[KC750]

#1019893

I’ve been reading your blog since discovering it a few weeks ago, and am comforted to find other people struggling like me. I had undiagnosed Graves Disease probably most of my life (based on medical problems I’ve had since teens–I am now 58), which has been lumped in with fibromyalgia, chronic fatigue syndrome, depression, etc. Now a lot of what I’ve coped with most of my life makes sense.

I had one RAI in August 2008, which only made my symptoms worse. When my labs hit 0.002 (I know that’s extremely low), I got a 2nd and 3rd opinion aside from the endocronologist that wanted to do more RAI, and their consensus was total thyroidectomy. I also had 2 "hot" nodules (one 2.5cm and one 1.5cm) so I was in constant thryoid storm just prior to surgery. I had surgery on 12/1/08, which went great with very little post-op problems and virtually little pain. My biggest problem now is getting regulated. Going from 0.002 to 5.0 just 2 weeks post-op really threw me for a loop. I’m taking 175 mcg daily of Synthroid, and have mostly good days with maybe one or two bad days a week. However, I already had a weight problem due to undiagnosed Graves, and have gained almost 10 pounds in one week! Can I expect that this will taper off soon? I’m being very careful what I eat through the holidays, but nothing seems to be helping.

I’d appreciate hearing about anyone else’s experiences with this and what I can expect while I’m adjusting to medication. Thanks.

[cathycnm]

#1074854

KC – Welcome to our board. I am so glad your post op went well and you may be getting on top of your health challenges. As they say, that which does not kill us makes us stronger. That has become my mantra the last few years.

On the weight – once your thyroid levels are normalized, your weight set-point should return to its normal place. I also suggest keeping an eye on activity – because I don’t know where you are from – but I am from the Colorado mountains and winter tends to be a very hard time for me to be as active as normal. And while you may not be healed enough for an exercise program yet, just being aware of your activity level may help.

Also – each pound you gain requires 3,500 additional calories. So 10 pounds in one week sounds suspicious of water weight gain. Because 10 pounds a week would be like eating 3 or 4 whoppers a day on top of your normal diet. I think you need to let your doctor know so he can evaluate this. Water weight gain can be caused by many things and so staying on top of that is important. Cathy

[ZZZZESTY]

#1074855

KC,

Hang in there. I know it is extremely frustrating, but it will get better. Stick with this site for lots of good information and support. You are not alone. There are a lot of good people here who know just what you are going through. You will get through this, unfortunately it does take time. I am still trying to find the right dose for my Synthroid one year post op. In general, I feel great. I am happy again. I never thought that day would come, it just took TIME. Good luck. Hope you keep us updated.

ZZZZESTY

[KC750]

#1074856

Thanks again for responses and the continuing messages about the stuggles with Graves. I am beginning to feel like I’m pulling out of the post-surgical pit, and the good days this week were more frequent than the bad. Bad days consisted of wanting to sleep constantly and feeling very fuzzy-headed and achy. I have started on a low carb/high protein diet under dr. orders, and doing without carbs is very difficult. But as I continue to respond to Synthroid, I’m hoping the diet will get easier too.

I can’t begin to tell everyone how much comfort I have received from reading about other’s struggles. So much of the health issues I’ve had all my life are beginning to make sense now. And just knowing what I’ve been/am feeling is not all in my head is helping the coping process. Thanks to everyone for being so willing to be open and share situations and symptoms that can sometimes be difficult to admit.

KC

[Trisha]

#1074857

KC,
I am new here as well! My thyroid was removed several years ago. I stuggled with my weight for a long time. One piece of advice I can give you is absolutely take your synthroid the same time EVERY day. I was not able to control my weight until I was very consistant with my dose. It takes a while for things to get under control, but they will get there!

[Author]

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