[RhondaG4]

in reply to: Need info NOT related to Graves’ #1069795

Mamabear,
From what I understand the antibodies for Graves…even if it was years ago, are always with us. I know when they did my test from Mayo in Minn, they consider anything over 16 positive for GD. Mine was only 19. She should ask her doc if he will do the GD antibodies test. I could be wrong about this, maybe Ski might have a better answer for you.

Also, doctorslounge.com is a really good site. You can ask questions and medical professionals answer them. They have all kinds of catagories. Hope this helps. Rhonda

[RhondaG4]

in reply to: Really SHOCKED!!! #1069881

Cathy,
Thanks for the response. Yep I am still considering finding another Endo. I’m not sure if I told you that this Endo has referred me to a rhumatologist…excuse my spelling…for other autoimmune stuff. I’m not sure if she would be educated to be able to follow up on the GD??? I am on disability and ofcourse comes along with that…if there isen’t a good reason for me to go to a Endo..like my Endo telling my State insurance that I don’t need an Endo anymore…I may run into problems there. Oh..you asked where in Wyoming…Casper. Thanks for the advice. I need all of it I can get. Hugs Rhonda

[RhondaG4]

in reply to: Thinking about moving into a bedroom by myself. #1069849

Hi,
I have a partial answer for you. I was on steroids for headaches for a while. That is probably….the prednisone….part of the biggest problem for you. But at the same time, if you need them, then you need them. I too still have sleeping problems, and I have an 8 year old that likes to be in bed, or at least in the room with mommy. And I too found it easier most of the time. I also have a 2 year old still in her crib in my room. She was a preemie and has had some medical problems. The best advice I can give you is rest when you can, and sleep when you can. If you have someone…friend or relative that can come over during the day so you can get an uninterupted nap, that may help also. Let’s face it, if your gonna be up at night anyway, at least you’ve gotten some sleep. Hope this helps. Rhonda

[RhondaG4]

in reply to: Really SHOCKED!!! #1069879

Well I think the thing that shocked me the most is that he…the ENDO..is moving out of state to practice elsewhere. So unless he has been asked by the hospital to say this, it doesn’t make sense to me. We have 2 Endo’s left in Wyoming…both are about a 4 hour drive one way. The really funny part to me is…my labs were normal right before I had the RAI..and they are normal now. My heart rate is still really high, so I would like to know what makes him think the RAI worked? He told the resident that was following him around today that I was one of the rare ones that enough of my thyroid had survived to keep my levels normal. Well okie dokie. Guess as long as my levels stay normal, as you said with budget cuts and such, I’m guessing nobody will do an uptake test to check to see if the RAI actually worked or not, and it’s only been since April that I had it done, and I’ve heard alot of people say it can take up to 6 months for the thyroid to die off.

I’m thinking maybe I should find a book for my PA that explains the stuff that can go on after the RAI…the TED and Myoexdema…I’d like to find one that has the rare side effects of Graves in it also, as my body seems to not be what a "normal" persons is. The brain bleed after having my 2 year old and stroke from that, cervical dysplasia, Osteopenia, Graves..and God only knows what’s next. I’d gladly give my right arm if someone could guarentee me health for the rest of my life. So sick of Dr.s and tests!!!!!!!!

[RhondaG4]

in reply to: Just found out today I have graves disease #1070013

Welcome skinny….I don’t know that I can be of much help to you, as I’m pretty new to this myself. I’m sure Ski will be able to answer your questions as best she can. She really knows her stuff when it comes to GD. Just wanted to say hi and you’ve found a really great site with people who understand what your going thru. Rhonda

[RhondaG4]

in reply to: So nervous – how will I cope? #1070070

hyperm,
You said before that you have been present for an ortho surgery? I was wondering….you must be a nurse…is there a way you could speak with the Dr that is going to do your surgery and maybe sit in on a thyroid removal? Maybe that might help calm your fears?

Your in my prayers, Hugs Rhonda

[RhondaG4]

in reply to: Joint Pain??? #1074572

Wow….Joint pain. Didn’t know that was associated with GD, but I’m not surprised. I know that the Osteopenia I have can be associated. I suppose having weak bones could also make your joints hurt. I know my Endo told me that the muscle pain I was having, and then a muscle in my shoulder decided it wanted to seperate, was probably due to my Graves. All of this while I was/ still am hyper? My labs show my levels are within normal range, and we are waiting for me to go hypo. Like Mamabear was saying, there are other auto immune disorders, and from what I understand once you have one, chances go up from there that you could have another. Bad part is that my Endo is leaving town, and the PA that I go to thinks that now that I’ve had the RAI that everything with my GD is all better. Can anyone recommend a book I can get her? At least my Endo sent me to another doc before he leaves town, and she is the one looking into other possibilites.

[RhondaG4]

in reply to: Need more help and advise please!! #1070186

Lauren,
I can relate to what you are saying. I have PTSD even before my GD Dx. Which of course didn’t help much in getting my dx, and I suffer from Anxiety beforehand also from my stroke, so I can relate somewhat. They were contributing my high heart rate and other symtoms to left over effects from my stroke and to my anxiety. I haven’t gone thru this as long as you have, but can understand your frustration. Just getting the Dx for me was a God send. It gave me some hope that well at least they have found something they can treat, it isn’t all in my mind, and even if it takes a while, at least there is something they can do about it. I found your words about feeling "damaged" interesting. Somehow it rang true for me when I read it.

You probably have a phych doc already that is helping you deal with anxiety and OCD/Depression. I was told recently that they have some meds that work really well with PTSD.

I also wanted to mention maybe getting your Endo to run a "female" hormone panal? Or going in to see a GYN that could run it? Yes in fact you have the GD, but maybe your other hormone levels are off as well. I’m no doctor by any means. But this is your body and your life, if you think something else could be at play making you feel ill, then don’t stop looking for a reason. If I would have given up and just accepted the idea of my high heart rate due to my stroke and that is why I was having headaches also, they wouldn’t have found the GD with me, or at least not when they did. It could have continued with me until the GD did serious damage.

I hope this helps you some. Feel free to PM me anytime. Your in my prayers. Hugs Rhonda

[RhondaG4]

in reply to: family member newly diagnosed #1070230

Hi..well is he in denial about the GD or about his reactions to the emotions? Men don’t like to think of themselves as out of control. I remember raging on the inside, trying not to let it out on the outside, thinking all the while how stupid it was at what I was mad at, and trying not to let it out on my family, but knowing I was snappy with them anyways.

Maybe….just maybe you could try a tape recorder. When you see the warning signs hit the play and record button. He may not even realize he is raging when he is doing it. Then at a calmer time, maybe play it back to him so that he can hear himself before you talk about it, and talk about a safe word. More for him to be able to sort of see he is doing it, or at least see that he is scaring your son and why your gonna go to the park for a while..or whatever excuse you can use to get out of the house without making it be "daddies fault" we are having to leave the house for a while.

Hope that helps some. Your in my prayers. Rhonda

[RhondaG4]

in reply to: Just wanted to celebrate with you….my friends! #1070248

I’m so happy for you. It is awesome when we can do some of the little things that we miss so much, even if we have to force ourselves to do them. It does give us an accomplishment, no matter how small we used to think it was, and it is a huge thing for us now, but we did it!!!!!!! Has a tendency to feel like there really is hope for the future, and it is good that you are looking forward to what is ahead….cause pretty soon hopefully those bad days will be just foggy memories and you’ll have your life back again. Congrats sweets!!!!!!!!!! Hugs and prayers Rhonda

[RhondaG4]

in reply to: 6years of symptoms finally diagnosed #1070374

inor,
a question for you…did your endo actually test you for the Graves’ antibodies? Or is she making her Dx based on your levels of your TSH T3 and T4? Just curious?

[RhondaG4]

in reply to: More good news to report-exercise #1070382

Congrats you all…..I’m on your heels as soon as I get the ok!!!! Take a couple extra steps for us too ok? Thanks and keep up the good work and for letting the rest of us know there will be light at the end of the tunnel and it won’t be a train!!!! Hugs Rhonda

[RhondaG4]

in reply to: Has anyone experienced….. #1070422

Hang in there….it is worth it getting treatment. I’m having some shakiness of arms and legs that I haden’t had before treatment, so I think my body is just trying to adjust. I’ve heard from some on here it can take up to 6 months for our bodies to adjust. I know it is very hard when you want to feel better now, but we are closer to feeling better then we were 6 months ago, Hugs Rhonda

[RhondaG4]

in reply to: TED- and eye pain #1070564

Haven’t had that before, but when I was little my mom used to use a potatoe for an eye sty. Don’t really know how safe this is, but worked like a charm. Hugs Rhonda

[RhondaG4]

in reply to: New to Graves, curious about all this #1070508

Acgar,
I really hope you are seeing an Endo doc and not just a family MD???? That would be my first place to start if that is the case. Not alot of MD know how to treat Graves. That is why they have Endo’s. That is there specialty. If you are seeing an Endo…sounds like maybe you need to find a new one?

I hope things get better for you soon in the near future. Educate yourself as much as possiable. Sometimes the docs would rather we not and let them just treat us. Stand up for yourself and don’t let a doctor choose what they want to do to you. If they suggest something, ask them why they think that is the best option for you. That is where educating yourself comes in handy…..as to your treatment options. Maybe even print out the treatment options so you can refer back to them in the office if you need to. And if your comfortable, take a spouse or a friend with you, or even a pocket tape recorder to refer back to. Graves is famous for messing with our memories, as I’m sure you’ve already noticed.

Mostly, Welcome. This is a great site with awesome people who understand. They seem like a second family to me. Hope this helps. Hugs Rhonda

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