[RhondaG4]

in reply to: You have Graves. Ok. I get it. #1071880

Lisa,
I had to stop taking the methimazole at my dr advice because of a sore throat. Not because my WBC were down, but because they were up too high..the steroid meds I’m on and Methimazole were competeing with one another.

I too was Vitamin D low..so my PA put me on some to help with that..don’t know if that was causing the muscle cramps or not, but it did seems to help my bones not hurt as much. I was also low on Folic Acid, so if your in any way thinking of children, might want to have that checked as well. I don’t know if that was low due to Graves, but seeing as how Graves does affect our metabolism and probably the way we use vitamins in our bodies, it wouldn’t surprise me. They could tell me at this point my heart was green, and I’d probably say oh yeah…is it a pretty shade of green or a yucky one*LOL*.

B-Complex is supposed to help with hair and most have the biotin in them. I read on a site designed by doctors that Graves people should be on L-Carnitine…something to do with how our muscles use the amino acids and this vitamin can help with that. That site was thyroidmanager.org. Great source of info from docs all over the world. They also have a search engine there as well.

I don’t like the blood pressure meds much myself, as I too also have a high resting heart rate, but I had a stroke almost 2 years ago…so given the options…I take them and grumble.

I’m scheduled for RAI on April 29, and hoping that I don’t loose anymore hair afterward or gain anymore weight. One thing you may want to have done is a bone scan, especially since you were Vita D low for a bit. Glad to hear your out walking, but be careful if you were low on your vita d…as calcium and vita d affect the bones so much. They have me walking in the pool 3 times a week, well I will start again after RAI..cause it is easier on your bones, and under the eye of a Physical Therapist, they can help you work your muscles and joints in the pool as well.

Also, did you get a baseline with a good eye doc? Hope this helps. Rhonda

[RhondaG4]

in reply to: My intro…… #1071697

Hi Marie,
Welcome to our family, sorry ya have to be here, but glad you came none the less!!!! Tons of support here, and lots of love and understanding….for both you and hubby!!!! Glad you joined us. Rhonda

[RhondaG4]

in reply to: Reminding everyone to…. #1071691

Thanks Mamabear for the reminders…they are always helpful. We can’t help take care of our loved ones, if we arn’t taking care of ourselves. When I got my Dx, one of the first things I did was go see an eye specialist, just so I could get a baseline. That way if I start to develop anything, they would have something to go by. I also have nagged my PA to the point of being a pain in the butt about my vitamin/mineral levels…since they can be so off in Graves patients, and all the other meds I take. She was contributing most of my symtoms to my stroke…when in reality….I had very low vita d levels…osteopenia…and Graves, so other medical problems could be thought of to a doc or PA as because of those things, and masking other things. My Graves was actually found by accident. Listen to your own bodies, and be your own advocates. Generally docs don’t look for zebras, so if you think you have one, point out the stripes!!!!!!!

[RhondaG4]

in reply to: Ponder this….. #1071793

Just thought of another one….Bob Seger….Feel like a number!!!!!!!!!!!!!

[RhondaG4]

in reply to: Feel lucky despite having Graves #1071958

Ski,
That safe word idea is a really good one. My 21 year old daughter has bi polar….and our safe word when things are starting to get out of hand for her is bi polar…..mine is now…Graves. Thank goodness I have an understanding family!!

[RhondaG4]

in reply to: May 12 2009, Im so scared :( #1071745

Hopeful,
I go in next Wed for my RAI..and I too am scared. I lost one baby about 7 years ago..she was born too early. I understand what your going thru. I don’t know if it was because of Graves, but all of my children have been early, so I could make that assumption.
And you’ve been thru so much, your in my prayers. I too have been thru more then my fair share of health problems, and they seem to just keep on coming along lately. But I have to believe that I am still here for a greater reason and purpose.
My uptake was 45% and I don’t know yet what dose the doc has planned for me yet. My levels right now are somewhat normal compared to most people…or the other meds I’m on are fooling the blood levels, I’m not sure which.

I’ll keep you posted as to how I feel after my dose. I had a brain bleed stroke after my last little one was born almost 2 years ago. I also have Osteopenia too, and they are testing me for another auto immune disorder now, just waiting for the blood work to get back. The steroids I take have my white cells really high and they can account for that…but endo is sending me to an oncologist anyway because of the red cells being up.

I have to believe that everything happens for a reason and a purpose. Hang in there, and if you want to PM me or IM me…just send a note if you need someone…anytime…most of the time I have insomnia from the steroids, so I am up at all hours of the day and night. Take care sweetie. Hope this helps. Rhonda

P.S…..a song that might help you…..might be able to find it on you tube…Praise you in this storm…really good song.

[RhondaG4]

in reply to: Dexamethasone withdrawal #1073510

I’m taking the same med for headaches. In the beginning it was only once a month at the ER, but now it is like 3 times a week. I have lots of joint pains and bone pains and also have Osteopenia and Graves too. I’ve been walking in the pool 3 times a week, and that seems like after the inital bone, joint and muscle pain…like it was getting better a little, but am about to do RAI and have been in alot of pain…both head and bones and joints and muscles.

I now have the wonderful moon face and have gained weight from it despite being hyperthyroid. I have mixed emotions about the med, because for a headache it seems like it literally saves my life, I’m not sure what I would do without it at the moment for the headaches. We are hoping that after the RAI and thyroid is under control that we can ween me off of it and that should help. I do know that the slower they ween you, the easier it is to go off without being in such pain. I also know that it affects my blood pressure and pulse rate. I have to take more of my blood pressure meds when I have to take my Decadron. Also Decadron will affect your white cell counts….as in make them higher.

Ski is very correct about the levels of T4 insted of TSH. Also….according to thyroidmanager.org….dex is one of the drugs that they use to help with Graves…go figure…I didn’t know that one. I know I was also told to take calcium and potassium…excuse the spelling…because dex can affect those also. Also according to that sight, Graves people should also be taking L-Carnitine…a vitamin…cause it has something to do with our muscles being able to use the food we eat. I’m no expert by any means. What I am learning is…listen to my body, ask the docs and if you know your body feels better taking something or not taking something and the doc disagrees…get a second opinion. Hope that helps.

[RhondaG4]

in reply to: Ponder this….. #1071789

Good ideas….I love the outdoors, but when I am stuck inside I like music as it is or can be therapy to me….I just was running a song thru my head and had to share a few of them with ya’ll….maybe just my twisted way of dealing with things but here they are…

1. Radioactive…by the Firm…an 80’s band

2. Shakin’…by Eddie Money

3. Fight the good fight….Triumph

Anyone got any others? Maybe we could help Marpo put them on a CD for her site????

[RhondaG4]

in reply to: Well stocked pantry/feeding the freezer #1071766

Gosh I hope to get that organized one day….that would really help out me and darling hubby right now….seems like we are kinda just taking it one day at a time…but love the idea!!! Maybe after RAI I will feel well enough to do that. Thanks for the list and do you know if after you have RAI that you should stay away from Iodine foods for life?

[RhondaG4]

in reply to: Gonna sound superficial…hairdye question??? #1071842

Thanks guys for the advice. I’m gonna sit down tonight and let him know there have been a few changes in my appearance, but I’ll be there none the less. I was Dx after he left for boot, and haven’t told him the whole story only that they were doing test to find out if my thyroid was connected to my headaches, as I didn’t want him worrying about me while he was in the process of one of the hardest and most rewarding times of his life. Let’s face it, if he has to go to the sandbox, I didn’t want him distracted from training worrying about me. Health food store, here I come.

[RhondaG4]

in reply to: Feel lucky despite having Graves #1071952

Shirl,
Thanks for sharing your story. Sometimes it seems like when your delt one thing after another…it’s like ok..someone stop this merry go round…I want off!!! But somehow we just keep going, one day and sometimes…just one hour at a time…and sometimes it seems like for me…just the next 5 minutes…then 5 more….then just keep going. Your an inspiration to all of us, and I’m glad we can be for you as well. This board is amazing, but the people behind it and in it are even more so. I can’t imagine how people got thru this 20 years ago all by themselves, it must have been really hard on them. Anyway, thanks again for sharing!!! ” title=”Very Happy” />

[RhondaG4]

in reply to: Lack of Support #1071886

RNFQueen,
The support that you will get here is awesome. I have an EXTREMELY supportive husband, whom is a cancer survivor amongst other things. And there are still times when I wonder, and know that really only someone with Graves can truely understand what your body and mind go thru. Kinda like a man having a baby…they just aren’t gonna get the physical part of it anyway *LOL*.

We are survivors, those of us just recently diagnosed, and those on here whom have delt with this for years and have "normal" levels. Mostly I feel like just surviving until I got my Dx was a triump in and of it’s self. I also look at the Serenity Prayer that they use in AA as a source of strength, even tho I’m not a drinker. Lord Grant me…..cause it’s not my fault I have Graves, and there are some things I just won’t be able to change. And being able to sit down with pen and paper and make a list of the things I can makes a difference. I can do these things…and then the ones I can’t do anything about….if it is housework or a real big issue, I just have to say "oh well, it’s all Gravey!" Just my own little play on words.

We are here for you. You are not alone by any means. Hope this helps. Take care, Rhonda

[RhondaG4]

in reply to: having a rubbish day need a wee bit support. #1072025

If my MIL were able to come and help….and had come from such a long way to help, I think I would start making lists. I would just say ok mom, since your here to help, I’ve made a list of things that I like to have done on a …daily…every two days…whatever basis. Here is the list. Please feel free to pick the ones that you’d feel comfortable doing, and hubby and I will try to get to the rest of them when we can. I really appriciate you coming to help us and I’m sure we will all be able to enjoy your visit more when we have some of the work out of the way. Love ya lots…..or something like that. Hope that helps.

[RhondaG4]

in reply to: RAI #1072244

Bigger picture….bigger issue…. Dr’s shouldn’t pressure their patients into a choice!!!! If your feeling uncomfortable….wait…talk to your doc….get a second opion…do more research on your own!!! Hope this helps. Rhonda

[RhondaG4]

in reply to: how bad is bad- eyes? #1072155

Lakeview,
I can’t answer your questions about the eyes thing, altho I can tell you that I went to the eye doc to get an appt to get a baseline myself, so that if I started having eye problems I could have a baseline to go off of. I do get puffy eyes, but I’m on steroids for my headaches, so I get puffy face (moon face) and have gained weight from the steroids as well.

Yes I can understand about the identity changes. I hate to think of myself as superficial, but I suppose to some degree I am and didn’t realize it until my Dx. I’m also loosing my hair too. I’m rolling with the punches as best I can, and learning as much as I can, partly so I can get an idea of what to expect…if it gets really bad. And partly because it is helping me to understand that I have Graves, to accept it and to be able to deal with it…and to a certain degree to be able to "fight the good fight" so to speak. Which includes taking care of myself as best as I can, resting when I need to…ect, ect. A very wise woman…recently we became friends…has said…"I have Graves, but it doesn’t have me!" Sometimes when my eyes are puffy, just sitting with a cool rag or I have a gel pack of sorts, and just letting it rest lightly on my eyes makes them feel better. Maybe you could do this at work on your break time? I also use sunglasses…always. Maybe you could turn down the light on your monitor at work and see if that helps any. Hope this helps. Hang in there. I was DX in December, I know about how fast everything seems to be happening. This site is an awesome source of support. Take care, Rhonda

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