**Me and my friend the thyroid ultrasound-scanner-and a blanket.**
"All you need is 20 seconds of insane courage, and I promise you, something great will come of it."
I saw "We Bought a zoo" (I was just reminded that the capital z on our keyboard doesn't work) a bit ago with the elderly lady I work for. I enjoyed it.
Especially the part where the dad tells his son "All you need is 20 seconds of insane courage, and I promise you, something great will come of it." He, of course, is referring to his snap decision to talk to their mother for the first time, and again, when he decided to buy a zoo.
I'm taking this advice and I'm going to open up my little heart and let you all in. And I type pretty fast, so hopefully I can get it in. I don't normally share information of a personal nature on such an open medium-but it is time.
20 seconds starts now.
Did you know that in Sept 2011 we had made the decision to move to Fiji, through summer 2012 in response to some work opportunities? Did you know that moving to Fiji would require a work permit-which required a physical? A physical that I got- and a blood test that came back abnormal?
And I was sent to a specialist. And diagnosed with an auto-immune disorder called "Grave's Disease." Great name right, grave? death.
Basically, my immune system is attacking my thyroid--causing it to be HYPER (overactive)--for life. Most people will have some sort of hyperthyroidism in their life that will resolve itself--this is different in the sense that mine will never balance out on it's own, it may never go away without assistance--because it involves more than my thyroid; my immune system and antibody levels. Fairly common--fully controllable-if treated properly. Left untreated--it will get worse and led to other health problems--obviously.
Curable? That's up for debate. How long till 'under control?' Days? Months? Years? It's unclear. I will most likely be hand in hand with Mr. Grave my whole life.
And that's when we knew we wouldn't be moving to Fiji-with my new found nerdy need to be seen by a doctor every 6 weeks for the next little while. Bye Fiji. POOF. Gone.
Recovering from that wasn't easy. But we must press on.
For those unaware, there are 3 treatment options. (my doctor is very fond of #1. Me, not so much)
1. Take this radioactive iodine pill (a small scale form of radiation- I'm not supposed to touch anyone after I take it for a few days). That will kill my thyroid and production of TSH (thyroid hormone) in my blood. Forever. Which will eventually cause me to dip into HYPOthyroidism--thus resulting in supplementing with a thyroid hormone, daily, for the rest of my life.
2. Anti-thyroid drugs--taken daily for an amount of time (1-2 yrs) which could lead to remission of the disease, but could also not.
3. Surgery to remove my thyroid (my doctor hasn't suggested this)--but I know it's an option.
And considering we don't have children yet, I would like to do the least amount of damage possible--in all senses of this situation. Who knew a little thyroid could cause such havoc?
So I'd like to just throw this out there.
Do you have experiences with Grave's disease? Do you have advice? What treatment worked for you? Didn't? Complications? Other options? Any sort of input would help my confused mind.
Although google has been my best friend lately and I have heard the good, the bad, and the ugly about EVERY option, I would like to learn from the experience of others (obviously to be discussed at length with my poor doctor. I AM one of THOSE patients.)
20 seconds over.
Let's see what comes of this.
Pushing publish took WAY longer than 20 seconds--I'm sheepish to be so personal on this little bliggity blog. What will people think? I don't want people to feel bad for me or take pity on me or worry about me. Will I push it?
I guess you'll know if you're reading this.
21 Sunshines:
a) LOVED that movie.
b) WHAT THE HECK!?
I'm praying for you. And Erin, beware of Google. You might make yourself crazy. The best advice I got when Gavin was in the hospital was to find a few sources to trust and then tune out everything else. Saved my sanity.
Love you, lady. Your courage is astonishing.
I have a friend with it... I'll send her this way. I'm thinking about you Erin! Xxoo
I don't have Graves disease but I do have an auto immune disease and thyroid troubles. It's been hard trying to figure out what to do, worrying about what will happen and feeling like somehow, you aren't the same person you were before. If you ever want to chat or just need someone to listen, email me denisegibb@yahoo.com. Hugs to you!!
Hello Erin,
I found you through Natalie and wanted to let you know that I was diagnosed with Graves disease about 11 years ago. I went through option number one and took the radioactive iodine. It was super simple and much easier to deal with then surgery or anti-thyroid drugs. Now that I no longer have a thyroid I do take a pill everyday but I'm happy to say that my body is functioning normal. It takes some time to find the right dosage for your body (took me a couple of years) but I've been level now for several years. If you want to talk more about this, email me. I have been through just about everything you can go through with Graves disease (I had every symptom you can get.) I would be happy to answer any other questions that you have.
corissa.langheinrich@gmail.com
I was diagnosed with Graves super early..when I was 12. Had the alergic reaction to the medicine and choose the radioactive iodine.
It was a process to figure out where my body needed to be at after running hyper for a long time..and on medicine for life. But I have 3 beautiful kids. No lasting side effects (at least not that I know about. ;) Maybe I should ask my husband this question. ;)
I think the most important thing is to find a great doctor that you trust, and that is willing to LISTEN to you. There is such a large range of "normal" for thyroids and you need to be your own advocate. I feel much better on the higher side..easier to feel good, weight is low, moods are good, sleep is good.
And like my mom used to tell me..hey, Barbara Bush has it. I'm still not sure why this was important but she is a dyed in the wool republican. ;)
Any questions feel free to email me. allysonrandle@hotmail.com
You will be great!! That first decision is your starting point for your recovery.
Hi! Found you through Natalie too. I have the opposite of you, Hashimotos hypothyroid for about 5 years now. Much like Corissa, it takes some time to find the right dosage of medication, but once you do everything (aka your TSH levels) go back to normal. Now, however my hypothryoid has transitioned into hyperthyroid and has been fluctuating back and forth. I'm told this is normal. I would say option number 2 seems safest, and I only think that way because I, much like you, want to have children one day (currently engaged), and would pick the "least intrusive on my body" option. Perhaps get a second opinion from another doctor? Also, I did acupuncture which helped my levels as well!
Bottom line, remember you are not alone. 1 in 3 women have this and it's a insignificant health issue in the grand scheme of life!
kathleen@kathleenburlew.com if you need anything else, or have any questions.
Hi Erin,
I was diagnosed with Graves disease a few months ago. My levels were just outside the norm & had I been asymptomatic they wouldn't have bothered to treat it. However, I was shaky, had heart palpitations, was a nervous wreck, emotional & thoroughly exhausted. I've been put on neomercazole & was feeling great for a while but over the last month I've taken a dive. Turns out the meds are working too well & I've gone hypo. After a few days sans meds I've started on a lower dose. Felt great for a few days but now back in 'slugville' as I like to call it. More blood tests & back to the endocrinologist again to find out what next.
For me, this has been a roller coaster ride. I feel helpless & don't know how to make myself feel any better. I believe that because my T4 is only just outside the normal level at each end of the scale that this may be a little harder to simply adjust my medication to sort it out.
I'm finding it hard to find support from people who have had or are experiencing Graves in Sydney.
I hope you listen to your body & what it's telling you. I believe there is a light at the end of the tunnel with this.....we just have to find it!!
Wishing you much luck, strength & love.
Paige
My body was recently diagnosed w Graves too. I've done a lot of research and have a cousin who was quite a trailblazer being diagnosed a couple years before me. Have you had any head trauma in your life? An inflamed pituitary gland/stem can send an overactivating message to many systems in your body including your thyroid. I chose the least evasive treatment first ...medication (methymizole) mixed with some natural remedies and I will tell you w/in one month it was a night & day difference. Only you know what is best for your body regarding whether you choose to use radioactive iodine or medication. But I wish you the best! Love & Light
My doctor says that a mild goiter in the past was considered a sign of beauty!
hey erin!! my mom has hyperthyroid and my sis has hypothyroid. def a common thing, so no need to fear you will be well! and there are treatments as you clearly know. i know someone with graves disease, he developed it on his mission. he did option #2 and took the pill for about 2 yrs. he has gone into remission but when he stops the pill sometimes his body takes a dip. i don't know all the details since its not my personal thing but i do know he still has to see the dr. and occassionally take the pills when his body starts needing them again. my sis takes a pill every day too and i think so does my mom. good luck erin, you will be ok :) like everyone else, listen to your body. you have got some great advice here!! thinking of you!
Love all the comments!! I have no advice... Just wanted you to know I read this, and I'm thinking of you friend, as I often do :)
And from someone that knows what it feels like to be "derailed", press on ward my friend!! You are stronger than you know.
You ARE brave for sharing this and for dealing with all that you do. I don't have any experience with Grave's disease-only with my own auto immune rollercoaster of Scleroderma.
It is so hard to have a chronic illness, physically and emotionally. Especially when you are worried about how it will effect those around you-your family and possible future kiddos. I get that, and I am so sorry. It's ok to be worried, sad or scared, but I get the feeling that you are strong and your faith will get you through. Sometimes the beginning is the hardest. I pray that you will find something that works for you.
Just for the record I HATE looking up things about my disease on the internet. There is even a great online support group for me-but I don't personally like to be reminded of worst case scenarios.
oh, my erin. you know i don't have the words delicate enough to console the way i want to. all i can say is i am so proud of you for bring it up. following your gut and sharing it openly. look what has come of it! a lot of wonderful advice as well as sympathy from those who know what it's like to go through what you're experiencing. although we're going threw different scenarios, we can still relate. so thank you for being a strength to me... always. for always being a strength and someone to relate and talk with.
I LOVE YOU.
air.
Erin, sounds like you were blessed with timely events that led you to take care of this. I too am so proud of your courage. You are one strong lady my friend! I'm sure you will take care of yourself and it sounds like something manageable from the other cOmments. You can do it girl! I can wait to see you in person.
Erin! Oh my goodness. Let me just say....thyroid issues are the absolute WORST.
I don't have first hand experience with Graves' Disease or hyperthyroidism, but my Mom has struggled with hypothyroidism for a very, very long time.
I know that, for her, it was always a struggle to find a good doctor who would believe her when she felt like her thyroid levels were off. A lot of doctors would shrug it off and she'd go on taking the wrong dosage of medication and dealing with the awful side-effects (which I'm sure you've read about)...but! It sounds like your doctor(s) know what they are doing and that is really, really good :) It's got to be a pain taking the medication every day, but it works! Whenever her meds were right - she was perfect :) I love my Mom a whole lot, and I think she is wonderful, even if she has struggled with thyroid issues while raising me and my siblings. You will be a wonderful mother :)
I wish I was more helpful. But. That's all I've got....thank you for sharing your story :) I really appreciate it. You are an amazing person!
Hi - glad I clicked on your blog today because I can totally share feelings having been diagnosed with Graves myself. I got the news after having my first child and while I was still nursing her. It's tough to know what decision to make because it will affect your health the rest of your life, but you also are pretty much forced to make a decision so I know the pressure and stress you are feeling, and if your levels are high it feels even harder to deal with! So if you want a friend to talk about this with please feel free to contact me, FB, e-mail, whatever. I used to be in the same ward as the Monroes. I also have a couple of posts on my blog about this under the label 'ugh' - the first 2 ugh posts if you scroll all the way down to the bottom. My heart goes out to you - it's no fun to find out suddenly you aren't as healthy as you were before, but you will get though it and it will get better!
good for you, erin. you never know how much you're loved until you're honest with people, is what I say. you're LOVED! xx
I know I dont know you very well, Erin, but just wanted to extend our love and support. I wish I knew much of anything about Grave's disease and had some great insight and comfort to offer you. I admire your strength and courage and know you will conquer this obstacle. I've been faced w/ things in the past I felt I couldnt possibly get through, but Ive always been amazed at the way things worked out and the Lord really is there for us, blessing us and guiding us along the way. Take care of yourself and please let us know if there is anything at all we can do. (And I definitely advise caution w/ google. Ive seriously nearly driven myself & Liam nuts in the recent past using that in search of answers for things I was going through and freaking myself out)
Love & Aloha,
Laura & Liam
I care too!
Erin I'm thinking about you! Hyperthyroidism is no fun. I was never diagnosed with Graves Disease, but I had a hyper thyroid for over 5 years and I could never get it to go away with the medicine. I finally had the radioactive iodine treatment in Dec. 2011. Even though I'm hypo now and have to take a pill everyday, the symptoms and effects are soo much more mild than hyper. I'm so glad I finally had the procedure done. My advice is to listen to your body. I could always tell when the hyper was getting worse and it was miserable. Thank goodness for modern day medicine and doctors. Find the dosage that works for you and you'll feel like normal again. Good luck girl!
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