[Gabe]

#1179646

Thanks Kimberly….I will start the research. Thanks for all the resources! Karen

[Gabe]

#1179647

9 weeks update:

Labs say I’m still hypo. TSH is 7.1, T’s are within range (can’t remember numbers). Endo upped Levo to 125 mcgs so we’ll see what that does in another 6 weeks.

Generally feel relatively good…physically. I still need a Xanex to sleep however tried a few nights without it just to test to see my dependency and it was fine. Afraid of becoming dependent so will watch carefully. My energy levels are pretty good. Surgical site is well healed…a few strange twinges now and then and scar is barely noticeable.

TED is big issue. Prisms were increased again and my 4 week check with strabismus specialist is August 15. I’m hoping to hear that there is no change. but something tells me the double vision is a little worse. Anxious for this to stabilize so I can be considered ‘inactive’. But hear it can go on for years. Ugh.

Most disturbing is the emotional, mental swings. I’m still having bouts of crying, mood swings, and probably depression. But they also come and go. Not always present and not predictable at all. This past weekend I cried at everything and for very silly reasons. Can be embarrassing around others when you just can’t explain what’s wrong.

Have experienced some weight gain. Maybe 5 pounds but not overly concerned. I’ll deal with that after everything else.

Oh yeah,,almost forgot…developed a lovely case of shingles on right side of back and stomach. Just something to add to the fun. Finished the antivirals so hoping the uncomfortable (and sometimes painful) sensations go away soon!

A good thing…right after surgery and when I was very hyPO the night time hot flashes were terrible. They have subsided considerably. Something to be thankful for.

I joined the Deepak Chopra and Oprah Winfrey free 21-day Miraculous Relationships Meditation challenge that started yesterday (8/5). Can’t hurt and maybe can provide some calm to my crazy thoughts!

Much thanks to everyone on this forum. Without you I would feel very lost and lonely!

Karen

[SueAndHerZoo]

#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

[Kimberly]

#1179649

Hi Karen – Thanks for the update! I would mention the mood swings to your doc if you haven’t already. Obviously, you have been through a major upheaval with the surgery, *plus* studies have proven that TED comes with a major emotional burden. But your doc should still be aware of what is going on.

As for the meditation, we had a presentation at our 2011 Boston conference from Dr. Herbert Benson, who is a pioneer in doing credible research on mind-body medicine. Although it’s obviously not a substitute for conventional medical treatment, meditation does have many proven health benefits. Keep us posted as to how it goes!

[Gabe]

#1179650

Thanks Sue and Kim. My doc is raising my Levo based solely on the fact that I’m still technically hyPo with a TSH of 7.1. I haven’t talked with him since June 26th so he’s not aware of the emotional stuff. I’m not scheduled to see him until October so I may have to place a call. He’s not the easiest to track down and I’m now sure I ‘like’ him. Silly but I’ve been procrastinating finding another Endo in an location where they are scarce.

I really think the emotional stuff is a combo of everything… Graves’, hyPo, TED, surgery, stress at work, stressful relationships, sprained ankle, shingles….all together has me just a bit down. If the increase in Levo doesn’t fix some of this, I will talk to my doc(s) about options. Hopefully the meditation also helps.

Thanks! Karen

[SueAndHerZoo]

#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

[Gabe]

#1179652

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

[SueAndHerZoo]

#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

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