What's wrong?

General
1

There is something wrong with me but no doctor has been able to figure out what it is. My best guess is that it is another autoimmune, but I have no idea which one. I was hoping someone would have some idea what it is.

3 years ago, I got a stomach virus (similar to the one I got a few months before being diagnoses with diabetes) and since I have been ridiculously tired, so tired that I went to a sleep specialist. He said I have "delayed sleep cycle" and my internal clock is on "california time" aka I am about 3 hours off. Whatever, I just wanted to fix it. I was put on Provigil (a med that I recently found out was used to keep narcoleptics awake during the day). I was awake during the day and survived most of high school.

Junior year, another stomach virus. After a few miserable months, I realized that it was wheat. The gastroentrologist said I didn't have Celiac's. I stopped eating gluten just to save myself the sickness.

Senior year I was tired again, I could not concentrate, and I lost all motivation. My sugars went through the roof, which just made my problem worse. I was really frustrated because my grades tanked (didn't matter though, senior just didn't), almost didn't apply to colleges (I finished one application, the one for my dream school of Johns Hopkins. My mom sent in applications to 3 safety school because I couldn't do it. Luckily I got into Hopkins in mid-December, so the rest of the year didn't matter. I also had thick mucous in the back of my throat that made breathing through my mouth nearly impossible. 2 ear/nose/throat doctors did not know what it was. I went to psychiatrists as a final attempt. Once again, they didn't know and I was put on medication to keep me awake and somewhat increase my concentration.

College started and in the first year, my symptoms were somewhat under control. They randomly flared the ugly faces and made school difficult, but I survived freshman year.

Sophomore year, everything is horrible. I am tired all the time, I cannot concentrate long enough to study or take a test, and my memory is crap compared to what it used to be. I used to be able to read a chapter in a textbook once and then ace a test on it. I used to remember everyone's birthday, now it's an accomplishment to get the correct name with the face. I still can't breathe through my mouth. These symptoms sound exactly like hypothyroidism, but I went to 2 doctors to ensure that I was fully tested for it. According to the blood test, my levels are fine. One doctor put me on a low dose med for hypothyroidism, but that made me sick with hyper symptoms.

This is a long post, but to sum it up, I don't know what's wrong and I haven't found a doctor who has either. I need help. It has gotten to a point that if I am not better by the end of the year, I will have to drop out of school to bounce from Hopkins doctor to Hopkins doctor until I can go back. I really don't want to do that. Please, if you have any ideas, let me know.

2

Reading your post made me sad, and very empathic.

I know for me, College was a very tough time health wise. Freshmen year I developed a massive pain in my right side over where your appendix is, however the test results said nothing was wrong. The terrible pain reduced down to a dull ache that most of the time only hurts when someone presses on my abdomen. I have been in and out of hospitals these last couple of years when the pain got fearfully bad that I thought something MUST be wrong. In the end, I have no real diagnoses, and would REALLY like to not have this pain, instead of trying to forget that I have this pain.

Also, I'm sure you are monitoring very closely what you are eating, but I found that it was EXTREMELY hard to figure out what the college food services people were putting in the food I was eating. My numbers never made sense if I ate something more then salad.

I know that for me, stress in any form drove my numbers crazy as well - especially depression. Junior year, I had mono and didn't know it. My bloodsugar stayed pretty much at 300-400 for 3 months, and I was crying in frustration because I was doing everything I could to be healthy, but felt like a I had been run over by a truck.

I don't know what else to offer you but support. I know how much it sucks to have nothing make sense, and you feel so so sick. I'll be sending positive vibes your way.

3

My friend from Towson is going through similar symptoms although they believe she has Celiac's. The doctors thought that it was endometriosis for a while until she got a biopsy done. Has that been ruled out?

4

Carrie, I am an identical twin. Since childhood, my sis has been thought of as the "frail" one -- she catches every virus, suffers from allergies, and has horrible issues with fatigue. She had every test known to man, but they all came back normal. Finally, after 20 years of dealing with the fatigue issues, she finally read about adrenal gland disorders and asked her endocrinologist to test for adrenal disorder. He had tested her thyroid over and over again and it had always been normal, biut the endocrine specialist never thought to check adrenals.

This is done by testing cortisol levels. If they are low, obviously the adrenal gland is not producing enough cortisol. However, some poorly functioning adrenal glands can at times produce adequate levels of cortisol, so testing just the numbers can be misleading. You may want to ask for a cortisol stress test whereby you are injected with something that normally makea a person produce stress hormones (cortisol). If your gland is not working properly, the cortisol levels won't rise like they should after this stress hormone is injected. An even more accurate test of how much cortisol you are producing can be measured with a saliva cortisol test.

My twin was very low in cortisol. She was put on prednisone for a lengthy period of time. This helped at first, but in her case, her adrenal glands started producing cortisol after the prednisone allowed them to rest somewhat. So all of her body hormones ended up out of whack and her ptituitary then stopped producing some hormones because she was getting TOO MUCH cortisol. She was weaned off the prednisone and now takes various food supplements and avoids all caffiene and anything that would stress her body's adrenal glands. She is better, but will always have to be very careful. Her doctor says she needs a lot of sleep to let the adrenal glands rest each night.

When she was first diagnosed, I went to visit her, and I could tell when her cortisol levels were low, for her symptoms were pretty much what you describe: inability to concentrate and think, very much like what we display when glucose levels are too low. She would just sort of space out in the middle of a conversation. Her husband would ask her to test her glucose levels and they would be OK. The dietary supplements she takes now seem to help, but she will always need to be very careful. Caffiene or anything that causes her to spurt out cortisol is an absolute no-no, for she doesn't have reserves to spare and cannot use up what she makes with a false stimulation.

For more info on adrenal deficiency, which is sometimes called Addison's Disease if the adrenals have quit entirely, check out www.nadf.us/

One more thing... have you been tested for allergies? Celiac Disease is NOT the same thing as allergies. Some people test negative for Celiac but still do have wheat or other food allergies. It would not hurt to get a complete allergy testing to rule out allergies, for some allergies can completely exhaust the victim. My sister tested negative the first time she was tested for allergies, but then went to an allergy specialist who did allergy testing with full injections rather than the little patches, and she turned up positive for some allergies. Food allergies could cause the thick mucous in the mouth, and they can all be tested with an ELISA blood food allergy test.

Sometimes I think we need to help our doctors. They are trained to test for the most common problems first, and thyroid is the most common among type 1 patients. But apparently, adrenal disorders, even though rare, are more common for type 1 patients than for the typical patient. If any of the endocrine glands are not working properly, one shortage leads to another as other body systems try to help. Finding the root of the problem can be a difficult process. But testing for both adrenal gland function and for all allergies could at least rule out two possibilities for your fatigue. I wish you the best.

1 Like
5

I just heard about the Adrenal Glad on the Dr. Oz show on tv. Its a very important glad as the thyroid is as well. Maybe getting that checked will help. Carrie I hope you get better. Its sucks having problems doctors cant figure out. I hear you.

6

Wow Pat.. I'm reading your post and I'm going "Yeah, I was almost diagnosed with endometriosis too..." I've stopped eating wheat without a diagnoses (I will be tested for it 6 weeks from now on my next dr' appointment) and it has made a difference.

7

My son's endo suspected Adrenal Insufficiency (spelling?) a while back because his glucose readings were all over the place and  he also has Alopecia, which led her to think that antibodies might have attacked his adrenal glands as well. The first step was to have a couple of "8:00am cortisol tests", which is just bloodwork. They came back border-line low, so we had to take him for 2 more, but in the end his levels seemed fine and he didn't have to have the stimulation test which, as mentioned above, is the next step. Good Luck.

8

Carrie,
As someone who occasionally visits this site, I joined just so I can reply to your post.  Your symptoms sound exactly like Celiac Disease and you should make sure to be tested again.  They can test for Celiac Disease through a specific blood test and if you show certain antibodies, they will need to do an endoscopy to confirm the diagnosis.

My boyfriend has been type 1 since 2004 and was diagnosed with Celiac Disease in 2007.  His doctor thinks that based on his symptoms and the enamel on his teeth, he must have had Celiac Disease since before the age of 7.  He suffered for many years with strange symptoms that sound exactly like what you are going through.  He was constantly exhausted and would sleep all the time.  He felt like his head was in a fog and like you, could barely bring himself to read for a class or prepare for a test by his junior year of college.  He had an amazing memory but just could not concentrate.  He lost interest easily, he had stomach pains and strange body aches – he always felt sick without any explanation. For many years, his parents took him from doctor to doctor and no one could make a diagnosis.  Finally they sent him to a psychologist because his doctor at home thought it was all in his head. It wasn’t. Senior year of college he was diagnosed with type 1 and we thought that we finally had the answer as to what was wrong and he would feel better.  He continued to feel terrible though.  No matter what he did, he had poor control of his diabetes, his numbers were all over the place and he continued to feel out of it, irritable and sick.  Then in 2007, his new endocrinologist tested him for Celiac Disease.  It had been the silent culprit all along. Since becoming gluten free, he is like a new person.  He has control of his blood sugar and all of those terrible symptoms appear only when he is accidently "glutened."

Please get tested for Celiac Disease again.  It really sounds like you have it.  Celiac Disease isn't just an intolerance to wheat, but to gluten, which is a protein found in wheat, rye, barely and oats.  It is hidden in many foods, additives and sauces – even the wrong kind of food starch can make you sick. Having any amount of gluten will continue to aggravate your symptoms and prevent your body from healing.  Celiac Disease has been linked to many terrible diseases including type 1 diabetes, lupus, rheumatoid arthritis, lymphoma and leukemia and the only way to prevent them is to become gluten-free. 

I hope that you're able to find an answer. Please consider this very seriously. It is worth checking out.

9

Hi Carrie - been wanting to respond all weekend but I was out of town.  My wife has gone through similar issues for years.   To make her long story short, she used to get sick all the time and when she wasn't sick she had pain everytime she ate.  Various people diagnosed her with depression and she was on meds for that.  She slept all the time and her memory got worse and worse.  She described it as a fog.  Finally, someone diagnosed her with Candida.  That seemed to help somewhat when she switched her diet around and did acupuncture for the fatigue but as soon as she ate anything with sugar or wheat, she felt sick again - similar to Celiac's.   Pain all over her body was still there though.

Recently she was diagnosed with fibromyalgia which often goes undiagnosed for years.  At least we had a starting point now.  The doc we have gone to see has run a battery of tests.  This gets me to what Susan was talking about.   These test were saliva, stool, blood - everything you can think of.  They are tests done by Genova diagnostics.   What we found out was (and still getting more tests back as I write this) that her cortisol and melatonin levels were off, which as Susan mention can mask any sort of adrenal issues.   She had been to many integrative docs before saying she had adrenal fatigue too, so this was not a surprise.  She's now been on suppliments to help with those levels and we'll have to test the adrenal function after she's been on them for a while.  They even test all the other hormones which she was off on quite a few.  We are waiting for more intestinal results to come back so I will let you know what they say.   I will also get the names of all the tests so you can investigate it for yourself.   It just seems that when one system is off, another goes into overdrive so normal tests just don't tell the whole story.   We think we are finally getting to the bottom of the issues but we had to go to a doc that had experience in western and eastern medicine and was willing to do more than just blood tests.   I hope today is a good day for you.

10

My first thought was the thyroid - I see others have mentioned that also. Keep putting pressure on the docs or search for one until you find someone that will really listen. THey are out there.