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My daughter has been seeing various doctors for about 3 month now, with no answers as to what is making her ill.  What might cause extreme fatigue (sleeping 14-15 hours a day)?  Anemia thyroid, anxiety/depression, and mono have all been ruled out through blood testing and evaluation, and we don't believe she has been exposed to lyme. 

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OK, so I haven't mentioned this because I thought these were separate problems because they appeared 3 months apart, but she just saw a GI specialist today because she has also been experiencing weight loss and abdominal pain on eating or drinking (no constipation, bloating, or diarrhea, just pain in the stomach area).  I know nothing about celiac.  Are fatigue and hair loss also a symptom of celiac?  The GI doc took blood and a stool sample today, and mentioned he was testing for celiac and Crohn's, along with a liver/gall bladder ultrasound.  We don't have those results yet.

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24 minutes ago, Reefgazer said:

OK, so I haven't mentioned this because I thought these were separate problems because they appeared 3 months apart, but she just saw a GI specialist today because she has also been experiencing weight loss and abdominal pain on eating or drinking (no constipation, bloating, or diarrhea, just pain in the stomach area).  I know nothing about celiac.  Are fatigue and hair loss also a symptom of celiac?  The GI doc took blood and a stool sample today, and mentioned he was testing for celiac and Crohn's, along with a liver/gall bladder ultrasound.  We don't have those results yet.

Celiac is an autoimmune disease. If she has it, then her body is attacking her intestines. But it can also attack orher parts of the body. I am glad that she saw the doc and is getting tested. 

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Personally I would follow up on the Lyme, even if I did not think she had been exposed. I have been down that particular nightmarish road and we could have cut through a lot of misery by doing a Lyme bloodtest early on. I learned my lesson with my younger kids and don’t mess around with this any longer. 

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Being a teenage girl? Like, seriously, I slept SO much for about a year around that age. I know LOTS of my friends did too. Like, get up, go to school, come home, take a nap for a few hours, get up and eat dinner, do a bit of homework and go right back to bed. Growth spurt I guess, although I'm so short it was probably hard to tell, lol. But most teens I think go through a half year about of sleeping a TON. 

If she's not awake and normal even after all that sleep I'd want a sleep study, she could have sleep apnea or something effecting her ability to get restful sleep. 

Other thought would be depression, but if she's happy otherwise and does well when she does sleep, I would think normal. 

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I'd follow up on the GI stuff, that sounds like by far the best bet and very much like they could be connected.  Issues with digestion plus autoimmune response could very likely cause someone to sleep a lot.

It is fairly easy to get a Lyme disease bloodiest, so if you are drawing blood anyway you might as well.

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Also, keep in mind that it's called "practicing medicine" for a reason. Doctors do have extensive training BUT they do not know everything. Do not depend on the doctors to "get it right." Some do, some don't. Think of your doctor as part of a team effort, not the all-knowing expert. Do your own research, as well. 

When I read your intro sentence, I was of the same mind as a previous poster, because I thought, "She's a teen." When I was 15, I would sleep for a solid straight 12 hours minimum when I could. My oldest sister called me the 12 hour wonder!. ? Is your daughter sleeping straight through those 14 - 15 hours or is it accumulative? These symptoms could be indicative of SO many things. I'm truly glad she's getting blood tests, etc. I also agree with testing for Lyme and Celiac. and Vitamin D. Be prepared for LOTS of research before you actually figure it out. 

Mainly, don't give up hope! And tell your dd to not give up hope as well. Just don't tell her to "Be strong!" You probably won't but I guarantee someone will and that is the least helpful thing to say to someone when they truly need help!

Give your daughter a hug from all of us and let her know we're sending all our prayers and positive thoughts her way. She has a TRIBE on her side!

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When my sister first became ill, she slept non-stop, hair loss, stomach issues.  It took years to get a diagnosis of lupus.  I agree that it is like solving a puzzle, and that it takes time.  Prayers and hugs to you and dd as you navigate through this.  

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2 hours ago, Ktgrok said:

Oh, and have they checked vitamin D and B12 levels?

I'm not sure about those.  The GP tested for several things, but I don't know if they was on the list.  If the celiac and Crohn's tests come up negative, I am going back to the GP and pushing for an endocrine specialist, along with the Lyme test, the 2 tests you mentioned, and a more extensive thyroid eval. I'll wait a week to see the results of these GI tests, though.

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2 hours ago, scrapbookbuzz said:

Also, keep in mind that it's called "practicing medicine" for a reason. Doctors do have extensive training BUT they do not know everything. Do not depend on the doctors to "get it right." Some do, some don't. Think of your doctor as part of a team effort, not the all-knowing expert. Do your own research, as well. 

When I read your intro sentence, I was of the same mind as a previous poster, because I thought, "She's a teen." When I was 15, I would sleep for a solid straight 12 hours minimum when I could. My oldest sister called me the 12 hour wonder!. ? Is your daughter sleeping straight through those 14 - 15 hours or is it accumulative? These symptoms could be indicative of SO many things. I'm truly glad she's getting blood tests, etc. I also agree with testing for Lyme and Celiac. and Vitamin D. Be prepared for LOTS of research before you actually figure it out. 

Mainly, don't give up hope! And tell your dd to not give up hope as well. Just don't tell her to "Be strong!" You probably won't but I guarantee someone will and that is the least helpful thing to say to someone when they truly need help!

Give your daughter a hug from all of us and let her know we're sending all our prayers and positive thoughts her way. She has a TRIBE on her side!

She'll sleep those 14-15 hours straight, and it's non-restorative sleep, so she'll stay up for an afternoon after that, and then sack out again for whatever time she can.  She's also lost about 30 pounds in 6 months, without effort; she eats only 1 "meal" (not a good solid meal) a day because of appetite loss and GI pain).

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27 minutes ago, City Mouse said:

My DS has Klein Levin Sydrome which causes periods of hypersomnia with all other medical cuses ruled out.

 

have you consulted a sleep specialist?

Not yet.  I'll wait to get these GI results, and then if they are negative, make another appointment with her doc for more follow-up.  But I should have these results within the week, so not too long a wait.

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48 minutes ago, readinmom said:

When my sister first became ill, she slept non-stop, hair loss, stomach issues.  It took years to get a diagnosis of lupus.  I agree that it is like solving a puzzle, and that it takes time.  Prayers and hugs to you and dd as you navigate through this.  

I just looked at the symptoms for lupus and she has 4 of 12 symptoms, but the 4 she does have are common to so many other things that I'll have to wait to get those other things ruled out.  She seems to have most of the symptoms associated with celiac, so I'll wait for those results and if they are negative I'll dig a little deeper (should get those results in about a week).

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Consider POTS. Postural Orthostaic Tachycardia Syndrome.

DD19 has it and fatigue was her main symptom in high school.  When we went to the cardiologist he was asking her lots of questions about being dizzy and lightheaded and she answered  'not really', which the doctor took as a 'no'. After she started treatment and started feeling better, she realized that she was constantly dizzy and lightheaded, she just thought that it was normal and everyone felt that way.  To her 'dizzy' meant falling down dizzy, like when you spin in circles too long. OI! 

GI problems are very common with POTS. GI issues are often completely separate diagnosis but are co morbid with POTS. You will see GI issues listed as symptoms in clinical descriptions of POTS but not usually discussed in much detail.  If you read personal stories you will hear a lot about GI problems and in some cases gastroparesis and feeding tubes.   

A very basic way to test for POTS is to do what is called 'a poor mans tilt table test'. (doctors have clinical ways to do this test, this is just a quick at home way to see if POTS could be something to look into). 

A non-clinical at home version.... (not medical advice) Test in morning if possible.

Lay as flat as possible (flat on back and flat arms/ legs) for 10 minutes. Without rising, take heart rate and if possible blood pressure. This is the supine rate.  Then slowly stand and remain standing for 10 minutes.  Try very hard to not move while standing. Keep both feet on ground but if you need to use a chair or wall to keep from falling that is ok.  Arms allowed to move but try to keep legs strait and not crossed  Don't lock knees! Remain standing and take the heart rate immediately, at 3 minutes and again at 10 minutes. Do not sit down in between heart rate tests or lean/rest on an object unless you fear falling.  Subtract the supine rate from the standing rate. Everyone's heart rate should increase. People with POTS will have an increase of 40 bpm for an adolescent during the test (I think this is the guideline up till 19yo)  Or if their heart rate goes over 120 bpm that is a cause for concern and should warrant a discussion with the doctor. If the person can't remain standing or starts to faint, stop test! That is a good sign there is a problem regulating and should be discussed with doctor. 

The body should increase heart rate for a short burst of time to get the blood pumping when you stand up, and then your nervous system should regulate some body functions to allow the bpm to stabilize at a normal rate. An example of this is when a person stand up too fast. You get dizzy for a few seconds, then your nervous system regulates body functions, and you feel fine and continue on your way.  In POTS patients, this series of regulations isn't working right and their heart rate goes too high and stays high for too long (doing its job of trying to pump blood to the brain).  This creates fatigue, dizziness, brain fog and a bunch of other problems.  For a POTS patient, just sitting up in bed can make them feel dizzy and out of sorts. When the head is above the heart, the heart rate increases to get blood going to the brain.  Part of the fatigue is lack of blood flow to the brain and the heart is working so hard, it is like a marathon runner running.

You can use heart rate apps, manual finger to wrist test, or a blood pressure cuff to do this test.  Some apps are better than others and work on smart phones that have a sensor.

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1 hour ago, Reefgazer said:

She'll sleep those 14-15 hours straight, and it's non-restorative sleep, so she'll stay up for an afternoon after that, and then sack out again for whatever time she can.  She's also lost about 30 pounds in 6 months, without effort; she eats only 1 "meal" (not a good solid meal) a day because of appetite loss and GI pain).

Well, she could just be tired because she is malnourished, at this point. I'd definitely call up your doctor and ask for a copy of the test results he already ran. 

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20 hours ago, Tap said:

Consider POTS. Postural Orthostaic Tachycardia Syndrome.

DD19 has it and fatigue was her main symptom in high school.  When we went to the cardiologist he was asking her lots of questions about being dizzy and lightheaded and she answered  'not really', which the doctor took as a 'no'. After she started treatment and started feeling better, she realized that she was constantly dizzy and lightheaded, she just thought that it was normal and everyone felt that way.  To her 'dizzy' meant falling down dizzy, like when you spin in circles too long. OI! 

GI problems are very common with POTS. GI issues are often completely separate diagnosis but are co morbid with POTS. You will see GI issues listed as symptoms in clinical descriptions of POTS but not usually discussed in much detail.  If you read personal stories you will hear a lot about GI problems and in some cases gastroparesis and feeding tubes.   

A very basic way to test for POTS is to do what is called 'a poor mans tilt table test'. (doctors have clinical ways to do this test, this is just a quick at home way to see if POTS could be something to look into). 

A non-clinical at home version.... (not medical advice) Test in morning if possible.

Lay as flat as possible (flat on back and flat arms/ legs) for 10 minutes. Without rising, take heart rate and if possible blood pressure. This is the supine rate.  Then slowly stand and remain standing for 10 minutes.  Try very hard to not move while standing. Keep both feet on ground but if you need to use a chair or wall to keep from falling that is ok.  Arms allowed to move but try to keep legs strait and not crossed  Don't lock knees! Remain standing and take the heart rate immediately, at 3 minutes and again at 10 minutes. Do not sit down in between heart rate tests or lean/rest on an object unless you fear falling.  Subtract the supine rate from the standing rate. Everyone's heart rate should increase. People with POTS will have an increase of 40 bpm for an adolescent during the test (I think this is the guideline up till 19yo)  Or if their heart rate goes over 120 bpm that is a cause for concern and should warrant a discussion with the doctor. If the person can't remain standing or starts to faint, stop test! That is a good sign there is a problem regulating and should be discussed with doctor. 

The body should increase heart rate for a short burst of time to get the blood pumping when you stand up, and then your nervous system should regulate some body functions to allow the bpm to stabilize at a normal rate. An example of this is when a person stand up too fast. You get dizzy for a few seconds, then your nervous system regulates body functions, and you feel fine and continue on your way.  In POTS patients, this series of regulations isn't working right and their heart rate goes too high and stays high for too long (doing its job of trying to pump blood to the brain).  This creates fatigue, dizziness, brain fog and a bunch of other problems.  For a POTS patient, just sitting up in bed can make them feel dizzy and out of sorts. When the head is above the heart, the heart rate increases to get blood going to the brain.  Part of the fatigue is lack of blood flow to the brain and the heart is working so hard, it is like a marathon runner running.

You can use heart rate apps, manual finger to wrist test, or a blood pressure cuff to do this test.  Some apps are better than others and work on smart phones that have a sensor.

My first thought was POTS, too. I have POTS.

My dd had POTS symptoms during high school. I never got her tested because I didn't realize it until late into the issues and other things were going on. 

Anyway, she had all the symptoms you describe and all the tests recommended here, including abdominal U/S, endoscopy, sleep study, and bloodwork up the gazoo.

When she was about 19, I took her in for allergy testing after my other kids started having issues and tested positive for some common allergens. She had testing years before, but we went through it again. This time she tested positive to wheat, milk, and eggs, in addition to other things. In the years since then she gradually changed her diet and she is really a different person now.

She could tell immediately that she had issues with eggs, but it took longer for her to realize that dairy was the cause of most of her GI issues because the reaction was delayed. 

Now that she is grown up and working and living on her own, she can buy and prepare her own food, it's been easier for her to control her diet. When she stayed at home between college and working, I could see the ups and downs when she "cheated."

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On 5/31/2018 at 12:03 AM, Reefgazer said:

  Are fatigue and hair loss also a symptom of celiac?   

 

 

Fatigue for sure. Hair loss, not directly, but it can be caused by vitamin deficiencies and/or malnutrition, which can be caused by celiac. 

22 hours ago, Reefgazer said:

I'm not sure about those.  The GP tested for several things, but I don't know if they was on the list.   

1

 

They almost certainly were, they are very standard things to test for in a blood test. 

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