Discussions By Condition: I cannot get a diagnosis.

Severely Underweight

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: DeeZee
  • December 9, 2007
  • 10:06 PM

I am 25 years old, 6 ft. even, and I weigh an incredibly low 125 lbs....

I've pursued my weight problem a few times (I've always been very skinny) and it never led me anywhere. When I was 22 I underwent all these tests for Marfan's Syndrome, since I have a heart murmur, but that was ruled out. They said that though phenotypically I fit the bill of a Marfan's patient, I (thank God) do not actually have the disease. Around the same time I went to a gastrointerologist who ruled out Crohn's disease and Ciliac, saying nothing abnormal showed up in the colonoscopy.

Then, about a year and a half ago, I read some stuff about hyperthyroidism and I really thought I might have that as I fit a bunch of those symptoms as well. That was ruled out very quickly in a pretty thorough blood test. However, the test did turn up a very low cholesterol level, which is no surprise considering how underweight I am.

Aside from being extremely underweight, I also have fairly frequent bowel movements (I can go months with 2-3 a day, but have gone through periods where I'll have 3-5 a day).

I also started exercising a little over a year ago, run and lift weights twice a week. I have not gained any weight and only noticed a very slight change in muscle definition. In fact, one disconcerting thing about exercising is that I know most people gain energy from working out, but I'm more tired on the days I exercise than the days I don't. Overall, I'd say I have a pretty low energy level, am often tired, and don't get the boost I should from
exercising.

These failed pursuits to find out what is causing me to be so underweight are extremely frustrating. At one point I even had a nutritionist suggest to me that I should just eat more and even smoke weed to increase my appetite (that was in San Francisco, no surprise). However, I eat what I can eat, and I think I eat pretty healthy, making sure that I get a steady intake of protein and fat by consuming eggs, fatty yogurts, stuff like that. As of a few years ago, I stopped eating beef and don't eat as much meat as I used to, though I still eat poultry a few times a week. However, my being underweight greatly predates this change in my diet and I actually feel better since I cut beef out, so I am pretty sure that has no bearing on my weight.

So at this point I am willing to take another go at it and meet with more doctors and be more insistent that there is actually something wrong with my body, but I don't want to run into more dead-ends that consist of doctors telling me what I do NOT have. I am the skinniest person I know and the few people who I have revealed my weight to are in disbelief when I tell them. I'm not looking to turn into Schwarzenegger either; I just want to be at a healthy weight. Am I wrong for thinking that this problem goes deeper than just not eating enough? Any suggestions would be much appreciated. I am currently doing a little online research into malabsorption, but past experiences have taught me not to diagnose myself online.

Thank you for reading.

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13 Replies:

  • You seem to be pooping a lot. Have you had your stool checked for parasites? If your stool is clay-colored or yellow, check into that malabsorption stuff.
    rad-skw 1605 Replies
    • December 11, 2007
    • 01:09 PM
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  • Thanks for the advice. I did get checked for parasites when I was much younger and my parents first started noticing the frequency of my bowel movements. I also imagine that was something my colonoscopy would have turned up, but so far no parasites have ever been found. I do, however, notice yellow in my stool fairly often, but not with consistency. I did not realize this could be a sign of malabsorption.
    DeeZee 1 Replies
    • December 11, 2007
    • 02:58 PM
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  • Hi there, I am a 23 year old 5'5 female and I weigh anywhere from 95 to 100 lbs. I understand how aggrivating this can be ! I just recently had a colonoscopy and a upper endoscopy and a x ray of my small bowel and nothing showed up... I am so sorry you are going through this and beleive me I know what your going through... Its very hard when you know something is wrong with you but cant get the doctors on board... Good luck !!!
    Brooklea 15 Replies
    • December 11, 2007
    • 09:55 PM
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  • It makes sense to me why you are looking up malabsorption. If you are having frequent bowel movements maybe the food is going too fast thru your GI system to effectively be absorbing nutrients. Best of luck!
    lsoroosh 51 Replies
    • December 12, 2007
    • 06:48 AM
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  • Congenital short bowel syndrome?End result being malabsorption.
    TerryG 120 Replies
    • December 12, 2007
    • 00:05 PM
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  • Thanks for the suggestions. I saw a new primary physician today and he did some on-the-spot checkups and said the only thing he noticed out of wack on me during the examination was an abnormally loud heart murmur for someone my age. He also said that if I hadn't told him that I had gone thru examinations for Marfans and had it ruled out, that would have been his first guess, due to my long fingers, toes, and overall boniness.Is it possible that something heart-related could cause malabsorption or lead to me being underweight in any way? I'm going to see a cardiologist next week for an echocardiogram, so hopefully that will lead me somewhere even though I've been down this road before and found nothing.
    Anonymous 42789 Replies
    • December 12, 2007
    • 06:43 PM
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  • From what I'm reading, Marfan's is not easily diagnosed in the lab, even with molecular testing. Don't depend on lab test results, they might have been false-negative. Which tests did you have done? The cardiologists see plenty of Marfan borderline patients.
    rad-skw 1605 Replies
    • December 13, 2007
    • 00:06 PM
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  • Hi, Are you still losing weight? If you are then you should definitely get yourself checked for something that is wearing your system down. I don't know what it might be but if you have yourself screened for celiacs disease or other malabsorptive conditions then you should look into cavitations maybe... In my case, I was also severly underwight but put it back on after I got my cavitations sorted out. Do some research on them. Most dentitst deny their existence but I can tell you from experience that they definitely are something to look into.If you look into this then you might also want to tackle the possibility of LGS ( Leaky gut Syndrome) And get a good naturopathic practitioner to treat you for this. Best of regards And if you need any clarification on these issues then just let me know.
    Anonymous 42789 Replies
    • December 13, 2007
    • 02:50 PM
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  • Yeah, I'm hoping it wasn't false-negative when I went through those tests. I do realize there is no sort of definitive test to rule out Marfans, but what they were basing the negative diagnosis on was the fact that (at least at the time) I had a heart murmur, but NOT a swollen or abnormal aorta, and hopefully still do not. Also, neither of my parents has Marfans, which reduces the odds greatly (something like 75% of Marfans patients have one parent with the disease). I also have no vision problems, and in fact last time I checked have 20/20 vision.However, like I said I do phenotypically share some traits in that I have long fingers, toes, and a protruding breastbone. So yeah, I'm confused. Also, would Marfans be a cause for frequent bowel movements or is it possible that those issues are independent of each other?
    Anonymous 42789 Replies
    • December 13, 2007
    • 07:14 PM
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  • It's a cause fo lack of blood, get blood tranfusion.
    Anonymous 42789 Replies
    • December 13, 2007
    • 09:19 PM
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  • I don't think they routinely take a stool sample when you have a colonoscopy...as there is not much stool left in the colon and would be contaminated with the prep. So why not have stool tests for ova and parasites, and the labs for malabsorption problems done. Also a CBC to see if you have anemia.
    rad-skw 1605 Replies
    • December 14, 2007
    • 10:21 AM
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  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • "Marfanoid" or "Marfanlike" describes an individual that shows some of the features associated with the condition.http://www.cshs.org/6205.htmlThis web site on Marfans, describes the heart murmur.How old were you when you first started have irregular bowel movements?Ask your parent if you had been on medication pryor to, on holiday?unexplained rashes, anything. Regards.
    TerryG 120 Replies
    • December 14, 2007
    • 11:48 AM
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  • to the person who suggested a stool sample, i actually did that too around the same period of time i was going through all these other tests, just forgot to mention it. nothing abnormal turned up in that lab either.i am a little concerned, based on these posts and further research, that i may have some condition of Marfans. i just hope that even if i do have the appearance of the disease i do not have the dangerous symptoms associated with my aorta. it's pretty awful to think about having to go once every year to check if a major artery around my heart hasn't swollen up to life-threatening size yet. especially having read that this could happen either gradually or suddenly in my 50s.the one thing still bugging me that i'm not sure anyone can tell me is, could there be a connection between having marfans or marfanlike syndrome and the issues with my frequent bowel movements and not feeling like i absorb nutrients properly?
    Anonymous 42789 Replies
    • December 14, 2007
    • 05:06 PM
    • 0
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