[SueAndHerZoo]

in reply to: Update and Thyroidectomy Question #1180856

Hi Elaine.
I had surgery 6 weeks ago and was on Methimazole up until the morning of surgery. Even though we were able to get my free T3 and T4 into an acceptable range, my TSH never came up from it’s insanely low point. You may be able to have surgery with a low TSH as long as the other numbers are acceptable.

Good luck with your challenges…. you sound like a fighter and you will conquer this!
Sue

[SueAndHerZoo]

in reply to: Hi Friends….been a while….an update… #1180849

Hi Karen. Thanks so much for checking in. I appreciate the “warning” about the dose change mood swings and will try to remember to prepare family and co-workers if and when my dose changes.

I am terrified of developing eye symptoms and have been obsessive about every little vision blip I have. I’m so sorry you have to go through this – it’s so unfair. As you said, you have conquered most of the other stuff so this, too, shall pass, but I’m sure it doesn’t seem like it’s passing fast enough.

Thanks for the update and please continue to check in.
Sue

[SueAndHerZoo]

in reply to: My TT Journey 8/27/13 #1180785

Thinking of you and hoping all went well. Check in with us when you’re up to it.
Sue

[SueAndHerZoo]

in reply to: Another Husband #1180775

Hello Rick.
So sorry your family is having such a tough time but I’m glad you found us – this is a great place to vent and find friends when you need one most.

I’m not sure I have any sound advice for you but I did want to reply and let you know I sympathize with you. Part of me wonders why your wife is still having such issues 10 years after RAI and why the doctors keep tweaking her meds. I can imagine it’s rough on her since changing meds and/or their dosage does put us into a tailspin but that’s another story . . . this one is about you and your children.

Have you ever discussed therapy or marriage counseling? If that’s a taboo subject with her, too, then I would recommend YOU go get some. You need help learning how or if you should continue to live like this. And maybe if she sees you going to counseling she’ll see how seriously this is affecting others.

Again, sorry I don’t have much to offer but wanted you to know that you’ve found a safe place to come and vent.
Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173638

sharon01 wrote:

I also have graves, had total tyroid removed in April, have been on predisone two separate times since February, down to 10mg a day, take Xanax, Lexapro, and seraquil, for nerves and anxiety, nothing is helping,,,,, I don’t understand how the docs can say it does not effect you emotionally, I am a total nervous wreck, and it gets worse every day, cannot get apt with dr’s for at least a month to go over meds…..feel like I am coming out of my skin….everyone says it’s just nerves, but I feel like I have no control over this…feel like I’m loosing my mind, and feel so alone….

Hi Sharon. Did you have the anxiety before Graves or is it just since? Also, you should probably start a separate thread about this so we don’t hijack Rob’s thread.
Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173636

Hi Rob…. thanks for posting an update. Congrats on learning how to feel good in spite of all the challenges; I often wonder how much of this awful disease is caused by the bodily disruption and how much is caused (or worsened) by what it does to our psyche.

I too suffer with an extreme case of the “what if’s” and have had it all my life, even before Graves, and am constantly working on how to conquer that. I have short periods where I’m really successful and totally embrace the present moment, but most of the time I slip back into my old habits.

Thanks for the reminder that I CAN do something to modify the way I feel – I don’t have to feel powerless over what diseases do to me, I can work around them and with them.

I truly hope peace and happiness are permanent (or at least frequent) factors in your life.

[SueAndHerZoo]

in reply to: Possible Hyperthyroidism – Help? #1180704

Hi there…. it’s me …. the Queen of Anxiety.

I have dealt with bad anxiety for the past 40 years and have tried several different things to help or alleviate it. Medication has been a God-send but what I have recently discovered is that most (if not all) is being caused by my thyroid. I had it removed on July 16th and I can’t believe how differently I feel, mentally and emotionally. I hate to be TOO optimistic but I am eventually going to try getting off my anxiety meds once we get my thyroid replacement meds stable.

In answer to your question, yes, the thyroid being out of whack, even a little bit, can cause anxiety, especially if you’re already pre-disposed to it. It was always the first symptom and most severe symptom when my thyroid was acting up, even if the blood work showed I was only mildly out of range. My endo wasn’t so sure that such severe anxiety could be caused by my thyroid but I saw it happen consistently every time my levels fluctuated.

It’s a horrible thing to try to live with and I know how badly it can take over your life. I now wonder if the fact that I’ve had an enlarged thyroid for 30 years (even though blood levels were normal) is why I’ve had anxiety for 30 years. Medical science can only prove so much…… knowing our own bodies is sometimes a better science.

Sue

[SueAndHerZoo]

in reply to: Graves NOT treated #1180711

Hi Mike. Glad you found us but sorry you’re here. I can totally relate to the anxiety taking over your life (and the other symptoms, too, but when the anxiety enters the picture, all the problems get intensified). I was diagnosed with Graves 7 years ago (although I have had a goiter for 30 years and now believe it’s been causing me grief for decades). I treated the Graves with Methimazole for a couple years and even went into remission for a year or two but when it came out of remission in January I was absolutely miserable and had to keep increasing my dosage to try and keep it in check. The anxiety was what caused me the most problems – the last time I saw my endo I was sobbing in his office telling him I couldn’t live like this anymore. He referred me to a surgeon, I had my thyroid removed on July 16th and so far, no regrets.

I’m not suggesting you go in for surgery but I strongly suggest you do something to get the Graves under control (either medication, RAI or surgery). Graves is not something that will go away on its own and it can be dangerous and degrade so many different aspects of your health, not the least of which is your eyes.

Please don’t go untreated – I’ve never heard of Graves getting better by itself.

Good luck.
Sue

[SueAndHerZoo]

in reply to: Running out of Steam Post TT #1180667

Thanks, Alexis. It really does help a lot to hear that. I know that in 6 months or so I won’t remember what this period was like but while you’re in the thick of it it’s so hard to remember that this is all “normal”. Especially when you feel really good for a while…. you almost forget you’re not well and it takes me by surprise (and I get so disappointed) when I start to feel unwell again.

I’m not sure if this is thyroid-related or not but the way you worded it does strike a cord with me. You said you didn’t “feel well” and in the afternoon, “not so great” and that pretty much describes me at sporadic times. I can’t say I’m exactly sick or dizzy or sick to my stomach or headachey, I’m just “unwell”. Nothing severe enough to really complain about yet it still takes you down several notches and makes you not want to do anything.

So glad you’re feeling great and I know that I will someday soon, too. I’m not one for wishing my life away but right now I kinda wish I could make a few months go by faster.

Thanks for the comfort and support.
Sue

[SueAndHerZoo]

in reply to: Running out of Steam Post TT #1180664

snelsen wrote:

Sue.
Yes.
100% normal
Thyroid regulation plus not realizing or believing that a general anesthesia can impact us. Even at 4 weeks.
I went back to work full time and could NOT do it.
Pull out the “tincture of time” card. (: I understand being so so tired, yet unable to sleep.
Shirley in the Denver airport..

Thanks, “Shirley in the Denver Airport”…….. that’s very comforting to hear. Gonna go look for that tincture of time card.
Sue

[SueAndHerZoo]

in reply to: Running out of Steam Post TT #1180662

Kimberly wrote:

Hi Sue – Hopefully, you are fairly close to your follow up appointment to see where your levels are. Every patient is different and sometimes hypER/hypO symptoms can overlap, but keep an eye out for common symptoms of hypO such as fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse. If you start experiencing these other issues, you might consider asking for a quicker follow up appointment.

Hi Kim.
I thought it didn’t make much sense to check levels until we’re at the 6 week mark, but I do have a routine follow-up with endo next Tuesday so will have blood drawn this Friday. Still, that will only be about 26 days that I’ve been on Levothyroxine so not sure how solid of an indicator that will be.

So you think my needing a nap in the afternoon is not “normal”?
Sue

[SueAndHerZoo]

in reply to: Running out of Steam Post TT #1180657

Thanks, Diane…. it really helps to hear that you took naps and that this too will someday pass. It’s just that I’ve read about others going back to work full-time after 2 or 3 weeks and I can’t imagine being able to do that even though I have a very un-strenuous office job.

I have been trying to remind myself for the past couple of hours that maybe this is just what it feels like to not be hyper and anxious all the time…… this will definitely take some getting used to. I have been a whirlwind for years and maybe the contrast of NOT being hyper and running around like a hamster in a wheel is what’s got me thinking I’m too comatose.

And it has only been 4 weeks so who knows what my levels are or what my ideal dosage will be.

OK….. patience. Naps and patience. (Those are SO not in my vocabulary!)

Sue

[SueAndHerZoo]

in reply to: Hello again, and another post-TT update #1180527

Hi there.
I was just re-reading this thread to try and keep up with all the Levo dose changes you’ve been through. I kinda hope I’m reading it wrong but it seems like you have been on three different doses in just a matter of 2-3 weeks??????

I think you started at 75, then they raised it to 88, and then, instead of dropping back down in a small increment, they plummeted you down to 50 mcg????

Lord knows I’m very new to this end of the disease (been hyper for years and just recently had TT) but none of those numbers seem to make sense. 75 mcg is fairly low so I could understand the change to 88, but then to drop way down to 50? For someone who has no thyroid????

Today was my first day back at work and I was chatting with a female co-worker (I just found out she has been hypo since giving birth a few years ago) and even though she has her thyroid, she’s on 112 mcg per day.

I hate that you still feel crappy and it scares me that you seem to be on low doses but what REALLY bothers me is how quickly they change your dose. Aren’t we supposed to give each new level about 6 weeks?

Sorry to probably confuse and sadden you more, but I really feel uncomfortable with the treatment you’re receiving.

Any chance you can see an entirely new endo and start fresh?
Sue

[SueAndHerZoo]

in reply to: Hello again, and another post-TT update #1180524

Yoohoooo – can I throw some of your own words back at you?

“Patience is over-rated. I think a good scream and crying helps more than trying for Zen moments, when your thyroid levels are not yet stable.”

So don’t apologize or feel bad for what you consider “whining”. You’re not whining, you’re sharing and it’s so very helpful to others. PLEASE remember that. Us other TT patients want and need to hear what the experiences of others are and we can support and learn from each other.

Isn’t it odd that it seems to disappoint worse when we have a bad day after having a few good ones? When we feel consistently yucky it’s one thing but when we start to see a light at the end of the tunnel and then the light dims again, it hurts twice as bad. It really shakes our faith and confidence and makes it harder to keep a positive attitude.

But you had a good run and you WILL have more, and then they will run together into your new, healthy and happy lfe. What doesn’t kill us makes us stronger…. we’re going to be damned strong troopers!
Sue

[SueAndHerZoo]

in reply to: Sue’s TT – Part 2 #1180648

Hi Amy.
I’m beginning to think there is no “normal” post TT recovery process. Your’s may be a little more complicated than some but I’m guessing there are no “by the book” experiences written anywhere, even if the doctors sometimes try to make us believe there are.

I’m feeling some hyper and some hypo symptoms….. still a little antsy and anxious yet I’m tired at the same time. At least the insomnia is gone and I can sleep when I allow myself to. Heartrate is usually good (with occasional periods of 100 bpm) but digestive system is going too fast lately. No tremors, no hair loss.

I’m guessing when I tell the doc on Thursday that I’m feeling some hyper symptoms and some hypo symptoms he’ll tell me that’s normal. Hah – it’s not often I get accused of that!

Sue

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