losing weight with a shocking diagnoses
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EyeWant2bethin
Posts: 25 Member
I'm 27 i weigh 303 pounds I have tried to lose weight in past. Half is my fault for foods I eat and the lack of motivation. I also have an unsupportive spouse. Oh he is great at acting supportive but never makes a long term change to help. Much like a kid told to clean his room. November 4th a week after moving into our new home I had been getting sick for weeks for an unknown reason but nothing severe enough to make me think it was anything serious. I got shocking news. I had just been told my mom who I hadn't met had died at 47 in August no one cared to bury her or mourne her passing she was creamated and that was that. At this point I had no idea I had a ticking time bomb in me the reaction my family had to what was devastating to me set it off. A little background when I was born I was very sick and should have died. The Dr advised I would never walk talk etc.. basically be a vegatable my whole life. Well that didn't happen but everyone missed what was really wrong with me. They all assumed my mom had drank and did drugs while pregnant with me. No one had a clue what really ailled me. It also killed my mom at a very early age. Apparently there is a heriditary condition you can be born with that will cause this exact issue. It's called prolactinoma a benign hormone secreting tumor on the pituitary gland. My body basically was born thinking it was pregnant. So it damaged my liver and caused Pcos to hit me in addition made my body go into fat storing mode 24/7. Everything I eat my liver turns to fat. I got diagnosed Mar 23 2015. On top of which I have a sit down job. I know it just keeps on piling up... So basically my drs all want me to lose weight to fix everything. I am on a tumor treating med that is making my hair fall out even though it was not a listed side effect I take vitamin D E Cod liver oil with vitamin a & d milk thistle. Since I started my treatment my hormone level has regulated my weight gain has stablized. But I need help and guidance. I have non alchoholic fatty liver disease now and have to lose 60 pounds to get my liver healthy again. Please help i am willing to give it my all.
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Replies
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Oh wow, you have a lot of stuff going on! I'm sorry to hear about your mom. Even though you haven't met, that's got to be quite emotionally shocking to hear.
I have a friend of mine who also had a benign tumor on her pituitary gland, she had surgery to have it removed. I'm not sure if that is possible for you, I'm sure your doctors would know more about this for your case specifically.
Considering your various medical issues, I think you'd be best off talking to a nutritionist who knows how to deal with these issues. I know my friend's doctor recommended a ketogenic diet for her, you can read up more about that sort of diet on this website or on the web. But I'm not a doctor or nutritionist so I'm not sure if this particular diet would be appropriate for you.
*hug* good luck to you
Get involved with the community here, people seem quite helpful. 0 -
Sorry about your mum, just said goodbye to mine a couple of weeks ago.
First thing is to log what you are eating honestly and accurately, your diary is open but empty.
Restricting carbohydrates has been shown to benefit non-alcoholic fatty liver disease so that might be an option to consider, but for starters make sure you get about 100g of protein and at least 30g of fats per day and let's see what you eat.0 -
I second that . . . with the pituitary issue, I just don't know if the regular "eat less/exercise more" is exactly what you need. Probably something similar, but there might be some kind of twist for you. A doctor and professional nutritionist is probably where you should turn.
I will tell you that I was diagnosed with NAFL a few months ago. My liver enzymes were 78. After 3 months of exercise and eating less, I had lost something like 40 pounds when I went back (I was still very, very obese), and my liver enzymes tested great. My NAFL is gone. So, at least THAT part of it DOES have some hope. It's not going to be easy, but it is possible.
Good luck . . . I hope you get everything figured out!0 -
What is your medical team saying? Your dietician, your doctor?
Losing weight is about eating fewer calories than you burn, but anyone with a medical diagnosis needs to follow medical advice0 -
http://www.ncbi.nlm.nih.gov/pubmed/21367948 "Two weeks of dietary intervention (≈4.3% weight loss) reduced hepatic triglycerides by ≈42% in subjects with NAFLD; however, reductions were significantly greater with dietary carbohydrate restriction than with calorie restriction. "0
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EyeWant2bethin wrote: »I'm 27 i weigh 303 pounds I have tried to lose weight in past. Half is my fault for foods I eat and the lack of motivation. I also have an unsupportive spouse. Oh he is great at acting supportive but never makes a long term change to help. Much like a kid told to clean his room. November 4th a week after moving into our new home I had been getting sick for weeks for an unknown reason but nothing severe enough to make me think it was anything serious. I got shocking news. I had just been told my mom who I hadn't met had died at 47 in August no one cared to bury her or mourne her passing she was creamated and that was that. At this point I had no idea I had a ticking time bomb in me the reaction my family had to what was devastating to me set it off. A little background when I was born I was very sick and should have died. The Dr advised I would never walk talk etc.. basically be a vegatable my whole life. Well that didn't happen but everyone missed what was really wrong with me. They all assumed my mom had drank and did drugs while pregnant with me. No one had a clue what really ailled me. It also killed my mom at a very early age. Apparently there is a heriditary condition you can be born with that will cause this exact issue. It's called prolactinoma a benign hormone secreting tumor on the pituitary gland. My body basically was born thinking it was pregnant. So it damaged my liver and caused Pcos to hit me in addition made my body go into fat storing mode 24/7. Everything I eat my liver turns to fat. I got diagnosed Mar 23 2015. On top of which I have a sit down job. I know it just keeps on piling up... So basically my drs all want me to lose weight to fix everything. I am on a tumor treating med that is making my hair fall out even though it was not a listed side effect I take vitamin D E Cod liver oil with vitamin a & d milk thistle. Since I started my treatment my hormone level has regulated my weight gain has stablized. But I need help and guidance. I have non alchoholic fatty liver disease now and have to lose 60 pounds to get my liver healthy again. Please help i am willing to give it my all.
I am very sorry for what you have gone through. I admit I am no dr, but are you sure that the tumour has anything to do with the rest of the issues, and they are not just weight related? My only experience with prolactinoma is a friend who has it, and weight gain was not among the issues she ever reported, her main concerns were all fertility related. The things you describe, sound more like related to eating habits than an illness. I also must say that a quick google search does not relate your diagnosis to fat storage, liver failure or PCOS. I am not doubting you have a diagnosis that is very serious, but I think you need to make 100% clear with the dr what is caused by the tumour, what the meds will help with, which part of your health issues is caused by lifestyle, and what exactly you need to do. I understand you are overwhelmed, but you need to talk again to your dr, ask for specific advice, meet with a dietician, and change your lifestyle.0 -
I am sorry to hear everything going on in your life right now, but you are making great strides just by taking the first steps and figuring out how to get the weight off to improve the parts of your health you can. I second having your doctor send you to a Registered Dietician who specializes in your health issues. There is also a PCOS group on here you might look to join.... Best wishes0
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I did a quick browse and it looks like any sensible diet with reduced calories will make a difference. Weight loss and exercise are the most effective treatments for fatty liver disease. Insist on help from a dietitian and start logging your food (this will help when you sit down with a dietitian too) and then use the information to make improvements in your meals. You may be able to do this with small changes, like roasted chicken instead of breaded and fried, choose salad more often, replace sugared beverages, and track your snacking.
For exercise, walking and swimming will be the easiest on your joints until you are lighter.0 -
My best friend has a prolactinoma, and we were amused that the side effect on her tumor shrinking meds that was the MOST concerning was in fact, "compulsive gambling."
That amusing anecdote aside, start somewhere. Anywhere. Make a tiny change every week, and you will eventually snowball into a healthy lifestyle. Being pregnant (or having your body think that you are pregnant) doesn't necessarily make you take on fat. It's generally the urge to eat more (progesterone IS a *kitten* that way) and moving less (bed rest is a hellacious prescription for finishing off a difficult pregnancy) that generally causes significant weight gain during pregnancy. And your body will take on extra water/blood volume but that takes care of itself. Therefore, you need to move more and eat less to lose the weight you do not want, however you can. (And there are endless complications here from tiredness and nausea from meds or just the condition itself, and I'm SO, SO sorry you're dealing with all this.) It can be as simple as waking a little more every day. Switching from soda to water. And so on. Don't try to do everything all at once, because that can be overwhelming. Make a change and stick to it until it's a habit. Then make another change. You can absolutely do it.0 -
ElizabethKalmbach wrote: »My best friend has a prolactinoma, and we were amused that the side effect on her tumor shrinking meds that was the MOST concerning was in fact, "compulsive gambling."
I'd LOVE to see how they teased this side effect out of the clinical trials data.
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Buy a food scale. Weigh and log everything you eat. Get a good idea of how much you are truly eating in a day. Once you've done that, you can then begin to make small, sustainable changes toward your goal. Switch out one soda a day for water. Then two, etc. Then make another little change, maybe commit to a 10 minute walk every day. Once that is a set habit, up it to 15 minutes, then 20. Take small bites of the elephant! You can do this!0
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For some perspective, prolactinoma is the most easily treatable type of pituitary tumor. It can be treated without surgery. Hypophysectomy (the surgery to remove the pituitary gland) is very risky and then requires lifetime meds after surgery.
I'm glad you have a diagnosis and are getting treatment.0 -
I'm sorry that you are going through all this. What kind of doctor are you seeing? I can only speak from my personal experience. I was diagnosed with PCOS about twenty years ago and after several years finally sought out an endocrinologist. One of the first things they did was test for Cushing's disease, which has similar symptoms and can be caused by a pituitary tumor. I did not have Cushing's and they confirmed the PCOS diagnosis. If you are not seeing an endocrinologist, you might consider it. Some people have luck treating their PCOS symptoms with metformin, which is a diabetes medication. Unfortunately, it did not improve any of my symptoms. I've struggled with my weight for years, but I'm finally seeing some loss by tracking my calories. It's slow going, but it is working.0
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ElizabethKalmbach wrote: »My best friend has a prolactinoma, and we were amused that the side effect on her tumor shrinking meds that was the MOST concerning was in fact, "compulsive gambling."
That amusing anecdote aside, start somewhere. Anywhere. Make a tiny change every week, and you will eventually snowball into a healthy lifestyle. Being pregnant (or having your body think that you are pregnant) doesn't necessarily make you take on fat. It's generally the urge to eat more (progesterone IS a *kitten* that way) and moving less (bed rest is a hellacious prescription for finishing off a difficult pregnancy) that generally causes significant weight gain during pregnancy. And your body will take on extra water/blood volume but that takes care of itself. Therefore, you need to move more and eat less to lose the weight you do not want, however you can. (And there are endless complications here from tiredness and nausea from meds or just the condition itself, and I'm SO, SO sorry you're dealing with all this.) It can be as simple as waking a little more every day. Switching from soda to water. And so on. Don't try to do everything all at once, because that can be overwhelming. Make a change and stick to it until it's a habit. Then make another change. You can absolutely do it.
All of this. You have had quite a few shocking bits of information thrown at you. Taking small steps can most definitely lead to big changes. In addition, I would start logging your food. Don't be overly concerned about perfect measuring or how many calories MFP recommends. Just log, you will learn A LOT about your diet and lifestyle habits just from doing this. Take it slow. You got this0 -
Thank you *hugs back* it was really tuff especially when the tumor was untreated. Luckily now my blood is normal again thru a lot of hard work it's not so heavy on me anymore. Thanks for the advice I agree I think a nutritionist may be my best option thank you.Oh wow, you have a lot of stuff going on! I'm sorry to hear about your mom. Even though you haven't met, that's got to be quite emotionally shocking to hear.
I have a friend of mine who also had a benign tumor on her pituitary gland, she had surgery to have it removed. I'm not sure if that is possible for you, I'm sure your doctors would know more about this for your case specifically.
Considering your various medical issues, I think you'd be best off talking to a nutritionist who knows how to deal with these issues. I know my friend's doctor recommended a ketogenic diet for her, you can read up more about that sort of diet on this website or on the web. But I'm not a doctor or nutritionist so I'm not sure if this particular diet would be appropriate for you.
*hug* good luck to you Get involved with the community here, people seem quite helpful.
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Thank you duly noted. I am just starting this so I will start logging everything. Less carbs more proteins and veggies got it. Can you recommend any low fat meats or alternatives that are high in protein?Sorry about your mum, just said goodbye to mine a couple of weeks ago.
First thing is to log what you are eating honestly and accurately, your diary is open but empty.
Restricting carbohydrates has been shown to benefit non-alcoholic fatty liver disease so that might be an option to consider, but for starters make sure you get about 100g of protein and at least 30g of fats per day and let's see what you eat.
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DaveAkeman wrote: »I second that . . . with the pituitary issue, I just don't know if the regular "eat less/exercise more" is exactly what you need. Probably something similar, but there might be some kind of twist for you. A doctor and professional nutritionist is probably where you should turn.
I will tell you that I was diagnosed with NAFL a few months ago. My liver enzymes were 78. After 3 months of exercise and eating less, I had lost something like 40 pounds when I went back (I was still very, very obese), and my liver enzymes tested great. My NAFL is gone. So, at least THAT part of it DOES have some hope. It's not going to be easy, but it is possible.
Good luck . . . I hope you get everything figured out!
If it helps I just got my blood tests back for the first time since my diagnoses my blood is normal accross the board. Now my next feat is to lose weight. I am very lucky with the tumor my treatment is working far better than anyone could have predicted. As to my liver it has been messed up since birth so I don't think a change in diet will fix it permanently but a life style change will. I currently walk 3 miles a day 100 crunches and arm curls and ride my bike 3 xs a week walk my dogs 4 Australian Shepherds 4xs a week . On the weekends I walk as much as I can. I am currently losing nothing. I eat pretty wholistic. Lately between working and all that just haven't had a chance to log it all.0 -
http://www.ncbi.nlm.nih.gov/pubmed/21367948 "Two weeks of dietary intervention (≈4.3% weight loss) reduced hepatic triglycerides by ≈42% in subjects with NAFLD; however, reductions were significantly greater with dietary carbohydrate restriction than with calorie restriction. "
This is the advice I needed thank you so much0 -
EyeWant2bethin wrote: »I'm 27 i weigh 303 pounds I have tried to lose weight in past. Half is my fault for foods I eat and the lack of motivation. I also have an unsupportive spouse. Oh he is great at acting supportive but never makes a long term change to help. Much like a kid told to clean his room. November 4th a week after moving into our new home I had been getting sick for weeks for an unknown reason but nothing severe enough to make me think it was anything serious. I got shocking news. I had just been told my mom who I hadn't met had died at 47 in August no one cared to bury her or mourne her passing she was creamated and that was that. At this point I had no idea I had a ticking time bomb in me the reaction my family had to what was devastating to me set it off. A little background when I was born I was very sick and should have died. The Dr advised I would never walk talk etc.. basically be a vegatable my whole life. Well that didn't happen but everyone missed what was really wrong with me. They all assumed my mom had drank and did drugs while pregnant with me. No one had a clue what really ailled me. It also killed my mom at a very early age. Apparently there is a heriditary condition you can be born with that will cause this exact issue. It's called prolactinoma a benign hormone secreting tumor on the pituitary gland. My body basically was born thinking it was pregnant. So it damaged my liver and caused Pcos to hit me in addition made my body go into fat storing mode 24/7. Everything I eat my liver turns to fat. I got diagnosed Mar 23 2015. On top of which I have a sit down job. I know it just keeps on piling up... So basically my drs all want me to lose weight to fix everything. I am on a tumor treating med that is making my hair fall out even though it was not a listed side effect I take vitamin D E Cod liver oil with vitamin a & d milk thistle. Since I started my treatment my hormone level has regulated my weight gain has stablized. But I need help and guidance. I have non alchoholic fatty liver disease now and have to lose 60 pounds to get my liver healthy again. Please help i am willing to give it my all.
I am very sorry for what you have gone through. I admit I am no dr, but are you sure that the tumour has anything to do with the rest of the issues, and they are not just weight related? My only experience with prolactinoma is a friend who has it, and weight gain was not among the issues she ever reported, her main concerns were all fertility related. The things you describe, sound more like related to eating habits than an illness. I also must say that a quick google search does not relate your diagnosis to fat storage, liver failure or PCOS. I am not doubting you have a diagnosis that is very serious, but I think you need to make 100% clear with the dr what is caused by the tumour, what the meds will help with, which part of your health issues is caused by lifestyle, and what exactly you need to do. I understand you are overwhelmed, but you need to talk again to your dr, ask for specific advice, meet with a dietician, and change your lifestyle.
The tumor came from my mom. She died from it. As to the rest I was born with the tumor it has gone undiagnosed my entire life. The reason I know is when I was born my liver was so messed up I nearly died. In addition this is not a result of unhealthy eating. I can eat straight lean meats and veggies none stop for 6 months and still gain weight. When your liver is messed up this badly and trust me it is. Combine that with your body constantly producing prolactin which makes you menstrate irregular and your ovaries to become encased in cysts and in addition the prolactin is in such excess that it damages your liver further. You get a crapstorm. To put it bluntly I had a dad who cared more about himself than getting the right tests when I was born. He assumed my mom drank and did drugs when pregnant with me rather than acknkwledgeing I had a deeper issue. I was a month and a half over due. When in high school I was in jrotc, weightlifting, and I had a regular exercise routine and was constantly on a diet but I still gained weight. So next time you try to Google someone's condition and try to act like you know it's their fault, don't. I have been to more drs than you know been examined had untold needles in me. I even have had mri's when in addition to which showed its touching my right optic nerve which I coincidently have been blind in since birth. Also I have had 2 mini strokes and 2 traumatic brain injuries as a result from all this. Medical conditions are real. I ask for help because I want change not someone pointing a finger at me. If this were a matter of eating habits and exercise habits I would be a size 0.0 -
Thank you I willSandcastles61 wrote: »I am sorry to hear everything going on in your life right now, but you are making great strides just by taking the first steps and figuring out how to get the weight off to improve the parts of your health you can. I second having your doctor send you to a Registered Dietician who specializes in your health issues. There is also a PCOS group on here you might look to join.... Best wishes
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