls to avoid.

Good luck.
Sue

[SueAndHerZoo]

in reply to: All normal but feeling terrible. #1181546

ChristinaDe wrote:

Yeah, I can’t remember how that goes either…whether hyper makes it fall out & hypo makes it break off OR if it’s the other way around. During the time my levels were changing I think it was both for me. My hair became so dry, brittle, lifeless, flat, dull, etc.

In my case, my hairdresser wanted me to avoid all harsh hair chemicals because my hair was barely hanging in there. She wanted me to wait (why does everyone tell us to wait on EVERYTHING?!!) until my levels and hair fallout stabilized & my hair became healthier/stronger. So she wouldn’t even give me highlights.

Just so you know, once my levels improved & stopped moving, the body in my hair improved almost overnight. Waiting for what fell out or broke off to come back is another story of course. But I’ll take the increased body & no more handfuls of hair in the shower for now!

I don’t really know if my hair is falling out from the roots or if it’s breaking, but it seems to have slowed down over the past week or two. And regarding “waiting” on the perm tomorrow? No! I, too, am sick of having to “wait” for everything related to this disease (which involves practically every organ in our bodies). My hair is not brittle or dry- a few weeks ago my hairdresser was marveling at how healthy and shiny it was, just…. falling out. So I’ll gamble tomorrow with a mild perm that is only on my head a few minutes. There are too many other “waits” I’m already patiently trying to stick to….. I need some immediate gratification on this one.
Sue

[SueAndHerZoo]

in reply to: All normal but feeling terrible. #1181543

ChristinaDe wrote:

As for hair fallout…OMG!!! Every time I have hypo symptoms, every time I have hyper symptoms, every time I go through a dose change…my hair falls out fast and hard!!! Really freaks me out when it happens. Once things settle, the fall out stops. Until the next time. However, and this could be in my head, but I swear that since my TSH landed under 2 and stuck there for more than a week, I’ve begun sprouting a bunch of tiny little hairs. My hairdresser even mentioned it at my last haircut. So if I’m being delusional or overly hopeful, then so is she! But I’m absolutely positive that the abnormal fallout has stopped & that the body to my hair has returned. So hang in there. (We really say that to each other a LOT, don’t we?) Sound like your doc is being responsive to your concerns and the way you feel…so glad to hear that part!

Oh my goodness, talk about hair changes – I called my hairdresser this morning and told her that she MUST find an opening for me in the next day or two to give me a perm because I can’t take my hair anymore! I used to get perms regularly for the body and holding power but then let it all grow out and get healthy and untreated. She was shocked when I asked for a perm again after all the work growing it out but I told her it’s getting so thin and flat and fine that I needed the chemical help so I go at 2:00 tomorrow.

I wondered if getting a perm during these times is a bad idea but I think we are losing our hair from the roots, NOT from breakage, right? Well, I guess I’ll know tomorrow when she takes the rods out… if all my hair comes out with it I’ll know it was a bad idea. 😮
Sue

[SueAndHerZoo]

in reply to: Tiny dose change – big symptoms? #1181575

Thanks, Christine. I think I’ll print out your reply and keep it in my purse with some of the other valuable and comforting snippets I’ve taken from here.

I told myself that since this recent change is so small that I wouldn’t feel much in the way of symptoms, and now that I am feeling them I’m telling myself they probably won’t last as long as usual since it’s a tiny change. That’s my story and I’m sticking with it.

I truly think this dose will be the “winner” because I could have stayed at 112 every day but wanted to bring down the anxiety and insomnia a notch. If alternating every other day isn’t causing me problems then I think I’ll be great in a few weeks. Again, that’s my story and I’m sticking with it. I’m projecting good things in the hopes the Universe (and my body) will help me speak the truth.

Thanks for the reassurance.
Sue

[SueAndHerZoo]

in reply to: Tiny dose change – big symptoms? #1181573

Thanks for letting me know I’m not alone, different drug but same response.

I suppose I could try to have a 106 pill made for me but I won’t even think about that until we determine if 106 is where I need to be, and of course we won’t know that for about 7 weeks. I’m not sure if the daily dose change is causing the issue or if it’s the overall “lowering” of my cumulative dose that’s doing it. I almost think it’s the cumulative because the symptoms didn’t start until last night, day 7 of the change. If it were the alternating days causing the problem I probably would have noticed it sooner, but who the heck knows.
Sue

[SueAndHerZoo]

in reply to: All normal but feeling terrible. #1181541

Good grief….. maybe the planets are out of alignment or something, it seems like we are all going through “dosage tweaking hell” right now! I just posted 5 minutes ago about changing my meds a tiny bit but feeling big time awful. This disease never ceases to amaze me, and I love the comment about having a baby and forgetting afterwards how painful it was. I know I went through this during my last dose change but forget when it’s over and need reassurance again.

Glad to have you all here.
Sue

[SueAndHerZoo]

in reply to: Pain being hypo after TT. Might go on Armour. #1181492

Oh, Amanda…. I can feel your pain and frustration – I know first-hand how hard it is to be “patient” while we go through the ups and downs and the numerous medication tweaks. I had my TT on July 16 so I’m only at the 3.5 month mark. I finally started feeling good (not perfect, but good) about 10 days ago and it’s starting to be consistent rather than “1 good day followed by 2-3 bad days”.

I agree STRONGLY with what the others said about having to give each level at LEAST 6-8 weeks before judging how it’s working. That patience part is so hard for me but it really has taken me a good 7 weeks after each dosage change for things to settle down. Each time we tweak the dose I get all kinds of symptoms for well over a month. I’m so glad everyone here told me to wait it out because if I had changed the dose again too soon this rollercoaster would never end.

My last bloodwork (10 days ago) showed that I am still slightly hyper but I told the endo that I really needed a break from changing doses and that I’d like to stay at the dose I’m at a while since it feels so good to be “stable”. Even if it’s not a great feeling, it’s a consistent one. But three days ago I decided I’d had enough of being hyper so I had my endo call me in a lower dose of Levothyroxine and now I’m going to take 112 one day, 100 the next, and keep alternating, which I guess works out to 106 mcg. per day. So now, I will wait the 6-8 weeks to see if that’s my magic number.

Yes, this is so frustrating and some may say 3 months isn’t long but it feels like a lifetime when you’re not feeling well. You’re almost there…. hang in there…. this WILL all get better. Don’t let it defeat your attitude….. you’re on the home stretch!
Sue

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