Discussions By Condition: I cannot get a diagnosis.

Nearly bedridden, 22 yr old, constant hunger, no answers

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • August 19, 2010
  • 10:25 PM

Hello, I'm a 22 year old female (about 5'7, 128 pounds) who has been dealing with an undiagnosed illness for almost two months now. It began when I came home from college and became easily shaky/out of breath/fatigued on exertion.. most notable when I did my weekly workout routine (just jogging and some light weights). I went to the doctor and she told me I was "subclinical hypothyroid" (based on thyroid blood work she took) and prescribed me armour thyroid medication 15 mgs. I waited to take the medication, in the meantime I was getting shakier and weaker over the course of a week. Finally one day at my boyfriend's house, I waited too long to eat a meal (normally I eat frequently every 3 hours or so), and I got an intense episode of tachychardia, shakyness, shortness of breath and weakness that continued to get worse over a few days. I began the armour medication (thinking my problem was related to the mild hypothyroidism) after three days of feeling like this and it simply worsened my symptoms. I discontinued the medication after one week of symptoms worsening. It got so bad I went to the emergency room where they didn't note anything too unusual other than: high blood sugar at 130, elevated white blood cell, slightly lowered red blood cell, and slightly low potassium. They simply told me to follow up with my primary care doctor.

My current symptoms include: weakness, shakyness, fast/pounding heart rate, inability to exert too much energy (I can walk around my bedroom a little, get up to the bathroom but other than that I am in bed for most of the day), constant insatiable hunger as in the need to eat something almost every two hours otherwise I get even more shaky, out of breath, and weak. Even when I do eat, I still feel extremely hungry. And I have been losing weight, regardless of how much I eat (17 pounds since this started, I used to be at my normal weight of 145 or so). I've also experienced numbness and tingling in my arms and legs that comes and goes. Finally, I have experienced episodes of lower back pain (seemed like kidney pain), which went away when my diet changed (I began eating a higher protein, low carb diet), because I noticed consuming breads, pasta, sugary fruits made me feel even more shaky.

My family suspected diabetes and took me to an endocrinologist. She took the Hb1AC test as well as my fasting blood glucose. The results were 5.5 and 82, respectively. She told me my results were perfectly normal and she had no further questions. She also checked my thyroid and adrenal function, and stated they were normal.

free t4: 1.36
t3: 122
tsh: 1.42
anti-tpo: <10
anti-tg: <20

baseline: 15.8
30 mins: 32.2
1 hour: 34.3

My family and I are lost as to what to do. And it's getting very impractical to feed me almost 5-6 meals per day. We bought a home blood glucose meter to check periodically as well, especially when I start to get very shaky or out of breath without food, and my blood sugar seems to always be in the 80's. Once I checked in the middle of the night, when my shakyness was really bad and it was 71.

Does anyone have any clue as to what could be wrong? What sort of specialists or doctors should I go see? Also, I wonder if my low carb diet could be skewing my blood test results (the only reason I eat this way is because it seemed breads/fruits made me more shaky)? On a side note: my mother was recently diagnosed for Chagas disease (which is a tropical parasitic illness), so I don't know if that's a possibility too.


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  • Also, I wonder if my low carb diet could be skewing my blood test results (the only reason I eat this way is because it seemed breads/fruits made me more shaky)? Maybe you have an issue with Insulin Resistance.. those with insulin resistance need to avoid breads and fruits ... and increase their meat (which helps balance things). Insulin resistance is a precurser to diabetes... and it can cause A HEAP of different symptoms. With Insulin resistance.. the insulin strongly spikes (much stronger then normal) to try to control a raising glucose level and balance things. Carbs are sugars (and fruits are high in sugars too) so the insulin will spike even more to try to control it. When this over spikes.. while trying to balance.. it can then swing the other way and possibly cause low blood sugar. Seems your system is struggling to control your sugars... hence currently insulin issue. i think you should have a 2 hr glucose tolerance test (GTT) done (which checks for insulin resisance)
    taniaaust1 2267 Replies
    • August 21, 2010
    • 04:02 PM
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  • Could it Type 1 diabetes or celiac disease? Most type 1 diabetics are diagnosed in childhood but your symptoms sound like type 1. Celiac is an inability to break down gluten, found in wheat. Look up celiac disease.
    Anonymous 42789 Replies
    • August 21, 2010
    • 05:17 PM
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  • I have almost the exact same problem. But when I eat it seems my heart because even more over exerted and races. Also walking up the stairs I become breatheless and need to lay down as soon as possible and sweat excessively. Given up on eating because itm akes me feel awful. But also was quite active and now I'm kind of just crawling about it seems. It feels so crippling. I hope that you figure out what you have. My mother has Celiac disease, so I am starting to wonder if this could possible be causing my symptoms as well? Or at least part of them.. maybe you should look into it too. My doctor also said, a thyroid problem or a celiac problem..Good luck to you..
    Dreamtemperature 2 Replies
    • August 22, 2010
    • 11:17 PM
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  • Thanks everyone for the replies. I am being tested tomorrow morning with the two hour GTT, so that will clarify whether or not I have diabetes. I'm also going to get a blood test for Chagas disease, just to rule that out since several of my family members have it. After that, I will look into celiacs as a possibility, especially at this point in my illness as I've developed painful bloating/intestinal discomfort (it seems although I'm so hungry and eating constantly it's getting to be too much work for my stomach now :/). It's getting to be tricky, since I get VERY shaky/out of breath/tachychardic if I don't eat frequently.. but now the stomach pain and bloating are making eating frequently more difficult..So we'll see what the results are this week with the GTT, and I'll ask about celiacs too when I see the doctor.If anyone has any other suggestions, please share. It'd be good to have a few more ideas to ask the doctor about at the end of the week.
    Anonymous 42789 Replies
    • August 23, 2010
    • 00:22 AM
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  • HiTo me the fact that your mother has been diagnosed with Chagas disease is interesting, especially if she has had this diseaase a long time. Even if you do not live in South America ( the disease and the bugs that transmit it are also found in California and Texas)you could still have contracted chagas disease from your mother possibly due to placental transfer. Chronic chagas can produce cardiomyopathy which may explain your tiredness. It also produces changes in the colon referred to as mega colon which affects how the food is dealth with. This usually produces severe constipation but who knows how it may affect you IF you have it.If it affects your eosophagus then you get aspiration and regurgitation.Chronic chagas may develop years after the primary infection.There is lots of info on Chagas disease on the net.
    chrismia 159 Replies
    • August 23, 2010
    • 01:41 PM
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