[adenure]

in reply to: diagnosed with Graves Disease Today..4-20-12 #1171304

Hi Vinny!

Welcome; I too, am fairly new at this. I’ve been on 5 mg. daily of Methimazole for 5 weeks now. I noticed an improvement in 2 weeks with symptoms. I’d say that, just now, I’m starting to feel somewhat like my old self again. I live in San Diego, so we have sun year round too! My doctor didn’t say anything about staying out of the sun. If your doctor is insistent about staying out of the sun, you could always sport one of those huge umbrellas for shade! I have 4 boys- not football though- they’re competitive gymnasts (the older 2 are- 8 y.o. and 7 y.o.). My 4 year old takes classes & my 5 month old just watches! I know it’s hard to hear the news about Graves Disease, but stay positive and I hope you react well to your meds.!

Alexis

[adenure]

in reply to: What about thyroidectomy? #1171279

Hi,

A friend of mine is a nurse (her dad and another family had RAI for Graves). She told me that she wouldn’t recommend the surgery only because the neck is such a sensitive area and too many things can go wrong. If, for some reason, the methimazole doesn’t work for me, I don’t know what I’d do. For some reason, the idea of RAI doesn’t appeal to me- so I’m hoping the meds. work.

Alexis

[adenure]

in reply to: Why doctors fluctuate so much in treatment / lab values, etc. #1171185

Hi catstuart,

Yes, do stand up for yourself and find a doctor who will listen to you and treat you. It took 4 doctor visits before I actually had someone figure out that my thyroid was the reason for all the hyper symptoms. The first doctor told me he “didn’t have a crystal ball” but he told me that I had anxiety problems, gave me a paper bag to take home with me to breathe into and that was it:/ (and a suggestion to take xanax). He didn’t order any blood tests or even mention my thyroid. If I had accepted his answer, I wouldn’t have finally had blood tests, found the TSH to be off, further testing, finally seeing an endo. and being prescribed methimazole! Knowing what the problem is is such a relief. Starting my treatment (although nerve wracking for fear of side effects, it not working etc…) was a great relief to take a step in the right direction. So, yes, DO find the right doctor! You deserve it!

Alexis

[adenure]

in reply to: Hello! Newly Diagnosed & New to Forum #1170909

Hi Gina,
How weird!!!! The z-pack thing. Looking back, I realize that I had some “woozie” light headed feelings here and there; I just figured it was me recuperating from child birth and being tired. The Z-pack though sent me into a whirlwind! My heart palpitations were terrible, I had really bad panic/ anxiety attacks (never had them before), had a hard time breathing, sweaty feet & hands- just crazy. After 2 weeks and the z-pack was out of my system, I felt better, but not myself. The first doctor was convinced I had an anxiety disorder, told me to breathe into a bag & suggested xanax and started his diagnosis with “I don’t have a crystal ball, but…” okee dokee…. on to doctor #2! :rolleyes: Although I know he was doing his best I guess. Fortunately, the 2nd doctor ordered blood work, although she didn’t say anything to me about my TSH being .01. Finally, I went back a 4th time and my primary ( I have Kaiser, hence the doctor ping-pong ball game) noticed my TSH level and ordered the other tests and referred me to an endo- thank goodness! Now, I think I’m on the right path finally- almost 5 weeks into 5 mg. daily of methimazole and I’m starting to feel better. I get bloodwork done on May 16th.

Hi Savvyrat, I’m still breastfeeding my 5 month old- yeah, those hormones really do us in sometimes! It’s amazing how they can really screw you up! We have 4 boys, and I don’t think I’ll probably have anymore children bc I don’t want to go through this again if I can prevent it. I guess child birth can trigger Graves. I am happy with my family and just want to be well.

Alexis

[adenure]

in reply to: 5 year old son with Graves #1171254

Hi!

I am not in your situation, as it is me (the mom) who has Graves and not my children, but the idea crossed my mind about his school. I used to be a school teacher (I homeschool my boys now), but you might want to look into an IEP for him until you are able to find a treatment plan that works for your son and gets things stabilized for him. Graves Disease does alter the way we can think and handle what life brings us. For a child in school, especially starting out, I can only imagine how difficult it can be. If it were my child, I would definitely talk with his teacher and the principal- helping them to understand what Graves is and how it effects your son. Graves is a disability and if your son has a difficult time handling the daily routine of a classroom, you can look into having an IEP developed for him. These years are so important and children (although resilient) are vulnerable and little sponges. Look into getting his teacher and the principal on board with you and establishing a good relationship before the school year begins.

Alexis

[adenure]

in reply to: Test results consistent with Graves’ #1171230

Hi!
I don’t know about Zyrtec, but I’ve taken the generic form of Benadryl anhistamine – 25 mg. on occasion to be able to sleep. Insomnia has been a tough symptom for me with the Graves, so my endo. said that 25 mg. of benadryl would be fine to take. I take methimazole daily (5 mg.). It’s been 4 1/2 weeks for me since I’ve started it. In the last month, of taken benadryl 4 times with the methimazole.

Alexis

[adenure]

in reply to: GRAVES How can I cope with 3 kids and this awful THING :( #1171204

Hi!
I just wanted to give you a big hug and let you know that you’re not alone. I was diagnosed with Graves 4 weeks ago and have been on methimazole- 5 mg. daily since then. My first labs won’t be for another month. I’m hoping it shows improvement. I’m feeling better, but not great. I still have a hard time sleeping, feel “floaty” or light headed like I could faint, but not really- hard to explain, and yeah, because of the lack of sleep I’m irritable too at times. I have 4 boys (8 y.o., 7 y.o., 4 y.o., and 4 months old) so I hear you there! If I get some decent sleep, my mood is better, but it’s tough. Hang in there and I hope you’re able to get on a path to treatment and wellness soon; that’s what we all hope for. The hardest thing for me is being patient while waiting and waiting and waiting to be myself again (hopefully). Also waiting for the labs every 2 months, wondering if the dose is right. But, as someone said to me, “It could be worse.” I know this is true, but it doesn’t mean that Graves itself isn’t difficult and a pain in the rear! Stay strong; you can do it.

Alexis

[adenure]

in reply to: 27 year old from Pa overwhelmed with Graves #1171158

Hi! I have 4 boys too I have good days and bad days as well which are pretty much dependent on how much sleep I get. The night before last was a good sleep, so yesterday was a good day. Last night I slept very little, so today’s not so good. I was diagnosed 3 weeks ago and have been on Methimazole (Tapazole) 5 mg. daily for the three weeks. I think it’s helping, but I know it will take time to get back to who I was before all of this. It is frustrating. The insomnia is the worst, no doubt there for me. The meds. seemed to have improved most of my other symptoms, but not the insomnia so much. Although, I do have some good nights, so that is a plus I guess. I hear you though on not wanting Graves to control your life. I’m trying to stay positive; I want to be “me” again. Hoping for that someday soon.

Alexis

[adenure]

in reply to: Survey: If you chose medication( Tapazole/PTU) results? #1171130

Another question for those of you who were in remission for a certain amount of time… What caused you to go hyper again? Was it stress or a major life change, child birth? I just wonder if it’s possible to stay in remission if I’m really careful about my life and the factors in it. Not that we can control everything obviously, but I was curious. Did you go back on Tapazole after a certain time in remission?
Alexis

[adenure]

in reply to: Survey: If you chose medication( Tapazole/PTU) results? #1171128

Thanks for you post Claire- it gives me hope. Did you have insomnia? If you did, when did it go away? What was your dosage?

[adenure]

in reply to: Survey: If you chose medication( Tapazole/PTU) results? #1171126

Hi! I’ve only started my treatment 3 weeks ago. I chose methimazole. My endo. put me on 5 mg. daily. I think I’m feeling better than I did before taking the meds., but I can tell that I’m no where near my normal self before the Graves kicked in. I figured I’d try the medicine first as it seems the least invasive and permanent. I’m hoping for a good outcome and remission, but time will tell. I also have 4 small children including a 4 month old, so taking anything radioactive right now wouldn’t work for me.

I know one person who did RAI, and she said she wouldn’t suggest it to anyone. That’s one of the hard things about this, everyone is different. Everyone’s body reacts differently to treatments, and everyone’s particular problems with Graves are different. Funny how certain treatments are like a miracle to some, where to another, it’s a disaster. So, my thought process was to start with medicine, see how it goes, and then go from there. I get my first labs done mid-May to see how the methimazole is working. We’ll see… in the mean time, trying to stay positive and do the best I can.

Alexis

[adenure]

in reply to: Iodine supplements? #1171059

Just wanted to say hi! I’m in Southern CA too! I hope you get some answers and feel better soon!

[adenure]

in reply to: I can’t stop yelling…rant. Sorry. #1171030

Oh, and I also get how noises and sounds can bug you. My 4 year old is the sweetest boy, but he talks and talks and talks and talks… and he has a high pitched voice (what 4 year old doesn’t, right?). It takes all I can not to tell him to stop talking because he just wants to share stuff with me, but oh man, sometimes it’s too much. There are times when I tell him to use an inside voice (which he’s still working on…) and yeah, I’ve told him to be quiet a handful of times, but I try not to because I know he just wants to be with me and share stuff. Probably the same as your son. Hang in there. We’ll all get through this.
Alexis

[adenure]

in reply to: I can’t stop yelling…rant. Sorry. #1171029

Hi Jenn,

I just wanted to say hi and let you know you’re not alone out there. I’m frustrated with feeling this way too from GD. The methimazole is helping, but I’ve only been on it 2 weeks. Sleeping is really hard for me, and that certainly doesn’t help in dealing with feeling tired and not 100%. I have 4 boys (8 y.o., 7 y.o., 4 y.o. & 4 months old). I homeschool them; sometimes being patient before Graves was tough, but now I find it can be harder just bc I’m feeling tired, I worry about the Graves and how it’ll effect my life in the long term. I wonder if I’ll ever be my normal, energetic self again- 100%. I used to play tag with my boys, dance around, act silly, and have endless energy. Not so much anymore. Since taking the methimazole, I’m feeling a little better, but I want my old self completely back too. I want my old self completely back for my kids and my husband. It sounds like you are dealing with a whole lot right now; I completely understand about the “worrying” part. My husband says I worry too much too. He’s right. I worry a lot about stuff that never even happens. I’m trying to change that. One day at a time. Hang in there and big hugs to you. Also, I did explain to my boys (all of them) that I’m not well, but that I’m on medicine and that in a month or so hopefully I’ll be feeling better, but that we all have to be patient. They’ve come with me to the doctor & to do labs and waited in the waiting room with my dad or mother in law- it helps them to understand some.
Alexis

[adenure]

in reply to: Getting Labs Done #1171023

Thank you! I had asked about testing sooner, but my endo. said that I wouldn’t see any changes in labs so early on, so my first labs after starting the methimazole are 8 weeks after the first dose. Not sure why so long, but I guess it’s okay. It’s been 2 weeks so far. I’m feeling better than I was although not 100% yet. I did ask for the liver and CBC tests to be added to the TSH and T4free. He didn’t order the T3- said it wasn’t necessary. The antibodies test makes sense (not doing it for awhile). Well, I’ll just wait it out until mid- May and then find out how the methimazole is working I guess. I think it’s working as, apart from sporadic sleeping, I’m doing pretty well. Still somewhat shaky, heat bugs me at times, can’t do a whole lot of physical activity, but my heart rate is down, I’m eating, and not losing anymore weight- so those are positives. Can’t wait to get normal sleep again though.

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