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in reply to: I’m confused by my recent labs.. #1178203
Alexis. Thank You! Your explanations are clear and make sense to me. I do plan to ask him about a lower dose every day vs the all or nothing approach. I originally started on 10mg 1x/day and nothing changed after 6 weeks so he doubled it. Maybe somewhere in the middle is better for me. I’ll see what the dial back does to the hyper vs hypo. The good thing is the surgical consult is 2 months away so hopefully I will know whether I can be stabilized toward remission or get rid of the thyroid for good!
Your response was very helpful!
Thanks!
Karenin reply to: Questions about RAI and TED #1177817Momof5. I too feel more calm about surgery, as crazy as that sounds since its not calming to enter into any surgery lightly! So as a compromise and to remain open to options, I’ve scheduled my surgery consult for June 5. That gives meds time to work (which I believe they are making me mental!) and to be as sure as I can be that surgery is for me and not my normal impulse behavior.
My goal is that the second half of 2013 will be MUCH better than the first half!Best wishes, Karen
in reply to: new user 1 year #1177895I don’t know how to relate posts to new ones so what I do, since I mostly read/post on my iPad, is copy and paste anything I find interesting in tany article or any post into a ‘memo’ and then I organize from there. I bet if I printed it out today it would be a small book since I copy so much from this site or articles.
I would also recommend watching some of the YouTube videos that GDATF posted from their last conference…very informative.I’ve only seen my endo once so I can’t judge whether he’s working for me since I was so dazed and confused during my visit that I didn’t even know what to ask. Now I’m armed and ready! In the meantime I have a great primary care doc who answers all my questions and encourages me to participate in my care and treatment options.
in reply to: new user 1 year #1177893Hi fishman. I’m so glad I found this site early after my January 2013 diagnosis. I’m already hating Methimazole. My mood swings are horrible and I think it’s the combo of Graves, Meth, and beta blocker (and an occasional Xanex to gain some sleep/control!). Don’t know how you guys on meth have done it, did it, or continue to do it as long as you have.
My sister did RAI and had a great experience. I’m leaning to TT and have the consult scheduled. I’m concerned about the impact of RAI on eye involvement and I want to guarantee its gone since RAI sometimes doesn’t work the first time or could take many weeks to work
That’s me and my dilemma. I wish you the best!
KarenThanks for sharing Kimberly. Every story is so different yet familiar/similar at the same time.
Momof5: I hear ya. The feeling of confusion and lack of control makes me feel like I’m crazy. Living from from lab-work to lab-work is nuts. Always anxious about what new confusions the results will bring. I want this gone and therefore strongly leaning towards TT for me. I So want a day when I’m not in tears for no reason or shuffling paperwork because I can’t focus or *itching out people for little, stupid things. Beam me up Scottie!
Best, Karen
Haha Sue…I have one dog (Gabe), three house cats, and numerous ferals I take care of. I’m also very into animal welfare, especially establishment of no-skill shelters, etc. A worthy cause and a helpful distraction.
I’ve never tried fostering because I think I would keep everyone and then I would be without a husband….
Thanks for the exchange!
P.S. my day got better after I marched myself thru a miserable morning and got out of the house!Diane & Sue… thanks for feedback. I took my meds at the normal 8:00 a.m. and 9:00 a.m. and can tell I’m feeling slightly better. It appears that overnight when my meds start wearing off that the mornings are the worst.
Sue, I’m totally agreeing with the anticipation of future events… I always was a planner and looked forward to doing a variety of things…now I feel a little frozen about any commitments to events but on the other hand I don’t want to be controlled and house-bound by this disease..
Crazy…
So I’m going preservative-free eye drop and vitamin shopping at our local health store just to get out and do something. Then a walk with my favorite treatment…my ‘son’ Gabe the Boston Terrier who is just too cute for words!
Thanks for all the suggestions!
Karenin reply to: Benadryl for eye swelling? #1177623@LKballenger. Thanks. I won’t be taking Benadryl based on further research. Plus I remembered it actually has the opposite effect on me. Makes me hyper and I certainly don’t need that right now. Just finished watching the You Tube video Kimberly recommended and I plan to try many of the things listed there (top 10 things to look and feel better).
Have you tried Melatonin? I used it every night for over 10 years. It’s a natural supplement. Before Graves it worked very well for me.
Karenin reply to: New and scared – just like everyone else. #1177690Welcome! I’m fairly new to GD but not to the forum. The forum is a tremendous help and I check in almost every day. The crying thing…lord…it’s a tough one, especially at work in front of my employees! Thank goodness they are all understanding.
I’m not patient for the roller coaster of treatment and have scheduled a pre-surgical consult for June. Dont want to do RAI because of eye involvement and other reasons. Who knows meds might work before then. But for the last 3 months I’m not feeling much different except that the beta blockers have blocked the physical symptoms (sweating, heart rate), however if I miss a dose my blood pressure shoots up and heart races.
The challenge is to find ways to manage the disease instead of IT managing you. Easy to say.
I’ve learned that every person has to find their own path and treatment that works for them. This forum helps you ask the right questions and exchange fears and tears and smiles with people who know what you’re going thru.
Best wishes,
Karenin reply to: Few things to help you feel better. #1175503Thank you for re-posting. I’m new to all this and your tips are very helpful. I start part time from a very stressful job today so I’m hoping to help some of my environmental triggers with this one huge step (for me).
in reply to: Benadryl for eye swelling? #1177620Thanks Dee, I’ll look into the selenium..actually never heard of it. I use the Refresh drops throughout the day. I agree about the additional meds since I’m taking more in the last 3 months than in my entire life
Thanks!
Karenin reply to: TT = anxiety reduction? #1177631Sue, I believe everyone has to do what’s right for them. I’m leaning to TT also. Have my surgical consult scheduled for June. Sounds likes an eternity but it should give me time to get my levels up and make sure I’m not being overly impulsive.
I agree that the anxiety, rage, and inability to have a focused thought are the symptoms that are distressing for me. Can’t fathom years of this.
Some of the TT experiences on this forum have helped me come to a decision.
So for me when the anxiety or rage gets very overwhelming, which thank goodness is not a daily occurrence, I pop a Xanex and move on.Karen F.
in reply to: Becoming a Member #1177585Kimberly. Can you check mine also….seems like I got the same error message this morning and then the page became a lot of HTML. Can’t tell if the credit card went thru. Thanks! Karen
in reply to: I’m with Gabe – this thing has got to go! #1177571Sue. So sorry to hear about your last few days/hours. My doc gave me an RX for Xanex. And while I hate using any drugs and don’t like the stigma of Xanex and the fear of dependence, I do find that having them handy in emergencies helps me. That’s me however.
My sister was uncontrollable Graves with meds, especially unable to keep her heart rate reasonable with any beta blocker so went thru RAI 5 years ago fairly early in her DX and has been doing very well ever since. But everyone is different. Even sisters with same disease.
I’m fairly certain I will be doing the TT, however even that decision vacillates daily because the thought of losing a critical body part is not easy…so not only does the disease create anxiety, the treatment decisions are stressful
Best wishes,
Karen (aka Gabe….he’s my adorable Boston Terrior and my best ‘treatment’!)in reply to: Living with Graves Disease… #1177497DeeColleen… I too am new to this disease and new to this forum. The disease sucks; the forum is the best! I now feel empowered and understood (at least by fellow forumers). Reading this forum helped me to manage my doctors, research my own path, understand what is happening to me, and most importantly insist on things that were not being done by my docs.
It is life altering to go thru this and unlike some diseases where others can look at you and tell you are ‘sick’, this disease (other than eye issues and weight loss/gain) can appear to others as if we are just fine (or maybe a little crazy) and not be as compassionate as they may be with other more obvious or well known illnesses.
Managing your stress levels is extremely important (as I have found). If you can scale back on your course load while you are managing your Graves you will find that makes a big difference.
Best wishes,,,Karen
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