[susanne13]

in reply to: Results after Total Thryroidectomy #1174832

Hi All,
I just wanted to reply because I haven’t been on in awhile and know when I was first diagnosed and figuring this crazy disease out this board helped me A LOT!

I was diagnosed with Graves’ in January 2010 and had my TT in May 2010. I have pretty much been on the same dose of synthroid since about December of 2010 – except when I was pregnant and I was at about 175 mcg consistently throughout pregnancy.

As you can see, it took awhile to get the levels figured out and I went through some depression and anxiety during that time. I do not regret having the TT, I feel SO MUCH BETTER NOW! But I definitely agree that thyroid issues do not go away. I only get levels taken every six months, but I feel like I can fluctuate during those six months. And I can tell when I am high or low, some symptoms come back – both hypo and hyper. It’s weird.

I think it’s just something we have to live with and deal with, hopefully you have the support of a family and friends, as well as a good endo and PCP!!! Best of luck to you!!!! And please feel free to message with any questions, comments, etc. IT can feel very lonely but you are NOT ALONE!!!!

-Susanne

[susanne13]

in reply to: Results after Total Thryroidectomy #1174831

Hi All,
I just wanted to reply because I haven’t been on in awhile and know when I was first diagnosed and figuring this crazy disease out this board helped me A LOT!

I was diagnosed with Graves’ in January 2010 and had my TT in May 2010. I have pretty much been on the same dose of synthroid since about December of 2010 – except when I was pregnant and I was at about 175 mcg consistently throughout pregnancy.

As you can see, it took awhile to get the levels figured out and I went through some depression and anxiety during that time. I do not regret having the TT, I feel SO MUCH BETTER NOW! But I definitely agree that thyroid issues do not go away. I only get levels taken every six months, but I feel like I can fluctuate during those six months. And I can tell when I am high or low, some symptoms come back – both hypo and hyper. It’s weird.

I think it’s just something we have to live with and deal with, hopefully you have the support of a family and friends, as well as a good endo and PCP!!! Best of luck to you!!!! And please feel free to message with any questions, comments, etc. IT can feel very lonely but you are NOT ALONE!!!!

-Susanne

[susanne13]

in reply to: Are my watery eyes due to Graves, or could I have an allergy? #1170353

It seems like your question has been answered and you are going to your PCP and it, but YES, I had crazy watering of just one eye when I was in the “midst” of my Graves’ symptoms (thanks, Bobbi, for the in-depth explanation, I never knew exactly WHY ). It was just drip, and I wouldn’t even feel anything until the tear would run down my face!! Best of luck to you!

[susanne13]

in reply to: Levels normal, feel off! #1170329

Ski and Bobbi,
Thank you both for your responses! It definitely helps

The anxiety around health issues is so heightened, I have had a colonoscopy and pelvic ultrasound in the past year (before I got pregnant) to make sure nothing was wrong and fortunately both turned up nothing!

And yes, whenever I get ready for a run, I am SO grateful to even be able to run a mile because there was a time in the midst of Graves’ symptoms when I could barely get up off the couch!!

Thanks!
Susanne

[susanne13]

in reply to: Pregnancy Question #1169154

Kennedy,
I have no idea if this will help you…I was in a similar situation, after being diagnosed in January 2010 and put on PTU because were thinking about having a baby. I ended up having a total thyroidectomy after A LOT of research and discussion. But yes, it’s true that your endo will not advise getting pregnant until your levels are stable and within normal range! Best of luck to you!!
Susanne

[susanne13]

in reply to: New GD Sufferer. Feel better when? #1061240

I had a total thydroidectomy (TT) in May 2010 and started feeling a lot better about October. However, I started to feel HYPO in early December. Although I knew this could happen, it was so different than being HYPER for me that it was a shock! My doc is on top of things and after an increase in synthroid, I started to feel better after about a month.

It’s been over a year since the TT and, although I became pregnant in February and have had to steadily increase my synthroid, I feel so much better. I definitely think it’s nice to know that although we all have our own timeframe, there IS a light at the end of the tunnel and you WILL feel better! Since being diagnosed (February 2010), I have learned to listen to my body, so don’t be afraid to call your doc or get your levels checked if you "feel" different/off.

I wish you the very best of luck!

[susanne13]

in reply to: Hypo post RAI #1062588

Nicholas,
Although I know everyone is different, when I was HYPO after getting a thyroidectomy, I took about a month to get back on track and it seemed like after every blood test, my endo was still increasing my Synthroid. I also still had weird HYPER symptoms (anxiety, hair loss) even though my levels were HYPO. The thyroid can so such ODD things!! Good luck with everything!!!
-Susanne

[susanne13]

in reply to: Recently diagnosed with Graves Disease… #1062567

Hi Brianna,
I know you have had a lot of great responses already but I thought I would share my story as we are almost exactly a year apart from diagnosis – I was diagnosed at the ER on 2/8/10. I was VERY hyper and had all classic symptoms and basically thought I was going crazy1 I first took PTU but it was damaging my liver and switched to methimazole, which brought my levels to the normal range.

As far as symptoms, as others have said, it can take awhile for them to go away, even if your levels are "normal". My hair continued to fall out (not nearly as much, thankfully) and my heart rate was no longer fast but still "strong". Knowing that I didn’t want to be on methimazole forever, I decided to have a total thyroidectomy (TT) last May. The surgery was completely uncomplicated and I had a wonderful recovery. However, I will tell you, as others have probably gone through as well, getting on the right synthroid dosage can take a long time! I went through a period where I was very HYPO and it was AWFUL! Making sure you have a good relationship with your endo is key – I knew something was wrong so I called and did my levels early and found I was indeed very HYPO. Of course as soon as I was "stable" I became pregnant and had to increase my dosage again and now get my levels tested once a month again ” title=”Smile” />

Anyway, everyone is different and I hope things work out for you however they are meant to! If you have any questions about TT or meds or anything, feel free to e-mail me! I know I had a ton of questions and found this board so helpful. Most of us have been through the crazy symptoms – anxiety, sweats, hair loss, tremors, exhausted but can’t sleep, heart rate and BP off the charts, etc – and IT DOES GET BETTER!! Sometimes you don’t think it will but it does, our bodies have been through the ringer and it takes time to heal!

Best of luck!!
Susanne

[susanne13]

in reply to: surgery???? #1065083

Similar to LHC and Kristi, I had a thyroidectomy on May 26th after being diagnosed very HYPER in February. I also weighed all my options and for a variety of reasons chose the TT. I also had an uneventful surgery and excellent recovery. My surgeon was a general surgeon who now only does thyroids, which I think is the best kind of surgeon to get.

I felt OK on ATDs but the first one (PTU) was damaging my liver and I knew that there was a possiblity of that with others as well. It’s been a month since surgery and I will tell you that I am feeling great. I have occasional fast heart rate but not nearly what it was, I am also still losing my hair (not horribly) but I also haven’t had my synthroid changed at all yet. The biggest difference for me has been working out and running. I have been a runner (ok, a jogger really) for the past 10 years or so. When I was HYPER I couldn’t run, even on meds I was able to run but very slowly and it was taking a long time to get back into the swing of things (understandably so and I was definitely giving myself a break). But now – I am back to doing my long runs and getting faster every week. I know that strength training and slowly building back muscle is important since we lose a lot with Graves’. Mentally, being able to run again has really helped me.

I know that we all have different experiences with all aspects of this disease, from symptoms to treatments to post-treatments so I guess all of these answers are relative! But it’s nice to know we are not alone and nice to know someone else’s experiences! Best of luck to you!!

[susanne13]

in reply to: Post-surgery update #1065294

i just saw your post, so happy for you!

[susanne13]

in reply to: Treatment options if want I to become pregnant #1065577

Hi All,
Thank you very much for the replies! Yes, I definitely want health first, baby second! I don’t think I mentioned that I do have a 16 month old and know the craziness that pregnancy (even though mine was super easy) and a newborn bring!!

I am weighing my options carefully and have a lot of questions for my endo when I see her tomorrow. I do want to make sure I am not going for the "quick fix" and instead doing what is right for me in the long run and not just right now. I think part of it is feeling crappy for so long and knowing that even though I could become hyPO after TT, I would NOT be hyPER! And I am guessing a lot of people have felt this way ” title=”Smile” />

A couple other questions that came out of the posts: what does it mean to have a mild case of GD? Also, in regards to breastfeeding, is methimazole absoluteley not safe while breastfeeding? I have read old studies that said so but recent information I read does allow for breastfeeding, including KellyMom.com?

Thank you again for your responses and I have a lot to think about!!
Susanne

[susanne13]

in reply to: Graves and Stomach Issues #1065662

Thank you all very much for your replies! I have been gluten free for almost four weeks and my stomach issues have gotten a bit better. The past two days I have cut out milk (not all dairy, just milk in coffee, cereal, etc), as well as bananas (random but we ran out and the ones I just bought are still green) and I have been SO much better the past couple days! We’ll see if it keeps up. I might get a Celiac’s test just to be sure since I am not worrying about cross-contamination right now and if I did have it, I would need to be more careful.

Bluewave – I will DEF let you know how things go! How random would it be if it was bananas?! I do eat 1-2 a day, every day! Thank you all again!

[susanne13]

in reply to: Thyroid Hair #1065722

Hi! You should try an all natural hair dye – you can buy them at Whole Foods or you can have it done at a salon. I did this when I was pregnant and it worked almost as well. Might be a little pricier but well worth it!!

I have had my hair highlighted since being diagnosed (February 2010) but since I have been on meds, I am not losing nearly as much hair and it doesn’t seem to be as damaged.

I wish you the very best of luck!
Susanne

[susanne13]

in reply to: Newly Diagnosed — How Sick were You All? #1065838

Ug, I forgot the SWEATING! Even in Winter, I would sweat profusely and always have to explain to people "I have heat issues" because I guess it IS stange to be in a tank top in 30 degree weather and STILL be sweating ” title=”Very Happy” />

[susanne13]

in reply to: Newly Diagnosed — How Sick were You All? #1065837

I also had most of those symtoms: high heart rate (120) and blood pressure (170/90), hair falling out, tired but "wired", very, very shaky and tremors! The shakiness sounds a lot like what you had, I would get out of the car and feel a weird sensation go down my legs! I went from running a half marathon in May 2009 and a ten-miler in October to barely having the strength to run at all. And I had crazy heart palpitations and I felt as though my heart would beat out of my chest (what lead me to the ER where I was diagnosed). Plus I DID (and still do) have weird stomach issues – nausea included. I definitely still have bouts of depression and feeling down. I have been on my meds for about two months and so many of my symptoms have gotten better, but not all of them. It took me this long to get back to running regularly but not nearly as fast or far as before. As someone else said, there is SOME improvement every day, even if we can’t see it. Best of luck to you!!!!!

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