[ldlight]

#1018409

Hello,
Let’s see where to start. My name is Laurie (25) I was diagnosed in May with Graves disease. I gained 113 lbs with my pregnancy ( had my beautiful daughter 11/05/09) and I’m still 50+ over pre-pregnancy weight. Can definitely say my princess was worth it but we have to wait to ttc until I’ve lost this weight and I get it under control which I’m having a hard time dealing with. I have the Graves disease that doesn’t make me skinny.. Yep just my luck I get the skinny disease and gain weight I was originally checked for hypothyroidism and my doctors made me take the blood tests 4 times because they didn’t think they were right. Well my TSH is less than .0001 so they were right. I did a rai uptake test and my 4 hr was over 30% and my 24 hr was over 70% Normal is 6 hours: 3 – 16% 24 hours: 8 – 25%… Oy Vey but anyways.. Now with my heat intolerance the Marine Corps has put my family in the middle of the Mojave desert in the middle of summer lol. I also have multiple nodules ranging from 1cm-2.25cm and an enlarged thyroid. I am on 10mg of methimazole and propranol. I was taking the methimazole twice a day but started getting bad chest pains. Still hasn’t fully stopped but they’re a little better. After reading on here I might ask to switch to PTU. My doctor already asked if I would consider RAI treatment but I will not. With a 9 month old and a Marine for a husband she would have no one to watch her. I know plenty of people say that I shouldn’t worry about my weight but it directly effects my health and happiness. Well looking forward to meeting others that have gone through this as well ” title=”Very Happy” />

[Bobbi]

#1064582

Well of course you worry about your weight! The problem is that it is very, very hard to lose the weight until you get your thyroid back under control. First of all, you need to be able to exercise (not just "diet") and we are often warned against exercise while we are still hyperthyroid, even if we don’t live in the Mojave Desert. Second, when we’re hyperthyroid we lose muscle — especially in the long muscles of the arms and legs, which do a lot of our "work" and which burn a lot of calories. Losing this muscle looks like weight loss to a lot of people who are hyperthyroid and they think it’s a good thing, but this is not good weight to lose. Muscle weighs more than other tissues, but it also burns more calories, even at rest, than other tissues do. So, when we lose it we cannot eat as much without gaining weight. (There’s been some speculation over time on this board about how that issue could result in some of us gaining weight, over all, instead of losing it.) When we regain normal, controlled levels of thyroid hormone, that muscle starts to slowly come back — and it looks like, and is, weight gain — but its return increases our metabolic rate, and it also helps us to regain our strength. We do have to exercise this returning muscle to make it strong, as well. Illustration: When I was recovering from being hyperthyroid — and I had lost a lot of weight and looked pretty anorexic — 15 pounds of it came back on without me changing clothing size. It was muscle return, not flab. The muscle we lose can be significant.

So, your first priority here must be your health: getting your thyroid levels under control. If you can do that with the antithyroid drugs like methimazole or PTU, great. They typically work to bring control back to thyroid hormone levels. But sometimes they do not, or some patients cannot tolerate them as well as others, or whatever. If that is the case, then the alternative — removing the thyroid — is sometimes necessary.

Congradulations on your new baby! and Welcome to the board.

[Kimberly]

#1064583

ldlight – Yep, I’m a member of the "got the skinny disease and GAINED weight" club as well. For patients who have lost weight while hypER, the weight gain is a sign that they are returning to good health. However, for those of us who *gained* instead of losing while hypER, the extra weight is certainly one more frustration that we DON’T need!

I read somewhere that about 10% of patients gain weight instead of losing while hypER, but just from talking to patients and reading messages on this board, I suspect that number is a lot higher. Some docs will say that this is because we increased our food intake while hypER and didn’t change it accordingly when our levels went back to normal…but I am a Lifetime member of Weight Watchers, so I have 6+ years of food journals to disprove that theory! In fact, I heard one of our presenters speculate at a past conference that there may be a "resetting" of metabolism after a patient experiences a thyroid disorder. I have found that I literally have had to count every single calorie to get my weight moving in the right direction again. I am even weighing stuff like spinach, cucumbers, and carrots to make sure my count is accurate. UGH!

As Bobbi said, though, priority #1 is to get your thyroid levels stabilized. In the meantime, you might ask your doctor if there are any activities that you *can* do. Perhaps light walking or stretching would be helpful.

Best of luck!

[ldlight]

#1064584

So I have read from ya’ll and in many other posts here that you weren’t allowed to exercise. My endo hadn’t said anything to me about it, so I decided to call and ask. He told me once I had taken propranolol for a few wks that I could do whatever I wanted. It worried me for two reasons. 1) He knew I did heavy workouts every week ( They are mommy n me workouts but I have a 22 lb baby lol) 2) He hadn’t even bothered to tell me to wait before I called and asked. When I told him I was having severe chest pain from the methimazole he told me that I could move my blood test up if I wanted. I am going to stop taking the Methimazole as just last night I broke out in hives and rashes and almost clawed my skin off.

[Bobbi]

#1064585

Where to start? Well, first off, if you have decided not to take the methimazole any longer, you MUST call the endo and inform him of it. Right away. It is sometimes possible to ride out the hives and itch by taking an antihistamine like benadryl, but I certainly do understand you not wanting to continue a drug that is causing you grief. The thing is, hyperthyroidism is not something you should allow to continue. You must get appropriate treatment. So, calling the endo and letting him know what is going on, and getting instructions for either the other antithyroid drug, or surgery or RAI, is the first good step.

If you go off the methimazole, I would not recommend that you trust the propanolol alone to protect your heart from heavy exercise. When your doctor made that comment you were on a drug that was blocking the production of some thyroid hormone, and that makes a difference. Hyperthyroidism causes multiple problems for our hearts, and heavy exercise can only aggravate them.

[marta1234]

#1064586

As long as I remember I always struggled with weight. I wanted to look good so I was continuously on diet, exercising, trying to eat healthy. One of my symptoms of GD was 20 pounds weight loss within 3 weeks. Sounds good? Maybe , but it was and still is very scary for me . I am on Methimazole for 3 weeks and continuously loosing pounds as I have issues with my stomach. I understand that extra pound may be concern for many of us but what is more important right now is to be healthy, defeat Graves. I would love to enjoy the weight gain is a sign of returning to good health ( it is very true Kimberly!) and you should work together with your doctor to become healthy.

[ldlight]

#1064587

Oh goodness, I guess I should have stated it this way. I am going to stop taking Methimazole after my doctor puts me on PTU . I don’t want to lose the 2 wks I’ve been controlling my thyroid by not taking it. I made an appt. for tomorrow so hopefully he can change my medicine then.

What upset me about him not telling me to not exercise is I wasn’t on Methimazole yet when I started going there and he knew I worked out pretty hard each week.

[snelsen]

#1064588

Well, you can clarify that with him tomorrow. There is a lot of discussion on this site about exercise, and frequently I think exercise is not defined. I sometimes worry a little bit that all exercise is assumed to be "working out." It does seem logical not to further push a body that is already in overdrive. I realize that you said you have strenuous exercise. It will be a nice exchange of information and understanding between you and endo.
I walk everywhere, my walk is my normal brisk walk that is part of me. When I was hyper, I was working full time as an RN on a busy floor, and always on my feet. I guess that is exercise, too, but I felt that this level of activity worked very well for me when I was hyper. Of course, I had no choice about work. I sure did eat a lot, though!
Just so you know, I was on PTU, liked being on PTU, had no side effects at all except feeling better, more like myself as the days went by. He will probably tell you some labs need to be drawn, so you can learn all about that at your visit.
Look forward to your next post! Glad you see him tomorrow.
shirley

[soldier]

#1064589

Well I am new here. I was diagnoised with Graves disease at the age of 19. I had just joined the military. I suffer from hyper thyroidism. I have always been 154-160. I run and workout everyday. I had my thyroid gland removed in Novemeber 2006. I aggreed to allow the hospital to send my gland for research to understand the disease better. My doctors are puzzled that even though i take synthryoid my thryoid levels are still very high I had the glad totally removed. I have three year old daughter i gained 40 pounds while pregnat but soon as I had her litterally three weeks later I was back down to my normal size. I have turned this disease into a positive for me. I see it as eating whatever I want and not gaining weight. So I just say when life gives you lemons make lemonade and a lemon pie!! I look forward to meeting everyone and hearing your stories. I am currently in Iraq so any responses are greatly appericated. God Bless!!

[teacherhelper]

#1064590

Boy, can I sympathize with you! I’m also one of the few who has gained weight! I feel horrible but know everything has to get into the proper levels before I can start to work on getting the weight off. The added weight has made me feel so uncomfortable. I’m short, only 5′ 2", and don’t need any more than what I had at the start. i’ve added 20 pounds since being on PTU. My eating hasn’t changed!

Hope things go well with you! I see my endo again Aug. 16 and can’t wait!

Joanie

[Bobbi]

#1064591

Shirley: You’re absolutely correct — there’s exercise and then there’s Exercise! I usually think in terms of the capital letter, bold-faced one when cautioning folks. But that goes back to my experience, too. I was power walking with friends most mornings and two months later found myself short of breath, and weak, and unable to even enjoy slow walks if there was any uphill grade. Another month later, and I couldn’t even tolerate a cardiac stress test (called by my GP because of palpitations). The cardiologist had to hold me — literally — on the treadmill because my legs quit on me. So, I guess it hits all of us in different ways. There’s no way I could have soldiered on as an RN while I was undiagnosed and hyperthyroid.

[snelsen]

#1064592

Hi Bobbi, your statement that being hyper hits us in all different ways is so representative of the vast continuum of the experiences people have when they are hyper. At work, my general mode has always been fast moving. But when i was hyper, it went to extremes BECAUSE I was hyper, for when it was time to go home at midnight, I was always HAPPY to stay later if needed. I knew that I I went home, I wouldn’t sleep anyway!
Gosh, I am reminded of how carefully we are monitered during a stress test, which is a very good thing! So glad they recognized you simply had to stop. It has been a great revelation to me to learn how many people with newly diagnosed Graves’ experience profound fatigue. I did not realize that before I joined this site. I marvel every day at how grateful I am that exists.
Maybe after TED issues calm down, and I sure hope they do, I will see if I have enough energy to begin a support group in Seattle. Right now, that seems daunting to think about.
Shirley

[Kimberly]

#1064593

The exercise question would be a great one to bring up at the conference. My doctor did not initially talk to me about exercise, but we did have the discussion a couple of years later when I went through a hypER phase. Odd. Also, I have several books about Graves’ and thyroid disease, and only *one* of them mentions exercise at all. That book notes that because our hearts are already working overtime when we are hypER, exercise creates unneded extra stress by making the heart work even *harder*.

@ Soldier – Welcome to the boards…and thanks for your service! Hopefully, you have access to good medical care while you are in Iraq. Are your levels still too high, or was that only right after you had surgery? If you levels are still above normal, it might be that your dose of replacement hormone needs to be reduced. You definitely need a doctor who will work to find the dosing "sweet spot" that is right for you. Taking too much replacement hormone over the long term is associated with osteoporosis — and you definitely don’t want *that* complication down the road! Thanks for joining us…I hope you will be able to check back often!

[newbie10]

#1064594

I am one of the 10% that didn’t lose weight but gained. That was one of the things that puzzled me when I was first diagnosed with being hyper because the list of symptoms said weight loss not weight gain. Being just told I was hyper a little more than a year ago, I do struggle with my weight. Just this July when I was told that I have GD. My endo doctor told me to not to exercise (I was going to Curves every week) until I get my levels down. After 2 months, he gave me the ok to start back in Sept. but to take it easy.

[Lauri]

#1064595

Ditto on the 10%…went from 108 lbs January to 128 lbs in March. thursday I was still 125 lbs…used to wear a size 4…now size 6/8…and to think there was a time when I was younger when I tried everything possible to GAIN weight. LOL ” title=”Very Happy” />

[Author]

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