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BSHAVER3's Photo BSHAVER3 SparkPoints: (12,778)
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5/22/14 8:53 P

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HI, my name is Beth and I was "officially" diagnosed in 2003 after developing double vision. A previous doctor had found the antibodies in 1996 but did not make a diagnosis of Graves. I had full blown TED and have had several surgeries to fix my eyes. They are doing pretty good now. I have a lot of the other things that go with Graves, but I try not to let them get me down. It just isn't in me to give in to anything. It seems contradictory to have hyperthyroidism and a weight issue, but it happens. Glad to find this group.

Beth


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SERENA19751's Photo SERENA19751 Posts: 4
5/1/14 12:19 P

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hi my name is serena I found out that I had graves and hyperthyroid the end of jan this year and since than have had the rai and am on heart med. I have lost 20 pounds with not doing anything because of the illness and I don't want to gain it back since I was trying to lose weight anyway. I am trying to find a way to make sure I don't gain it back I just had the rai done apr 17

i need to lose it again


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GR8MUM's Photo GR8MUM Posts: 21
4/24/14 2:12 P

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Hi! I'm Amy and I've had Graves' Disease since my middle child was born, 16 years ago. It came back with full force after the birth of my youngest, my daughter that is now 27 months. I'm a single mom and so I have found it extremely challenging, especially since my daughter has sleep issues and would wake up every half hour for the first year of life (screaming) and still wakes up hourly. I need my sleep! My thyroid is overactive, but I'm still overweight. I haven't been able to get the radioactive iodine uptake test done as my daughter still nurses, due to food allergies. Hoping to wean her soon, but again that's another thing that's difficult, being on my own. I have found some relief to my symptoms with diet. I also have mastocytosis (mast cells out of control, I have a lot of severe allergies), hearing loss due to an MMR vaccination a few years ago and a couple migraines a week.

***edited to add, I took PTU for my thyroid the first time around and it wiped out my immune system and did liver damage.

Edited by: GR8MUM at: 4/24/2014 (14:14)
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2/26/14 7:15 P

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Thanks for the encouragement. I stopped methimazole about 3 weeks ago . Just monitoring for now. Had been on it for 3 years. My endo was worried I was becoming hypo because my TSH was going up. I expect that at some point I will have to go back on it.

I did start walking this past Sunday when the weather was nice. We've had a very snowy winter so its been hard to go outside and I HATE the gym. Will bike tomorrow ( my bike is on a trainer) and watch the last episode of Downton Abbey which I missed last week.

I haven't had plantar fascitis or heal spurs, but I have had achilles problems and shin splints as well as pes bursitis. Fortunately, I found an orthopedic guy who is a runner and always tells me to go back to running after the injury/pain resolves. the mild arthritis in my knees always feels better when I'm exercising regularly.

Glad to find another Graves patient who runs!



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NEVERMIND2010's Photo NEVERMIND2010 Posts: 577
2/26/14 7:26 A

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Oh Sandy, my heart goes out to you! I have been so lucky not to have Grave's related eye disease, but I worry about it all the time.

It is depressing to know that you've lost so much fitness, but you know what it feels like to be fit, and that it's worth it to try to get back there. I've had to stop/cut way back on running because of plantar fasciitis and now heel spurs, and it is a vicious circle - the less I run, the more weight I gain, and the more weight I gain, the harder it is to run. :(

I wouldn't try to run, but can you walk? Do Couch to 5K, but with fast walking instead of running intervals? Yoga/pilates to work on your core? Swimming? Water aerobics? Anything to get fitter!

I'm curious if there is a reason you are still using suppressant drugs? My doctors have been pretty adamant about my getting off of them. (And yet here I am, almost 5 years on carbimazole.)

Good luck and keep checking in!

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2/15/14 11:52 A

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Hi, all. My name is Sandy and I was diagnosed with Graves in 2010, and the rapidly developed a particularly severe form of thyroid eye disease about 6 months later. I manage my Graves with methimazole and have had 7 + surgeries on my eyes over the last 3 years. Between the Graves' disease management , the steroids for my eye disease, menopause, and the stress of it all, I have gained a tremendous amount of weigh. Just before my eyes got really bad, I completed my first ( and only) triathlon. Can't run anymore at this weight, and need to get my diet back under control.

Looking forward to connecting with others

Sandy

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NEVERMIND2010's Photo NEVERMIND2010 Posts: 577
2/10/14 2:46 A

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Hi Ezara. I had RAI in October and continued on my suppressants until mid-December. By late January, I was hyperthyroid again and had to go back on them. Has you doctor not kept you on suppressants, or were you never on them at all, since you had RAI so soon after being diagnosed? I waited almost 5 years after definitive diagnosis (and more than ten from the first inklings that something was wrong)

My doctor has told me that they don't consider RAI to have failed until after one year has passed. Nonetheless, I am fairly bummed to be back on thyroid suppressants (and sometimes beta blockers) again. Unfortunately, I never had the weight loss with Graves, but I sure had all the other symptoms!

I hope yours settles down soon.

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LAELL303 SparkPoints: (18,692)
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2/8/14 8:57 P

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Hi!

My name is Ezara and I was diagnosed with Graves in November of 2013 and had RAI in late December. I am still experiencing many of the symptoms involved with Graves such as the sweats and not sleeping much. The weight loss from Graves has been great but it is already starting to slow down. I wanted to make sure I had my appetite under control before I went hypothyroid.

This has been an interesting journey so far to say the least!

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SMILINFLYGIRL's Photo SMILINFLYGIRL Posts: 19
2/4/14 9:28 P

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Hi, My name is Pam and I have battled Graves disease for the last three years. After RAI I now tend to go Hypothyroid..but my levels are pretty well controlled with Levothyroxine...unfortunately..with this medication and my desk job I have gained so much weight! So here I go!!!!

Also if anyone is looking for a great source of information for Graves or Hypothyroidism (After RAI) ...check out facebook page :Thyroid Sexy!


Would you rather be sweating in a Gym or covered up on the beach.


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CHAR8026's Photo CHAR8026 Posts: 545
12/11/13 11:56 A

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Hi, My name is Char and I am new to this board. I am trying to bring back this team page, because anyone who is suffering from any thyroidism issue is in need of support. The fatigue, out of control heart rate, dizziness, tremors are all issues that don't get enough attention. So please introduce yourself here, and I will try very hard to answer back. I usually don't post on weekends, or if it is a really busy day, but for the most part I post every day.

I am trying to lose around 35 lbs, and with hyperthyroidism I find it more challenging than it has been in the past. I also have a 2 year old son, who is my pride and joy.



Kelli (char8026)
Boise, ID

"Be who you are and not what you feel, because those who mind don't matter and those who matter don't mind." ~Dr. Suess.



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SHAMROCKS40104's Photo SHAMROCKS40104 Posts: 3
1/4/12 3:09 P

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Thanks for the info! I'm glad to know I'm not crazy. I'm seeing my Endocrinologist next week and if she doesn't do something about it I'll definitely seek a second opinion. My symptoms have become more intense recently so I've slowed down on cardio until I talk to the doc.

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NEVERMIND2010's Photo NEVERMIND2010 Posts: 577
12/19/11 2:54 A

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Hi, Shamrocks!

I started that way - everything was borderline, including ultrasound and nuclear scan. I wasn't having tremors and dizziness, though - that's not good. Have you told your doctor? I would say find another doctor, but if your are in the US, I know that's difficult. Plus, they tend to only look at numbers, so a 2nd opinion would probably be the same as the first. However, since you haven't had your levels checked since June, you might see a change there, too.

I will tell you this; my HR was going up into the 180s (and above) when I exercised, and even after a year of working out, I couldn't get it back down below 140 until I got off the treadmill. I went two days ago (on beta blockers and higher suppressant dose), and it went up to 122 and went back down to 100 within 5 minutes of stopping running. That's what it SHOULD do. That super-high heart rate is not normal. When I told my GP about how high it had been going, she picked up the phone and called the cardiologist IMMEDIATELY. Tachycardia is a bad, bad thing.

Good luck!

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SHAMROCKS40104's Photo SHAMROCKS40104 Posts: 3
12/17/11 12:54 P

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Hi all,
I'm new here and I'm not sure if I'm posting this correctly, but here goes.

I was diagnosed HT in June. I have all the symptoms, but my numbers aren't terribly high so my endo says I can go without treatment for now. I've definitely been losing weight, which I like, but I'm worried about exercise.

Is anyone else untreated and going to the gym regularly? I find when I run my heart rate goes through the roof and I always end up with tremors and dizziness afterwards. Today I'm dealing with nausea and headaches too and sometimes the fatigue is pretty severe. I know I probably need to decrease my intensity, but I'm not sure if there's anything else I could be doing to allay the symptoms. Help?

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EMS-WIFE's Photo EMS-WIFE Posts: 820
12/15/11 8:21 P

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Just read your blog. AWESOME!!!

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


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EMS-WIFE's Photo EMS-WIFE Posts: 820
12/15/11 8:18 P

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So sorry to hear about your condition. I was lucky enough to stabilize on meds and then be able to taper off over a couple years. I hope the treatment works well for you. With the suppressive meds we tend to be prescribed, it does make it much harder to loose weight. Remember to journal your food intake, incorporate weights with your aerobics and don't eat too little. You don't want your body to go into starvation mode on top of everything else.

Let me know how you are doing. Best wishes

Sophy

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


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NEVERMIND2010's Photo NEVERMIND2010 Posts: 577
12/11/11 5:05 A

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Hello all. I'm here because I was told today it's time to have radiotherapy. I've had a goiter for about 8 years and been hyperthyroid for at least the last 3 (Graves). Thyroid suppressant hasn't really worked for me, and I've been taking it for over 2 years. And I'm one of the lucky ones who has severe hyperthyroidism and still can't lose weight. I can't imagine what it's going to be like when I lose my thyroid function! I'm really freaking out right now, to be honest. I'll be reading through to find out what others' experiences have been. Thanks!

Edited by: NEVERMIND2010 at: 12/11/2011 (05:12)
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FAVORED_ONE's Photo FAVORED_ONE Posts: 7,804
9/25/11 2:39 P

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As of right now I am not on meds and normal. So I am hoping I stay that way when I see my Endo in October. I was really suprised when they told me that I had to quit the meds after 3 years. I thought as long as it was working I could take it.

Julie or Jules

(Fort Dodge, IA)

http://JulieThielen.EatLessFeelFull.co
m

"Faith sees the invisible, believes the unbelievable, and receives the impossible." Corrie Ten Boom

My heart and my flesh may fail; but God is the strength of my heart and my portion forever. Psalm 76:23

For with God, nothing shall be impossible. Luke 1:37


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DARK^PRINCESS's Photo DARK^PRINCESS Posts: 50
9/25/11 1:43 P

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I have Graves disease diagnosed 2003 and have been on PT med for most of that time. I never heard you could only be on the meds for only 3 years. My endo says I'm doing fine, usually tells me I'm boring :), visit with bloodwork every 6 months and an ultrasound scan every year. It did take several months to achieve normal. He tells me every visit that RAI or surgery are always an option, not pushy though I guess he does this cause it is the most common way to treat hyperthyroid

since the PT med keeps me normal I don't plan to do RAI/surgery unless the med stops working or I get thyroid cancer/other problem

To be nobody but yourself – in a world which is doing its best, night and day, to make you everybody else – means to fight the hardest battle which any human being can fight; and never stop fighting.
ee cummings


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FAVORED_ONE's Photo FAVORED_ONE Posts: 7,804
9/20/11 9:27 A

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Hello Sap. I am hyper with hypo symptoms. As of right now I am on nothing. My thyroid is producing normally. Of course, that comes after 2.5 years of being on Methimazole (Tapizole). that was my treatment. According to my Endocrinologist that can only be taken for up to 3 years. So If I start having problems again I will have to take it for another six months and then they will either destroy or take my thyroid. But either way I count every day a blessing from God. I had come to the point I was just laying and staring at the ceiling because I had no energy. Now I am in school full time and keeping up with my husband and daughter. I know that some days I have to nap more and they have taken on more responsibility because if they don't I wouldn't be able to go and do all that they want to do.

I know there are a few others on spark with the same hyper/hypo. One in particular is on Doing the Dukan team with me and she is doing great.

Julie or Jules

(Fort Dodge, IA)

http://JulieThielen.EatLessFeelFull.co
m

"Faith sees the invisible, believes the unbelievable, and receives the impossible." Corrie Ten Boom

My heart and my flesh may fail; but God is the strength of my heart and my portion forever. Psalm 76:23

For with God, nothing shall be impossible. Luke 1:37


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SAP_SORROW's Photo SAP_SORROW SparkPoints: (4,749)
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9/20/11 6:49 A

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Hello!

I guess I've yet to received an on-paper diagnosis of hyperthyroidism (symptoms of underactive thyroid), but I've just restarted the process.

My doctor about a year ago noticed the thyroid gland on the left side of my neck was enlarged, and my hormone count is a -pinch- off, and after going through almost the entire process (right before I had a biopsy done), I had to move (long story). So now that I have a regular doctor again, I just started the diagnosis process again.

Naturally they're also checking for thyroid cancer, but with my history of depression, fatigue, ADD, and unexplained rapid weight gain and loss, they're about 95% sure it's an underactive thyroid issue.

I guess I'm okay with this ... it explains a lot, though I wish none of us had to ever experience any of it. And I'm a little scared about the treatment options. ._.;;

I think I've finally come to the point in my life where I'm happy with myself and know that I don't have to change or be a certain way for people to like me anymore. I'm just fine and if someone doesnt think I am, screw them.
- Anon -


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THEMIDDLEKID's Photo THEMIDDLEKID Posts: 11
8/16/11 10:29 P

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Hi all! New to this team. I am just beginning to try to figure this whole hyper thing out, as I was just diagnosed last week. Going to the endo on Friday. What do I need to be asking? Thanks!

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FAVORED_ONE's Photo FAVORED_ONE Posts: 7,804
8/12/11 7:55 P

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Hi my name is Julie and I recently was told I had Graves. I have been on methimazole for almost two years. As of a month ago I am not taking the meds. Its seems I don't have any symptoms right now. I was told that I needed to let them know if I have any symptoms and skin conditions. Right now I am looking for a list of those symptoms. The one thing I've noticed is that my neck is always itching. I remember from when I first started having problems that it always itched. I told my doctor and she said that it wasn't a symptom.

Julie or Jules

(Fort Dodge, IA)

http://JulieThielen.EatLessFeelFull.co
m

"Faith sees the invisible, believes the unbelievable, and receives the impossible." Corrie Ten Boom

My heart and my flesh may fail; but God is the strength of my heart and my portion forever. Psalm 76:23

For with God, nothing shall be impossible. Luke 1:37


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TECHWORM's Photo TECHWORM Posts: 32
4/24/11 6:49 A

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Hello. Happy Easter! I just found out 2 days ago that I have officially have Grave's disease after having a phlethora of tests. I opted for the medication route. In December I developed symptoms and lost 40 lbs in 2 months. This of course was very odd, because I wasn't trying. Ironically...I started using some new "natural" products in November...one of which was an anti-aging neck cream. In March as I was slathering it on my neck, I wondered what was IN it. Much to my surprise, algae extract was the number 1 ingredient. Algae produces 70% of the world's iodine. Needless to say, it is my theory, not my doctor's, that using this neck cream triggered my thyroid into hyperthyroidism.

I am hoping that discontinuing the product and taking medication will get me on the right track. Plus~~~~ I need to keep the 40 lbs off AND keep losing 60 more lbs.

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BARB0226 SparkPoints: (2,314)
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2/10/11 7:58 P

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Hi, my name is Barb and I was diagnosed with Grave's in 1997 and had the fortune of having weight loss as the last symptom to emerge, after diagnosis. After struggling for years with weight issues, I asked my doctor to let it go a little while longer - this was the disease I was looking for my whole life!! He passified me with a statement about letting me go until I weighed 30 pounds - which I wasn't objecting to...but we did decide to try treatment instead. I tried the medications for the first year and eventually had the RAI. The RAI was great in treating the disease however I started to battle hypothyroid shortly thereafter. I have been relatively stable for the past 12 years with only slight tweaks in my synthroid levels. I have my eyes checked regularly since the exopthalmos (bulging eyes) could occur at any point. So not to deprive my body of having just one auto-immune disease, I was recently diagnosed with an auto-immune liver disorder called Primary Sclerosing Cholangitis. Interestingly there is some talk in the science community about a potential relationship to Grave's. So now I need to lose the weight & get in shape because I am going to need a new liver one day and ironically I am not able to do strenuous exercise due to its impact on the liver. There is life after treatment, you just need to keep active. How I would love to just blame my thyroid and the fact that I am now 43 but in all honesty its about the lack of exercise.

CHANNNNB's Photo CHANNNNB Posts: 8
2/2/11 9:16 P

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HELLLO!

My name is Chan im 18 years old. i was diagnosed with graves disease October 2010. I went down to college in GA and i had all of these symptoms and problems, the restless leg, the palpitations, eating problem, sweating i was in and out of the hospital from the time i got there which was in august until early October. the hospital told me i had a yeast infection and a UTI, i was like something isnt right i was on 6 meds at the time with no improvement. So i went to the health services on campus, remind you i had been to the hospital multiple time so i had no hope. The first time i went there the womens health doctor diagnosed me with a bad yeast infection as well, so that was fine.

So the same symptoms i had kept reoccurring, so i went back. I told the doctor this time im not leaving until i get answers so i told him my symptoms and he immediately said you need blood work done, he must have knew what to test for because when the nurse called me with the results i didn't know what she was talking about, "your tsh levels" blah blah, i thought i was dying! I had to get more blood work and nuclear tests done on my nodules and my glands, and after all the tests i was finally diagnosed with something.

Graves disease. It has changed my life. i had to move closer to home, now i'm at a community college in my hometown. The doctor told me there is a 90% chance i may not go into remission. SO with all this being said i'm here, working on a better me for me, and my health, and this silent disease.


I go back to the doctors in march to decide if i have to get radioactive iodine therapy, so i want to start on the right path today with getting my weight down, and having a better life.


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AAPRUETT's Photo AAPRUETT Posts: 7
1/21/11 11:47 A

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Hello!

I am 24 years old, and was diagnosed with graves diseas almost a year ago. 2010 was an intensely rough year with starting medication and all the effects of that on my body. I wish I had known earlier that I had graves. I always thought I was just "wimpy" that I couldn't run the WHOLE mile and had to take so many walk breaks. Who knew my heart was practically flying out of my chest!

I have gained almost 30 pounds from before the medication... I took a 3 month "sloth" period because the Tapazol & Toporol made me so tired all the time. I took naps on my planning blocks at school. In the past few months things have been getting better. I did the radioiodine treatment right before Christmas, and I am waiting for my next Doctors appointment to see what my levels are down to.

I have been eating right/working out consistantly but am having trouble shedding these pounds. I am getting married in November and I bought my wedding dress before I was diagnosed. I hope I can shed these pounds!!

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CHRISSYJ07 SparkPoints: (0)
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1/14/11 9:23 A

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Hello everyone!! My name is Christine. I am 21 years old with no children. I was diagnosed with graves disease 11 months ago and am still undergoing treatment.

I like walking and I run at my own pace because I still have difficulty keeping my breathing under control. I like to watch various TV shows including CSI Miami and Football after work.

PIFLAY Posts: 1
12/28/10 7:54 P

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Hi Team!

I was diagnosed with Graves mid-2009. After struggling with my endo and other side effects with medicating with Methimazole, I went to get a second opinion. My 2nd Endo was amazing and set up my RAI on the spot. As of Aug 2010, I have no more thyroid. I just started replacement hormones at the beginning of December after a horrid weight gain. I'm back to the weight I was 5 years ago when I vowed to myself never to get that high again.

I didn't have the typical weight loss with my Hyper-life of Graves, instead my symptoms were mainly the severe tremors and I guess heart palpitations and migraines (the last two I never noticed aside from the constant headaches).

I got married in July, so to not even be able to fit into clothes that I JUST bought on our honeymoon is to say the least, depressing. I'm starting to feel the effects of the replacement hormone after almost 4 weeks. I'm hoping that this will aide in being able to peel off some of these unwanted layers that have made their home on my body.

CHEERHOLLADAY's Photo CHEERHOLLADAY Posts: 48
12/16/10 11:03 A

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Hello. I was diagnosed with Grave's Disease in June. In July I had the radioactive iodine treatment and now I am trying to get my meds regulated. I have had success in the past with losing weight, but with the meds not being regulated just yet it is a struggle to stay at the same weight. Before the radioactive iodine treatment my body was literally running a marathon at all times. I could run for miles on end, but I never got any good out of it. Now all the weight that I lost has come back on and I'm struggling to just stay where I am. Hopefully that won't be like that for much longer.

"It's not the size of the dog in the fight, it's the size of the fight in the dog." -Mark Twain

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PASHLEY7384's Photo PASHLEY7384 SparkPoints: (0)
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11/2/10 1:48 P

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Keya, you are strong and very blessed for having 3 children! i also had a son with graves, but they kept me on my meds (thank God)--i have heard many horror stories of women who did not find out they had graves until they had one or more miscarriages/sill birth, because graves disease literally killed the baby. it's really important to stay on meds if you are going to have a child.

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11/2/10 1:45 P

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hi, my name is ashley. i just joined today. i have had graves since i was 14, i'm 26 now. (married, 7 yr old son, getting my masters in pastoral counseling)
I was forced to take radioactive iodine when i was 17, because they advised my parents that if i did not, i would stroke out by age 20. now i have to take levoxyl every day FOREVER. i know you all can empathize...my thyroid is never stable for long. right now i'm on .125; last year i lost 25 lbs, and i've already gained 30 back. lol, story of my life!

MRSGOAL150's Photo MRSGOAL150 SparkPoints: (320)
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9/12/10 1:38 A

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Hi my name is Keya and i am new to this website. I have Graves Diseases as well. They found it when i was pregnant with my 3rd child. Well i was pregnant in my 6th month i went to the drug store to pick up some med. and just playing around with the blood pressure cup I seen that my blood pressure was like 160/99 so I ask the them was that ok, they told me I need to go and see my doc right away. So I did, they check me for everything they could think of and they couldn’t find anything. When I went in to have him they had me stay on my side because my blood pressure was 200/115 after have him they put me on some meds. I came home after been at the hospital for todays and I end having to go back to the hospital cause I couldn’t breathe, sleep and I was weak. Now I take thyroid replacement every morning.

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9/12/10 1:25 A

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Hi my name is Keya and I am new to this site. Yes, I have been pregnant with Graves’ disease. I was pregnant with my daughter and it wasn’t as bad as I thought it would be. They had to up my meds and I had to have a lot of doctor apt. so they could make sure my daughter was ok. At the end it was uncomfortable because I wasn’t dilation. I went two weeks over due and they had to induce my labor.

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TAMARALJC Posts: 1
9/1/10 9:38 A

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Hi my name is Tamara and was recently diagnosed with Metobolic disorder in addition to hypothyroidism so I'm not sure where I fit in on this sparks page but I need support somewhere so I'm hoping to start somewhere.

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LATENEL's Photo LATENEL Posts: 12
8/13/10 6:16 P

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Hi all. My name is Laura and I'm 32. In August of '07 I went to my normal yearly exam at the GYN. My blood pressure was taken and was found to be 200/50, so they knew something was wrong. After extensive blood work I was called and told I have Graves and that I was being scheduled for Radioactive Iodine the next week. I also began taking heart medicine for my blood pressure. Within 4 months of the Iodine and pills I had gained almost 70 pounds. When I asked my Endo why as Graves usually causes weight lose, he said I don't know and walked out of the room. I finally have a good Dr. who just took me off of the generic Levothryoxine and put me on Synthroid, so I want to get back to my before.

One must work and dare if one really wants to live.
Vincent Van Gogh


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JANDERI02's Photo JANDERI02 Posts: 3
8/11/10 10:32 P

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Hello,

I've had Graves and hyper since 2007. I had lost a good amount of weight and gained it back and some when I started taking PTU. A year later I no longer had insurance so I was not able to get the meds. So I found an all natural thyroid support supplements. It has been great because I don't have the symptoms and its all natural. With that being said I am not sure how my levels are because I have not been able to see an endo. The weight problem as not as bad, I feel that with the supplements it's easier to lose weight than it was with the PTU. If any of you know or have tried natural remedies that work. Please feel free to share. Also can some of you share your stories on how it was to conceive/be pregnant while having thyroid problems.

Thank you!

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STEPHIEJ29's Photo STEPHIEJ29 Posts: 68
8/10/10 8:32 A

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Hi, I was diagnosed with hyper/graves in 2005. Being young and quite dumb I chose not do do anything about it. Last summer after 9 days of a headache and feeling quite crappy I went to the ER I was told I had migraines and allergies. I waited until Monday and went to my doc and found it was my thyroid. I take Methamazole everyday. I love the feeling when my thyroid is normal but I hate trying to lose weight while it is.

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VAHLARIA Posts: 32
8/5/10 3:05 P

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Hi all. I was diagnosed with graves/hyper in 07. I've had it for longer. Thankfuly I ended up in an emergency room with a great er doctor that didnt think it was in my head, and said...you have hyperthyroidism. I hadn't slept in three days, and lost 20 lbs in less than a week.

I've been on ptu (can not take the other med) for 18 months, and am now dealing with having to do the radioactive treatment. I've been at high normal for eight months now, and am just not getting better.

Hoping I will be doing the right thing.

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CHEAPPSYCHOLOGY's Photo CHEAPPSYCHOLOGY SparkPoints: (19,207)
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5/14/10 8:16 A

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Hi everybody, I was diagnosed this year after a scary emergency room visit. The first time round nobody every mention the chances of Graves disease and I merrily went into overdrive after being stable. Lots of running like 10km a day for 30 days straight and supplements galore (all containing iodine)

I am working on being completely stable and am now going to start eating very low carb to see what effect this has on continuing to be stable. I know that after two overactive episodes my chances of avoiding either an operation or radioactive treatment are low but I am determined to at least try.

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MARYHORNE1 Posts: 29
5/5/10 7:07 A

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Hi this is new to me so here goes. I eat to hide feelings. I am a survivor or sexual child abuse and also mental abuse all through life.I have graves / thyroid desease,asthma, high blood pressure,diabetic,bone deteration in back. Divorced after 26 yrs of marriage cause he was tired of a sick wife and Wanted to spend money. I recently ( sept 09 ) lost my soul mate and love. He took me to the er and as I was being seen He dropped dead. Its been hard for me to even want to go on. But the pain mental and physical is getting to much to bear. Maybe this is a small beginning.

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GEEK_MYSTIQUE Posts: 15
5/4/10 8:53 A

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Hi HT/GD Team!

Just thought I'd introduce myself. I decided I'd join SparkPeople after reading an article about it on a news website and realizing that many of my nutrition and fitness websearches kept bringing me here.

That's the how I got here, how I got to where I am weight-wise is a whole other story. I have had my battle with weight before, losing over 50 pounds with WW. I managed to keep it off for 5 years, and then over the last 9 months I gained over 30 pounds. I thought I was going crazy, I was becoming very apathetic and lazy, and fitness-wise I falling apart. No strength, no energy, no sleep. I turned 30 last November, and I joked that I turned into my Grandmother overnight, as I was so weak and achy from inactivity. I had started a new position at work in February, and my brain was so out of whack that my new co-workers were getting the impression that I was a disorganized and lazy employee, which is not my typical MO. A few weeks ago I found out I have atypical Graves disease. Here I was, assuming I might be HYPOthyroid, but it turns out I'm in the (not-so-) lucky 10-20% of hyperthyroid people that gain weight. My normally tachycardic heart was even worse (averaging 130-140 resting), so I am now on a beta-blocker as well as an anti-thyroid. I am planning to have the I-131 treatment, but I'm still weighing out whether to go the nuclear medicine or pharmaceutical route. My mother was hyperthyroid in her late 30s, not Graves though. She underwent irradiation, and has been on synthroid ever since, so I'm under the impression it's pills right now or pills later...

Anyways, I'm dedicated to getting myself back where I was (or better) at the gym and on the scale. It is refreshing to see that there are a number of people on this site that are dealing with both their weight and their crazy hormones!

Best wishes to all!

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KBREWER78 Posts: 1
4/19/10 3:18 P

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Hello everyone! I am in my early 30's, and was diagnosed with Grave's Disease quite a while ago. I have had trouble keeping my levels normal, with the exception of my pregnancy with my now 4 year old. I am also new to spark. When I was first diangosed with Grave's, i was given three options; medication, surgery or take a small pill that would significantly lower my thyroid homone production. I went with the small pil, that was actually a very large, radiation pill called I131. i was in my early 20's at the time. I am excited to find you all on here, and have someone to share with. Good luck to all!

ADONNER's Photo ADONNER Posts: 16
4/17/10 8:34 A

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Hello everyone. My name is Amanda and I'm a 28 (almost 29) yo wife and mom to a 3 year old girl. I just got diagnosed with thyroid disease last June. My endo is completely positive about what type of thyroid disease I have, but is treating it as Hyperthyroid/Graves disease b/c of slightly off blood test numbers and graves symptoms.
I first started having an irregular heart beat about 2 years ago. This was followed by high blood pressure 3 months later. Had a complete cardio work up and everything showed a healthy heart. Finally, in August 2008 I discovered a knot in my throat. Went in for an ultrasound and blood work and never heard back from my primary physician. When I called, I was yelled at by the receptionist and told "They will call you if something is wrong." Never heard back so I assumed I was fine.
In June of 2009 I went in for my yearly physical with my OB/GYN. She told me my thyroid was swollen and suggested I question my primary about the ultrasound. Well low and behold, they were supposed to refer me to an endo. back in Aug of '08. They "forgot" to inform me. They did get me in to the endo the next day amazingly. I think they were trying to cover their butts, lol.
After many tests at my wonderful endo's office she found that I have 3 goiters on my thyroid, a high antibody count and a somewhat low number on my THS. I definitely have an autoimmune disease of some sort and she suspects hyper/graves because of the heartrate, b/p symptoms and also a significant, "thyroid tremor". I have no weight loss however. I also have no gain. I sit at around 197 which is down about 10-20lbs from when my dd was born in 2006. She thinks I caught this in the beginning stages before I started having more noticeable symptoms. She is treating me with meds for the symptoms. I don't take much, just 10mg of tapazole every morning. Enough she said to get some balance. In June I am going to take a 5 week break from the meds and retest in July to see if things have balanced out. I am also going to get another ultrasound to see what is going on with the goiters.
I have decided to lose my excess weight (50 lbs) before this summer, just in case my thyroid goes haywire and it starts to become difficult to lose weight. I also figure the weight loss will help with the b/p issues, which I still have. Sorry so long. It is nice to see that I am not alone in this though. I was starting to think that I was the only hyper/grave's person out there that had to lose weight.

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BAEB47's Photo BAEB47 Posts: 55
4/9/10 1:13 A

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Hi! I'm one of those who had no "unexpected weight loss" with Grave's ... I struggled valiantly to lose 22 pounds (from 209 in 2006, to 187 in 2009) in three years, until I had a thyroid storm on February 14, 2009 and was hospitalized for four days while they got everything under control again. The endocronologist put me on PTU ... which lasted about a week (just long enough to be able to spell and pronounce it!), until I had a nasty reaction to it ... my face blew up like a puffer fish, and I had lips like Angelina Jolie (my own are really thin!). After that, I was put on methimazole.

A side benefit of the methimazole appears to be a reduction in my psoriasis! I went from having it scattered all over my body, and super itchy, to contained mostly below my knees, and only mildly itchy occasionally. When the doc thought my thyroid was under control, and took me off the meds, I had a psoriasis flare! When he put me back on it, the p got better, too!

He had warned me that as the thyroid lost function, I would gain weight ... and was he ever right! Thirteen pounds came back in less than six months, in spite of me trying to watch my weight. So far, I've managed to keep my weight at 200 pounds or less. I've lost down to 197 three or four times now, but it keeps coming back! It really gets discouraging. I'm so glad I found this support group! I don't know anyone around here who is going through the same thing. It's great to finally have some people to "talk" to who understand what I'm talking about!!

I know exercise would do me a world of good, but with the psoriasis, if I get hot (heaven help me if I sweat!), it flares ... and it can break out in some very inconvenient and uncomfortable places!!
I look forward to learning more about how to deal with Grave's with your help!
~Bev

Philippians 4:8 - Finally, brothers, whatever things are true, whatever things are honest, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report; if there be any virtue, and if there be any praise, think on these things. (American King James Version)


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ILOVEMY2BIRDS's Photo ILOVEMY2BIRDS Posts: 2,646
3/31/10 7:16 A

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I was diagnosed with Graves in 2007. I have been taking PTU, propanolol(beta blocker) and Diovan (BP med) since then. Actually I was on BP med since 2001 but my thyroid levels were OK at that time so I didn't know I had Graves yet.
I started on 300 mg of PTU a day and am down to 100.

KATDOG76... I agree that RAI should be last resort! The docs seem to take it so lightly but it is killing an important organ of your endocrine system. If it can be controlled by meds then I see no reason for it.

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SARAHTHOMAS3's Photo SARAHTHOMAS3 Posts: 7
3/20/10 8:23 P

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Hey! My name is Sarah, and I just found out that I have hyperthyroidism. I started feeling dizzy and shaky in February and I lost weight faster than I normally do. I had some blood tests two weeks ago that signaled hyperthyroidism. I went into a thyroid storm (during spring break), and got out of the hospital this week. I don't have an endocrinologist appointment for another two weeks, so I'm surviving by taking beta-blockers and ativan until then. It's just really frustrating to deal with this in my last semester of college, when things really matter.

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KATDOG76's Photo KATDOG76 Posts: 6
11/27/09 9:57 P

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Hey there. I'm new to SP. I was diagnosed in 2006 with Graves and have just achieved remission for the second time since then, both times after about a year of treatment with methimazole. The endo first recommended RAI because of my minimal health coverage, but it felt like a hasty first step. It's the last choice in every other developed country and the first here. It's not as simple as it seems, so I would recommend that anyone newly diagnosed to get on medication to control their levels and take time to really get to know your condition, read all you can and decide what course of treatment feels right to you.

I've noticed time and time again that the doctors simplify everything and there's no going back once you kill an organ essential to your survival. Do your research, you can always decide to take that step if it becomes the appropriate choice.

Glad to have found you all.

:)

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CAREMAY04 Posts: 3
7/27/09 11:22 A

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My name is Melissa, I am new here. I was diagnosed with Graves' Disease back in 2001 where i lost 60 pounds in 3 months and since gained it all back plus more, have a child during that course in 2005 and looking to get the weight off, my thyroid is balanced though, but this looks like a good support group for ppl with the symptoms etc.. for Graves

BAILEYBUGSMOM's Photo BAILEYBUGSMOM Posts: 23
6/24/09 12:35 P

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Hi! I was diagnosed with Grave's disease exactly one week ago. It started off with a large Goiter. My first doctor said that there was nothing really wrong that it was more "cosmetic" and not to worry about it. Next I started to have what i thought was an irregular heart beat. My dad convinced me to see another doctor and he immediately sent me in for several test. I wasn't given a lot of information on Graves Disease, so i turned to the internet and to me i didn't seem to have too many of the symptoms, I am gaining weight, not losing and a few of the others but the weightloss is what has stuck in my mind. I haven't been called about my appointment at the endo yet so i do not know exactly what will happen or what my options are. I am so glad that I found this SP team, so that i can maybe learn a few things and learn about everyone's experience with this disease.

JENOVEVA's Photo JENOVEVA Posts: 7
6/9/09 10:56 P

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Hi, I was diagnosed with Grave's disease in Feb. 2004. I didn't have any noticeable symptoms. My basal temp is normally 96.8 to 97.8. I have even gone as low as 96.2. I am cold intolerant. Overweight. I have a small goiter but, because I am overweight, it isn't noticeable at all. I have been off and on PTU since day one with this.

I have a real jerk for an endo. I am an RN so I know what I am saying. He told me, when discussing the cons of RAI ablation, that he has NEVER had a patient react badly to it. I told him my own daughter (she also had Grave's, then RAI and is now hypothyroid)had a terrible reaction to the treatment. Asked him about the thyroid "dumping" after the treatment. He said he NEVER has heard of that. I quoted a few medical journals I read online about that..and he was stuttering, "Well, it has never happened to me." Ugh! To add to all that, he is the worst educator ever. Case in point, there was a newly-diagnosed diabetic patient in his office. He told her to have certain labs done in a few months and to check her blood sugar a few times a day. That's all. I heard it myself. I went in to see him (pay all of $90 for less than 3 minutes with him)and, when I came out of his office, the same woman was asking the receptionist questions. I was flabbergasted. The RECEPTIONIST was doing the diabetic education, not the doctor, not even a nurse! I would change docs but all the endos in this area have huge egos and attitudes. I know, I worked with some of them.

EMS-WIFE's Photo EMS-WIFE Posts: 820
5/1/09 9:10 A

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I would, and have, get a second opinion. If you are not in a medical crisis with it, you should have time to weigh your options.

Sophy

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


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SOPHIADARE's Photo SOPHIADARE Posts: 316
5/1/09 9:00 A

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My husbad and I don't have kids. Graves' Disease is the third chronic ailment to hit me, and I was already down when the migraines transformed into a chronic stage. I'm 55. My endocrinologist is certain that radioactive iodine ablation is the answer.

At first that made sense to me, but as I check things out, I'm not so sure. Still, she seems to be the only game in town. I'm considering getting a second opinion.

Sophia Dare


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EMS-WIFE's Photo EMS-WIFE Posts: 820
2/8/09 1:18 P

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After about a year with that aftertaste, I stumbled on a great combo. Get a teaspoon, scoop up some peanut butter and put a small piece of dark chocolate with it. Chew it to oblivion to coat your tongue very well. Before you swallow, bury the pill in the middle of the mush. Now you won't taste it going down, and the PB/chocolate combo will leave a thin coating on your tongue to keep you from experiencing the aftertaste. Do not eat or drink anything for at least 30 minutes for best effect. If you still taste it...slowly suck on some dark M&Ms, one at a time when your taste buds are being assaulted. You should not need more than 5. Now that my dose is so low, I can swallow with almost anything and not have that effect.

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


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CARISIL's Photo CARISIL Posts: 140
2/8/09 1:07 P

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200 mg 2 times a day! That's incredable!
I've gained so much wieght taking 1/4 of that I can't imagine!
Ever take methimazole?
I had a bad reaction to that.

It looks like my thyroid problem is getting under control faster than some of you others I've read about here on Sparkpeople, I see it could be a lot worse!

Oh and that aftertaste! I hear you on that. I swear I end up eating more trying to get rid of that taste! :)

Prioritize your health and happiness!

Ps. 83:18


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EMS-WIFE's Photo EMS-WIFE Posts: 820
2/8/09 12:10 A

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Actually, it was 200mg twice a day! I was taking 400mg daily. And that aftertaste...EWWWW!!!! So glad that I'm better and on much, much less. It has taken me a few years, and a lot of persistence, and three different endocrinologists to get to this point.

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


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CARISIL's Photo CARISIL Posts: 140
2/7/09 11:55 P

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Wow, I just noticed what your post said. I know it's been a while since you posted it!
I can't imagine taking 200mg a day of PTU! I take 100 but that is after being on methimazole for about 7 weeks.

Prioritize your health and happiness!

Ps. 83:18


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EMS-WIFE's Photo EMS-WIFE Posts: 820
9/27/08 5:00 A

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Hi, I'm Sophy. I'm a 44-year-old at home mom with a 7-year-old and a firefighter/paramedic hubby. I've been in treatment for over three years now and have gone from 200mg/day of PTU down to 25mg/day. I'm still having trouble shedding the pounds I gained when I went on suppressive medication.

I like to run, walk, swim and geocache for activities. I also enjoy reading and listening to audiobooks. My favorites are sci-fi, sci-fi fantasy, period novels, and classics. I'm also addicted to the science and learning channels. My favorite reality shows are Survivor, Amazing Race, and So You Think You Can Dance.


Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


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