pitting edema for 3 months - General Health Message Board

rinny2 · 04-21-2006, 04:35 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...

feelbad · 04-21-2006, 06:46 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

6foot3 · 04-21-2006, 11:07 AM

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, 01:22 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.

rinny2 · 04-21-2006, 11:54 PM

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.