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Anyone diagnosed with Hyperthyroidism/Graves Disease?

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Old 07-21-2012, 02:32 PM   #1
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Default Anyone diagnosed with Hyperthyroidism/Graves Disease?

Is anyone dealing with hyperthyroidism and having a hard time losing weight?

About a year ago I was referred to an endocrinologist by my gyno and found out I had Graves Disease. It explained some weird symptoms I had been having (no period for months, rapid heartbeat and so getting so hot I would stick my head in the freezer for relief ). I'm on meds now and he says my blood tests are getting better but now I am having a REALLY hard time losing weight. The funny thing is I never lost any weight while I was undiagnosed. For a lot of people that is a symptom but not for me.

My doc told me now that my metabolism is resetting itself it will be extra hard to lose weight (as if it's not hard enough). I will be on these meds for another two years then he will evaluate me & see if anything else needs to be done. He has me on Propylthiouracil also called PTU.

So I am wondering if anyone here at 3FC has dealt with this? Were you able to lose weight while taking meds? Did it get any easier once you were off the meds? Is there any hope for me? Or am I doomed?

Thanks in advance to anyone that replies!
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Old 07-31-2012, 02:52 PM   #2
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Hi Lynn,

I too have Graves.

My symptoms were rapid heartbeat, tremor, excessive perspiration, irritability, insomnia, and panic attacks. Ultimately, my rapid heart beat is what scared the heck out of me as it lead to congestive heart failure -- my heart was beating so fast it became really inefficient and I would end up with asthma-like symptoms. I literally could not walk a block with out wheezing and I had a persistent cough and bronchitis.

I've always been one of those people who had a "high" metabolism and able to eat anything I wanted. I suspect Graves is the reason behind that and for years was fairly stable weight wise. As I became acutely thyrotoxic, I lost a ton of weight while eating anything I wanted in any quantity I desired. I also looked terrible. Friends were worried I was terminally ill with something. I was pretty scared too. I'm tall at 5' 10", with an athletic frame, and was down to 165. My partner says "jaunt and pasty".

My internist figured it out pretty quickly, and it took me another 3 months to get an appointment with an endocrinologist whom is experienced with Graves and who tries for remission before ablation or surgery. He prescribed methimozole which I responded to extremely well. He warned me that my metabolism would slow down, and that I would need to limit my intake of food and alcohol.

It's now 18 months later, and my blood work is normal (T4, T3 and TSH). Best of all my immune system seems to be healing (TSI Antibodies have come down by half). I'm sleeping normally, my heart rate is down to 75 BPM, I'm not shaking, nor sweating. I have not had a panic attack in months and was able to stand in front of 300 people to give a talk to without completely freaking out.

On the downside, I ballooned in weight, shooting up to 246. I kept eating the same portions that I was when thyrotoxic - a pint of ice cream here, a rib-eye there, a full bottle of wine here and there...... I hadn't listened to my endo. *pluuuummmp*

Last Christmas day was the low point. I had one of those random-caught-a-glimpse-of-my-self-naked-in-the-mirror moments. I didn't like what I saw. Later that day, I could not fit into my favorite Christmas outfit that I've worn for years. Finally, one of my kids gave me a cute top, which well, maybe I could have worn a year before when I was so sick. I cried for hours.

That evening I joined Weightwatchers. The next day, I started walking. It's now 7 months later and I have graduated to riding a bike around 100 miles a week. I walk everywhere else, trying not to use the car for anything except when the weather is bad.

I've lost 35 lbs, have toned up a lot, moved from a 24 to 18/20 and set a personal goal of 170. That will put me in the the top of the BMI for my age and probably a size 14 given my height. Lately I have been plateaued, so have increased my exercise and religiously count everything that I eat, while not eating my weekly allotment and "banked" exercise points. I'm beginning to think that my body is now hypothyroid, as my BP is the lowest it has been in years, I'm sleeping way to much, and I'm just not losing any weight doing crazy amount of exercise. I see my endo in two weeks, so we will see once I get the blood work back.

Sorry for blabbing on..... As you can see, we are not doomed, and while I am plateaued now I'm viewing it as a well documented short term issue.

Here is a few of pointers that you probably already know and are doing. If you haven't yet, moderate your food intake. Weight Watchers made me realize the ridiculous amount I was eating -- perhaps 4 times what my points were. Exercise has been a tremendous help emotionally - I'm doing things I have not done in many many year and that has given me some confidence to keep going. Physically, I may be big, but I'm liking how I look in the mirror.

Finally, I don't know how often you see your endo? I'm on three month intervals at this point, but he gives me three "orders" for blood work. Each month, I get my T4 and TSH tested. We then either email or talk on the phone to moderate the methimazole intake. If your low on T4 and/or high on TSH, then you may be hypothyroid. I've also keep a medical diary of sorts since I really got sick -- it has weight, emotional feelings, blood test results, and personal commentary. I've discovered that I feel best on the upper "normal" range of my T4 readings. That's when I have the best energy, and am actually able to lose weight. You're mileage may vary, getting the blood work done every 4 weeks have allowed us to vary the medication regimen.

Feel better

Joanna

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Old 08-04-2012, 01:19 AM   #3
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Hi Joanna: Thank you for your reply. I know deep down I'm not doomed, it was more like I was feeling sorry for myself. I had a stretch where I had cut out a lot of junk & I was exercising regularly. I lost 5 pounds then gained 3 lost 1 gained two. Now, a month later I'm down a total of 2. I was expecting more after my hard work. I am realizing just how careful I have to be to see any results. The kicker was at my last appointment I had gained 5 lbs. and my doc said "well, I was expecting that". I said whoa, what?!? That's when he explained how the pills were resetting my metabolism and that most people gained during this time. He hadn't told me that before.

How scary for you to experience those symptoms! I had the rapid heartbeat but it never lasted more than a minute at a time. I'm glad to hear that you are (mostly) symptom free now.

I do see the endo every 3 months & get new bloodwork. He started me out with 8 pills a day, now I am down to 3 so they are working and all of my symptoms are gone. He is sending me for a 6 week blood test after the most recent adjustment so I'll see what he says about it then.

Thanks again for the reply and congratulations on your weight loss! I think you're right, it's just a plateau. Keep doing what you're doing and you will break it.
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Old 08-07-2012, 10:07 PM   #4
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I had Graves' 11 years ago. I lost NO weight while I was hyperthyroid. The palpitations would wake me up in the middle of the night, and the hunger would keep me up. I had to eat a snack to get back to sleep.

Then I had radioactive iodine, and gained 20 pounds in 1 month before the endo would start me on Synthroid. He kept saying I might "bounce back". I wasn't bouncing anywhere. It was all I could to to get up each morning.

Good luck and watch your eating. I had no clue, so I was completely blindsided.
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Old 08-08-2012, 07:28 PM   #5
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Riddy: If you don't mind my asking does the iodine treatment shut down or destroy your thyroid and that's why you had to go on the Synthroid? I think I have read about that as an option for Graves. Was it a last resort? My endo told me that he wants me to take the meds for 2-3 years before looking at any other treatments.

On another note...you've lost 102 pounds!! That is so incredible! Sincerely, it inspires me to see that.
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Old 08-09-2012, 03:10 PM   #6
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Quote:
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Riddy: If you don't mind my asking does the iodine treatment shut down or destroy your thyroid and that's why you had to go on the Synthroid? I think I have read about that as an option for Graves. Was it a last resort? My endo told me that he wants me to take the meds for 2-3 years before looking at any other treatments.
The most common method of treating Graves here in the US has been to use radioactive iodine (I believe it's Iodine 131) to "ablate" the thyroid - either killing it out right or severely disabling it. Sometimes, when the treatment does not completely destroy the thyroid, your reduced functioning thyroid may produce the correct amount of thyroxine (T4). Hence the waiting for the "bounce back". My endo tells me that some amount of hormone replacement therapy is generally required and Synthroid is the most common substance used.

I'm really loving your Endo! Hold on to him/her....

In Europe and Japan, drug therapy for 2-3 years is the most common approach. Unlike may autoimmune disease processes, Graves has a chance to go into remission. Various studies suggest up to 20 to 40% of the time. It took me 3 months and interviewing four different endo's to find one who did want to just nuke my thyroid and move on.

I've now been on Methimazole for 18 months and this fall we are going to have the conversation on what the next steps will be. My endo has indicated that there are new studies out that suggest that those people who have radioactive ablation, have much higher incidence of Grave's ophthalmopathy. The studies suggest that the post-ablation death of thyroid tissue shocks the immune system to producing substantially more antibodies, which in turn attacks the lining of the eyes causing the associated inflammation. I'm past children at this point, so would be an ideal candidate for radiation, and yet, as I have very little ophthalmopathy, he believes surgery would be the preferred route.

When I asked if I could just take the Methimazole for longer he did indicate that the long term effect of Synthroid is benign, where Methimazole has shown signs of impairing liver function.
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Old 08-09-2012, 07:41 PM   #7
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My medication is also associated with liver damage. Every time I pick up the pills a scary government warning is stapled to the bag. I asked about it and he said that it is so rare, that I should just be on the lookout for any unusal symptoms.

I do not have the eye inflamation either but it scares me to think that it could have/can happen. I've seen pictures of it and it's not pretty and I believe can only be rectified with surgery.

Good for you for sticking it out and finding a doc that you were comfortable with. Maybe I got lucky? I was so limited in endo's unless I wanted to travel an hour out of the way. I am keeping my fingers crossed that the meds take care of this but I am aware that I may have to have some procedure to fix this.

I have the book "Thyroids for Dummies" which I have barely cracked. I really need to get on the ball & read it.
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Old 08-09-2012, 09:18 PM   #8
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Yes, radioactive iodine is usually dosed to make the patient hypothyroid. They would rather do the treatment only once, and then manage the hypothyroidism with thyroid hormone replacement. I was given an even larger dose than average, because I had multiple "hot" nodules. I was on 175mcg of Synthroid for years, then bumped up to 200mcg. Last summer when I had lost about 40 pounds my dose was dropped back to 175mcg, and it was just reduced again to 150mcg.

I was OK with going straight to radioactive iodine - I was so miserable, I just wanted it over. Plus my mom and grandmother had had the radioactive iodine, so I kinda knew what to expect. Little did I know how much MORE miserable being hypothyroid is.

In hindsight I probably should have done a little more research, but I was only in my 20's and didn't think to question the doctor.
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Old 08-12-2012, 10:44 AM   #9
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Woo woo....just got my 3 month blood tests...... Free T4 12 (range 9-24) and TSH 1.65 (.40 - 4.00) -- normal
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Old 08-29-2012, 06:29 AM   #10
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I don't know If this counts, but I have synthroid-induced hyperthyroidism. I was hypo, TSH was 19. Was started on synthroid a few months ago, started haver hyper symptoms (waking up in the middle of the night, heart rate up, anxiety and irritability).so I got blood work yesterday and my doc emailed me at 4:30am to let me know that my TSH is 0.07 now and to stop the synthroid.

Hopefully I will just have my dosage adjusted and everything will straighten out.
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Old 08-29-2012, 07:23 AM   #11
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Hopefully I will just have my doseage adjusted and everything will straighten out.
Hi there,

If you don't mind me asking? How long have been on Synthroid? And how often do you get your blood work done?

Joanna
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Old 08-29-2012, 10:32 AM   #12
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Hi there,

If you don't mind me asking? How long have been on Synthroid? And how often do you get your blood work done?

Joanna
I started on generic synthroid February 1 of this year,dosage at 100. I got it rechecked 6 weeks later, then checked again 4 months later. I just got it checked again yesterday, because I was having hyper symptoms.
My new adjusted dose is 85 now that I am hyper.

Synthroid has worked great for me overall, I've lost 23 lbs, my mood is better and my energy level is up.
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Old 08-29-2012, 11:22 PM   #13
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I started on generic synthroid February 1 of this year,dosage at 100. I got it rechecked 6 weeks later, then checked again 4 months later. I just got it checked again yesterday, because I was having hyper symptoms.
My new adjusted dose is 85 now that I am hyper.

Synthroid has worked great for me overall, I've lost 23 lbs, my mood is better and my energy level is up.
Thanks. I'm probably going to have surgery this winter. And will be back in the monitor and alter (or is that trial and error) method to maintain a steady state.
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Old 09-05-2013, 07:14 PM   #14
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Hello All! Are any of you still active? I was diagnosed with Graves Disease induced hyperthyroidism three months ago. Doc put me on propanolol and methimazole, and specifically told me to not change my diet! When I was back in a month for more blood work I had gained 10 pounds and he said "eh, it happens." I was pissed. I'm seeing an endocrinologist now who is really great. I'm still on the propanolol and I just got off of the methimazole about three weeks ago. I'm getting my RAI uptake screening done next week, and I've been researching a lot so I'm going into it with open eyes about my weight. My endo said not to look at the scale for a year, to wait for my levels to stabilize and then I could focus on the weight, but I've gained 26 pounds in three months! My clothes are very close to not fitting and I don't have the money to buy a new wardrobe for work. If anyone from this thread is still active I would love an update on how you're doing. After the first month and gaining 10 pounds I started exercising for 40 minutes five times a week and staying around 1400 calories a day. Doing that I've still gained 16 pounds in two months. Is there anything else I can do?
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Old 09-05-2013, 10:40 PM   #15
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Hi GG,

I'm still here....

If you don't mind.... What are your TSH and FT4 levels, along with the lab norms as they all vary a bit from lab to lab? In addition, what has been your dosages of propanolol and methimazole over time? Also, was the propanolol prescribed for tachycardia?

I can certainly understand your frustration with weight gain..... When I was hyperthyroid, I could eat anything I wanted, and I mean anything. I also was losing weight at an incredible rate. I was gaunt, and friend if mine were thinking deathly suck thoughts about me....

Then I start started getting my thyroid under control with methimazole. I ballooned... 50 lbs in a short period of time and went through 3 sizes of clothing. I had kept eating at hyper-metabolistic rates.....

My endo warned me it would happen but then really chastised me when I did. My hormone levels have stabelized using methimazole and I've been able to avoid surgery or RAI. I 've also struggled with my weight, but have eliminated so many of the negitives of Graves - tachycardia, irritability, foggy thinking, shakes, insomnia, excessive perspiration, etc.

I'm generally very happy with my endo. He's taught me a lot, been patient with my questions and listens to my desires. I feel I have a say in my medical needs and he has no problem with a patient who pushes back. Weight Watcher's helped me regain perspective of how much I was eating. I lost 40 of the 50 I had put on, but I plateau'd, got frustrated a put weight back on.

I recently moved over to a paleo diet, and have started to lose again...

I'm not on this forum much lately, but let me know how I can help?
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