[teacherhelper]

in reply to: RAI set for Sept. 30 #1063874

I already picked up the list of do’s and don’t’s related to the RAI. I have some questions to ask when I get there. I’ve learned to write everything down when I get an answer. No one is going with me. My husband is up north until the end of October. I think I’ll be OK. Maybe I’ll call in the morning to see if it’s advisable to bring someone along.

I think the doctor took me off of milk and dairy because of the products that cows eat. They may be grown in soil high in iodine. I’m not sure, but I’m buying a gallon of milk tomorrow morning to be certain I have some on hand. Just knowing the end of this diet is in sight is a thrill. However, I hope I can keep off the 22 pounds I’ve lost.

Thanks for all the good thoughts. It helps knowing you’re not alone on this journey. I would love to go to San Diego but can’t at this time. Maybe next year.

Joanie

[teacherhelper]

in reply to: Endo dropped me :( #1064564

My first endo was a total "jerk" and had no bedside manner whatsoever! I talked to Ellen at the Graves’ Disease organization. When I told her his name, she marked it in the list that they have to refer patients to if they call and need to know endos for one reason or another. He will NOT be recommended! He is just not the doctor one needs to see when one is experiencing all the things that go along with GDS. I would suggest calling and, if his name is on the national list, I would tell her to mark it as not a good doctor to recommend to new patients. He doesn’t have the demeanor people need in their doctor.

I now have a different endo who is very compassionate. I’m waiting to hear from him as to when I can have the RAI. I’m looking forward to the light at the end of the tunnel.

[teacherhelper]

in reply to: Hopefully end in sight! #1064327

Thank you for your replies. It’s a relief to know that we’ve finally decided on a course of action. I’ll try to get creative with the diet as I think about it more. It’s good to know this board is here for support, suggestions, venting, and anything else that might come our way.

I did see my eye doctor in Wisconsin. She said that everything I was doing was doing a great job! I use drops during the day and gel drops at night. I will call my endo this morning to check on the steroids and when they come into play in the treatment. He is a very kind doctor and I was lucky to get him after a bad, VERY BAD, experience with a partner of his!

On to have breakfast with a little creativity thrown in!

Joanie

[teacherhelper]

in reply to: New Here #1064590

Boy, can I sympathize with you! I’m also one of the few who has gained weight! I feel horrible but know everything has to get into the proper levels before I can start to work on getting the weight off. The added weight has made me feel so uncomfortable. I’m short, only 5′ 2", and don’t need any more than what I had at the start. i’ve added 20 pounds since being on PTU. My eating hasn’t changed!

Hope things go well with you! I see my endo again Aug. 16 and can’t wait!

Joanie

[teacherhelper]

in reply to: Overwhelmed #1064922

I was diagnosed Oct, 2009. My eye doctor has been a godsend for me. I use Optive eye drops and SootheXP eye drops during the day and Celluvisk gell drops at night. They are over-the-counter so can be used frequently. Thge drops during the day have helped the dry, gritty feelings I had and the gel drops at night help to keep my eyes lubricated for a longer time frame. She said whatever I was doing was working well and to keep it up. I have minor eye involvement and want to try to keep it that way. I know when drops are needed and these can be used every hour if necessary without damaging the eyes.

This board has been a huge help in getting helpful ideas, feedback and in talking with people who are experiencing the same things. Many don’t understand what’s wrong because we don’t "look" sick but our bodies are screaming!!! My thyroid is enlarged so don’t know what I’ll be able to do…RAI or surgery, but I do hope for one of those in the not too distant future.

Good luck to you!

Joanie

[teacherhelper]

in reply to: Post-surgery update #1065297

I’m happy to hear that things are really going well. I want to talk to my doctor about my two options. Having the surgery might be a better option for me, but time will tell. Hearing from someone who’s had good results makes decision making easier. At 65, I don’t have to worry about a scar and getting "my man" as I’ve had him for 43 years. LOL I just need to know the options, results and what might work best for me.

I’m now in Wisconsin and in a different time zone. I had to reset my cell phone alarms for an hour earlier. I took my pill last night and went right back to sleep. It’s not a problem.

My next order of business is looking into the possibility of attending the convention in San Diego. I can visit my grandson, son and daughter-in-law as they live in Mission Viejo! Can be good for more than one thing. Hopefully it works out and I’ll be able to meet a few of the facilitators!

Joanie

[teacherhelper]

in reply to: Post-surgery update #1065293

Just so everyone knows…I am OK with the 3 A.M. pill. I started the PTU after 6 weeks of nothing because of an allergic reaction to Methimazole. When the doctor prescribed the PTU, he stressed the every 8 hours for me. Not thinking when I took the first one is what put me on my schedule, but it’s OK as I have the three set times and I’m looking towards the end result. EGTBOK (Everything’s Going To Be OK!) If I get a lower dose when I go in July, I’ll be more careful in my planning! LOL I just know that things will get better once I get through the tunnel! God is on my side! Thank you all for your concern! This board is great!

Joanie

[teacherhelper]

in reply to: 6 MONTHS RAI AND STILL A ROLLER COASTER RIDE #1065340

My doctor gives me copies of my lab reports when I leave his office or they mail them to me if I don’t have to see him. You have the right to them. Ask for copies of all reports to be mailed to you. I even have a copy of my thyroid scan/uptake. He’s a very good endo in my opinion. Talk to your doctor to see if they can do that for you!

Joanie

[teacherhelper]

in reply to: Post-surgery update #1065291

This news is very encouraging. Glad things are improving steadily for you!

Kimberly, I don’t mind the 3 A.M. pill time as I can go back to sleep. I’m keeping with that schedule so that I take the PTU at different times than my blood pressure medication or other things so they all have their own chance to work. One month from today and I go to the doctor again. Hopefully the news will be positive…my levels are getting better. I never thought this disease had so many "issues" associated with it, but I’m learning a lot. I have a good group of friends at home and at church who are my support team. My faith keeps me going. It will get better. I just have to be patient longer! This board is a good place to vent where people understand. They don’t criticize!

Joanie

[teacherhelper]

in reply to: Post-surgery update #1065287

That’s good news for you and for me. I’m still trying to get my levels to the point where I can consider surgery or RAI. I go to the doctor in a month and am anxious to see what my lab results will be. This crappy feeling is hard to explain to people and frustrating to deal with. I’m so anxious to feel "normal" again. I know it will happen but the road to that point is so long and winding! The biggest trouble I think is with my mind/memory. If something isn’t written down I can’t comprehend it very well. Of course, some of that has to do with age! ” title=”Smile” /> LOL I’m on PTU three times a day so wake up at 3 A.M. to take a dose. I won’t miss that routine. And thank goodness for three alarms on my cell phone. That’s become my constant companion!

Thanks for posting so quickly. When I get to that point, it might make my decision easier.

Joanie

[teacherhelper]

in reply to: So mad I could SCREAM…. #1065825

It’s too bad you have to go through all of this. STRESS is not good for Graves and they are putting you through way more stress than any one person should have to go through. I hope you can get help, answers and whatever else you need. Hang in there. *hugs*

[teacherhelper]

in reply to: FEET #1066043

I know exactly what you’re talking about as I experience the same feeling in my feet, and it’s an almost all day feeling. My feet don’t like to be confined in shoes. I’m glad I’m in SW Florida so I can wear flip flops most of the time. My toes hurt a lot, also. I have talked to another person whose husband had thyroid issues and he had many feet problems too. I’m still waiting to get to where I can have RAI. Right now my levels are too high and my thyroid is enlarged so we can’t do anythig yet. I know it will all get better over time and have been trying to leave it all up to God. Patience is a thing we need as we battle this disease. Try to stay positive and know you’re not alone!

[teacherhelper]

in reply to: Graves’ Disease In Our Own Words is AWESOME! #1066140

Where do you get that book? I think I would like to get it. Maybe it would answer many questions and concerns.

[teacherhelper]

in reply to: Please help… #1066746

I can sympathyze! I saw an endo today because of a rash on my shins and an overall "draggy" feeling, much like when I was first diagnosed in Oct. ’09. I was originally put on 10mg Methimazole, twice a day, in Nov. then reduced to 10mg once a day the end of Dec. I’m so new to all of this. Yesterday I noticed the leg rash and sore feet like in the beginning so decided a call to the doctor was in order. I saw an endo associated with mine and was good to get another doctor’s perspective. Because of my blood work the last two times he recommends RAI. I’m not to take Methimazole for 4 weeks, get my blood work done and then see my regular endo mid-March. He’s going to let him know what he thinks. This is surely a trying disease…trying in that you never know what will work for you, trying in that you never know how you will feel from one day to the next, and trying in that the times you feel good aren’t very many! While I haven’t been diagnosed for a very long period of time, the endo today feels I’m one of those where the best treatment for me will be the RAI. I was feeling good for maybe a week or two, but I’m looking forward to getting back to my "energizer bunny" self. I know that resting will be of utmost importance, but just to feel good will be a blessing. It’s good to read other posts and know I’m not alone.

[teacherhelper]

in reply to: Confused #1066961

I just got my script for my lab work in 8 weeks. I told the nurse that I want to talk to the doctor after that results because I want to be in the know as far as my results. She said I’d have an appointment after they get the results back. I hope that’s true because that hasn’t happened yet. I’ll make sure it does happen as I need to start being in control. Thanks for the help!

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