Weight Gain

Anyone else having trouble with weight gain? I have read that this disease can affect your thyroid. I just cannot seem to lose any weight not matter what I do. I barely eat anything and the lbs keep adding up, I exercise on a regular basis.....so frustrating...........

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I've also gained weight. I thought I was the only person with scleroderma who had gained weight instead of losing it. I exercise regularly (very low impact though due to lung disease). I was just reading about hypothiroidism yesterday and planned on asking my rheumy during my next appointment. The article I read said this can be caused by an auto immune disease so it's worth looking into.

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blissfulmommy - you are not alone, I was just getting frustrated with the extra lbs. and I stumbled across an article that linked auto immune disease to thryoid problems. I was just wondering if anyone else had this problem. I take omeprazole 20mg each morning for acid reflux and 0.5 mg lorazapam (spelling) for inner ear balance loss (which I'm still wondering if that is scleroderma related). so I'm pretty sure the weight gain is not from the meds. anyone else out there have any related issues with weight gain? Actually anyone out there have any inner ear balance loss? I was having headaches for a couple of months and when I would lie down I felt like i was laying in a wave pool. So I went to a ear specialist and he did several test one of them being an ENG and found that 90% of my inner ear balance was gone, that is why he put me on the lorazapam. he could not explain why the loss, he said sometimes it just happens, that is what makes me think now that it is Sclero related?? I also have Raynauds, along with swollen hands and feet. Had an echo, Esphog. mammetry and PFT test done last Jan. at that time things were normal except for my mammetry test which showed my lower esophagus was very sluggish. I do have to take a capful of ducolax balance eveynight to keep things moving......I just started with the swollen hands and feet in the past 4 months. what next? Any feed back would be greatly appreciated!

Kim

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I have hypothyroidism and take synthroid for that. I have problems with weight gain, I gain it easily in spite of the fact that my thyroid levels are "within normal limits". It is very hard to get it off because the level of exercise I need to help lose weight is beyond me. It is so very frustrating. Even if I am paying close attention to what I eat and do make all the right food choices progress is so slow that it is hardly worth the bother.

Good luck and I am anxious to see if anyone has some good ideas.

G

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me too! i gained 40 lbs and still noone would listen i was told thats just what happens when you turn 40! uummmm NOT! i have Hasimoto's thyroiditis also, noone still connects the dots but i am losing some of the weight with diet and exercise, or maybe with the meds that have the side effect od weight lose or decreased appetite? as lonf as the weight comes off so i physically feel better to continue to exercise and eat right

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Sign me up, I said to my neurologist that the only sign of scleroderma I do not have is losing weight, I also am hypothyrod, I became hypothyrod I believe aboutt he same time I started with symptoms of the sclero, I was dx with the hypo because it is much easier for doctors to dx that disease, gained a bunch of weight which is very depressing and now I can hardly exersise because of my muscle disease and it is frustrating, so yes I understand,.
Susie

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When I first was diagnosed with SD I was steadily gaining weight and could not understand why. I was not on any meds that would cause weight gain. Then the opposite happened after 2 years. I lost 55 lbs. I am still thin but the weight loss has stopped, I do not have a thyroid problem. But you should definitely be checked.

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I have the problem with weight gain also. I have hypothyroidism, but treating it, and getting the TSH into the normal range has only brought my weight down about 3 pounds. So I think it's that I am not active enough. But that's due to my muscle and joint pain, heart dysfunction, and exercise-induced PH. For a week I tried charting calories consumed, vs calories burned via exercise (there's an iPod application that helps in doing that.) I found out that although my calorie intake is much less than most people, but the main problem is lack of enough exercise to burn what I do take in.

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I put on 13 pounds since Christmas and some before that and was getting pretty frustrated. I also thought I was the only one who gained weight with the sclero. I think some of stemmed from being depressed, some of it came from the prednasone (did I spell that right?) and the rest I don't know where it came from because I cut my calorie intake and started to exercise. I have dropped a couple of pounds since I feel super sick between the savella and methotrexate. I just blamed my good old German farmer's genes.... I will be sure to ask my Rheumy when I have my appointment in Sept. I never thought of a hypothyroidism problem before!
Susan

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I have gained weight too. So frustrating. The sclero has affected my colon so I have severe colonic inertia.

I have started seeing a chiropractor/nutritianist (3 weeks now). I exercise regularly, probably most than most , 5-7 days per week. I am toning up and have lost 5 pounds. My nutritianist is having me use this website http://myfitnesspal.com. It is a free site where you can chart your calories and exercise. I had been paying $17.95 per month to do the same thing at WeightWatchers. The site is awesome and really helps you understand how much of what you should be eating. I highly recommend it.

I'm getting married in November so I am super motivated to lose the weight. I just ordered some supplements as well. They aren't for weight loss as much as they are for helping put my body into better balance. The nutritionist did bloodwork to see where I was and found some deficeincies in vitamins and minerals and saw that my liver enzymes were a bit high due to all the prescription meds I had been taking (off of 7 out of 14 now). I am keeping the faith that this is the right path for me.

Hope this helps and good luck!

-Kris

-Kris

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i also have hypothyroid and when i first got sick i was loosing wait i went feom 155 to 120 and then i finally stop loosing wieght i wasnt trying i was eating all day. now im gaining wait like crazy and im barely eating.

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I have gained weight also. I ordered Sensa and it arrived today. You sprinkle it on your food, one for sweet stuff and one for salty. Will start on Monday.

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I to have gained weight, 40 lbs. Thyroid was a question because I have nodules. Thyroid testing has been in normal limits. I bought a book on the thyroid and when I brought it to the Endocrinologist to talk about it, his ego flared because I was questioning his diagnosis and the contradiction from the book. When I asked him what is correct, he raised his voice and said, "I am". Needless to say, I don't see him anymore. I also can't exercise much because of pulmonary fibrosis. It is so frustrating to keep being told to exercise, that's why your gaining weight. They just don't get, I CAN'T BREATH.
kcx2, I also have problems with my ear. Constantly have an earache. I haven't seen an ENT. I have just given up. Too many specialists and my Rheumy and PCP have tried. I took Prednisone last Fall for my lungs for a week and the ear pain went away, so I know it is related to inflammation.
I hate this disease but am thankful for each day that I am still around to enjoy. I don't and won't allow this disease define me. That's my job. Hang in there everyone, we are in this together.

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Hi Kim I also was wondering about weight gain, like you I barely eat and exercise and not one pound comes off. Also l have noticed that I have been falling alot which is weird considering I used to play all sorts of sports. In fact I took quite a tumble last nite which scared me to death. As far as my nose its a leaky faucet with my ears popping . I have yet to go to an ent. but I will. I have all the stuff you have, Reynauds, acid reflux and the T in Crest Syndrome which are like round open skin but not bleeding, I can't spell what they are called. Then something weird happened I lost 55 pounds without doing anything. so I can't figure it out. they tested thyroid. I do have a thicked lower bowel with absorbtion issues, so my gi put me on Zenpep which are enzymes. Quite nasty side effects.

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My naturopath recommended a book called "Why do I still have thyroid problems when my lab tests are normal" by Datis Kharrazian. My TSH isn't high enough to concern my doc, but I have Hashimoto's, based on high Thyroglobulin & TPO antibodies. I started taking T3 based on the recommendation of the ND and it made a huge difference for me. T4, the standard rx for hypothyroid, doesn't work for everyone - some people cannot make the necessary conversion to T3 - that would be one explanation for hypothyroid symptoms even if you have "normal" TSH. The 2 endos I saw refused to consider anything but TSH results; heaven forbid they would add my low morning cortisol to the mix, since an ACTH challenge proves my adrenals are functioning normally. Suffice to say I'm not impressed with the Endos I've seen and from my perspective, a ND with specialty training in hormone balance is a good source of help for hormone issues (how much they can do varies from state to state - where I live, a ND can function as a PCP, order blood tests, and write prescriptions. Might be covered by insurance for some.)

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This discussion reminds me that if you are taking alpha lipoic acid, you should know that it can partially block conversion of T4 to T3. So if you are taking levothyroxin (T4), you need to insist that your doctor order BOTH TSH and T3 tests in his monitoring of you.

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