[RhondaG4]

in reply to: Hi, am new here introducing myself #1071421

K,
Welcome…I’m glad you found us. The folks on this board are awesome. If some of us don’t know the answers…others do..or will try to find out for you or point you in the direction where you can find out yourself.

I understand totally about being tired of hearing yourself complain and thinking your family is tired of it too. And really unless your going thru it yourself, you really can’t understand. Even tho I "hopefully" don’t have the TED at the moment, I just had RAI and it is a concern of mine. That is part of what is so great about the folks on this site. Even if they haven’t gone thru exactly what you have, they still can understand all that you go thru and are willing to listen to us vent if nothing else.

Welcome to the family. Sorry it has to be such crappy circumstances that your a part of our family, but welcome non the less. You’ll find kindness and compassion here like none other, and info and support. Hope this helps. Your not alone anymore!!!! Hugs Rhonda

[RhondaG4]

in reply to: Orbital Decompression DONE! #1071430

Hi,
Got a couple of questions for you. When did your TED start and how? I just had RAI done and my eyes are red and irrateded in the mornings…no swelling yet. I had an eye specialist look at my eyes as soon as I got my GD Dx, but have also been on steroids for my headaches..post stroke 2 years ago. I was just wondering if anyone knows if there is a temporary thing maybe going on post RAI or if this is something I should jump on right away, and even if I do is there anything they can do to minimize it? Also, the steroids they have me on are a gluco kind….should I ask them to switch me to prednisone? Anyone know? Thanks Rhonda

[RhondaG4]

in reply to: Pretibial myxedema and lumps in my legs #1071477

Buttamamma, Go to http://www.thyroidmanager.org and do a search on the term. It comes up with about 9 entries.

[RhondaG4]

in reply to: Pretibial myxedema and lumps in my legs #1071476

That is the first time I’ve heard that term….but am having the PM myself. My PA put me on Lasix recently and I lost 5 pounds of water in 5 days. I can relate to the painful part. After the birth of my last child we all thought I had post eclampsia but now in hindsight I’m wondering.

I’ll look up the term and see if I can find out anything about it.

[RhondaG4]

in reply to: And so it begins… #1071554

Thanks Ski….what I was trying to say but wasen’t coming out right!!!!!

[RhondaG4]

in reply to: Newly Diagnosed #1071488

Writing it down does help alot….I write down all of the meds I take…every time I take them. I have a calander on my wall for all of my appts as well as my kids. Brain Fog. Loads of fun.

[RhondaG4]

in reply to: And so it begins… #1071549

Blessed,
Glad to hear from you. I had my RAI on Wed and somewhere on here I posted as to how I’ve been doing since then. Also…from what I understand you have less symtoms if you are what they call Euthyroid before having surgery or RAI. That basically means you aren’t hyper or hypo. A short course of ATD’s did this for me. I mean like 3 months worth. I was on Methamazole. My TSH was .08 when I went in…but keep in mind that your T3 and T4 will change before your TSH levels…TSH levels can take months to catch up to your T3 and T4. Keep in mind also that RAI "can" take up to 3 times to work all the way. And also like Kimberly said….it will take care of the hyperthyroid…but won’t get rid of the Graves Disease it’self.

Also keep in mind that you will need to give your body some time to recover from being hyper before working out as if you never had anything. Your body didnt become hyper again overnight, and it does take time to recover from a hyper state. As far as I can see….it wouldn’t hurt for you to be on a ATD while you are making your decision. That way if you decide to try for remission again..your already on your road…and if you decide for RAI….your on your road to having less complications afterwards. If you can "dump" your excess T4 over a longer time peroid if you decide for RAI, then you are less likely to go really hyper from a dumping of the hormones built up in your system. Of course then at some point most go hypo, but the hormones have to go somewhere. I hope I’m not giving you too much info at once. Keep us posted and if you have more questions…just ask away. http://www.thyroidmanager.org is a great site..don’t know if I shared that with you, but it has "Dr" talk and info on there, and a search engine that you can search the site with, and stuff from docs all over the world. Hope that helps. Rhonda

[RhondaG4]

in reply to: How can I be more supportive? #1074361

Wow…you have alot on your plate. I have heard of removal and then follow up with RAI afterwards…partly to avoid regrowth. I was looking into romoval as I had a stroke and heard that RAI wouldn’t be best treatment option for me.

As to your daughter…well I hear ya. I have a 21 year old who has bi polar and some other issues. I was just Dx with Graves myself in Dec. I have convinced daughter to get tested for Graves…as it could play a part in her disorders as well. Go with God. Like someone said earlier, try not to take it personally. I also have a almost 8 year old and an almost 2 year old, whom the 21 year old cares about very much. So far 21 year old is living on her own…kinda…but I put my foot down and told her that I couldn’t allow her non complience with her meds to affect her little sisters, and that has seemed to help her. She has been in the hospital 2 times in the last 3 years. Thankfully she came to me when she really needed me the most. The first time I took her to the ER. Sometimes….at least here in the USA, unless they are a harm to themselves or others and are over 18 there isen’t a whole lot that parents can do except tough love. It is hard to watch your children self destruct. If you have a good endo…if it comes up again at a future time, you might be able to get a court order into an in patient hospital if she is non complient..because her diseases can be life threatning if not treated, and the emotional aspect of Graves.

Your family is in my prayers. Keep us all posted, and we are all here when you need us. Hope this helped. Rhonda

[RhondaG4]

in reply to: And so it begins… #1071546

Hey Blessed…where did you go?????

[RhondaG4]

in reply to: Will it end? #1071592

I know I’ve posted once already…sad part is unless I go back to re read it I don’t remember it….I’m on 2..count them 2 anti anxiety meds…plus the Lopressor..a blood pressure med..that is supposed to help with that….of course my stroke didn’t help much with the anxiety, so I was pretty much just on one of the meds before my Dx.

And of course the steroids that I have to take for my headaches just compounds everything and makes the anxiety worse. But the best part..*LOL* is when my PA tells me to stop trying to be a super mom…and I inform HER I’ve never been a super mom…very involved in my kids life and for the most part a stay at home mom…but not a super mom. I know the difference between the dust that can wait and the kids that can’t. But I also know the difference between….oh my gosh I can’t decide which will be easier to make for dinner and do I even have the energy for that!!!!! And if I don’t do a load of wash they won’t have school clothes tomarrow…very nerve racking and a far cry from when my 21 and 19 year olds were little….now I have almost 8 and almost 2…Hope and Heaven…both of whom were early babies with medical needs so keeping a clean house isen’t just important…it can be life altering.

So I decided that if my kids know they are loved, that is my best goal for the day. Anything above and beyond that is just "GraveY" *LOL*. Sorry I couldn’t resist.

Update on my RAI…I had it on the 29th. My TSH F3 and F4 and antibodies are relatively in the normal range right now. I decided if I was gonna do it, now would be the time. I got really tired from it after about 24 hours. My mouth got really dry and hot, and my bp and pulse are all over the map, but that could be due to the steroids also. So using me as an example for typical RAI might not be the best idea. Plus my white cell count if off the charts from the steroids and my red cell counts are high and they are send me out to oncology to find out why. But…..today so far I feel ok…3 days out. No puking like I thought maybe..and I took a shower yesterday and didn’t loose anymore hair then I normally do. My eyes haven’t gone bulgy yet, altho I have the added benefit of already having steroids on board for my headaches. They are dry and itchy tho…but then again after my mouth feeling so dry I’m not real surprised. Honestly the hardest part has been staying away from the kids, besides a quick hug 2 times a day. Hubby has been a help, and yesterday just from being locked up in the house…my 21 year old stayed with the kids long enough for hubby and I to run to Pharmacy and I stayed in the van, just had to get out of the house and the walls were closing in.

I told my endo I wasen’t going to go thru RAI again, so let’s not just tickle it, I want it graveyard dead..sorry for the pun. I can take meds for the rest of my life, but if I can get the antibodies to die off somewhat from not having so much in my body to attack…so much the better as I can see at this moment in time.

Now I’ve had the ability to accept one day at a time, one hour or minute. This is not an easy thing to do, especially when those times are the anxiety ones. Plus, I have osteopenia, not sure if that is what causes the chronic pain in my body or not, but just hugging the kids or holding them sometimes hurts my body, and as much as that stinks…for the moment it is what it is and I just have to get thru it. Luckly, I found Marpo early on, and she has a coloring book for kids that describes "mommy has graves" and really helped me to deal with it also. As soon as I told my 7 year old I was gonna have to take the pill just like in the coloring book..she knew exactly what I was talking about. And it talks about why mommy is so tired and can’t play like she used to and has to take naps. Also talks about how mommy can loose her temper and that she doesn’t mean to…just a part of mommy being sick. Up to the point I found this…..I had no resouce out there to help me explain it to her….believe me I looked.

Ok sorry….apparently "rambling on" is a post RAI thing also..*LOL*. Keep your head up, and we are all here for each other. I just love this board and all the members in it. We are all so Blessed to have each other!!!!!

[RhondaG4]

in reply to: Will it end? #1071581

Boy that is the question of the day for me today. Had RAI today. Scared and hopeful all in the same day!!!! My 7 year old had track day at school today…so I attended this morning, even tho I really didn’t feel like it. My legs were weak, and I had alot of tears from the stupid wind here in Wyoming, and my mind elsewhere…already at the hospital to take my RAI. I’m sitting here tonight wondering how I’ll feel tomarrow…and in a month from now when I go to my son’s USMC Graduation in California?How will I feel tomarrow when once again the tears come from not being able to hold my kids close until Friday when this RAI gets out of my system? I also have an almost 2 year old and a 21 year old, and a hubby who took off of work to take care of the kids. And on one hand I’m grateful for the tears, cause at least my eyes aren’t dry and itchy.

I don’t know if things will ever get back to "normal". I’ve heard it said that normal is a setting on our dryers, something I’d like to be able to use without being in so much pain because of it. What I do know is that with the Grace of God I will get thru one more night, and then one more day. And sometimes it is one more hour…just one more hour.

Hang in there, that is all we can do. Lots of hugs, Rhonda

[RhondaG4]

in reply to: And so it begins… #1071540

Blessings,
I’m kinda new here also, and I don’t think you’ll find a better bunch of folks for support and info. If you are coming out of remission and are hyper again, you need to decide to do some sort of treatment. Hyper can be a life threatning condition. It is called thyroid storm, and it can kill people.

I personally had my RAI today actually. Until you decide what is right for you, you should at least be on some medication to keep the hyper under control. They can do this thru ATD…anti thyroid drugs..and they can use beta blockers…blood pressure meds..for high heart rates.

I’ve been told about loosing muscle mass, but have some other problems that I’m already in physical thearpy for. Yes, you have to be careful of your muscles while being hyper. My endo actually used the word "seperation" when I told him about my shoulder muscle that used to have a knot but now has a huge hole in it. Also, Osteopenia and Osteoporosis can go hand in hand with Graves. Before my RAI today, I was walking in the pool 3 times a week, just for the light weight bearing exercise.
Right before my Dx I found out from a bone scan that I have a 9 times greater chance of breaking a bone then anyone else in my age group, and I’m only 38 and not even pre meno yet. Go figure.

I would find a doc that you are comfortable with. Just the little time that I’ve known about having this, I’ve had to go to my Endo alot. He’s not much on the chatty side, and like you I had to do alot of research on my own. But he is the only guy in town, but is extremely smart and I trust him alot. Until you’ve done your own research and your sure what you want to do, don’t let anyone push you in a direction you aren’t comfortable with, but having said that, also don’t just wait around. At least get on some meds to get the hyper under control so it doesn’t get out of hand. First thing I would do if I were you is look into finding a new doc, and then maybe discuss some meds with him until you make up your mind. I hope this helps. Rhonda

[RhondaG4]

in reply to: Graves and Cannabis #1071632

Simon,
Hi once again. I’m not sure about the answer to your question. I have heard that Cannabis is used in Glacoma patients, but I am not sure for what reason, but I know Glacoma has to do with the eyes. Other then that I am clueless. Sorry I couldn’t be of more help. Maybe if you searched some Glacoma sites, you might get some answers????? Rhonda

[RhondaG4]

in reply to: Recently Diagnosed #1071636

Hi Simon and welcome to our family. First thing I would do is go have a baseline with a good eye doc that knows about Graves. That way if something does come up, you can go in and have it compared. It is what I did and lots of others on here as well.

Also…if you’ve been doing alot of research, I notice when I am reading or on the computer too much….the eye strain from it will make me twitchy, that could be it, just tired eyes with Graves as a backdrop. Go see a doc and put your mind and your eyes at ease. Your Endo should be able to recommend one that they use.

This is a great site and the people here are awesome. You’ve come to the right place for help and support. You’ll probably get alot of "mothering" seeing as how Graves effects more woman then men. But there are some men here that are awesome….I’m kinda knew here myself as only being Dx in Dec 08. If someone here knows the answer to a question they will gladly share the info, if not alot go out of their way to find out the answers for us newbies that are scared or simply don’t know where to look for the answers. And again, Welcome and ask away!!! Hope this helps, Rhonda

[RhondaG4]

in reply to: 25 mili on Wed…excited and scared all at the same time #1071650

Thanks Ski and Mama….actually if I am feeling up to it I plan on cleaning out dresser drawers and things that have needed to be done for a while now and I haven’t been able to get to. I like the gloves idea….gonna get some great hand lotion to put on before the gloves too and use it as a beauty treatment time too!!!!! And if I can…I am gonna sleep my head off….I haven’t been able to sleep in well….since I was in ICU after my stroke. Nope…no laptop here…so I’ll just whipe down the big one in the living room after using it. YES…..Mac is awesome…he’s actually already talked to his mom about me coming over there if it gets too rough on me having to stay away from the kids. But at least being able to hug and kiss them twice a day is better then nothing a day. I’m kinda looking at it from the point of view of practice for when I go to California in May for 4 days without hubby or the girls for Richards’ USMC Graduation. Plus I’m gonna be making lists of stuff to take to Cali…so I should be just fine. Plasic and paper wear…liking those idea’s too. Thanks…and I’ll keep ya posted.

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