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Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

Extreme weight loss?

I posted this question in the Neurology forum before seeing this Dysautonomia forum.  I was recently diagnosed with autonomic neuropathy based on my doctors "hunch" from my symptoms, not based on any official testing.  I actually didn't realize there was so much testing until I saw this forum yesterday.  

Was wondering, has anyone else experienced extreme weight loss (aka wasting syndrome or cachexia) with autonomic dysfunction?  Perhaps due to poor digestion/absorption?    I don't have any of the known disorders for wasting plus I eat plenty of densely nutritious foods, smoothies, etc.   If I don't eat a lot of food each day, I drop weight very fast, and after a year of trying, I can not gain any weight back.  I have always been very athletic and strong, and now I just feel frail and look anorexic.  

I've wondered if this wasting could be thyroid related too as I was having concerns there last year (slightly hypothyroid), but now my test results are all very underwhelming in that area (to use my doctors words).  

After reading many of these posts I realize  a) I'm relatively very fortunate  and b) I have lots more research to do.  Many thanks ...
6 Responses
875426 tn?1325532016
If they only tested TSH, you may want to get free T 3 and 4 as well to make sure you don't maybe have a toxic thyroid nodule.  Hyperthyroidism can cause weight loss, whereas hypothyroidism can put on the pounds.  Another thing you may want to get ruled out, if you haven't already is diabetes.  We have a friend that was losing weight without trying and it turned out he had diabetes.

I think some on the forum have trouble with being underweight and have to eat small frequent meals.  I used to be underweight when I was young (heredity), but an SSRi preventative for migraines caused a gain of 29 pounds, then I lost some pounds, then took a different SSRi later for a while and gained 35 pounds I believe it was.  Been off it for years and am down about 20 pounds from where that SSRi got me to.

I have IBS & really bad GERD, as well as I think some digestive issues due to bad jaws.  Have you tried the really caloric bagels and muffins and other things they advise out there to avoid due to high calories?  
Avatar universal
Thanks so much for your thoughts Surgi..    I've had the full thyroid panel run several times through the past year and it doesn't look to be a player.. and based on all the test results, I'm definitely not hyperthyroid.  Adrenal burnout can cause weight loss and difficulty gaining, so my little walnuts have been getting lots of TLC over the past year.

Thanks for mentioning diabetes too - that is something that hasn't crossed my radar at all.  I saw my doctor today and asked about it, and while he conceded the weight loss issue, he said I didn't fit the profile.  And from what I read about it, I don't seem to either?   I do eat a lot, but it is "forced" eating as I have no appetite, nor do I have the urination or thirst issues...  I will keep it in mind the next time I have tests run though.  

I've had to greatly expand my knowledge of healthy diet and nutrition over the past year, plus I worked with a few nutritionists, so I'm pretty sure the foods I'm eating are about as good as I can get.  I am gluten intolerant, so the mainstream "bread" category is out unfortunately.  Excellent idea though - and I recently found some tasty gluten-free english muffins so I'm eating those now (loaded with raw/organic almond butter!).  Lots of good fats, properly prepared grains, pastured/grass-fed dairy products and eggs, organic fruits and veggies, things like that.  Still, I guess there's only so much you can do when the digestive system goes on strike.  

I'm glad you are making some progress with your post-SSRi weight management too.  Gotta love the fine print side-effects eh?   I just saw a commercial on tv the other day for a new birth control device and the side-effect listing was sooooooo long!  Completely insane.  Hang in there and my best to you..  
1 Comments
Your symptoms sound exactly like mine! I also eat densely nutritious food, yet I'm down to 84 pounds and feel so frail. There is something going on with my nervous system and digestion. I suspect dysautonomia of some kind. Do you have breathing difficulty and panic attacks? I feel like any small amount of stress or overstimulation makes my symptoms so much worse. For years, I've been working on healing my adrenals. I felt great for a couple and then all of a sudden this dysautonomia thing hit me like a ton of bricks and I'm having a really tough time trying to live a normal life.
875426 tn?1325532016
Interesting you don't have the thirst urination thing going, as I believe a lot of us without diabetes have problems with that on here related to the dysautonomia thing.  Yeah, you'd be hungry a lot with diabetes, so that part doesn't sound right- you not having an appetite, to fit that part of the profile.  You might pick up some macadamia nuts- expensive, but delicious and caloric and an excellent source of omega fatty acids!
612876 tn?1355518095
Have you had a full panel of GI studies to rule out any number of gastrointestinal nasties that could be causing the problem?  Have they done a fecal analysis?  Are you showing any vitamin deficiencies in your blood testing that would be indicative of malabsorption?

The GI disorders that are associated with autonomic disorders (or at least all the ones I can think of off the top of my head right now) would be causing symptoms besides weight loss, such as constipation, abdominal pain, nausea, vomiting, etc.  Because of the diagnosis of autonomic neuropathy (hunch or not, considering you're having GI symptoms...), a gastric emptying study might be appropriate even though your symptoms sound atypical for gastroparesis.  It's something you could ask your doc about; it's a nuclear medicine test generally ordered by a GI specialist.  

You may want to cross-post in the gastroenterology forum as well:

http://www.medhelp.org/forums/Gastroenterology/show/68

Best,
-heiferly.
Avatar universal
Heiferly, you raise great questions/comments.  As far as I can tell, I am not horribly malnourished, which might be because I have tailored my diet and supplements to be as optimal as possible?   Test results show only a couple borderline deficiencies, nothing extreme.  And no, I haven't had parasite tests done yet, and I truly have no idea why not, other than my swiss-cheese for brains hasn't kept it on the radar.  I'll be at the docs again next week and I must remember to ask his preferred way to test for them.  I have done cleansing though, so they would be pretty stubborn ones if in there.

And you are right, I don't have the symptoms of gastroparesis at all.. other than the weight loss and no appetite.  And since it's been going on for a year now, I would think at least a few of those other symptoms would have presented by now.  At worst I thought my gut was dealing with "leaky gut" issues and so for months I have been addressing that through supplements and diet.  At any rate, from what I can gather, weight loss doesn't sound like it's strongly related to "autonomic neuropathy" since no one else here is familiar with the connection.  Hm..  back to the drawing board.

Thank you for the thoughts...
Avatar universal
I have dysautonomia and gastroparisis and severe weight loss. It is hard to eat drinking boost helps.
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