[Gabe]

in reply to: What if we never do RAI or TT? #1179109

Hi Sue. I went directly to my PCP for the name of the best surgeon since my endo just wants to do meds for at least 12-18 months and I can’t and won’t. If you have good insurance and the inclination, get the names of those great Yale surgeons and just schedule a consult. Be ready because it took me 3 months to get an appt in little old Delaware. But it was enough time to make sure I wasn’t being impulsive, truly gave meds a chance, and did my research. I personally don’t believe they wouldn’t do a TT because of your levels (unless they are extremely bad). Then you would have a complete picture of the paths available to you.
Hope today is better for you!
Karen

[Gabe]

in reply to: Wish me luck-surgery Friday! #1179074

Karen… wishing you a successful surgery and a speedy recovery. Tomorrow, hopefully, this will all be in your ‘rearview’ mirror and you can focus on recovery..
Best Wishes,
Karen (lots of Karen’s on this forum!)

[Gabe]

in reply to: What if we never do RAI or TT? #1179106

Hi Sue, you have asked the most fundamental question…. For me, I’m having TT on 5/31/13 even though I’m new to GD (January 2013) because I cannot tolerate the roller coaster, cannot tolerate the side effects from the ATDS/BB’s, and want to minimize the eye involvements I currently have. It’s not an easy decision and I’m blessed to have very good insurance and have found a great surgeon who performs over 300 TT’s annually. I’m menopausal and cannot deal with both of these at the same time. I doubt I would ever get to remission and don’t want to have RAI or TT later in life when surgery is more of a risk. Also with my eye involvement I’m relucatant to do RAI, however, my sister has Graves and had a very good experience with RAI and has never looked back and had zero issues with adjusting to her synthroid.

My best to you as this is not easy, regardless of the path you choose…
Karen

[Gabe]

in reply to: Another “I can’t take it anymore” thread :( #1179054

Hi Sue. So sorry you’re blue (hey that rhymes!). You are describing the thing about GD that I hate the most…the roller coaster. I experienced the same thing after each dosage change. Any change in meds or sometimes for no apparent reason, we’re riding the ‘down’. Then up and down again. It’s hard to plan, live a productive life, and stay positive when days are so unpredictable. I hope you have more ups than downs in your future.

I’ve heard the same about cold turkey with stopping beta blockers yet just did the same thing myself. Stopped taking them 5 days ago and am hoping to stay off them until my TT on 5/31/13. I really believe the known side effects of BBs added to my distress. I certainly understand their value and necessity to protect the heart from damage, but unless my heart rate or BP goes haywire I plan to steer clear of these.

I hope tomorrow is the start of many calm days for you…
Karen

[Gabe]

in reply to: Hair loss and muscle cramping/spasms #1178999

Time for a new doctor. Holy moly it’s clear on anything you read about the disease AND the side effects of meds. Don’t you sometimes wonder if its the medicine combos that are adding to all the symptoms. I strongly believe a lot of what I’m experiencing is because of medication side effects — methimazole, beta blocker. These both just add to the misery and then it becomes hard to tell if the bad things are due to the GD or the damn medicines.

PS. Good luck with holding off menopause. Didn’t work for me! The combo of menopause, GD, and medication makes me CRAZY..

[Gabe]

in reply to: Enough is enough! #1179010

Rant away….I feel the same way. What could possibly be next. I’m not sure there’s any body parts or functions left that aren’t impacted by all this. Very frustrating. I’m feeling you today. Lousy weekend, crying jags, bad headache, muscle aches. HATE THIS!!!

[Gabe]

in reply to: My total thyroidectomy journal #1178821

Hi Amy, thanks for the update. Hadn’t thought about the switch in mindset with labs on ATDs and labs post TT. I’ll have to keep that in mind. Great idea to slowly transition back to work…I have that same option so I’ll work that into my plan also. So looking forward to joining the post-TT crowd! Your thread has been a big help. Looking forward to future posts…
Karen

[Gabe]

in reply to: Dose increased yesterday/feeling worse today (?) #1178276

Hi Flora. Forgot to add…keep a journal (doesn’t have to be anything fancy) of how you feel daily. Many of us go thru multiple adjustments to Meth/beta blockers before we feel any better AND sometimes if the meds over-correct you can go hypO, which is its own set of fun symptoms. That’s the roller coaster many refer to. Hopefully your ‘ride’ is short and the ideal dose is found quickly.
If not, like some of us, you still have other options. It’s a very frustrating disease and as hard as it is for you to deal with what’s happening to you, it’s just as hard for your family to truly understand. Many of us are blessed with a great support network, but we can stress out even the most caring people with our ups and downs.
Best wishes, karen

[Gabe]

in reply to: Does TT cure Graves? #1178987

Thanks all, the lack of true clinical data, especially the causes, on this disease really amazes me. I have some minor eye involvement so I’m sure I’ll still have to deal with that after the TT. I’m taking one thing at a time. First the hyperthyroid and the ATD/beta blocker medication side effects, and then I’ll deal with the next thing, if and or when it happens. This has been an interesting conversation.
Thanks! Karen

[Gabe]

in reply to: Does TT cure Graves? #1178981

Alexis, thanks for the info. Wishful thinking on my part. Really all I want is my general good health back and off this medication roller coaster. I guess time will tell if the Graves antibodies decide to do something evil! I’m so looking forward to my surgery, which is crazy…who looks forward to surgeries!!

Karen, thanks for the luggage comment…good laugh!

Best wishes, Karen

[Gabe]

in reply to: My total thyroidectomy journal #1178814

Thanks Amy, I hope my TT experience is half as positive as yours. I’m inspired…Karen (Gabe)

[Gabe]

in reply to: My total thyroidectomy journal #1178811

Amy. Thanks for all the updates. They are very helpful to me. My surgical consult was just moved from June 5 to May 8 so now I’m down to the reality of making a firm commitment. I’m 90% sure TT is for me and your experience is helping greatly!
Best wishes,
Karen

[Gabe]

in reply to: Six years to get an answer #1178883

Allison. I can feel your relief! What a long struggle. Makes me wonder about some of our medical communities. I tell almost everyone I meet to get their thyroid checked! If for no other reason than to get a baseline when they are younge (or older). This forum is a great place to sort thru all the treatment options and to vent…certainly saved my sanity!
Best wishes.
Karen (there’s lots of Karens on this forum..haha)

[Gabe]

in reply to: abnormal CT scan – thyroid?? #1178885

Talley. Wow, shame on doctors who drop bombs like that over the phone, especially on a Friday! Hope you are finding ways to keep your mind and body focused on positive activities this weekend. I wish you the best and hopefully whatever it is will be gone soon.
Happy thoughts!
Karen

[Gabe]

in reply to: Protective eyewear #1178717

Hi Diane. As mentioned in this post, Harley-Davidson (and I’m sure other brands) sell a goggle or eyeglass cover that goes over your existing glasses and blocks all wind. They are available in clear or sunglasses. I bought for my husband and he won’t ride without them. Search their website. Good luck.
Karen

[Author]

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