Autoimmune disease: Anyone else unable to lose ANY weight??

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Let me give a little briefing on myself.

I am 300lbs, 5'7 and 25 yr old female. I have an autoimmune disease and am getting checked for thyroid problems. I was fed a LOT of sugar and junk as a child from my grandmother who was also suffering from the same autoimmune disease I have (i've read that sugar as a child can set you up to basically always be fat!). I was always overweight but did not become obese until my late teens. I have done all kinds of diets to lose weight, low carb worked best for me but once I got eating some carbs again I gained it all back and since then even when doing low carb diets have not been able to lose weight.

I eat very well, I have not eaten dairy in nearly two years, no sugar, no junk food (well, a few times a month I do have some naughty food). I eat veggies, veggies, veggies, brown rice pasta, brown rice, some fruit, chicken and very rarely beef.

I have not lost a single lb in all this time of not eating anything "bad". I recently stopped eating gluten as well (although I never did eat much bread, etc). It has been two weeks of eating pretty much nothing but veggies. Very little butter, no oil, truly nothing that would hinder weight loss.

I have not lost ANYTHING. AT ALL.

What do I do? Do I see a nutritionist?? Besides getting my thyroid checked what can I do?

To say I am frustrated would be a gross understatement. I am at the end of my rope. It has been years of eating so well, so carefully, and I am still just as fat as I was two years ago. I might as well eat junk and be the same size, is what I keep thinking. I am so worn out from constantly trying and failing.

HELP!
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Replies

  • taramaureen
    taramaureen Posts: 569 Member
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    I'm having the same issues and am seeing an endochrinologist for it. I think that's the best way to go is to make sure your thyroid isn't out of whack and stuff.
  • susannamarie
    susannamarie Posts: 2,148 Member
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    How much of it are you eating? Are you measuring carefully, weighing things that can be weighed, etc. ?

    You can still gain weight on "clean" eating, if you eat enough of it.
  • Sasseh42
    Sasseh42 Posts: 16
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    How much of it are you eating? Are you measuring carefully, weighing things that can be weighed, etc. ?

    You can still gain weight on "clean" eating, if you eat enough of it.

    My problem would most likely be I am not eating nearly enough. I have adopted a fluctuating calorie diet, not intentionally, just what is happening. One day is 50% of my calories, the next I do my best to get to my allotted calories or above. It is actually a diet recommended for those with health problems, interestingly enough!

    I am definitely not misweighing food, etc. I eat the same thing most days. Broccolli with a bit of chicken, spinach with a bit of butter, boiled or baked potatoes, etc. If I eat some raisins and almonds, I weigh them out.

    The only thing I have been doing bad is sushi once a week. But I only eat maki rolls and chicken or steak, nothing fried, no pasta, etc. So just the white rice is what is bad in that. But even then I am very careful at recording all I eat and while I do go over on those days, I WANT to go over on those days. I am, however, not going to be going to eat sushi anymore until I figure out wtf is going on.
  • Sasseh42
    Sasseh42 Posts: 16
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    I'm having the same issues and am seeing an endochrinologist for it. I think that's the best way to go is to make sure your thyroid isn't out of whack and stuff.

    Ah yes endicronologist. I will have to make an appointment with one. The amount of specialists I have seen in the past two years is heartbreaking :(

    I need to get this figured out.

    I would love to hear more about your experience with this. I feel so absolutely alone in this. I have skinny minny friends who eat whatever they want and don't gain a pound. None of them can believe how strict I am and I am still so fat. There has to be something wrong. My husband can';t believe it either. He eats so much and sees that I eat less than half what he eats (if we are sharing a meal) and doesn't understand how I am not half of what I weigh now. We go on walks everyday too.

    I have also had a lump behind my ear for my entire life. I have had my autoimmune disease my entire life *but not diagnosed until 2 years ago* and wonder if it is related?
  • kyt1206
    kyt1206 Posts: 101
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    Sounds like a metabolic/hormonal issue... but without looking at your diet or blood work for general assessment of digestive organ functions, it's really a huge tossup...

    But from what you describe, do you have a vitamin deficiency? That can throw a kink in metabolism, are you taking multivitamins or keeping track of your vitamins intake through food?

    If you eat the same stuff generally, you tend to limit yourself to a certain number of foods, lack of variety over a long period of time can produce a vitamin deficiency.
  • Sasseh42
    Sasseh42 Posts: 16
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    http://thyroid.about.com/od/loseweightsuccessfully/a/thyroid-diet.htm

    Reading this checklist at the bottom, I have a surprising number of these symptoms!! I have about 10 of them. Wow!
  • Sasseh42
    Sasseh42 Posts: 16
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    Sounds like a metabolic/hormonal issue... but without looking at your diet or blood work for general assessment of digestive organ functions, it's really a huge tossup...

    But from what you describe, do you have a vitamin deficiency? That can throw a kink in metabolism, are you taking multivitamins or keeping track of your vitamins intake through food?

    If you eat the same stuff generally, you tend to limit yourself to a certain number of foods, lack of variety over a long period of time can produce a vitamin deficiency.

    I take Vitamin D 10,000 IU a day but I do want to get checked for vitamin deficiency. I have a requestion form for my blood test, I forgot to ask my doctor to check out my vit d levels, would it be wrong to check off the test on the form?? I have to pay out of pocket for it anyways... is that a big no no?

    I take curcumin for my disease, as well as fish oil, and calcium supplement.

    You're definitely right! I know I need to switch it up more and I do try. It has been hard since going totally gluten free. I am going to be adding in brown rice in the next few weeks so this is def not permanent.

    I have also checked my body ph and am in metabolic acidosis. The diet I am on is actually an attempt to reverse the low ph by eating alkalkine forming foods. So far, it has not worked at all.
  • beckajw
    beckajw Posts: 1,738 Member
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    Depends on the autoimmune disease. I have a couple. I have been able to lose weight, but it's a slow process with my medications constantly being readjusted.

    You really should be seeing an endocrinologist regularly. Actually, you should have seen your endocrinologist before starting a diet/exercise progam.

    A thyroid problem can also cause weight loss issues (can also be an autoimmune issue).

    The best advice you can get is to go see a doctor. A specialist, not your GP.
  • Sasseh42
    Sasseh42 Posts: 16
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    And one thing I have always thought meant I had a FAST metabolism is that when I go to the washroom after eating, let's say I eat lettuce, well 1-4 hours later I will see that lettuce in my waste. Pretty much everything I eat, some of it will come through and still be intact.

    Sorry if that is gross, but I think it might be a piece of the puzzle.... seems like I am not digesting things properly and they take no time at all to go through my system (so why am I not UNDERweight!?)
  • Sasseh42
    Sasseh42 Posts: 16
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    Depends on the autoimmune disease. I have a couple. I have been able to lose weight, but it's a slow process with my medications constantly being readjusted.

    You really should be seeing an endocrinologist regularly. Actually, you should have seen your endocrinologist before starting a diet/exercise progam.

    A thyroid problem can also cause weight loss issues (can also be an autoimmune issue).

    The best advice you can get is to go see a doctor. A specialist, not your GP.

    You know I have asked my GP over and over, why am I having trouble losing? I think they sort of brush fat people off, assume we are just lazy and eating too much. She is a lovely lady my GP but I do not feel like she is the best doctor out there. I think she should have recommended an endicronologist a long time ago. I feel stupid for not insisting. But I have gone to SO many specialists to try to figure out my disease and potential food allergies that it just slipped m ymind. And to tell the truth- I've always blamed myself so much for being fat, I never really thought it could even be a thyroid problem. And when I got it checked 2 years ago my doc said it was fine.
  • beckajw
    beckajw Posts: 1,738 Member
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    Depends on the autoimmune disease. I have a couple. I have been able to lose weight, but it's a slow process with my medications constantly being readjusted.

    You really should be seeing an endocrinologist regularly. Actually, you should have seen your endocrinologist before starting a diet/exercise progam.

    A thyroid problem can also cause weight loss issues (can also be an autoimmune issue).

    The best advice you can get is to go see a doctor. A specialist, not your GP.

    You know I have asked my GP over and over, why am I having trouble losing? I think they sort of brush fat people off, assume we are just lazy and eating too much. She is a lovely lady my GP but I do not feel like she is the best doctor out there. I think she should have recommended an endicronologist a long time ago. I feel stupid for not insisting. But I have gone to SO many specialists to try to figure out my disease and potential food allergies that it just slipped m ymind. And to tell the truth- I've always blamed myself so much for being fat, I never really thought it could even be a thyroid problem. And when I got it checked 2 years ago my doc said it was fine.

    First, you are not stupid.

    Second, insist that your GP send you to an endocrinologist. GPs don't always test thyroid functioning correctly--or don't read the results correctly.

    Go, insist that she recommend an endocrinologist. It's worth it for your health.
  • taramaureen
    taramaureen Posts: 569 Member
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    I'm having the same issues and am seeing an endochrinologist for it. I think that's the best way to go is to make sure your thyroid isn't out of whack and stuff.

    Ah yes endicronologist. I will have to make an appointment with one. The amount of specialists I have seen in the past two years is heartbreaking :(

    I need to get this figured out.

    I would love to hear more about your experience with this. I feel so absolutely alone in this. I have skinny minny friends who eat whatever they want and don't gain a pound. None of them can believe how strict I am and I am still so fat. There has to be something wrong. My husband can';t believe it either. He eats so much and sees that I eat less than half what he eats (if we are sharing a meal) and doesn't understand how I am not half of what I weigh now. We go on walks everyday too.

    I have also had a lump behind my ear for my entire life. I have had my autoimmune disease my entire life *but not diagnosed until 2 years ago* and wonder if it is related?


    It could be related. I think going to see someone who specializes in your disease as well as an endochrinologist would help. I have a pretty goodish diet and before I had a hysterectomy (which is my main issue) I lost weight easily. I'm going to see my endochrinologist next week to get the rest of my lab work results back. We're still working on it. But the jist is I eat decently, definitly don't overeat, and I exercise (I completed a half marathon last month) but haven't lost much for a year. Up until the last few weeks or so I hadn't lost a single pound!
  • calliope_music
    calliope_music Posts: 1,242 Member
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    i would definitely see an endocrinologist. it took me a YEAR to lose 30 lbs despite an increase in exercise and a change in eating habits. my endocrinologist diagnosed me with PCOS and insulin resistance and sent me to a nutritionist, who set me up on a reduced carb diet/high protein diet, and recommended i start Metformin. i've lost 25 lbs in less than 4 months after that. good luck!
  • pigwidgeon82
    pigwidgeon82 Posts: 79 Member
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    i am going to chime in and say the same thing as all those saying go see an endocrinologist.

    i have hashimoto's disease and am hypothryoid (sometimes hyper). i have found it very difficult to lose weight, but i am finally on a good dose of medicine and have lost 12 lbs since starting MFP 2 weeks ago. the weight loss is slow but steady. it's easy to get discouraged, but remember to keep at it and eventually your body will respond. as long as you are being properly treated!
  • babyblooeyes
    babyblooeyes Posts: 67 Member
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    Depends on the medications you are on as well. When I was on steroids chronically, I couldn't lose weight at all because that slows my metabolism. Some of my other meds can hinder things as well but so far so good. Make sure that you are eating enough: above your BMR and 20% below your TDEE.
  • shmo1969
    shmo1969 Posts: 85 Member
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    I have Hypothyroidism and I am on Synthroid for it. Helps, but I still find I need to do lots of cardio in order to lose any weight (to keep my metabolism strong)...but it can be done. Are you doing any kind of exercise? I also need to be diligent with my diet and measure everything. Good luck to you and I wish you the best with your Thyroid. :)
  • stringqueen16
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    Hi there - I'm 23 and I was diagnosed with Lupus when I was 11 years old. I was put on steroids and gained A LOT of weight. That weight is ridiculously hard to take off. I started my weight loss with a big loss the first week, then basically stalled out for a couple months only losing a few more pounds. This week my weight loss seems to have gone back on the fast lane. It comes and goes. It's frustrating. The important thing for me is to just remind myself to take the time to celebrate the small victories...because when you have an AI disease...every small victory helps.
  • kelzpop
    kelzpop Posts: 156 Member
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    And one thing I have always thought meant I had a FAST metabolism is that when I go to the washroom after eating, let's say I eat lettuce, well 1-4 hours later I will see that lettuce in my waste. Pretty much everything I eat, some of it will come through and still be intact.

    Sorry if that is gross, but I think it might be a piece of the puzzle.... seems like I am not digesting things properly and they take no time at all to go through my system (so why am I not UNDERweight!?)

    I have that same problem with Crohn's and I am definitely not underweight (typical of Crohn's). My thyroid tests are wonky, one time they will be normal and the next time they will be off. But apparently not enough for them to officially diagnose me and put me on meds. It could be that your body has a problem digesting some foods, but not all. For me, I also know that soda was a HUGE factor in my weight. I drank it all the time, and even though I had an idea how much I was taking in, I was ignoring what it was doing to me. I can honestly say, since I've quit drinking it that I feel better.

    What are you drinking?

    I think you need to sit down with you physician and have a heart to heart. Get to a specialist for your disease, an endocrinologist for the possible thyroid issue and then when they have worked all that out visit a nutritionist to help you set up a diet plan.
  • kyt1206
    kyt1206 Posts: 101
    Options
    Depends on the autoimmune disease. I have a couple. I have been able to lose weight, but it's a slow process with my medications constantly being readjusted.

    You really should be seeing an endocrinologist regularly. Actually, you should have seen your endocrinologist before starting a diet/exercise progam.

    A thyroid problem can also cause weight loss issues (can also be an autoimmune issue).

    The best advice you can get is to go see a doctor. A specialist, not your GP.

    You know I have asked my GP over and over, why am I having trouble losing? I think they sort of brush fat people off, assume we are just lazy and eating too much. She is a lovely lady my GP but I do not feel like she is the best doctor out there. I think she should have recommended an endicronologist a long time ago. I feel stupid for not insisting. But I have gone to SO many specialists to try to figure out my disease and potential food allergies that it just slipped m ymind. And to tell the truth- I've always blamed myself so much for being fat, I never really thought it could even be a thyroid problem. And when I got it checked 2 years ago my doc said it was fine.

    Nice doctors who do not do anything for you doesn't matter - in the end, they did nothing for you, they just did nothing nicely. Make sure your doctor is actively trying, some days they're literally too busy or too limited in what they *can* do for you. If they don't initiate your referral and you feel that you should see a specialist you should just go. Some insurance plans do not require a referral so make sure you know what your plan covers.

    If I might suggest, if you are having emotional issues with your body weight, talk it over with your GP or a counselor, sometimes it is mental things that are blocking our path, not physical things. If you can monitor your behavior and become more aware of what goes through your mind when you're thinking of your self image and how you relate to food, this may help.
  • Sasseh42
    Sasseh42 Posts: 16
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    I am actually NOT on any meds for my RA right now, I was on some before but have been managing through CAREFUL Diet. I really do not eat much bad stuff at all! I can't or I feel it the next day. So the meds aren't why I am having troubles. (I know the meds put weight on people so it's a good question to ask if I am on any)

    I used to be a soda fiend. Couldnt get enough of it. I have not had soda in the house for over a year. I drink it maybe twice a month.

    I was so sure when I cut out dairy, sugar and all white flour I would lose weight and NOTHING has happened at all.

    I definitely think your point of view effects weight loss! However I have been VERY upbeat about it. I thought with all the positive changes I made this was finally my ticket to being thinner.... I was sure I was losing weight until I checked my scale and for the last year+ have NOT CHANGED MY WEIGHT AT ALL! I will say that at this point I am quite bummed... I am not sad because I am fat, I love myself no matter what, but I am sad that all my trying has amounted to NOTHING. I am upset because I sacrifice every day of my life to not eat the tasty junk food and I weigh just as much as I did when I was eating delicious, delicious junk food. It's bizarre!

    I eagerly await my test results and if it does not show my thyroid as being problematic, I am not stopping there. I will see whoever I can about this. This has to stop. I eat well, I exercise and I think positive (most of the time!) and I am still as fat as I was 3 years ago!!! This should not even be physically POSSIBLE but here I am!

    Thanks so much for everyones kind and thoughtful and helpful replies. It very much helps to know I AM NOT ALONE!