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Old 06-22-2012, 10:42 PM   #1
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endomystery HB User
7 Endocrinologists, No Diagnosis

Hello,

I was wondering if any of this sounds familiar to anyone. Three years ago I fell completely ill. Fever, passing out, severe hypoglycemia, low potassium, and extreme fatigue. I went to the doctor and my insulin was increased. They did further testing for an insulinoma with no avail. I remained ill and further testing showed an high insulin autoantibody titer and high aldosterone though low levels of renin.

Symptoms: Fever (always around 100 going up to 102-103) , rashes, hypoglycemia, electrolyte imbalance, constant infections, extreme fatigue, muscle cramping, joint pain, hair loss, mouth sores, fainting due to low blood pressure, nausea, malaise

Basic lab results: High insulin, high aldosterone, normal renin, high insulin autoantibody, low potassium, high cortisol, varied WBC's, high RBC and Hemoglobin, positive ANA

I am fairly underweight and only 25 years old. The fevers and low blood pressure cause the most trouble for my everyday activities. Wishing there was a real life House lol. Any help to point my doctors in the right direction would be a true blessing.

Thank you

 
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Old 11-03-2013, 05:19 PM   #2
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Re: 7 Endocrinologists, No Diagnosis

Quote:
Originally Posted by endomystery View Post
Hello,

I was wondering if any of this sounds familiar to anyone. Three years ago I fell completely ill. Fever, passing out, severe hypoglycemia, low potassium, and extreme fatigue. I went to the doctor and my insulin was increased. They did further testing for an insulinoma with no avail. I remained ill and further testing showed an high insulin autoantibody titer and high aldosterone though low levels of renin.

Symptoms: Fever (always around 100 going up to 102-103) , rashes, hypoglycemia, electrolyte imbalance, constant infections, extreme fatigue, muscle cramping, joint pain, hair loss, mouth sores, fainting due to low blood pressure, nausea, malaise

Basic lab results: High insulin, high aldosterone, normal renin, high insulin autoantibody, low potassium, high cortisol, varied WBC's, high RBC and Hemoglobin, positive ANA

I am fairly underweight and only 25 years old. The fevers and low blood pressure cause the most trouble for my everyday activities. Wishing there was a real life House lol. Any help to point my doctors in the right direction would be a true blessing.

Thank you
I'm no doctor but from my own experience I would think this was a rare disorder such as Glycogen Storage Disease or Addison's Disease. There are like 9 different Glycogen Storage Diseases but I would go to a Teaching Hospital like Brigham and Woman's Hospital were doctors are allowed to think outside the box or outside their algorithms.

Sorry, I hope you feel better.

 
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Old 11-03-2013, 07:37 PM   #3
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Re: 7 Endocrinologists, No Diagnosis

The thing that stands out to me is the number of symptoms you have that could be explained by lupus, plus you have a positive ANA. Have you been evaluated by a rheumatologist? The fever, hair loss, joint pains, oral ulcers, fatigue, rashes, constant infections all occur in lupus. Things like BP problems, hypoglycemia, low potassium can also occur. The low K+ may be causing the muscle cramps. I would research that possibility and treat the K+ deficit. Is your hypoglycemia reactive, not fasting?

 
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Old 03-29-2014, 04:57 AM   #4
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Re: 7 Endocrinologists, No Diagnosis

I have a very rare autoimmune disease and it took this doctor to diagnose me. It took me over a dozen doctors and a decade before I got diagnosed myself . He is the head of endocrinology of the university of Los Angeles , he does have a practice and sees patients from all over the world. Once you find out his name, google it and it will lead you to his web page.

Last edited by hurtinbad; 03-29-2014 at 04:59 AM.

 
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Old 03-29-2014, 10:20 AM   #5
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Re: 7 Endocrinologists, No Diagnosis

I am so glad you finally got answers! But what is the name of your autoimmune disease? That would be of interest to us all. Thanks for sharing the Dr's info, as finding great ones is always a challenge!

 
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Old 09-16-2014, 01:58 PM   #6
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Re: 7 Endocrinologists, No Diagnosis

I have Addison's disease and just found out after 8 years of testing I have an autoimmune disease called mixed connective tissue disease. The thing that I am thinking endomystery is that's sound like an autoimmune thing. The one I have has symptoms of, like, lupus but I don't have lupus, I think you should steer your doctors in the autoimmune testing. Have them check this out. That is when my dr finally after seeing 4 specialist and like I said, 8 years of bull. I just hope this is the final diagnoses for me! LOL

 
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