Has anyone been diagnosed with diabetes insipidus?

Discussion in 'Fibromyalgia Main Forum' started by JoFMS, Feb 23, 2007.

  1. JoFMS

    JoFMS New Member

    Hi All,

    My doctor suspects I have diabetes insipidus. I have had fibro for over 4 years. The last 8 months I have had v bad fatigue and been very stiff when waking in the middle of the night which I didn't used to get.

    The last 2/3 months I have also had excessive urination and thirst, dry mouth and skin, urinate over 3 litres per 12hrs.

    Theres a condition called diabetes insipidus which is to do with the hypothalamus not producing a anti-diuretic hormone to do with the pituitary gland.

    I am seeing my doctor tomorrow hopefully for more tests, it's something I wanted to share with others in case people have extreme thirst and excessive urination. It's not diabetes mellitus for me as I don't have glucose in my urine. THe symptoms of diabetes insipidus if it has continued for a while are also fatigue, muscle pain and stiffness.

    I suspect there may be a few of us with this added disorder due to our hypothalmus function and dehydration.

    Any info would be appreciated.

  2. Daisys

    Daisys Member

    I don't have any information, but sure appreciate this post. I'll be asking my doctor about it later in March, and will post if I have any info. I really could fit this picture.
  3. rockyjs

    rockyjs Member

    I developed DI about 12 years ago. I had gotten listeriosis which can cause a type of encephalitis and apparently that damaged my hypothalamus. I was drinking gallons of water a day and was dizzy, throwing up constantly and needed a ton of salt.

    Now I seem to alternate between too much (SIADH) and too little vasopressin so I just do the water restriction. If I eat animal fats or foods high in potassium it will set off the DI symptoms and if I drink any water I have to get a lot of extra salt to avoid hyponatremia (low blood sodium).

    There is a vasopressin nose spray that works well for some people...I was allergic to the preservative.

  4. Catseye

    Catseye Member

    At least your doctor figured it out. I kept going to the doctor for 6 months with frequent nighttime urination and severe dehydration that really burned out my adrenals after awhile. I was drinking like 5 glasses of water every night. I'd wake up with dry mouth and my heart pounding because I had no water in me. Every 2 hours I woke up and went to the bathroom and had to drink water. I was too weak to carry myself to the bathroom, so my husband went through this with me, every night for 6 months. I had even mentioned insipidus to the doctor at some point but he blew me off. I could have died from adrenal failure.

    After reading enough about it and figuring out that cfs patients have hormone problems because of the hypothalamus, I was convinced. I went to another doctor, an endocrinologist, and pretty much begged for the desmopressin (the inhaler, they don't use vasopressin from animals anymore, now it's the synthetic version, desmopressin). I told her the worst that could happen is that it wouldn't work. It can raise your blood pressure but mine was on the low side, anyway. I got it and it worked like a charm, immediately. I started with the problem in February and finally got the stuff in Aug last year.

    Maybe he knows that insipidus is rare and usually only in cases of head trauma or things like pituitary tumors. He probably doesn't know about the link of cfs patients with hypothalamus problems due to infections and stress. So maybe he's trying to rule out pituitary tumor or something. Us cfsers may progress to the point that we have hormone problems because of the hypothalamus-pituitary-adrenal axis not being able to function properly. It can be due to alcoholism, stress (meaning a bad infection that stresses the immune system or severe nutrient depletion that stresses everything), head trauma or tumors.

    Incidentally, most of the damage caused by alcoholism is because of the severe nutrient depletion that accompanies it. This doesn't mean alcoholics don't eat, it means they don't eat enough good stuff and/or the body is unable to extract the nutrients properly from the food and assimilate them afterwards.

    I don't think you're an alky, jofms, that part was just FYI for everyone! It was in the article I read explaining about the hpa axis and how it affects cfs patients.

    Between the liver and the hpa axis, the hormone regulation in the body is extremely complex and if everything isn't working right, it's bound to get messed up. So my hypothalamus was not signaling my pituitary to make more antidiuretic hormone. And that hormone makes your kidneys recirculate the water back in your body instead of putting it to your bladder for elimination. It makes you able to sleep through the night. And the resulting dehydration makes your blood pressure low because there's less water in your body and that makes your adrenals kick in with adrenaline to make your heart pump harder. And that burns the adrenals out after awhile!

    You should be fine once you get the hormone. And I don't think we'll need it forever. After awhile, I'll stop and see if I'm making my own antidiuretic hormone again.

    best wishes,


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