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Diabetes Insipidus anyone??
2 Replies
January - November 28

It's late and I'm tired, but would like to introduce a new topic. Diabetes insipidus has nothing to do with sugar, like diabetes mellitus. D.I. is an inability of the body to retain water - it causes constant thirst and excessive urination. You can have this in a mild form - if you sleep with water by your bed and drink and pee at night, you might have a mild form of D.I. But if it gets activated, you get very dehydrated, you can have a lot of symptoms (some sound like fibro symptoms - fatigue, brain fog, etc.) and it can be life threatening.

I underwent a lot of surgery over a decade ago, and afterwards thought I was going to pass out. The ER kept me for 10 hours with NO FLUIDS. They never hooked up an IV. Then they said I had anxiety and discharged me. I went home and slipped into a coma. I woke up, but I could have died.

My lab tests had a couple of indications that they should have picked up on. D.I. can throw your electrolyte balance off, and mine was OFF. D.I. can cause you to have high levels of calcium in your blood, low potassium or low sodium. I read that if your calcium level is over 10, you SHOULD be checked for D.I. Also, on urinalysis, the urine will be very dilute - that is indicated by a specific gravity of [1.005. My lab tests have repeatedly had some of these indicators, and I have repeatedly asked doctors about them - they have always said it was nothing. Today I found some information online indicating that D.I. may be some kind of auto-immune disease, and may be linked with celiac, thyroid problems and Sjogren's Syndrome.

There are a number of causes of D.I. - you can google it and learn about it. Two main causes are 1) a tumor affecting the pituitary gland and 2) a kidney problem, where the kidneys can't keep water in your body.

Diabetes insipidus is another so-called "rare" disease - which I think just means it isn't taught in medical schools and many people go undiagnosed. Sound familiar? For me, celiac was linked with fibromyalgia. But I diagnosed myself with celiac - this was later confirmed by a very renowned expert in celiac. Now, I am sure I developed a bad case of D.I. while undergoing a string of surgeries. So I am wondering if anyone else out there has this problem of drinking a lot of water, but still feeling dehydrated, with dry skin, or with a diagnosis of Sjogren's Syndrome or gluten intolerance? Maybe fibro ties into all this somehow? They may all be indicators of auto-immune processes.


January - November 28

In my previous post the urine specific gravity should be "less than" 1.005. The "less than" symbol did not come through. Also, my error - D.I. causes high sodium levels, not low.

These are a few symptoms of D.I. related to kidney problems lifted from Medline Plus.

If you do not drink enough fluids, dehydration can result. Symptoms may include:

Dry mucous membranes
Dry skin
Sunken appearance to eyes
Sunken fontanelles (soft spot) in infants

Other symptoms that can occur due to inadequate fluids include:

Fatigue, lethargy
Low body temperature
Muscle pains
Rapid heart rate
Weight loss


axxie - November 29

January are you going to get the gp to look into this, it would seem the patient needs to educate yet again another doctor.



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