[aingraham88]

#1060546

Hi, I’m Amber. I was recently (last month–October ’14) diagnosed with hyperthyroid/Grave’s Disease. I was sick for a long while off and on, but it got pretty bad for about a month before Grave’s was found. My levels were T3: 0 and T4: 6.7 Hair loss, heart rate of about 130 (sitting), weight loss (about 20lbs in 2 weeks), weakness, fatigue, dry eyes, extreme itchiness, bladder incontinence, etc. … I thought I had the flu for a long while there.

In short, I am wondering what I should expect in terms of how long for recovery. I know all of the options (methimazole, RAI, and surgery), but I would just like to hear how long it has taken you guys to recover, and which methods you went with for treatment? I know I’m “in for it”, but I’m hoping that some of you can be a ray of light in this dark room. I was forced to drop out of college and I am wondering when I might be able to get back and finish my last 3 years (I’m in my 5th of 7 years) in graphic design at Iowa State Univ.

Eventually, I’d like to have kids after all of this too (no kids yet)! What are all of your experiences with get and being pregnant after diagnosis? I’ve heard only horror stories, so I hope to hear better news from all of you.

Thanks to everyone for reading all of that!

[Kimberly]

#1183230

Hello and welcome! Hopefully, others will also jump in with their experiences, especially regarding pregnancy. I do know that we have members here who have had successful pregnancies following treatment for Graves’. You might also use the “Search Posts” feature in the top right-hand corner of the screen for “pregnancy”, “pregnant”, etc.. to read older posts. (You have to be logged in to use the search feature).

I chose to do anti-thyroid drugs. I was mostly feeling better in about 8 weeks or so, but every patient is unique. Once you get symptoms back under control, you should be able to return to school with no problems, although for some of us, memory isn’t 100% of where it used to be. I use lots of sticky notes and timers for reminders.

Hopefully, you are getting hard copies of your labs, as it’s helpful to see where you are compared to your lab’s “normal” range, as each lab uses a slightly different range. Also, make sure your doc is looking at Free T4 and T3 and not just TSH. TSH can remain suppressed for quite some time, and is not a good benchmark for making dosing decisions.

Wishing you all the best!

[barbra]

#1183231

Hi,

I was diagnosed in April 2013 and had RAI on the 1. of July that year. After about 8 weeks I started to feel a bit better but it took until December before, after some dose changes and switching from Levothyroxin to Synthroid, we hit onto the right dose of medicine for me. And by about March 2014 I felt like myself again. I’m still on the 75 MCG of Synthroid and I’m doing OK. Blood tests, PCP- and endo’s visits are now 6 months apart.
I have some other health issues that popped up but none are Graves’ related, thank goodness.
This sounds easy and straight forward but it was a miserable journey and from what I see on the forum some of my fellow sufferers are still looking for the ideal dose of medicine. It’s a little different for everyone. Just don’t lose hope. You’ll get there and the people here are knowledgeable, kind and very helpful.
As to the pregnancy question someone else will have to answer that, since my children are all grown up.
Try to stay positive, it’ll get better. Keep in touch, I wish you all the best.

Hugs.
Barbra.

[aingraham88]

#1183233

Thanks to you two. I can’t wait to feel better and get on with life.

[vlread]

#1183232

Hi –

I was diagnosed with Graves October 2012. I tried the anti-thyroid medication Methimazole for the last two years, going into remission once, but within two months back to where I began with 0.01 TSH and T3 and T4 at negligible values.

Regarding more permanent treatment options, I was always wary of RAI as I had eye issues. Someone suggested I go to a Neuro-Opthamologist to have this checked out. I finally did and had it confirmed that I have moderate TED (thyroid eye disease). With this in mind, I decided I definitely did not want to do RAI as it can make the eye condition worse, even with the use of steroids.

Last week, I finally had a TT (total thyroidectomy). I am so happy I did! I feel 110% better already. I am told the scar will fade and the bruising is already doing so. More importantly, I already feel like “myself” again.

I wish I had done this over a year ago but my husband and I were moving at the time and I had to begin anew with new doctors, etc.

I’m currently in Texas and I had to see five different Endocrinologists before I finally found one willing to recommend the surgery option instead of RAI. All of the doctors here pushed me toward RAI even though I told them my serious concerns regarding TED and RAI.

With much persistence, I finally found the right doctor, and from what I can see so far, the right surgeon.

This site has been a great resource to me but a few things I would suggest:

1.) Do all the reading you can re: medical studies. Understand your thyroid numbers and exactly what they mean. I found an excellent book, Thyroid for Dummies, that helped me immensely in addition to the multiple websites available. The doctor who wrote it explains all of the different thyroid disorders, treatment options, aftercare, and heavily footnotes his work with medical research.

2.) If you think you have TED – go see a Neuro-Opthamologist as soon as you can. In my case, I ruled out RAI as a treatment option once I confirmed I had TED.

Lastly, I seriously regret not having surgery earlier. I feel like I’ve lost two years of my life. If you feel your doctor isn’t giving you all the information or is pushing you toward one treatment or another, find another doctor.

I wish you all the best!!!

Sincerely,

Vicki

[swhited]

#1183234

Hello and welcome,

I also was diagnosed this October. I cannot help with pregnancy questions as my children are already grown. I replied because I just wanted to let you know you are not alone.
I still feel not so great. I went back to work part time this week ,but have had to be kind to myself. People at work are kind but truthfully overwhelming. They say things like, “Well you look great!” They are trying I be kind, I realize, but what you hear is “You look great, so you must not be that sick! So I can’t imagine why you were gone for so long.” Or “You look like hell, but I’m trying to be kind and make you feel better. ” They also say things about “you need to remember to pace yourself. But I was wondering when you might get to _______?”

It’s hard. We tend to be very hard on ourselves and we are in a hurry to get “back to our lives.”
You will get back to your graphic design degree. You will feel better again, but just not right now. I’ve been reading a lot on this forum, and it has made me feel immensely better. I believe I will feel better, but I’m avoiding thinking about a date even a vague idea like 8 weeks, ten weeks, etc. because if it doesn’t happen, I know that will frustrate and depress me. So instead I’m trying to think, in time I will feel better. I don’t know what that time will be, but I’m adjusting to giving it as long as needed, trying to be honest with myself and my family and asking my doc as often as I need to.

I hope you begin to feel better. Please be gently with yourself and try to let others help and ask for help when you need. I’m not good at either of those, but it’s never to late to learn they say.

Take care

[Kimberly]

#1183235

swhited wrote:

They also say things about “you need to remember to pace yourself. But I was wondering when you might get to _______?”

Ah, gotta love those mixed signals. Thanks for sharing your experience!

If you haven’t already seen it, this is a nice piece for explaining life with a chronic illness to those who just don’t “get it”:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window)

The Spoon Theory:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

[aingraham88]

#1183236

That’s exactly how I’ve been feeling Kim! It’s like… I’m running out of spoons. If I do laundry, I don’t get to shower. If I cook a meal, I can’t do the dishes. Everything is so much like this for me at the moment, and I can’t wait for it to stop. But even longing takes up a spoon some days.

I have fibromyalgia as well as this, so I am used to people saying how I look fine and should feel great. I’m glad I look fine. Some days I wish I didn’t so people could even start to understand. Grave’s coupled with Fibro has been a recipe for disaster for me… but I’m just holding my ground in hopes of feeling better soon!

Thanks to all of you for sharing your stories. It has been so very helpful.

[snelsen]

#1183237

Hi Amber,
glad you found this site. Like all things internet, all kinds of folks have all kinds of agendas, for the site, and for the posters. Some people thrive on drama.
I think you find this a very reliable, wonderful site, plus you will have new friends. I have gone to a couple of the conferences (not sure if they have decided to have geographic ones now, or will revert to one single national conference during the year. They are WONDERFUL. I still correspond with people I met there six years ago.

AND I am from IOWA, although it says Seattle, which is where I live now. I go back to Iowa City (home) every year.

You will see my history below. I was a student at Iowa, in my early 20’s when I became hyperthyroid. I was a crazy person. Not productive, but wound up tight, but at the same time, no energy. I began with an ATD, Tapazole, began to feel human, then got hypothyroid, which is just another hell associated with Graves’.

I had a (sub)total thyroidectomy,cause that is what they did then. Now they do total thyroidectomies, which is a good idea. Having the surgery, changed my life in a wonderful way. I turned into a normal person again. Seems to me it took about 6 weeks to FULLY recover from the surgery (meaning no fatigue at all) I went back to school and work in the middle of the 2nd week after surgery. In my opinion, a bit too soon. I wish I had taken advantage of feeling so much better, and simply having some time off. I have been on Synthroid for many years, and now and then the dose is changed, based on how I feel, and it can change as years pass.

The surgery was easy. (in Iowa City.) When you get to that point, get referrals for a surgeon in Ames who does at least 50 of these procedures a year…or go to Iowa City, have it done there at UIHC (university of Iowa hospitals and clinics, a great place.) Mercy is also here. I can ask my contacts in IC for referrals, if you get to that point.

You will be able to go back to school, you will be able to like it, and have a LIFE again. Graves’ is HARD.

Re fibromyalgia, you know more than I do from your experience, but I have a few friends who ultimately “got over” that condition. It really sucks your battery, that is for sure. You have a double whammy. So darn sorry.

All for now. Write with questions. Yes, I agree with the article about running out of spoons!

As I recall, Iowa State did a nice job of defeating UI in football this fall! I casually keep track of it…very casually!

Shirley

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