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Old 01-05-2012, 01:43 PM   #1
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Question Please Take A Stab At This!

Hey, thanks for reading! I've spent 2 years trying to figure out what's wrong with me and have spent soooo much money seeing numerous docs who aren't much help and think I'm crazy since I'm young and (with pounds of makeup) LOOK healthy... I can't keep spending money freely until someone decides to take me seriously, so please check out my list of symptoms and if you've got an idea of what could be wrong, let me know! Thank you very much!

First, my stats - 29 years old, 5'5", 125 lbs., appendectomy in a 3rd world country at 18.

Ailments that run in my family - Diabetes, the type that requires insulin daily. Skin cancer, bowel cancer, gallbladder disease.

Tests/treatments I've had - Several blood work panels, stool cultures, the famous 'oscopies' dealing with the digestive track, and....That's it. Docs won't test anything else because they think I'm dumb and my test results indicate I'm healthy as a horse! The only treatment I've tried is to curb my relentless diarrhea, lomotil and cholestyramine are not very effective unfortunately.

Symptoms
Since I was a kid
- Constant, extremely chapped lips, despite plenty of fluids. Constant icy cold hands and feet. Uncomfortable, burning, acidic stomach when hungry. These symptoms continue to this day.
Past 15 years - Extreme fatigue; In high school I was in bed by 9 each night and took naps every free afternoon I had. I'm still tired. Also diagnosed with sport induced asthma, used an inhaler in high school, haven't had any asthma symptoms investigated since, though they do still definitely exist when I exert myself.
Past 10 years - a LOT of hair shedding and breakage; my hair doesn't even look like human hair, it's so dry and wiry and thin. Skin in groin area and very top of thighs is brown; the rest of my body is alien-white.
Past 5 years - Fatigue even worse than before; I can sleep entire weekends away, only waking to eat and use the restroom and I'm still tired! Always feel weak, as if getting up from a chair is a huge chore for my body.
Past 2 years - Chronic, persistent diarrhea; This is a constant struggle EVERY day of my life now. Every time I eat, my stomach immediately begins to churn and grumble and make LOUD noises that other people find amusing. The diarrhea ranges from very soft brown stool, to pure yellow water that gushes out after two bites of food. I treat this symptom daily with Imodium (Gastro doc said it's okay) and my stools are still very soft and urgent and my stomach is always upset by food. Stools also morphed from my normal darker brown to light brown, to orangey-light brown to yellowish-light brown. Have kept a food diary for 6 months one time, 3 months another time, and though very detailed, no patterns can be determined in what I eat and the results.

I experience hot flashes while sleeping at night where I wake up sweating. Often times people who bump into me tell me I'm really hot (Not looks-wise, unfortunately) and I often will have random flushes where my face and chest become bright red and I get very hot and a bit sweaty. Nothing triggers this - it happens when I'm sitting at my desk at work or when I'm watching my favorite show on t.v.

My last symptom that developed 2 years ago one day and hasn't changed, is that I have 5 or so black spots in the vision of my right eye. They are permanent and do not 'float', as they are stationary and always in the middle and peripheral of my vision. Oh, and I've developed some heavy duty acne on the sides of my face. Lovely!

It's extremely rare that I experience any pain, bloating, or gas. The only pain I can recall is a molten, burning stomach when it's empty, and a strange pain behind the bottom of my left rib cage that comes and go randomly. I have not lost weight despite the diarrhea since my appetite is ravenous and I constantly eat, often times more than my 6 foot husband. I have gained about 5 lbs as a result of the excessive eating and lack of physical exertion.

If anyone has any ideas about what area I should delve into, please share! I feel as if I've aged so much since I turned 27, turning into a 90 year old overnight. Thyroid, maybe? Diabetes? Cortisol? Gallbladder disease?

I've blown so much time and money trying to get a diagnosis but everyone seems clueless or dismissive.

Last edited by Correctusage; 01-05-2012 at 02:05 PM. Reason: Grammar, needed to add information

 
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Old 01-05-2012, 02:30 PM   #2
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Re: Please Take A Stab At This!

I'm thinking thyroid.....a lot of your symptoms sound thyroid related, more specifically hypo-thyroid (an underactive thyroid)

 
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Old 02-08-2012, 08:43 AM   #3
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Re: Please Take A Stab At This!

rosequartz - Thanks for responding. I will be demanding thyroid/hormone level testing as soon as I find a new doctor.

 
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Old 02-08-2012, 09:42 AM   #4
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Re: Please Take A Stab At This!

good for you, and in the meantime, maybe mosey over to the thyroid board and see if anything sounds familiar!

 
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Old 02-09-2012, 03:21 AM   #5
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Re: Please Take A Stab At This!

some other tests I would suggest you ask your doctor for are vitamin d, calcium and electrolytes since you've had chronic diarrhea for a long time. The interesting thing about vitamin d is that low levels can cause diarrhea, but also diarrhea can cause problems with your vitamin d and calcium so it's a viscious cycle. If you were low on vitamin d it would also explain your fatigue and tiredness, skin and hair problems. It may not even be the reason for your stomach problems but it could be making your stomach worse and causing some of your other symptoms due to nutritional deficiencies so it's worth checking and your electrolytes are probably way out of wack from the diarrhea as well.

 
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Old 02-09-2012, 08:41 AM   #6
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Re: Please Take A Stab At This!

I hope you have had the blood work done.

It sure sounds like hypothyroidism.

~Belle~

 
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Old 02-09-2012, 04:58 PM   #7
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Re: Please Take A Stab At This!

Sounds like thyroid, the thinning hair, tiredness and diarrhea. Are you over or underweight? Could be hyperthyroidism with the loose bowels. Do you wake up refreshed or still tired? sleep apnea??? Get it checked out. Maybe leave the make up off and take a list of your symptoms with you, plus any tests.

 
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Old 02-09-2012, 05:02 PM   #8
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Re: Please Take A Stab At This!

You aren't going through early menopause are you?

 
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Old 03-01-2012, 10:29 AM   #9
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Re: Please Take A Stab At This!

I'm not a doctor, but I did suffer from chronic diarrhea for decades, it may not be what you eat but rather what you drink, I'm allegeric to most municipal water supplies, cant drink tap water, sodas at a restaurant, pepsi products, but I find I can drink most filtered waters (under the sink and refrigerator), certain sodas (coke, dsani), brewed coffee, brewed ice tea (as long as the ice doesn't melt), just my experience, let me know if this is helpful.

 
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Old 03-19-2012, 11:50 AM   #10
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Re: Please Take A Stab At This!

Wow, I feel so bad for not responding to all the helpful posts others have submitted on this thread - I haven't been getting emails notifying me of updates, so guess I should check back more often!

Thanks to all for your input!

An update - I visited a new doctor a couple days ago, one who specializes in internal medicine. She was equally perplexed by my symptoms as all my other docs have been. However, she is the first to suggest it could be celiac disease, gallbladder issues, or thyroid problems. So they took a bunch of my blood to test for all of that jazz and I'll be scheduled for some imaging diagnostics soon.

I think I developed a new symptom that I've never had before - about two weeks ago, a good sized pale blister formed inside my cheek. I hadn't bit it, and I'm not exactly sure when it showed up, I simply noticed the pain one day while eating and took a look. After a couple days of H2O2 swishing, it was gone. That was weird!

Coping with these bothersome symptoms is becoming difficult, mood-wise. I'm often cranky and have no libido, which my new hubby doesn't understand. I don't want to constantly complain about feeling ill all the time, so I guess other people assume I'm doing better. Then if I mention a symptom again, it seems as though family and friends get upset at me, as if they blame me, like I'm causing this on purpose. Very interesting!

Not wearing makeup to my next appointment is a great tip. I think I am so good at pretending to be healthy that doctors don't understand the serious-ness of the situation.

I've been exercising regularly lately and guess what - I gained weight! I was extremely disappointed and surprised by this at the doctors office, lol.

Greg0220 - The water suggestion is a good one. I hadn't given my water intake much thought since this ailment began when I lived in my old apartment, and has continued while living in my new home with a well the past year, and also while on vacations drinking bottled waters. Anything is possible.

Captjane - The next time I see my doctor, I will suggest the tests you mentioned. I don't know why it is that medical professionals don't suggest any of these tests themselves. Seriously, I have to request my tests specifically for them to be considered. If the internet weren't available, I'd still be sitting at home suffering with the old 'IBS tee hee!" diagnosis a guy made 2 years ago after hearing me say 'diarrhea' one time.

Thank you all for your help, I will update this thread as test results come in.

 
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Old 03-19-2012, 01:16 PM   #11
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Re: Please Take A Stab At This!

What type of fillings do you have in your teeth?

Has your doctor tested you for MS?

I hope your doctor finds something so you can be treated.

~Belle~

 
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Old 03-19-2012, 03:44 PM   #12
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Re: Please Take A Stab At This!

I hope you find a really good answer to your problem. Man, that sounds really really tough. I'll keep you in prayer.
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Old 03-29-2012, 12:51 PM   #13
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Re: Please Take A Stab At This!

Hey All! Just posting with a tiny update - My colonoscopy in October was clean as whistle, so no issues there. My most recent doctor ordered a ton of bloodwork for me, and I had an ultrasound today. All of the bloodwork came back negative/normal. I'm not anemic, I didn't have any celiac markers, etc.

During my ultrasound today, the tech asked me if my bladder was very full and said I must need to pee. I didn't. Not at all. She said that was a little strange because there was fluid sitting in my kidney. So that's great. One more thing to add to my long list of annoying symptoms.

Could that be all related to my chronic D and everything else? I have no clue.. Could just be an unrelated bladder or kidney infection. Yay.

Belle - I have never had a cavity or a filling. One good thing came of my genetic pool, whoo hoo!

 
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Old 03-29-2012, 01:30 PM   #14
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Re: Please Take A Stab At This!

I'm glad your tests are coming back negative

You've done a great job with your teeth the reason I asked is that some people have older fillings and they're having problems with mercury poison..


Take care and keep us posted.

~Belle~

 
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Old 04-03-2012, 10:13 AM   #15
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Smile Re: Please Take A Stab At This!

Hi, This does sound like thyroid. I was diagnosed with Hypothyroid over 20 yrs ago. I had these symptoms and still get the chills at times. My body temp. goes way down and the only way to get it up again is a very hot bath.

The tests that I get done on a regular basis are t3 and t4.

Good luck.

 
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Old 04-04-2012, 09:35 AM   #16
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Angry Re: Please Take A Stab At This!

Hey guys! I'm here posting the results of my ultrasound, which despite the tech acting worried about fluid built up in my kidney, were normal! Of course I asked the doctor's henchman about this, and she went through my papers and confirmed there was no notice of fluid. So why the ultrasound tech made a big deal over my kidney fluid build up, I will never know.

The doctors office is also surprised that my symptoms (Since turning 27 - diarrhea for almost 2.5 years every day, random hot flashes, insomnia, hair changes, fatigue, vision issues, (NO weight loss!), etc.) have not miraculously improved since I saw the doctor 3 weeks ago. Unbelievable! It actually makes me angry because it is obvious to me that I am seeing yet another doctor who believes my symptoms are fake or self induced. I am sooooo tired of this, but I keep going to the doctor because I know my family worries and we'd all like to know that my body is not slowly falling to pieces.

I don't know how much more poking and testing I can handle. I feel like I have to keep going from doctor to doctor, blowing so much time (YEARS) and money, just to get nowhere trying to find someone who thinks outside the box or will take me seriously. I guess I will simply end up living as a hermit for the rest of my life unless I can have a toilet installed on my rear end and it becomes socially acceptable to be that way lol!

They did take blood to test my thyroid levels and they said that came back normal, as well. Every thing is normal. I suppose normal is good, but I'm still suffering. I shudder to think how I will cope if I have another ailment come up, like a rattlesnake bite when I'm out walking my dogs or something. Maybe if I'm in an emergency setting crapping all over the office while they treat me they'll try something else? Doubtful, they'd probably just give me Lomotil to make the symptom stop.

Susie, Belle, everyone else who has supported me and provided input - I thank you very much!

 
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Old 04-05-2012, 07:42 AM   #17
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Re: Please Take A Stab At This!

OMG it sounds like you're going through hell at the moment, although your last post did make me giggle. I've often thought about what extremes I'd have to go to in order to get proper treatment!

I'm not a professional but your symptoms scream THYROID to me. Just because they say your results are 'normal' doesn't mean they are normal for you! If you can get a print out of your lab results please do so and then post them on here. There are some very experienced people on these boards who probably know more than your doc.

 
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Old 04-05-2012, 11:00 AM   #18
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Re: Please Take A Stab At This!

Bartonse - That is a good idea, I see my doctor in a month or so and I will ask for results of all my tests.

So here is another line of thought I've been playing with: I remember when I first started hanging out with my now-husband (as platonic friends) for about 6 months when we first met that he had digestive troubles (D/C issues every week or two weeks) more than anyone I've ever known. However, he considered it normal since he's always had the issues and claimed that he was more normal than I, who at that point had a digestion system of steel.

I never actually became ill with all my weird symptoms until after he and I became intimate.... I've often joked that he gave me my sickness, to tease him, but now I'm wondering if there's possibly some truth to that? I've noticed the past few months that his eyes look jaundiced and dull, and his stomach problems have become more frequent and upsetting to him lately. He was also not allowed to donate blood the last time he tried, about ten years ago and was never told why. So of course I'm curious now if there's some hepatitis or other virus at play, and I'm worried. He will not go to the doctor for himself, since he considers his issues normal and has had them since early childhood.

Other things I've considered are parasites of some sort, but that of course seems silly and doctors get annoyed if I suggest it.

I don't know if I've mentioned it before, but my stools have been light brown, light orange, and now mainly light yellow for the past couple years. The past month my urine has looked oily consistently. Sigh. Does this sound like a liver or pancreatic issue, possibly? Anyone?

I love input, so please shout out any idea that comes to mind and I will relish it.

 
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Old 07-03-2012, 12:09 PM   #19
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Re: Please Take A Stab At This!

It's been a while since I last posted. Since that time, I've had an upper endoscopy (results completely normal) and then today, an upper GI Xray with small bowel follow through.

I am sure everyone who has done the barium Xray shenanigans absolutely loved it, like I did.

The doctor and techs said it could take up to 6 hours for the white sludge to get through my small bowel. However, 30 minutes later, while the doctor was taking another 10 images and pressing on my intestines with a paddle, he said "Oh, you're going to need to go to the bathroom soon." I was so excited about this, since I'd only urgently gone number 2 twice that morning since waking 2 hours prior! So, after those final images, they let me 'leave' and I proceeded to spend the next hour in the hospital restroom sitting with numb legs on the public restroom toilet while the white sludge fell out of my bum. It took under an hour for the sludge to enter my mouth and come out the other end. I'm going for a record here.... That's why I keep stats.

And yes, a long line did form in the bathroom I was using, since I was taking up one of the two stalls the whole time, making it unusable to others.

The doctor said I looked completely normal, but that I had a very rapid transit time in my small bowel. No parasites, and no inflammatory disease, though. That's good.

I'm beginning to think more and more that this could be allergy related...? I noticed that when I was taking an antihistamine for a week a while back, that my tummy felt more settled. Maybe constipation is a side effect of the benadryl, though, so who knows.

As usual, I welcome anyone's input. 2.5 years of runny BMs several times a day is no longer a fad. It's out of style. No one does this voluntarily anymore. My intestines can't seem to take the hint that we're all over this already. Ho hum.

 
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Old 07-31-2012, 02:16 PM   #20
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Unhappy Re: Please Take A Stab At This!

Back for possibly the last time..

I had my follow up visit to my barium xray series and follow-through yesterday (after a horrible, hellish migraine yesterday morning ugh).

The doctor said they can detect no inflammation or disease but that the radiologist noted that I have extremely fast transit times, with the barium going through both small and large intestines in 30 minutes. I already knew that.

The doctor, to my dismay, told me they have diagnosed IBS D because this seems to be purely functional, despite having no pain, cramps, constipation, etc etc. Awesome. Lovely. On a positive note, he is eager to treat the symptoms so I can live a normal life, instead of a being a 30 year old recluse.

So he is making me try Cholestyramine. Again. My previous gastro already had me try this and it really was not effective for me. In fact, the last time I stopped using it because it was causing more gurgling and bowel movements than I wanted. I guess Imodium is simply more effective for me. The doctor does not want me using Imodium or Lomotil on a daily basis anymore, which is why we're trying the bile sequestrant again. So far, my bowel feels uncomfortable and full, like I need to go any moment, and I've already gone more today that I have in months past. This is after taking the first dose this morning. I really do not have faith in this treatment, as it seems to prompt a succession of bowel movements when I take it. I am taking it after breakfast, per doctors orders.

He is having me try it for two months, keeping a diary of the med dose and following movements. If this is not effective, we move up to Lotronex. Scary.

Anyone have experience with the Cholestyramine and have any idea why it may make things worse for me?

 
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