[lilsispatrick]

in reply to: Graves’ Opalmopathy & Hyper w/o Thyroid #1182775

Thank you Kimberly. I had a complete hysterectomy in 1995 and last month an ultrasound to check for any tissues of thyroid, there wasn’t anything! I thought after the radiation treatments that the eye problems even over the past 4 years would go away. Speaking with the new opthomologist yesterday she repeatedly asked about the floaters and headaches as if I were lying! Why would someone want to lie about this disease?! She said everything looked great, no damage to optic nerves, retina and no glaucoma…thank goodness!
Just looking for answers.

[lilsispatrick]

in reply to: Has anyone ever done Reclast IV? #1061992

I’m sorry if I have caused any arguemnets here. I understand all of your concerns & they’re all well appreciated but, this group is here to help all of us understand from one another what we are going through not for causing disputes with those who help us and share such personal information. So please forgive me for causing an arguement! About how I’m feeling one week after the Reclast..well I’m not in the extreme pain I was in a few days ago..thank goodness but, I still have a lot of pain especially in my thigh area, low back, wrists & continued headache. I did contact the dr again and I was told I could go to urgent care if I needed but this should go away. I feel that as long as I’m able to get around enough on my own I can hold off on going. These days with my medical provider, the only way to speak with a dr is through email..weird but that’s how it is. So when I emailed my dr about the Fosomax making me ill, he suggested the Reclast & only told me I would need to take vitamin D & calcium indeffinately & then told me he would order it & have Oncology set the appt. I should have asked more about it but, at the same time I’m suppose to rely on my dr. That’s the first time I’ve never been explained anything! I usually always ask lots of questions & make sure I have a family member at each visit but this was done through email! I had the biopsy on right shin for the myxedema & still have a bump on the left side which I’m suppose to use topical steroids for but haven’t done so yet I never know how having this GD could effect your entire life! I took the Medrol that long because of the eye swelling too, up until I had the radiation done. Yes a long time, a lot of weight gain & a lot of pain! Thank you all for your answers & concerns in this. It really means a lot to have another voice out there. I will keep you up to date on the effects of the Reclast & when I’m scheduled for my next DEXA! Thanks again!

[lilsispatrick]

in reply to: Has anyone ever done Reclast IV? #1061984

I do have osteopenia and was put on Fosomax which made me feel sick so that’s why my endo ordered the Reclast. It was the 15 minutes but my dr told me every 2 years? If I would have known beforehand what the side effects would be, no I wouldn’t have done this! I’m on day 5 of not being able to walk because of the pain in my legs. The headache has not gone away. I was on medrol for over a year, had radiation for opalmopathy in my eyes, right side thyroidectomy and pretibial myxodema. My shins were already in such pain, I still have tremors but my levels are normal along with the heart palpitations. Now the added effects of having the Reclast done is just making me miserable. The dr said this should go away in a few days but, it hasn’t even subsided at all, just seems worse! I’ve seen a lot of posts on other websites with people who have had the same side effects and some lasting more than a year! Wonder how many dr’s have actually had this done themselves to see what it feels like. Just frustrated & in pain. I feel like I keep moving backwards instead of forward with all of this. Thanks for lending an ear!

[lilsispatrick]

in reply to: Changes #1062253

I would have to agree with you, this is a roller coaster ride for sure! I have been dealing with all of this for 4 years now and I’m still so confused! The only meds I’m on now are propranolol and hydrocortisone, My dr has me do labs every 6 weeks then emails me to let me know if I need more or less due to level changes, Its so crazy sometimes. I had partial TT in 2007, felt fine for about a year then everything came back! Not expected at all. I’ve had radiation to my eyes, PM w/biopsy, so much weakness, lots of weight gain (from mostly the steroids) and some how my endo says things will be ok? I’m not going to let this take the best of me! I’ve recently started my own healthy diet plan with light stationary bike riding each day which has lost me 5lbs since last Wednesday, so I guess its working. I need to regain back some of what I’ve lost for myself & my family. Who would ever think things could get so out of control? Good luck to you!

[lilsispatrick]

in reply to: Questions #1074114

I had my Opthamologist appointment yesterday and he said everything was fine except for the pressure behind my eyes. He said that the normal pressure should be 20 and mine was high at 28 and he stated that although cosmetically it doesn’t look good I’m not dying and since the pressure was high he wants to watch it closley so I will see him again in 4 months? I also did more lab work yesterday to check the TSH levels so I will probably have the results in a few days. In the meantime I guess I will just have to wait all of this out, I feel like I’m not getting anywhere…frustrated Thanks for your help.

[lilsispatrick]

in reply to: Questions #1074112

The doctor removed the right side of the thyroid because I was hyperthyroid. After the surgery they told me to wean myself off of the methimizole? I was doing fine but would notice little signs here and there like a little tremor and leg shaking, but I guess because it wasn’t as bad as before the surgery I let it go. Then like I said I noticed the eye swelling a few months ago and it continued to worsen so I seen my regular doctor who referred me to the opthomologist who is the one that said it looked like GD he then sent me back to my endo who ran my levels and said they were within range and suggested the propranolol because of the heart racing and put me on steroids which did not work, he never mentioned other meds. I will see the opthomologist like I said on Feb 2.

[lilsispatrick]

in reply to: Questions #1074110

Thank you. I have an appointment on Feb 2 w/the opthomologist for my eyes for a full vision screening. I had the right side of my thyroid removed in Nov 2007 and they did not know I had Grave’s Disease then, so all of this is new to me with some of the other symptoms returning although I don’t have the tremors like before. My eyes at this point are the worst and I have a lot of muscle weakness. I don’t know if I should be on other meds beside’s the propranolol? I’m not one to take medication if I don’t need to! This is a wonderful thing to be able to get information from others going through the same thing. Keep up what you are doing!

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