[Julie3588]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171102

I flew about 4-5 weeks after having my RAI treatment and didn’t encounter any problems. The radiologist told me that I should be fine but gave me a note and a phone number to call in case I set off any detectors. The radiologist also told me to contact them if I did run into any problems since the radiation detectors are fairly new and they were trying to gather stats on what dosages set them off.

[Julie3588]

in reply to: Possible relapse but bloods only just off #1170933

I’ve had a similar episode lately that sounds familiar. I’m on Synthroid after RAI 2.5 years ago and was finally feeling really good this past summer. Since December 11 I’ve been feeling worse and worse, more and more hyper symptoms (anxious, depressed, shaky, losing weight). Labs were done in December, my endo said they were normal. Labs done again last week, levels were the same as December, but free t4 was almost out of range. The interesting thing is that my levels have been increasing since last summer, so my endo said that may be the culprit, even though technically they are “normal”. I’ve started a lower dose and am crossing my fingers that it makes me feel normal again. I’m also going to start seeing a therapist to rule out any other issues. Sometimes this Graves thing is just too much. It’s nice to hear that other people have had similar experiences.

[Julie3588]

in reply to: Life changes and Graves’ #1171003

So I got my labs back last night and my endo’s first response, as usual, was “everything’s normal”. I pressed him this time for an answer because I have just not felt like myself lately. He compared my current levels to my past two labs and it appears that my thyroid is getting “faster”. Since this past December, my TSH has decreased and my free t4 has increased, t3 normal. He said this could explain symptoms, even though my levels are all within range. He then said that my free t4 the past two times have been just on the brink of hyper but still normal. He said this may have been caused by taking my Synthroid right before the labs, but I always do that and my t4 hasn’t been this high when I’m feeling good. I’ve also lost weight the past year and he said that that can affect dosage since my bmi has decreased.

I guess what I’m really wondering, is does all of this make sense? Sometimes I don’t know if my endo is just throwing info my way. He suggested I try a lower dose and I’m going to start it tomorrow. Sometimes I just feel so confused.

[Julie3588]

in reply to: Life changes and Graves’ #1171002

Thanks Shirley. My endo is mailing over a lab slip so hopefully in the next few days I’ll get this taken care of. I always have this fear, though that the labs will come back “normal” even when I’m not feeling “right”. It’s the same fear I have when I’m feeling “right” and then get worried that the lab will come back “hyper/hypo”.

I have a question for you if you don’t mind. In all your years on Synthroid, have you had to have it adjusted often, and if so, does it seem to correlate to life events at all? I’m so curious about the extent to which this occurs with people post RAI, but there’s hardly any info out there and my endo is no help. He originally had me under the assumption that once we found a dose that made me euthyroid, I’d be good to go forever. I now know this is not the case. I just hate feeling so out of control of my body, after 7 years of it I just want to feel better, and not live in fear of another thyroid “episode”.

[Julie3588]

in reply to: first signs of TED? #1062681

So I the swelling and puffiness did go down throughout the day and has yet to return. (keeping my fingers crossed) I have officially stopped freaking out ” title=”Very Happy” />

I talked to my ophthalmologist and he said that it may be a sign of TED but it most likely isn’t and could have been caused by a blocked oil gland or allergy. He told me to keep an eye out for swelling around my entire eye, especially my lower lid and to call him if my symptoms persist or if there’s changes.

Thanks for your responses.

-Julie

[Julie3588]

in reply to: Headaches?? #1063242

Hi Carolann,

When I was first diagnosed and put on propranolol my endo asked me if I ever had migraine headaches and I said yes. He told me that propranolol is actually used sometimes to treat migraine headaches and I may experience relief as a fringe benefit. I have noticed after going on and off propranolol a few times that whenever I am on it I experience no headaches at all! Once I am tapered off, they return. My endo told me that I could actually stay on a low dose of beta blockers if it helped the headaches but I decided to go off of them since I no longer am hyper.

Also, I’ve noticed that when my levels are either "off" or I am swinging from hyper/hypo to normal or vice versa I get an increase in migraines. I’ve heard migraines can be hormonally driven so maybe there is a connection.

Good luck with everything.

-Julie

[Julie3588]

in reply to: Out of remission, what next? #1063215

Hi Heather,

Like you, I was on ATDs for about a year before going off of them and into remission. After a year, I relapsed and became hyperthyroid again. At this point I weighed my options of either trying the ATDs again or doing RAI (my endo didn’t even mention to me that surgery was an option). I ultimately ended up doing RAI because I no longer wanted to keep waiting to see if remission would occur and the ATDs just didn’t seem to agree with me, I always felt a little "off". My endo told me that each time I tried the ATDs, my chance of remission would become lower and lower. Of course, this was a very personal decision. one person’s choice is not necessarily the best for someone else. I am really happy with my choice, I initially had some regrets after the RAI but a year and a half later, I’m finally starting to get my life back.

I wish you the best of luck. Let us know what you decide.

-Julie

[Julie3588]

in reply to: Teenagers with graves disease? #1063625

Hello,

I had just turned 19 when I was first diagnosed, though I expect I’ve had GD since high school. So I’m a bit older than you but can probably still relate (I’m 22 now). I first tried ATDs then eventually ended up doing RAI a little over a year ago and am now on synthroid.

Like you mention, graves can really wreak havoc on friendships and schoolwork, dating becomes even more challenging (not that it’s easy to begin with, lol) I know I’ve lost a couple of friends/relationships because they just couldn’t deal with the severity of everything, not that I blame them. Teens/young adults just aren’t the most understanding group, they tend to still be in the invincible stage. This disease knocked me right out of that one.

Anyways, let me know if you want to chat. Like Kimberly said, you can PM if you’d like, or just post here. Best of luck with everything. Hope you’re having a healthy day!

-Julie

[Julie3588]

in reply to: Will this get better? #1063659

Krystal,

Sorry to hear that you’ve been having such a hard time. This disease really can make us feel like miserable wrecks. I have done both the ATD route and RAI. When I was first diagnosed I did a year of methimazole before being weaned off and maintained normal levels for a year before relapsing and ultimately choosing RAI. The first few weeks on the ATDs were completely miserable for me, you’re not alone. I was also suffering from mono at the time so it was kind of a double whammy. I’ve noticed every time my levels are "off" I become really anti-social, I just have no desire to see or talk to anyone. Both times I was hyper, I was exhausted, cranky, and felt empty inside. One of the reasons I chose RAI was because the methimazole made me feel even more hollow and emotionless, though side effects can be very personal. I remember it took about 4 weeks to start to feel better on the ATDs, and about a year before I felt healthy and on the road to recovery. I’m now traveling that same path again as I recover from by second bout of hyper and the RAI. I’ve finally found a stable dose of synthroid a year later.

I really want to emphasize that while I haven’t exactly been at normal levels for the past couple of years, that doesn’t mean that I haven’t gotten my happiness back. Throughout all the ups and downs there have been glimpses of my old self. As time progresses, these glimpses become longer and more frequent. Though I don’t think I’ll ever be exactly the same again, something you mentioned that scares you, I’m not sure that even if I was in perfect health I could return to the "old me". A disease like this has changed my outlook on life so much and increased my appreciation for everything and ability to really live in the movement. Like some of the facilitators have mentioned on the boards, we have to remember that in the time we spend fighting this disease, we also age and grow, so there’s no way to know if where we stand after treatment isn’t where we would have been otherwise.

Best wishes and hope that you start to feel better. Be gentle with yourself. Know that you’re not alone and there is light at the end of the tunnel ” title=”Smile” />

-Julie

[Julie3588]

in reply to: frustrated by memory #1063844

Ellen,

I originally went the ATD route, went into a short remission, relapsed and had RAI a little over a year ago. I went hypo, and have been on Synthroid for a year. I was kind of all over the place dose-wise for awhile and two months ago finally found a dose that made me start to feel like myself again and didn’t send me either hyper or hypo. It’s probably been about 4.5 years since I’ve been healthy. My endo was trying to keep me on a dose that made me slightly hyper but I felt like a complete disaster on it and switched to a lower dose. Since then my TSH has been between .3-1 and my t4 and t3 are right in the middle of range. I see my doctor again in January and will get tested right before.

Bobbi,

Thanks for the reference to the hurricane. It helps to look at it that way. Sometimes its hard to realize that just because my levels are now "normal" it’s going to take awhile for all the symptoms to go away. Everyone around me just seems to assume that since I’m not technically "sick" anymore I should just bounce right back to normal, no matter how hard I try to explain it to them.

[Julie3588]

in reply to: RAI vs Surgery vs Meds #1063974

Hello,

Just wanted to add another experience to the others here. I was started out on PTU, found out I was allergic (major hives! yikes) then switched to Tapazole. I went into remission for exactly one year then relapsed and ultimately chose RAI. I decided that I didn’t want to spend the rest of my life falling in and out of remission, mostly for my own piece of mind (I’m a worrier). I also HATED the way that the ATDs made me feel, really hollow, sleepy, and depressed. Of course this experience was entirely personal. If I had tolerated the ATDs better, I think I would have given them another shot, but I just didn’t have it in me. I am now a bit over a year out from RAI and am FINALLY beginning to feel healthy again ” title=”Very Happy” /> I am finally on a stable dose of Synthroid and have been feeling better than I have since my initial remission.

I really think you just have to go with your gut on this decision, and like everyone else has said, make sure it’s 100% yours. Best of luck on your road to recovery, there is light at the end of the tunnel!

-Julie

[Julie3588]

in reply to: Hi everyone, we are back! #1065221

Hello,

I had RAI done almost exactly a year ago, at 21. I had gone on ATDs in the past and had a short remission but ultimately relapsed. After the RAI, I only had to refrain from close contact for 3 days. I was actually told that it was fine to go out to dinner for my sister’s birthday the next night as long as I stayed 1m away from everyone. After 3 days I was able to hug and after 4 days, kiss. I had no throat discomfort and was told to take a double dose of my beta blocker for the 7 days following the treatment to minimize symptoms. The only negative was that after the small dose I was given for the uptake scan, I felt very nauseous and ended up vomiting a bit. I do not think this is very common though. I made sure to eat lightly before the actual dose and felt fine afterward. I would choose RAI again if I needed to. It seemed a lot less invasive than surgery and I didn’t want to spend the rest of my life going in and of remission on ATDs. It’s been a year and I’m still trying to get my levels right on Synthroid. Hopefully your daughter can make a decision she is happy with. It can be hard to make a decision at this age that will affect you for the rest of your life. She’s very lucky to have such a caring and informed mom, mine is the same way and it helps so much. Best of luck!

-Julie

[Julie3588]

in reply to: Nothing seems to get better.. #1065106

Odapoda – I too was 19 when I was first diagnosed with GD. I went on ATDs, had remission for a year, then relapsed and went the RAI route. I’m now 22 and finishing up college. I definitely understand your frustration with being only 19 and so sick. I too feel like it is a struggle just to keep up with school, much less a social life. Just know that it will get better! It took me 12 months on ATDs, then 3 more months of yoga and eating healthy and generally taking amazing care of myself before I began to feel like my old self again. Now, a year after having RAI, I am once again traveling the same road to recovery.

Your friends may not understand what you are going through. I’ve found that people our age generally aren’t the most understanding regarding serious health issues,and who can blame them, they are at the most active stage of their lives. I also am convinced that going through such crazy hormonal swings due to our thyroid on top of finishing up puberty creates a general recipe for disaster. Sometimes when my levels are off I go back to feeling like a moody 13 year old girl. Also, like you, I no longer have a tolerance for stress. Know you are not alone! Vent all you need, it helps.

-Julie

[Julie3588]

in reply to: Meds/Remission #1065050

After my diagnosis I was quickly placed ATDs. I started out on PTU but had an allergic reaction to it and switched to methimazole. I liked that I only had to take the methimazole twice a day rather than every 8 hours like the PTU. The PTU also left an awful taste in my mouth. After a year on the ATDs, I was weened off and went into remission for exactly one year before I became hyperthyroid once again. I chose to go the RAI route for a few reasons. First, I hated the way the ATDs made me feel, very vacant, slightly depressed, bloated, and just generally unlike myself. Second, I decided I did not want to spend the rest of my life going in and out of remission. I went back on methimazole for 2 months following the RAI in order to keep me from going even more hyper. The side effects from the methimazole I experienced the first time around returned. I am now a year out from RAI and still trying to get my levels normal and at a point where I feel well.

As someone who has done both treatments, I can say that there are definitely pros and cons to both. It’s a very personal choice and there is really no way to know which treatment you will tolerate best. I do know that my endo told me that the new consensus in the medical field is to choose methimazole instead of PTU because it is a bit safer. I’m not really sure what the reasoning is behind it or if it is just a matter of opinion but it may be worth asking about.

Hopefully your road to recovery starts soon ” title=”Smile” />

-Julie

[Julie3588]

in reply to: Need Advice #1066063

Thanks for all the thoughts and advice. I talked to my professor and he was extremely supportive. I’m always so scared to tell anyone about my GD since I’ve had some pretty harsh reactions to it in the past. From my experience, college kids and even some adults just don’t "get" what it means to feel sick and their reactions can hurt pretty badly. I’ve pretty much resorted to only telling a few people I’m close with and keep it quiet besides that.

I’ve definitely been pushing myself too hard. I’m usually really good about putting my health first but I guess I’ve been so busy lately that I’d lost sight of it. Sometimes I just don’t realize how hard I’m pushing myself until my health starts to decline. I need someone to tell me to stop and re-examine ” title=”Smile” />

I’m going to slow down a bit. Like you said hyperm, I don’t want to burn out completely. I love life too much not to enjoy it ” title=”Smile” /> Thanks for all the support.

-Julie

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