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in reply to: My lack of understanding myself #1070943

I have to let you know that my two teenagers were very able to handle this information and because their father supported the family changes that had to happen they were able to cope. Having this disease means the family dynamics change for everyone not just the person who is ill. My teenagers handled things differently than an adult or a toddler, as they should have. I was never expecting that they not be able to live their own lives and focus totally on me. Empathy is modeled best in a two way exchange in my family. Of course my family had to step up and take on more during certain times. I wouldn’t have been able to get through 2 years of this without help, understanding and time to start healing. I hope that my children will take away the lesson that all people need help at some times in their lives and that they shouldn’t be afraid or feel selfish to ask for help.

Maybe your doctor can help you out by actually writing down a prescription for you that involves you resting, etc. so that you can start to gain back your strength and energy as the medication starts to work. My husband attended several of my appointments with me at the beginning so that he could ask the questions that he needed. That way the information wasn’t second hand from me.

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in reply to: My lack of understanding myself #1070936

Julie,
You might need to check with the medication insert from the pharmacy to see how prevalent headaches are as a side effect of your medication. You can always call the pharmacist if you can’t find the printed insert. I was on a beta blocker and it made me feel awful. I went off it as soon as I could. I did taper down when I did it. If you didn’t do that you might be feeling effects from going off the beta blocker. Also for me it’s the time of year that my allergies and the summer thunderstorm weather make my head hurt a few times a week. I use a nasal irrigator to keep my sinuses clear.

I haven’t started any replacement hormone yet. I know from looking at the prices on-line that it isn’t that expensive. My co-pay for the brand named levoxithol? is $10 a month. It might be even cheaper if I don’t use insurance. My mom takes synthroid and she doesn’t use her insurance because the drug is cheaper than her co-pay. She also shops around by phone for the cheapest price on all her drugs and her local pharmacy matches the prices. The Wal Mart commercials seem to imply that generic hormone replacement would be in the $4/month category. You can check their list online I think.

I too had to pare down my activities. I built in a rest for myself each day of an hour or more of just sitting or sleeping on the couch. Overdoing it made me have a few bad days in a row to recover. Remember that your Graves makes everything work harder so doing too much on top of that is really exhausting sometimes.

Hope that you feel better in a few days.

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in reply to: My lack of understanding myself #1070933

Julie,
Have you started on anti-thyroid medication yet? If so as your TSH levels change you should start to feel better. It is a hard disease to deal with since you don’t always look sick. I’ve had it for two years now and just had radioactive iodine. Your choice on how to deal with your disease will most likely be a process of education and reflection. My dad has it but never really had any symptoms that bothered him. Everyone is so different even with the same clinical diagnosis. Talk to your doctor about checking all your other levels for things like vitamin D etc.. A lot of Grave’s disease patients don’t absorb enough VIt D. When I started taking more I felt better. I make sure that I get enough water each day, being a little dehyrdrated usually makes me somewhat sluggish. Everyone knows they should eat right but it’s hard when are so ill. Eat what you can tolerate and try to notice what makes you feel better or worse. Sleep is hard when you might not be getting good sleep. I feel better when I stick to going to bed and getting up about the same time every day even if my sleep isn’t ideal it keeps me on track. I still do take short naps on my couch some days though. Hope that you find the bulletin board to be a help.

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in reply to: Weight gain during Graves disease #1070979

Hi,
I had RAI a few weeks ago. Over the last two years my weight went up and down during different times. I have put on five pounds in just a few weeks but hope that is water weight from the diarrhea finally stopping. I know that all my hormones are in a healing phase not just my thyroid. There is lots of information about weight gain and loss for thyroid patients at the all about thyroid web site. Sounds like everyone is different. I want to say that I will be happy just to feel better but I know it will be hard if my clothes aren’t fitting again.

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in reply to: radioactive iodine treatment #1070959

Hi,
I am two and half weeks out from my RAI. I did have a sore throat and a swollen neck. It wasn’t so bad that I couldn’t eat or swallow. Dr. had warned me to get something to suck on, candy etc. and gum and to keep drinking a lot during those first few days so the radioactivity wouldn’t settle in my salivary glands. I didn’t have too bad of a time the first few days but had a bad patch during the middles of the next two weeks. Seemed like all the symptoms that I have had during the past two years flared up as the radioactivity was working. Be prepared for that if she has been sick for a while. Lots of attention and plumping of pillows etc. will be much appreciated if that is what your daughter likes when she isn’t feeling well. Hopefully it will go very well and she won’t have any trouble. I do feel a lot better in the past few days than I did in the past two weeks. Glad that I had the RAI.

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in reply to: New to this website #1071158

Yes, I have experienced bone pain over the last two years at various times. Especially when I was first taking antithyroid medication to get my levels down. The pain starting coming back at times when I was off the medication hoping to be in remission. I have just recently had RAI- 11 days ago- and the pain is coming back a little. I assume this is from my thyroid dying and the extra hormone being released. When I have had great bone or muscle or joint pain it seemed to come with the inability to maintain my temperature. I have had very cold days with chills etc. that seemed to make the pain worse. It doesn’t really matter what the temperature is outside either. I wrap up in a down blanket and keep a scarf around my neck. I use a rice bag that my sister in-law gave me years ago. You can heat it up in the microwave and it gives you moist heat. You can also put it in the freezer if cold suits your pain relief better. If you don’ t have one you can make one from an old thick sock and some slow cooking rice. This is the cheap kind you get in a big bag at the bottom of the grocery shelves. Make sure you use a towel with it at first so you don’t burn your skin. It can get very hot. I usually do just 45-50 seconds in my microwave but yours might be of a different power so start with a small time and go up from there.

Hope that your pain subsides soon.

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in reply to: After RAI #1071204

Thank you both for the reply. I will watch my weight and am taking my BP and pulse often during the day to make sure I’m not out of bounds on that. My endo wanted to see me a month out. I’ll call sooner if I feel I should. It’s hard to know what is normal anymore at this point.

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