[Ski]

#1071715

First, your TSH level is likely to lag behind the T4 test results ~ TSH reads an average of the thyroid hormone levels in our bloodstream over time (weeks) and reacts accordingly, so when the levels are changing rapidly, the TSH will take a while to "catch up." At this point, your T4 is a better level to be looking at, while checking TSH to give some perspective. Later on, when your levels are far more stable, TSH is the best level to use for guidance.

It’s possible that you are gaining back some of the muscle mass you lost while you were hyperthyroid. That’s good weight gain, but it won’t function as it used to until you strengthen it and give it the calorie-burning capabilities it had before hyperthyroidism took it away (strong muscle mass burns calories, even at rest). That’s one possibility for the weight gain. Another possibility is that you have not yet replaced that muscle mass, and so you do not have the benefit of its calorie-burning capabilities, and so eating the same way you used to can result in weight gain, because your muscle used to burn some of those calories away. These are pretty much the same underlying reason for the weight gain, I know.

Doctors like to say that we became gluttons while hyperthyroid, since we could eat virtually anything and not gain weight, then when our levels drop, our gluttony catches up with us. I get just a little perturbed when I hear that this is what patients have been told, because I really don’t buy it. Perhaps this happens if a patient has been hyper for years and years, but I don’t believe it occurs when GD has come on fairly rapidly and been diagnosed quickly.

You’re so early on in the process that it’s hard to say right now, but I will venture a guess that once you have completely controlled thyroid hormone levels, you’ll find it easier to resolve. In the meantime, just try to eliminate any empty calories in your diet. Take good care of yourself. ” title=”Wink” />

[enough3]

#1019451

Hey Everyone,

I’ve been averaging about 200mg PTU for 2 months. (I say averaging b/c I was on 300 for two weeks). My last labs showed that my t4 was in range but my tsh was still under range ..like .2
I have noticed that I’m about 5 lbs heavier. I gained this weight since about 6 months ago. No major eating changes. It’s like I’m having to actually watch what I eat now:( I can’t seem to lose it either. Even if I reduce my calorie intake, it still hangs around. What is the deal? I have had GD for 20months and never even thought about my weight. Has this ever happened to you guys?

[enough3]

#1071716

Thanks Ski. Love your feedback. I have one question left…As I looked back over the last ten years of my life..I kind of feel that I may have had GD earlier than just 20 months ago. I remember many phases in the past decade where I almost felt "manic" so to speak. I have never had mental health issues (except the craziness with GD:) Is it possible that some of my behavior habits in my 20’s could of been part of GD?

Also, does GD make you feel paranoid? LOL Times in my past that I have dealt with being paranoid…maybe this is part of a under DX GD? What do you think?

[Ski]

#1071717

GD can definitely come and go in the years before it comes on strong enough for us to notice and be diagnosed. I had similar episodes for probably 10 years or more before it was constant. I don’t think it means we were hyperthyroid the whole time ~ I think we may have gone hyper and then gone back to normal without realizing it ~ but of course there aren’t statistics on it because it’s in the period of time before we see anyone about it.

As far as paranoia, we know there’s a mental component to the imbalance, and I think that plays out differently in many people, so YEP it might originate with that imbalance (or they really are out to get you! ” title=”Very Happy” /> giggle ~ couldn’t resist.)

[ely2009]

#1071718

Looking back now, I, too, think that I’ve gone from hyper back to normal several times over the last decade. I had a struggle with infertility and also some anxiety. I know at some point my TSH was tested. I wonder how it can be causght sooner.

Emily

[Kimberly]

#1071719

I think I had a bout of hyperthyroidism when I was in my 20s. It’s hard to describe how I felt. I wasn’t exactly dizzy…my head just didn’t feel…RIGHT. I went to a doctor, but he insisted I was “fine”. The issue eventually went away, but I was diagnosed with Graves right after I turned 40.

I’ve been a lifetime member of Weight Watchers since 2004, and I have definitely been struggling with my weight more in the last 18 months. (And I know I haven’t been hyper giong back to 2004…I have copies of labs from 2005, and my TSH was over 4). The idea of weightlifting bores me to tears, but I’ve been trying to work in at least a little, as I know that loss of muscle mass is contributing to my weight issues.

Personally, I also believe that my metabolism just isn’t the same…and I don’t know if it will be again. I’m starting to face the fact that I’m going to have to work harder and eat less if I want to stay at the weight I was before…which REALLY sucks.

Best of luck!

[enough3]

#1071720

Thanks for all the posts!! ” title=”Wink” />

[gingerr36]

#1071721

I hope to hear from someone, though this thread is old…
I’m 25. I was diagnosed in December 2009. I also have type 1 diabetes. My symptoms seem to have come on rather quickly. I think I only had GD a few weeks before I sought medical help. It caused high blood sugars, rage, and heart palpitations, so it couldn’t be ignored.
I’ve been on methimazole (which I was allegeric to) and then PTU since diagnosis. I became hypo after 2 months, and after 4 months I reached normal TSH, T3 and T4 levels on 50 mg of PTU/day. The doctor wants to take me off PTU in December this year. He didn’t think ATDs would work, but he says I’m proving him wrong. That all seems great, but the weight gain I’ve experienced is downright depressing.
I only lost 7 or 8 pounds prior to diagnosis, unlike some folks who lose 50 or 60. Prior to diagnosis I had been the exact same weight for 2 years. Unlike many GD patients, I have never been skinny and have battled to stay lean since I was in middle school. Since starting PTU I have put on the 7 or 8 pounds I had lost plus another 10. I’m very short, so an extra 10 pounds is a lot for me. My BMI is up to 28! ERRRRGGG!!! I was hypo for a month or 2, so I thought once my labs normalized I might lose the extra 10 pounds the PTU packed on me. Nothing has happened. When I mentioned my concern about the weight to my endo he shrugged it off. He didn’t seem to care at all, and didn’t make any suggestions. It is unbelievably frustrating. Maybe if I gian more weight he will start caring.
I cook all our meals. We don’t eat frozen, processed, junk foods. I’m already not drinking juice and soda due to the diabetes. I’m already taking extra fiber. I take a 30 minute walk every day and do strength training before bed. I don’t know what to do. I feel awful that this has happened. I have never weighed this much before. My clothes do not fit.
Has anyone who has been successful with ATDs lost the extra weight they put on? Did it happen gradually by itself once you were in remission? What helped with the weight? Money’s tight right now, so I can’t join a gym or take classes. I can’t even try weight loss aids like SlimQuick because they put kelp in it, so I’m really at my wit’s end.

[Kimberly]

#1071722

Hello – I understand your frustration, as I also experienced a weight gain over and above what I lost when I was hyper. If you do a search on this board for “weight”, you will see that there are a LOT of us struggling with this issue…regardless of which treatment option we chose. I really wish that more endos would take an interest in this issue, because it appears to be fairly common.

Unfortunately, for those of us who have had thyroid issues, the degree of difficulty in losing weight seems to go WAY up. (And I personally find that if I get a *little* off track with my food plan either from vacation or stress eating, the weight piles on SUPER fast). We had a presentation from a nutritionist at last year’s conference, and she commented that we “have to count EVERY calorie”. It sounds like you are already eating very cleanly, and you are smart to avoid supplements. I’ve posted this a few times on other threads, but here are some of the other suggestions from the nutritionist:

1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a night

Once a doctor’s clearance is obtained to resume activity, she also recommended 150 minutes per week of physical activity, plus strength training 2 times per week.

Right now, I am really focusing on the strength training piece, as I *know* I’ve lost muscle mass over the last 2 ½ years since my diagnosis. Hopefully, this will help! I’m also trying really hard to not stress as much over the weight gain, because studies are starting to show that stress leads to MORE weight gain. This is much easier said than done, though.

In the meantime, feel free to vent here…we definitely understand what you are going through!

[gingerr36]

#1071723

You mentioned waiting to get the doctor’s approval to do strength training…oddly enough no one ever told me to stop physical activity. IS THAT UNUSUAL? My legs felt a tad weak when I was diagnosed, but I’ve been able to do everything I always have. The last couple months especially I’ve been lifting 10 lb weights and doing a little ballet conditioning for my legs. I never thought to check with the doctor.
I see lots of people giving advice on this forum that my endo directly contradicts. For example, my doctor says that even on PTU I can eat seafood, soy, and iodized salt. He just doesn’t want me to take kelp supplements or to eat sushi 3 times a day. I’ve seen many posters here say iodized salt, soy, and seafood are all big no nos unless you’ve had your thyroid removed.
I wonder if my endo is misinformed or something. Perhaps that’s why he thinks it’s fine for me to go from being a healthy weight for years (without having GD) to being nearly obese in a few months. Apart from being frustrated about my wedding ring fitting too tight and the extra belly fat, I’m irritated that the doctor doesn’t care or even pretend to care about my weight. It really makes me wish that I wasn’t stuck in a stupid HMO.
One bit of weight loss advice I can take away from these boards is to get 7 hours sleep. That’s a tough one for me, but it’s a lot less annoying than Weight Watchers.
Anyhow, best of luck to all GD chubbsters.

[Kimberly]

#1071724

gingerr36 wrote:You mentioned waiting to get the doctor’s approval to do strength training…oddly enough no one ever told me to stop physical activity. IS THAT UNUSUAL? My legs felt a tad weak when I was diagnosed, but I’ve been able to do everything I always have. The last couple months especially I’ve been lifting 10 lb weights and doing a little ballet conditioning for my legs. I never thought to check with the doctor. I see lots of people giving advice on this forum that my endo directly contradicts. For example, my doctor says that even on PTU I can eat seafood, soy, and iodized salt. He just doesn’t want me to take kelp supplements or to eat sushi 3 times a day.

The concerns with exercise when we are hypERthyroid have to do with potential heart complications (since our hearts are *already* working overtime) and with aggravating the muscle wasting that tends to happen when we are hypER. I used to regularly lift weights before I was diagnosed with Graves’, and I noticed that my legs and arms would shake violently after a weightlifting session. (That should have been a tipoff that something was wrong, but of course, I ignored it…) If you are doing light exercise and not experiencing unusual fatigue, you are probably OK…but a call to your doctor’s office wouldn’t hurt just to make sure that your routine is OK.

You hear a lot of conflicting advice on food intake. Pretty much the only thing everyone agrees on is that kelp should be avoided. I know a lot of patients on ATDs who completely cut out fish and dairy due to the iodine content, but I consume both of these foods in moderation. Personally, I chose to switch from iodized salt to sea salt…and I take a multivitamin that doesn’t have iodine. I hear all sorts of negatives vs. positives on soy, but in general, it is believed to *reduce* thyroid function, so it is usually a caution for people who have partial thyroid function. Confusing, I know…but we all have to filter through the conflicting info and settle into a routine that works best for us!

[Author]

Posts