rinny2
04-21-2006, 07:35 AM
i'm not sure the first one got posted...so i'm writing another post.
I have inadvertantly abused laxatives for 2 years due to having IBS. I do not have an eating disorder although i did not eat very healthy due to the ibs. I ate a lot of carbohydrates. Several months ago, my IBS began to improve so I discontinued the laxatives. Around that same time, I noticed pretty severe edema in my lower legs,feet (pitting) and edema all the way up into my hips/buttocks. I could no longer fit in my clothes. After discontinuing the laxatives...it worsened to the point that at times I've been about 15 lbs. over my normal weight. it's been very depressing, my muscles have ached horribly.
I made the assumption that it was due to laxative abuse, my low blood pressure (107/60ish), my over-eating of carbs, my chronic dehydration (i just don't drink enough)...and remedied these (except for the low blood pressure which obviously i've always had). (My hr is low 58...and always is. I'm athletic.) But there was no improvement.
I went to my Doctor. She was completely stumped. My chemistry panel was normal except for showing that I was a tad dehydrated which she misinterpreted as possible kidney problems so she wanted to run a 24 hour ua to check for proteinuria (this seemed unnecessary being that my creatinine was only a speck high, my BUN normal, and my albumin normal). My thyroid was normal BACK in NOV. of 2005. She wanted to repeat this. This seemed reasonable. She wanted to do chest radiographs even though my my heart sounds normal and I don't have any real signs of heart disease. Just the way things worked out at the lab..i got the chest xrays done (i assume normal as it's been a month and i've not heard back) but i did not get the thyroid test done (unfortunately). And I think the urine test is stupid -- protein loss does not seem to be the cause of my edema or my albumin wouldn't be normal. Money is somewhat of an issue for me...so I need her to be somewhat judicial in her testing. She wanted to take me off my antidepressant ... she seemed to be grasping at straws (i'm on wellbutrin, topamax, and then bactrim for acne).
I started taking diurex (on my own ...) 1 gram q 12 hrs for the first day and then i immediately wean down...but as soon as i wean down...i get the edema back. And NOTE: i NEVER get rid of the edema ... a few lbs at most. But at least it's such that my muscles no longer hurt ... and i can see the bones in my feet again.
I have cut down my carbs, lowered my salt to less than 2000mg/day, drink 12 glasses/day water, trying hard not to become reliant on these diuretics (because I know I'll end up in the same boat), I exercise, I sleep with my legs elevated above my heart. What more can i possibly do. This has been going on since early February. Help me please....i want to cry when i see i look like a baloon animal and I can't fit into any of my clothes. And while I don't have an eating disorder...it's very hard to eat healthy when you feel like a fat cow.
Could this really be due to low thyroid when i was normal back in NOV? I'll get it checked but could there be other causes? Is this laxative withdrawal a real thing? Can it take this long for my body to go back to normal? Is my low blood pressure a problem? I feel like I'm fighting two problems ...using the diuretics to get rid of the fluid but then it lowers my blood pressure so that just tells my kidneys to hold on to the water. But without the diuretics...NOTHING was budging. At least now I pee.
Thanks...
I have inadvertantly abused laxatives for 2 years due to having IBS. I do not have an eating disorder although i did not eat very healthy due to the ibs. I ate a lot of carbohydrates. Several months ago, my IBS began to improve so I discontinued the laxatives. Around that same time, I noticed pretty severe edema in my lower legs,feet (pitting) and edema all the way up into my hips/buttocks. I could no longer fit in my clothes. After discontinuing the laxatives...it worsened to the point that at times I've been about 15 lbs. over my normal weight. it's been very depressing, my muscles have ached horribly.
I made the assumption that it was due to laxative abuse, my low blood pressure (107/60ish), my over-eating of carbs, my chronic dehydration (i just don't drink enough)...and remedied these (except for the low blood pressure which obviously i've always had). (My hr is low 58...and always is. I'm athletic.) But there was no improvement.
I went to my Doctor. She was completely stumped. My chemistry panel was normal except for showing that I was a tad dehydrated which she misinterpreted as possible kidney problems so she wanted to run a 24 hour ua to check for proteinuria (this seemed unnecessary being that my creatinine was only a speck high, my BUN normal, and my albumin normal). My thyroid was normal BACK in NOV. of 2005. She wanted to repeat this. This seemed reasonable. She wanted to do chest radiographs even though my my heart sounds normal and I don't have any real signs of heart disease. Just the way things worked out at the lab..i got the chest xrays done (i assume normal as it's been a month and i've not heard back) but i did not get the thyroid test done (unfortunately). And I think the urine test is stupid -- protein loss does not seem to be the cause of my edema or my albumin wouldn't be normal. Money is somewhat of an issue for me...so I need her to be somewhat judicial in her testing. She wanted to take me off my antidepressant ... she seemed to be grasping at straws (i'm on wellbutrin, topamax, and then bactrim for acne).
I started taking diurex (on my own ...) 1 gram q 12 hrs for the first day and then i immediately wean down...but as soon as i wean down...i get the edema back. And NOTE: i NEVER get rid of the edema ... a few lbs at most. But at least it's such that my muscles no longer hurt ... and i can see the bones in my feet again.
I have cut down my carbs, lowered my salt to less than 2000mg/day, drink 12 glasses/day water, trying hard not to become reliant on these diuretics (because I know I'll end up in the same boat), I exercise, I sleep with my legs elevated above my heart. What more can i possibly do. This has been going on since early February. Help me please....i want to cry when i see i look like a baloon animal and I can't fit into any of my clothes. And while I don't have an eating disorder...it's very hard to eat healthy when you feel like a fat cow.
Could this really be due to low thyroid when i was normal back in NOV? I'll get it checked but could there be other causes? Is this laxative withdrawal a real thing? Can it take this long for my body to go back to normal? Is my low blood pressure a problem? I feel like I'm fighting two problems ...using the diuretics to get rid of the fluid but then it lowers my blood pressure so that just tells my kidneys to hold on to the water. But without the diuretics...NOTHING was budging. At least now I pee.
Thanks...
Sponsor
feelbad
04-21-2006, 09:46 AM
When you say that your creatinitne was just a 'speck high' does this mean it is or was actually out of the normal ranges at all??I have actual kidney disease and have been seeing a nephrologist now ever since it was discovered back in 99.my kidneys are just covered with huge globs of cysts but thankfully my labs have still been in the normal ranges,even my creatinine.
you see,the thing about labs is,i know for sure with the kidneys and the liver,is that you will not see any actual changes in your labs til the real damage gets to a certain point,then you will see changes in the creatinine and other labs will start to change as well.from what my neph told me,once my creatinine starts to go out of range,we will be doing a bit more treatment than we are doing now. just the fact that your creatinine was or is actually out of the normal range at all would signify that there IS indeed some sort of condition/disease process going on in the kidneys,that most definitely needs further evaluation by either a nephrologist or urologist.I am not too sure what the actual differences are between the two speacailties but they both would be of help to you.once my kidney disease was actually Dxed upon ultrasound,my primary sent me straight to the neph that I am seeing now.
so,what was the actual result of the 24 hour urine test?do you actually have any protien in your urine?i really do think that considering all of your symptoms,just to know for sure,seeing a neph would really be in your best interest right now espescially since your current doc appears "stumped'.at least you would know one way or the other,you know?some kidney diseases are very treatable,and some are not.my polycystic kidney disease is not treatable.i also have those cystic globs in my liver too only not as bad.
considering the extra work your body systems are having to do,espescially the heart,because of the edema,you really do need to find out just what is wrong as soon as possible.have you had any radiologic testing done on your kidneys at all,even an ultrasound?considering any out of range creatinine,you realistically should have been sent for the US right away just to get a good look at whats going on with the kidneys.Labs only will tell part of the story.you need a full and complete eval done on your kidneys by someone who really knows kidneys.
like I mentioned before,despite the fact that both my kidneys really look like crap upon US,my labs are still within the norm ranges.you DO need to find out whats up.I hope its nothing serious and can be treated and gone.please keep me updated on what you find out.but please get to a neph for a full eval.FB
you see,the thing about labs is,i know for sure with the kidneys and the liver,is that you will not see any actual changes in your labs til the real damage gets to a certain point,then you will see changes in the creatinine and other labs will start to change as well.from what my neph told me,once my creatinine starts to go out of range,we will be doing a bit more treatment than we are doing now. just the fact that your creatinine was or is actually out of the normal range at all would signify that there IS indeed some sort of condition/disease process going on in the kidneys,that most definitely needs further evaluation by either a nephrologist or urologist.I am not too sure what the actual differences are between the two speacailties but they both would be of help to you.once my kidney disease was actually Dxed upon ultrasound,my primary sent me straight to the neph that I am seeing now.
so,what was the actual result of the 24 hour urine test?do you actually have any protien in your urine?i really do think that considering all of your symptoms,just to know for sure,seeing a neph would really be in your best interest right now espescially since your current doc appears "stumped'.at least you would know one way or the other,you know?some kidney diseases are very treatable,and some are not.my polycystic kidney disease is not treatable.i also have those cystic globs in my liver too only not as bad.
considering the extra work your body systems are having to do,espescially the heart,because of the edema,you really do need to find out just what is wrong as soon as possible.have you had any radiologic testing done on your kidneys at all,even an ultrasound?considering any out of range creatinine,you realistically should have been sent for the US right away just to get a good look at whats going on with the kidneys.Labs only will tell part of the story.you need a full and complete eval done on your kidneys by someone who really knows kidneys.
like I mentioned before,despite the fact that both my kidneys really look like crap upon US,my labs are still within the norm ranges.you DO need to find out whats up.I hope its nothing serious and can be treated and gone.please keep me updated on what you find out.but please get to a neph for a full eval.FB
6foot3
04-21-2006, 02:07 PM
Just to add that 2 years of abusing laxatives and the symptoms your describing i'd really be worried about Hypo-potassium levels..Measuring Potassium and Magnesium is hard to detect as these are intracellular (inside cells) and Calcium and Sodium outercellular so they can be read more acurately...Do some more research on Electrolytes and Laxatives and Cardiac Arrest (long term use) And low Potassium symptoms....
LALAFRESH
04-21-2006, 04:22 PM
Hi Rinny2!
I am very new to this site - but I saw your question and I had to reply!
I too have had severe edema - mine for about 2 years now. I was diagnosed with a "lupus like" condition about 5 years ago and have been on plaquenil. about 2 years ago I noticed significant weight gain and swelling of my arms hands and feet. I was put on lasix but it didn't help. None of my doctor's have any clue what is going on. I recently was diagnosed with Crohn's Disease. Usually with crohn's people lose weight - not gain. My doctor's realize that have have a significant amount of fluid in my body - but can not tell me how it got there or how to get rid of it.
Needless to say my health and self esteem have both plummeted significantly. Many people say - you are not fat - just swollen! but that doesn't help when I can't fit anything and my ankles are twice their normal size.
I really hope someone out there sees our messages and has some insight because I can not stand being so darn big and nothing seems to help.
I am very new to this site - but I saw your question and I had to reply!
I too have had severe edema - mine for about 2 years now. I was diagnosed with a "lupus like" condition about 5 years ago and have been on plaquenil. about 2 years ago I noticed significant weight gain and swelling of my arms hands and feet. I was put on lasix but it didn't help. None of my doctor's have any clue what is going on. I recently was diagnosed with Crohn's Disease. Usually with crohn's people lose weight - not gain. My doctor's realize that have have a significant amount of fluid in my body - but can not tell me how it got there or how to get rid of it.
Needless to say my health and self esteem have both plummeted significantly. Many people say - you are not fat - just swollen! but that doesn't help when I can't fit anything and my ankles are twice their normal size.
I really hope someone out there sees our messages and has some insight because I can not stand being so darn big and nothing seems to help.
rinny2
04-22-2006, 02:54 AM
i got my TSH checked and it was normal. My CBC was also normal. I have an appointment with a specialty clinic in Santa Barbara on May 2 where they apparently "keep" you there till they have a diagnosis (I'll believe it when i see it)...I'll keep you posted.
rinny2
05-13-2006, 04:08 PM
This is for LALAFRESH....
Please google "Idiopathic cyclic edema". There's a syndrome caused by low progesterone and sometimes excessive estrogen that can cause pretty severe edema in some women. It's relatively uncommon so not many doctors seem to know about it. I don't know if I have it... but I fit the signs exactly. I went to this specialty clinic in Santa Barbara, and they didn't even SUGGEST checking my hormonal balance. Have you had your progesterone checked? This paper I read said that reproductive disorders are on the rise because of all the PCBs, pesticides, plastics in our world act like ESTROGEN MIMICS ... they bind to the estrogen receptors in our body and mess with our hormonal balance...so it almost seems ridiculous in this day in age for a woman with lots of wierd chronic problems to go to a speciality clinic (or any doctor for that matter) and not have her hormones checked!!! How hard is that!? Sometimes, I feel like we live in the darned dark ages, you know?
It's a very complicated situation in the sense that food can play a role (carbs, proteins), stress can play a role as well and get you in this viscious cycle with your hormonal balance all out of whack...
But diuretics aren't the things to take apparently (ugh.). Captopril (an ace inhibitor) can be helpful, gingko biloba can improve leaky capillaries, and chaste tree berry has been shown to regulate hormonal balance (they've done good scientific studies to show this).
Also look into the site Diagnose-me. It's a 1000 question questionnaire, you pay anywhere from 25$-77$ to have either a computer or a doctor analyze these questions and then get "diagnosed". I filled out the questionnaire last night. It's an amazing questionnaire. They ask you questions like "do you have cracks on your heels?" "Are you always cold?" "Do you have bumps on the back of your arms?" I paid the 77$...what the heck, you know? And I'll get to speak to a real doctor. It's more of an alternative med site...but i've seen all the traditional med doctors and they blow me off.
I know you have some real concrete diseases...and I don't. But this site will take those into account as well.
But I definitely thought of you because on this site it mentioned that women are mostly diagnosed with lupus because they believe it's caused by low progesterone. Or partly....it's a hormonal thing anyway. AND this has nothing to do with you...but they mentioned that some people begin to have problems simply from drinking things from PLASTIC bottles!!!!!! How scary is this? And really, do you think we'll ever get real answers on that? Do you think they're going to do a study on that? Do you think the plastics lobby is going to let a study get done, get published, get publicized??? Think about it! EVERYTHING is bottled in plastic!
BUT on the positive side, this site mentions TONS of things to do to REGULATE your hormones, and it's all pretty much stuff you do yourself. The site is all about CONTROLLING your own health, and getting OUT of the cycle of "DEFICIENCY" diseases where you end up having to see doctors on a chronic basis...if you can't find the info...email me at REMOVED. and I'll snailmail you the paper, ok? :) :
Good luck, sweetie
-r
Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.
Please google "Idiopathic cyclic edema". There's a syndrome caused by low progesterone and sometimes excessive estrogen that can cause pretty severe edema in some women. It's relatively uncommon so not many doctors seem to know about it. I don't know if I have it... but I fit the signs exactly. I went to this specialty clinic in Santa Barbara, and they didn't even SUGGEST checking my hormonal balance. Have you had your progesterone checked? This paper I read said that reproductive disorders are on the rise because of all the PCBs, pesticides, plastics in our world act like ESTROGEN MIMICS ... they bind to the estrogen receptors in our body and mess with our hormonal balance...so it almost seems ridiculous in this day in age for a woman with lots of wierd chronic problems to go to a speciality clinic (or any doctor for that matter) and not have her hormones checked!!! How hard is that!? Sometimes, I feel like we live in the darned dark ages, you know?
It's a very complicated situation in the sense that food can play a role (carbs, proteins), stress can play a role as well and get you in this viscious cycle with your hormonal balance all out of whack...
But diuretics aren't the things to take apparently (ugh.). Captopril (an ace inhibitor) can be helpful, gingko biloba can improve leaky capillaries, and chaste tree berry has been shown to regulate hormonal balance (they've done good scientific studies to show this).
Also look into the site Diagnose-me. It's a 1000 question questionnaire, you pay anywhere from 25$-77$ to have either a computer or a doctor analyze these questions and then get "diagnosed". I filled out the questionnaire last night. It's an amazing questionnaire. They ask you questions like "do you have cracks on your heels?" "Are you always cold?" "Do you have bumps on the back of your arms?" I paid the 77$...what the heck, you know? And I'll get to speak to a real doctor. It's more of an alternative med site...but i've seen all the traditional med doctors and they blow me off.
I know you have some real concrete diseases...and I don't. But this site will take those into account as well.
But I definitely thought of you because on this site it mentioned that women are mostly diagnosed with lupus because they believe it's caused by low progesterone. Or partly....it's a hormonal thing anyway. AND this has nothing to do with you...but they mentioned that some people begin to have problems simply from drinking things from PLASTIC bottles!!!!!! How scary is this? And really, do you think we'll ever get real answers on that? Do you think they're going to do a study on that? Do you think the plastics lobby is going to let a study get done, get published, get publicized??? Think about it! EVERYTHING is bottled in plastic!
BUT on the positive side, this site mentions TONS of things to do to REGULATE your hormones, and it's all pretty much stuff you do yourself. The site is all about CONTROLLING your own health, and getting OUT of the cycle of "DEFICIENCY" diseases where you end up having to see doctors on a chronic basis...if you can't find the info...email me at REMOVED. and I'll snailmail you the paper, ok? :) :
Good luck, sweetie
-r
Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.
Mari526
05-13-2006, 05:05 PM
rinny,
Maybe 12 glasses of water a day is too much for you, how about lowering it to 8 glasses a day.
I just looked up wellbutrin and edema is a possible adverse reaction. Your doctor may want you to discontinue some of your meds because they may be adding to or causing the edema.
Maybe 12 glasses of water a day is too much for you, how about lowering it to 8 glasses a day.
I just looked up wellbutrin and edema is a possible adverse reaction. Your doctor may want you to discontinue some of your meds because they may be adding to or causing the edema.
rinny2
05-13-2006, 05:58 PM
did the wb discontinuation...no improvement. But thanks for looking that up. I was pretty happy when i thought it was the WB...but alas, nope. And NONE of the doctors would even believe it was my meds...so i had to d/c my meds on my own...self-experimentation. But i HAD to know if it was the WB...because at the time ... that made the MOST sense.
But NOW the idiopathic cyclic edema makes the most sense...but who knows???
And I've done all sorts of different water-drinking routines...no difference. And i went to the clinic in Santa Barbara...and EVERYTHING is normal...even my creatinine is back to normal...as i thought. My kidneys perfect, liver perfect, adrenal function perfect, no tumors in the abdomen (CT done), heart great (echocardiogram), THYROID test AGAIN!!! (normal)...so she totally blew me off. I practically begged her to send me somewhere where i could get help...but she just kept repeating "you're normal". Ok...20 lbs of water weight IS NOT normal. So, I let her off the hook and said "thanks for your help, good-bye".
But NOW the idiopathic cyclic edema makes the most sense...but who knows???
And I've done all sorts of different water-drinking routines...no difference. And i went to the clinic in Santa Barbara...and EVERYTHING is normal...even my creatinine is back to normal...as i thought. My kidneys perfect, liver perfect, adrenal function perfect, no tumors in the abdomen (CT done), heart great (echocardiogram), THYROID test AGAIN!!! (normal)...so she totally blew me off. I practically begged her to send me somewhere where i could get help...but she just kept repeating "you're normal". Ok...20 lbs of water weight IS NOT normal. So, I let her off the hook and said "thanks for your help, good-bye".
rinny2
05-21-2006, 04:07 AM
new crazy theory on my pitting edema...food allergy....possibly dairy...so far ...cross my fingers???? maybe this is it....
But if you look up edema...you'll find allergies as a cause.
If you look up food allergies under traditional medicine sites...you'll NOT find edema...go figure.
IF you look on more naturopathic sites...you will find a whole host of symptoms associated with food allergies.
I spoke with a friend the other day...she had "chronic fatigue signs" for a year and a half before someone finally allergy tested her...she was allergic to her cat. she found a new home for her cat...and within a week, she was almost her normal self. That was 6 years ago...
So, allergies don't have to be "typical allergic reactions"....you never know....so everyone out there with edema? or other wierd signs? Maybe get yourself allergy tested by a good allergist, reputable....but also someone who is open-minded....
I know i am...Monday morning, I'm making that call.
But if you look up edema...you'll find allergies as a cause.
If you look up food allergies under traditional medicine sites...you'll NOT find edema...go figure.
IF you look on more naturopathic sites...you will find a whole host of symptoms associated with food allergies.
I spoke with a friend the other day...she had "chronic fatigue signs" for a year and a half before someone finally allergy tested her...she was allergic to her cat. she found a new home for her cat...and within a week, she was almost her normal self. That was 6 years ago...
So, allergies don't have to be "typical allergic reactions"....you never know....so everyone out there with edema? or other wierd signs? Maybe get yourself allergy tested by a good allergist, reputable....but also someone who is open-minded....
I know i am...Monday morning, I'm making that call.
LALAFRESH
05-24-2006, 03:15 PM
Hey there-
Thanks so much for your posts. I haven't been on in a while since i just haven't felt good. Anyway, turns out that it is not LUPUS but it is Fibromyalgia with Chronic Fatigue. I also have pretty severe Chrohn's Disease. This is all so nuts. With Chron's most people lose weight - not gain! But I am definitely going to look this up.
Also, just knowin I have great support from people like you makes me feel good. Again I appreciate your words and support. I will keep yopu posted.
LALA
Thanks so much for your posts. I haven't been on in a while since i just haven't felt good. Anyway, turns out that it is not LUPUS but it is Fibromyalgia with Chronic Fatigue. I also have pretty severe Chrohn's Disease. This is all so nuts. With Chron's most people lose weight - not gain! But I am definitely going to look this up.
Also, just knowin I have great support from people like you makes me feel good. Again I appreciate your words and support. I will keep yopu posted.
LALA
greenjewel
05-24-2006, 10:09 PM
You are hypothyroid.
TSH tests do NOT measure thyroid hormone levels, they measure pituitary hormone. They are useless for diagnosing hypothyroidism. You NEED Free T3 and Free T4 tests to diagnose thyroid problems.
Get Broda Barnes' book Hypothyroidism: The Unsuspected Illness and educate yourself on proper natural hormone treatment protocol.
Google 'Armour Thyroid',,, you will find answers.
TSH tests do NOT measure thyroid hormone levels, they measure pituitary hormone. They are useless for diagnosing hypothyroidism. You NEED Free T3 and Free T4 tests to diagnose thyroid problems.
Get Broda Barnes' book Hypothyroidism: The Unsuspected Illness and educate yourself on proper natural hormone treatment protocol.
Google 'Armour Thyroid',,, you will find answers.
LALAFRESH
05-25-2006, 12:32 PM
Green jewel,
Not sure if your post was directed to me or rinny - but I actually have been tested for both T3 and T4 as well as other thyroid specific tests.
All have come back negative.
rinny - I looked at the website and it is great! Thanks again.
LALA
Not sure if your post was directed to me or rinny - but I actually have been tested for both T3 and T4 as well as other thyroid specific tests.
All have come back negative.
rinny - I looked at the website and it is great! Thanks again.
LALA
moderator2
05-25-2006, 11:43 PM
Please read and follow the posting rules.