[amosmcd]

in reply to: Made decision for surgery #1178437

Thank you for the support, everyone! I woke up today feeling better than I have recently, now that the decision has been made. I’ll be glad when it’s over and done with, that’s for sure! I’m not afraid of the surgery itself. I’ve had back surgery and sinus surgery–and a C-section 25 years ago–and only the sinus surgery was a hard recovery. Aside from being pretty painful, I had to walk around in public with a swollen black eye and thinking people probably thought I’d been beaten. Maybe after the thyroidectomy they will think I tried to slit my own throat-lol!!

At least I work in the medical field, so will not have to give a lot of explanation to co-workers. Most of them know I’d been considering it. My surgeon also does plastic surgery, so I’m expecting (and so is she) a nice looking incision, with little to no scar eventually. By 3 months its expected to have faded significantly. I wish she could tighten the skin around my neck while she’s in there!

Thanks for your support. I’m so glad you are all a part of this with me.

Amy

[amosmcd]

in reply to: Feeling hyper again, sort of… #1178237

Thanks for the info on cold hands and feet! I looked up side effects when I first got the Atenolol, but forgot that one. Plus I tend to have cold hands and feet, but not lately, aside from this morning. Still haven’t heard back from the endo. Dudnt like my last endo, but at least I got a call back sooner. Heart rate is better today, but feeling jittery and have palpatations.

My PRU was cut in half on 3/14 from 100mg to 50mg since I was hypo.

Amy

[amosmcd]

in reply to: TED again? Double vision again? Not sure I can do this again #1178175

Shirley,
I am so sorry to hear about this! You have fought a long fight with TED. This is so discouraging. Do you have an appointment to see your neuro-ophthamologist?

I can only relate to having C. diff. I had it after my C-section 25 years ago and it is not pleasant. I hope Flagyl or Vancomycin will have you back to normal soon.

I am with the others who value you so much for your advice, your compassion and caring and friendship.

Take care and here’s a hug for you from me. {{{{{{{{{HUG}}}}}}}}}

Amy

[amosmcd]

in reply to: Goodbye and so much good luck to all. #1178133

Personally, I laughed out loud at brondack’s reply to MsLux’s announcement she was leaving.

I have been on various forums and in my experience posters who join and within a short period of time create havoc, tension and hard feelings and then leave are TROLLS. Whatever amount of helpful information MsLux gave to the forum was heavily outweighed by the amount of hurt that was created because of her bizarre behavior. I was very glad to see her go.

I am amazed that Kimberly showed the patience that she did and did not kick her off. Kimberly is one person (who also suffers from Graves) moderating a large, busy forum. Unless you think you can do a better job and step up to the plate to join her, I think any criticism needs to be tempered by compassion for what a load she has chosen to bear to help us have a forum at all. I know I could not handle that job at all.

This is all I’m going to say about this sad episode on the forum.

I wish everyone well.

Amy

[amosmcd]

in reply to: Uncaring husband(have to share) #1178100

Hi, Karen–

Sorry this happened to you! Men can be unfeeling louts sometimes (no offense AZGravesGuy!) When I was going through my divorce 15 years ago, my ex had the ability to bring me to my knees in tears and rage. I thought sometimes I would die from the intensity of my reactions to his behavior. I was very lucky to be seeing a therapist at the time who told me that I would survive by letting all those feelings wash through me while I sat with them and experienced them, realizing I could not change the way he acted.

Soon after that, his words and actions lost any power they had over me, because I knew I was in control of myself–he wasn’t. I was able to confront him calmly, without any expectations about him. Since then, we have had a decent relationship, which was necessary because of our two sons. I don’t know if this makes any sense or if I’m explaining it well.

Obviously, you are married and going through Graves and Menopause, which I was not back then. That makes is so much harder. I hope you are able to work this out. Hang in there!

Amy

[amosmcd]

in reply to: Exercise #1178139

Hi, Stymie–

I think it depends on what your endo says. Mine said it was fine to walk, which was what I do. I think he didn’t want it to be too strenuous at the time because I was still hyper and my resting heart rate was a little above 100. I was walking 2 miles at that time. I’m a naturally fast walker, so was able to do that without raising my heart rate up.

That was back in September. Since then I have slowly increased the distance and intensity of my workouts. I now walk between 2-3-1/2 miles 5 times a week at about a 3.5 mile/hr pace. I’ve added some small, short hills. I have competed (if you can call walking competing-lol!) in a 5K, and a 4-mile St. Patricks Day Dash (in which I walked and ran.) My body wasn’t really designed for running and I have a bad back, so probably won’t run again–too sore afterwards.

I find that when I’m feeling anxious, which is often, getting outside to walk or walking on my treadmill really helps bring the anxiety down. I feel such a need to do it. If I was forced to stop, I would probably go bat-crazy!

I do find it hard to increase my distance. Not sure if it’s because of my age (55) or the Graves’. There are some days when my body just hits a wall at 2-1/2 miles and others where I do the 3-1/2 miles with ease. But I had to train hard, 6 days a week for a month, to just get in shape to finish the 4-mile. Since hundreds of women in my age group finished ahead of me in the 4 mile, I’m assuming it’s probably the Graves’ holding me back.

Hopes this helps.

Amy

[amosmcd]

in reply to: Just for Fun – The “Off Topic” Thread! #1177845

Beautiful pic, emmtee! I snorkeled in Hawaii, but the turtles were too fast for my camera. They look like slow creatures, but they’re not!

I’m glad you brought up your cat. Cats insist on representation!
I have 4 cats. A brother & sister pair of tuxedo kitties, and then a year ago I adopted my dear friend’s kitties when he passed away. I don’t think I’ll ever catch up with all the fur in the house! They all have such unique personalities, and both of the boy cats sleep with me. I get too hot at night sometimes and have to kick them off the bed.

Amy

[bquote=emmtee]I snorkeled with turtles in Barbados last November. It was amazing. [img]http://im1.shutterfly.com/media/47a3da27b3127ccef2992765e6d700000030O01AbM27hi0cswe3nw4/cC/f%3D0/ls%3D00309041873620130407010546975.JPG/ps%3D50/r%3D0/rx%3D720/ry%3D480/[/img]

I’m not interested in keeping turtles as pets, though. I’m happy with my cat. [/quote]

[amosmcd]

in reply to: Auto immune trigger – questions #1178032

Thanks for the video link, Kimberly! It was a fascinating lecture and very well-presented. It was reassuring and frightening at the same time.

I find it interesting that I have had 3 autoimmune diseases, and am the only one of 4 siblings to have any! Not that I’d wish them on anybody, but no fair!!

Amy

[amosmcd]

in reply to: Auto immune trigger – questions #1178029

Hi, Carrie–

I have a history of autoimmune disorders on both my sides of my family. I was diagnosed with psoriasis when I was 5, but it has been in remission since I was in my early 20’s. Then diagnosed with Hashimoto’s thyroiditis in 2009, although My antibodies for that weren’t very high. My labs were normal, but I had every symptom of being hypo. Put on a trial of Levothyroxine and did well for about a year or so, then started getting hyper, the Levo was stopped and I was even more hyper, and then got the Graves diagnosis last Sept. Over the summer before I was diagnosed I developed vitiligo (an autoimmune disorder where you lose the pigment in your skin.) Starting on the ATD halted that from progressing, but I think it’s interesting that my TSI last month had gone up a bit in 2-3 months. I worry about some other autoimmune process beginning. But so far, so good.

I need to ask my new endo about all this. My other endo was like “yes well things like this can run in the family”, but no info about any preventive measures that might be out there. He was a pain in the rear, hence the new one!

Amy

[amosmcd]

in reply to: Just curious about RAI #1177954

I am still on PTU (did not tolerate Methimazole) just switched to a new endo last month. My levels have been hard to control on ATDs. I tend to swing back and forth from hypo to hyper and back again.

I have a couple questions for my endo next week and depending on what she says, I will either stay on PTU a bit longer or have the TT next month. I was diagnosed last Sept, but was hyper thyroid since a year ago. I’m not keen on staying on PTU long-term due to the potential for liver issues.

Amy

[amosmcd]

in reply to: Just curious about RAI #1177951

I’ve talked about it in my posts about deciding RAI vs TT. My worry about getting breast cancer from having radiation a bit too close to my chest and considering that the radiation is shed through our bodily fluids (which is why it’s recommended to shower a certain number of times a day and flush the toilet three times after using it and we are to keep away from people and pets) just makes me leery.

It’s a personal decision on my part to not have RAI. I think that with my family history of breast cancer and a risk that’s double the average woman’s risk for breast cancer, it really wouldn’t matter if all studies proved there was zero risk of any type of side effect or risk of cancer. I’m just not going to take the chance. So if someday I do develop breast cancer, I won’t have to question whether I played a part in it.

Amy

[amosmcd]

in reply to: Any tips to beat heat intolerance? #1177823

Hi, Karen–

A good friend was having problems with overheating due to being on Prednisone, so I got her a neck wrap, it is probably the same thing Kimberly was talking about. I found it in the sporting goods section of Walmart. You soak it in cold water and it has little beads inside that absorb the cold water and you then tie it around your neck. My friend really liked it.

Also you can get little fans that have spray bottles of water attached that you carry with you and mist yourself to stay cool. I think anything to do with water helps cool people off.

Last summer I was at a college football game and overdressed and thought I was going to pass out in the stands. I ended up going to the ladies bathroom and soaking my head with water from the sink. I have short hair and no fancy style so it didn’t ruin my “look”. I also bring cold water to drink everywhere I go. If you sweat a lot, it’s easy to get dehydrated.

Hope this helps!

Amy

[amosmcd]

in reply to: My insurance only covers RAI #1177724

Hi, Brenda–

I, too, am terrified of radiation because my Mom and my Grandma and her first cousin all had breast cancer. My insurance covers any type of Graves’ treatment, so I’m fortunate that way.

I was worried enough about the risk of radiation that I saw a Breast Cancer Genetic Counselor. My mother had triple negative breast cancer, which is a very aggressive form, but my Grandma and cousin did not. My Mom did not get tested for BRCA 1 or 2 genes. I’m not sure why. She passed away a couple of years ago of esophageal cancer. The thought of radiation near my esophagus and breast is very scary. The genetic counselor said he himself avoids as much radiation as possible. I think one of the things to consider is our lifetime radiation exposure. I grew up having lots of dental x-rays, and I’ve had quite a few spine xrays.

Anyway, after looking at my family’s and my medical history, he gave my lifetime breast cancer risk at ~18%, which is a little over double the average woman’s risk, but still less than 20%. And not high enough to have insurance pay for the BRCA testing. He doubts I carry it. Without insurance, it’s $4000 out of pocket.

Anyway, I totally understand not wanting to have radiation, and I think if you get your breast cancer risk assessed, it would not only give you good information, it might be helpful in convincing your insurance company to cover surgery. I wish you the best trying to get it!

Amy

[amosmcd]

in reply to: Saw thyroid surgeon yesterday #1177373

Thanks, Shirley and Adenure, I appreciate your perspectives. They are very helpful.

I think some of my ambivalence and anxiety is coming from depression. It’s been coming on gradually. Usually this is the time of year when I tend to feel a natural lift in spirits after winter and can get outside more and garden. Not this year. I’m thinking that it could be tied to my friend’s passing. He went into the hospital on April 4th last year unexpectedly and passed away April 22nd. We had been best friends for 12 years. And I lost my Mom just a little over a year before he died. My closest girlfriend lives in California, and I don’t have a circle of friends here. It’s been a very lonely year.

So I think that is clouding my decision-making ability. I would have been talking it over with my friend, who was my sounding board, and I was his. Such a loss, all of him.

I do see a counselor, so will talk it over with her this week. Being at work helps distract me, too.

Thanks for listening.

Amy

[amosmcd]

in reply to: Saw thyroid surgeon yesterday #1177369

Hi, smtucker!

What were your symptoms like before you had surgery? Were they well-controlled before surgery?

Thanks to everyone who replied to my previous post!

I feel like I’m stable right now on PTU, but I know it’s just a matter of time before I go hyper again now that my endo has cut the PTU dose in half. I feel like I want to have surgery and get it over with sooner than later, so I can go camping in California in late June and hopefully be pretty much recovered from the surgery. I know I can’t totally count on my levels being normalized on levothyroxine by then, but hopefully the worst will be over.

I got more questions answered that I forgot to ask the surgeon. Her staff is really good about returning phone calls. My biggest concern is that my symptoms are pretty good right now, mostly just needing a lot of sleep each night, and would I be trading that for the potential complications of surgery. I just don’t think being on PTU long-term is safe. I think I’ll have to call the endo to answer those questions for me.

I wish I’d started out with a better endo and been referred to a surgeon a lot earlier. I felt so horrible on Methimazole, I would have had surgery in a heartbeat.

So just have to sit here for a few more days worrying, which I’m very good at!

Amy

[Author]

Posts