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severe dehydration?

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  • E.M. Snyder
    Hi all, I ve just been preliminarily diagnosed with Diabetes Insipidus. At last count, my serum osmolality was 335, and urine was 92. It s most likely I have
    Message 1 of 17 , Dec 3, 2000
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      Hi all,

      I've just been preliminarily diagnosed with Diabetes
      Insipidus. At last count, my serum osmolality was 335,
      and urine was 92. It's most likely I have central DI
      (MRI was negative), but I can't get the definitive
      test until an appt. with an endocrinologist on Dec 21,
      which means I won't get any hormone replacement until
      Dec 21. In the mean time, I'm afraid of getting
      dehydrated, as I'm not feeling particularily thirst. I
      have to force-feed myself four liters of water a day,
      but when I did a 24-hr urine count, I put out about
      6.8 liters. That means I'm losing 2.8 a day. Recently,
      I've started feeling dizzy all the time, including a
      loss of equilibrium that's very disconcerting, like I
      almost trip over something invisible. Could this be
      caused by dehydration? Anyone else have similar
      experiences?

      Also, I have a really odd experience to go along with
      my DI. Before getting the DI symptoms, I had low blood
      calcium (hypocalcemia) due to having my thyroid
      removed because of thyroid cancer. When the DI
      symptoms came on, the calcium levels shot up, and the
      problem went away. My doctors are totally stumped.
      Anyone else experience anything like this, or know
      what it might mean?

      Thanks everyone. I'm so glad to have found this list!

      Take care,
      Liz

      __________________________________________________
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    • Maggie McGrail
      Liz, I m sending this to my son immediately. He doesn t have internet access, but his dizziness is really getting in his way. He was diagnosed just a few
      Message 2 of 17 , Dec 3, 2000
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        Liz, I'm sending this to my son immediately.  He doesn't have internet access, but his dizziness is really getting in his way.  He was diagnosed just a few weeks ago and hasn't had much contact with his doctor yet.At 02:16 PM 12/03/2000 -0800, you wrote:
        Hi all,

        I've just been preliminarily diagnosed with Diabetes
        Insipidus. At last count, my serum osmolality was 335,
        and urine was 92. It's most likely I have central DI
        (MRI was negative), but I can't get the definitive
        test until an appt. with an endocrinologist on Dec 21,
        which means I won't get any hormone replacement until
        Dec 21. In the mean time, I'm afraid of getting
        dehydrated, as I'm not feeling particularily thirst. I
        have to force-feed myself four liters of water a day,
        but when I did a 24-hr urine count, I put out about
        6.8 liters. That means I'm losing 2.8 a day. Recently,
        I've started feeling dizzy all the time, including a
        loss of equilibrium that's very disconcerting, like I
        almost trip over something invisible. Could this be
        caused by dehydration? Anyone else have similar
        experiences?

        Also, I have a really odd experience to go along with
        my DI. Before getting the DI symptoms, I had low blood
        calcium (hypocalcemia) due to having my thyroid
        removed because of thyroid cancer. When the DI
        symptoms came on, the calcium levels shot up, and the
        problem went away. My doctors are totally stumped.
        Anyone else experience anything like this, or know
        what it might mean?

        Thanks everyone. I'm so glad to have found this list!

        Take care,
        Liz

        __________________________________________________
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      • E.M. Snyder
        I d definitely be interested to hear what his experiences are. I m new to this too, and I just don t know if I should be worried or not. Liz ...
        Message 3 of 17 , Dec 3, 2000
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          I'd definitely be interested to hear what his
          experiences are. I'm new to this too, and I just don't
          know if I should be worried or not.

          Liz
          --- Maggie McGrail <mopsey@...> wrote:
          > Liz, I'm sending this to my son immediately. He
          > doesn't have internet
          > access, but his dizziness is really getting in his
          > way. He was diagnosed
          > just a few weeks ago and hasn't had much contact
          > with his doctor yet.At
          > 02:16 PM 12/03/2000 -0800, you wrote:
          > >Hi all,
          > >
          > >I've just been preliminarily diagnosed with
          > Diabetes
          > >Insipidus. At last count, my serum osmolality was
          > 335,
          > >and urine was 92. It's most likely I have central
          > DI
          > >(MRI was negative), but I can't get the definitive
          > >test until an appt. with an endocrinologist on Dec
          > 21,
          > >which means I won't get any hormone replacement
          > until
          > >Dec 21. In the mean time, I'm afraid of getting
          > >dehydrated, as I'm not feeling particularily
          > thirst. I
          > >have to force-feed myself four liters of water a
          > day,
          > >but when I did a 24-hr urine count, I put out about
          > >6.8 liters. That means I'm losing 2.8 a day.
          > Recently,
          > >I've started feeling dizzy all the time, including
          > a
          > >loss of equilibrium that's very disconcerting, like
          > I
          > >almost trip over something invisible. Could this be
          > >caused by dehydration? Anyone else have similar
          > >experiences?
          > >
          > >Also, I have a really odd experience to go along
          > with
          > >my DI. Before getting the DI symptoms, I had low
          > blood
          > >calcium (hypocalcemia) due to having my thyroid
          > >removed because of thyroid cancer. When the DI
          > >symptoms came on, the calcium levels shot up, and
          > the
          > >problem went away. My doctors are totally stumped.
          > >Anyone else experience anything like this, or know
          > >what it might mean?
          > >
          > >Thanks everyone. I'm so glad to have found this
          > list!
          > >
          > >Take care,
          > >Liz
          > >
          > >__________________________________________________
          > >Do You Yahoo!?
          > >Yahoo! Shopping - Thousands of Stores. Millions of
          > Products.
          > >http://shopping.yahoo.com/
          > >
          > >
          > >Community email addresses:
          > > Post message: diabetesinsipidus@onelist.com
          > > Subscribe:
          > diabetesinsipidus-subscribe@onelist.com
          > > Unsubscribe:
          > diabetesinsipidus-unsubscribe@onelist.com
          > > List owner:
          > diabetesinsipidus-owner@onelist.com
          > >
          > >Shortcut URL to this page:
          > >
          > http://www.onelist.com/community/diabetesinsipidus
          >
          >


          __________________________________________________
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          Yahoo! Shopping - Thousands of Stores. Millions of Products.
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        • AnniesTreasure@webtv.net
          Please reply to the person who sent this to you and not the whole list. I opened this and it s a personal message to another person. Please use the reply
          Message 4 of 17 , Dec 3, 2000
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          • Aisha Elderwyn
            Dear Liz, I ve just been preliminarily diagnosed with Diabetes Insipidus. Have your Dr s suggest a water deprivation test done in the hospital to check if
            Message 5 of 17 , Dec 3, 2000
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              Dear Liz,
               
              "I've just been preliminarily diagnosed with Diabetes Insipidus."
               
              Have your Dr's suggest a water deprivation test done in the hospital to check if your pituitary is producing ADH (Anti-Diuretic Hormone). Another thing they could do is a CT Scan of your kidneys to check for Nephrogenic DI.
               
              When dehydrated you will indeed feel dizzy, tired, faint, have low blood pressure, low body temperature and other things. Keep drinking. If your output is more then your in put then make sure you keep drinking. Have you tired something like a sports drink that contains electrolytes? Ask your chemist for a powder that is an electrolyte balance. This may help you to utilise water better. Just a thought.
               
              Your dizziness and symptoms could also be anaemia, so make sure they do a blood test for iron levels.
               
              I have had similar problems but I was always thirsty. I was anaemic also and was later diagnosed with DI which is a side effect from an Auto Immune disease I have.
               
              Your low calcium levels worry me. Especially since it then shot up. Are your calcium levels normal now? High calcium goes with the illness I have, it also goes with parathyroidism. Now I dont know if you can get this cause you had your thyroid removed or not? However if you have high calcium from parathyroidism it can create kidney stones and other kidney malfunctions which could be the cause of your water problems.
               
              I'd recommend seeing a good endocrinologist, getting a CT scan of kidneys, blood tests that relate to pituitary function, ADH, thyroid uptake, TSH, organ function, and general markers of illness such as an ESR and CRP, retest the calcium levels, as well as a complete blood count and iron studies (ferritin levels especially) to make sure it is not causing you to be anaemic.
               
              Here is some information for you on high/low calcium, ADH, and iron tests. Just ask if you want more information on tests or anything. Hope this helps
               
              Good luck!
              Blessings,
              Aisha.
               

              Antidiuretic Hormone (ADH)

              Use Aid in the diagnosis of urine concentration disorders, especially diabetes insipidus, syndrome of inappropriate ADH (SIADH), psychogenic water intoxication, and syndromes of ectopic ADH production

              Additional Information ADH, produced in the supraoptic and paraventricular locations of the hypothalamus, acts on the collecting tubules of the kidney to cause increase in permeability to water and urea. ADH release is triggered by a number of both osmotic and nonosmotic stimuli. Measurement of ADH is useful in separating central diabetes insipidus, which is marked by polydipsia and polyuria and is caused by inadequate ADH production from nephrogenic diabetes insipidus caused by the inability of renal tubules to respond to ADH. In SIADH, release of ADH is disproportionate to a low serum osmolality. SIADH results due to a number of conditions such as pulmonary disease, head trauma, and cancer.

              http://www.labcorp.com/datasets/labcorp/html/chapter/mono/sr005700.htm

              Calcium

              Use Work-up for coma, pancreatitis and other gastrointestinal problems, nephrolithiasis, polydipsia, polyuria, azotemia, multiple endocrine adenomatosis.

              Causes of high calcium:

               bull Hyperparathyroidism - look also for high ionized calcium, measured or calculated. Hyperparathyroidism may coexist with other endocrine tumors (multiple endocrine adenomatosis syndromes).
               bull Carcinoma, with or without bone metastases. Humoral hypercalcemia of malignancy (HHM), (tumor induced hypercalcemia) is seen especially in primary squamous cell carcinoma of lung, head and neck, but other important tumors include primaries in the kidney, liver, bladder, and ovary. It is probably caused by parathormone-like peptides. The most common solid tumors causing bone metastases are primaries in the breast and lung. Other neoplasms may also cause hypercalcemia. Differences between HPT and humoral hypercalcemia of malignancy include low dihydroxyvitamin D, reduced calcium absorption,1 and the presence of a nonparathyroid tumor. Alkaline phosphatase more than twice its upper limit is more suggestive of cancer than of hyperparathyroidism. Especially if there is only a brief duration of symptoms, anemia, hypoalbuminemia, and other findings suggestive of malignant disease, chloride/phosphorus ratio <29 mmol/L, chloride <100 mmol/L, high serum LD (LDH) and/or phosphorus, think first of malignant neoplasm.2The chloride/phosphorus ratio is predominantly of value when it is <29 mmol/L, to provide evidence against a diagnosis of primary hyperparathyroidism.2 Laboratory results which would favor malignancy include anemia, increased LD and alkaline phosphatase, decreased serum albumin and chloride, and chloride/phosphorus ratio <29 mmol/L. Parathyroid hormone-related protein was recently purified and identified by molecular cloning as a 141-amino acid peptide with limited homology to PTH itself. Both peptides activate the PTH receptor to produce hypercalcemia. PTH-related protein is now recognized as the cause of hypercalcemia in most solid tumors, particularly squamous, and renal carcinomas.3
               bull Myeloma
               bull Leukemia and lymphoma, especially T-cell4 lymphoma/leukemia and Burkitt's lymphoma.
               bull Dehydration is an extremely common cause of slight increases of calcium.
               bull Sarcoidosis (a fraction of patients have high serum calcium; usually without low serum phosphorus). More have hypercalciuria.
               bull Chronic hypervitaminosis D. Vitamin A intoxication, isotretinoin (a vitamin A derivative)5.
               bull Prolonged immobilization (probably uncommon), in patient with increased bone turnover (eg, Paget's disease of bone, malignancy, children).
               bull TB, histoplasmosis, coccidioidomycosis, berylliosis
               bull Milk-alkali syndrome: prolonged use of calcium-containing materials and alkali (eg, CaCO3 or other absorbable alkali ulcer remedies with high milk intake) now rare.
               bull Idiopathic hypercalcemia of infancy (uncommon)
               bull Endocrine: hyperthyroidism, Addison's disease, acromegaly, pheochromocytoma (rare cause of hypercalcemia)
               bull Advanced chronic liver disease
               bull Bacteremia
               bull Familial hypocalciuric hypercalcemia6 (dominant inheritance); the best test for familial benign hypercalciuria (FBH) is a plot of fasting serum PTH against fasting urine calcium excretion7
               bull Aluminum induced renal osteomalacia
               bull Rhabdomyolysis
               bull Several commonly used drugs cause in vivo elevation, including calcium salts, lithium, thiazide/chlorthalidone therapy, other diuretics; vitamins D and A and estrogens (rapid increase in patients with breast carcinoma).

              In any case of hypercalcemia, it is desirable to measure magnesium and potassium levels. A helpful mnemonic for the differential diagnosis of the more common causes of hypercalcemia is DCHIMPS (drugs, cancer, hyperparathyroidism, intoxication with vitamin D or A, milk alkali syndrome, Paget's disease of bone, sarcoidosis).1

              Causes of low calcium:

               bull Low albumin and low total protein relate to common, usually slight decreases of calcium. The routine method measures total calcium, about half of which is bound to plasma proteins. Since the metabolically active form of calcium is the ionized state, the patient's serum protein level should be considered when interpreting a calcium result. For example, a patient's ionized calcium may be normal when the total calcium is elevated in the presence of elevated proteins and, conversely, may also be normal when the total calcium is low and the proteins are low.
               bull High phosphorus: renal insufficiency, hypoparathyroidism, pseudohypoparathyroidism
               bull Vitamin D deficiency, rickets, osteomalacia (Alkaline phosphatase is a test for osteomalacia. Calcium, phosphorus, and alkaline phosphatase can all be normal in osteomalacia.)
               bull Milkman's syndrome
               bull Malabsorption or malnutrition with interference with vitamin D and/or calcium absorption
               bull Renal tubular acidosis
               bull Pancreatitis, acute
               bull Dilutional: I.V. fluids
               bull Bacteremia
               bull Hypomagnesemia
               bull Anticonvulsants and other common drugs, most by in vivo action, can depress calcium. Barbiturates in elderly may cause calcium decrease. Other drugs, including calcitonin, corticosteroids, gastrin, glucagon, glucose, insulin, magnesium salts, methicillin and tetracycline in pregnancy.


              Additional Information In the differential diagnosis of hypercalcemia serum calcium should be measured on at least three occasions. In primary hyperparathyroidism (HPT) parathyroid hormone, serum chloride, and urine calcium are increased. Rarely, in HPT the hypercalcemia is accompanied by a low-normal PTH.8 In HPT, calcium rises, then phosphorus falls, then alkaline phosphatase rises. Alkaline phosphatase is usually not more than twice its upper limit in HPT. Measured ionized calcium and calculated ionized calcium may be helpful.

              Twenty-four hour urinary calcium is increased in HPT, low in familial hypocalciuric hypercalcemia (FHH) which is characterized by hypercalcemia and hypocalciuria. An autosomal dominant, it apparently has no complications. Ratio of renal calcium clearance to creatinine clearance below 0.01 suggests this genetic disease. The calcium/creatinine clearance ratio is said to discriminate between FHH and hyperparathyroidism.2 Family studies are highly desirable.

              Hypocalcemia, then hypercalcemia occur with rhabdomyolysis - induced acute renal failure

              http://www.labcorp.com/datasets/labcorp/html/chapter/mono/pr001700.htm

              Ferritin, (Iron)

              Use Diagnose hypochromic, microcytic anemias. Decreased in iron deficiency anemia and increased in iron overload. Ferritin levels correlate with and are useful in evaluation of total body storage iron. In hemochromatosis, both ferritin and iron saturation are increased. Ferritin levels in hemochromatosis may be >1000 ng/mL.

              Additional Information The serum ferritin is, other than a bone marrow examination, the most reliable indicator of total body iron stores. When combined with the serum iron and percent saturation of iron binding capacity/transferrin, it can usually differentiate the microcytic hypochromic anemias into iron deficiency anemia (ferritin low, iron low, saturation low, TIBC high, transferrin high), the anemia of chronic disease (ferritin normal or high, iron low, normal to low transferrin or TIBC), or thalassemia (ferritin normal or high). Ferritin is low with combined iron deficiency and thalassemia. In adults, serum ferritin level le10 ng/mL indicates iron deficiency. High serum ferritin levels may be associated with inflammation, liver disease, megaloblastic anemia, hemolytic anemia, sideroblastic anemia, thalassemia, iron overload (hemochromatosis, hemosiderosis), malignant diseases including leukemia and malignant lymphoma and are described with CEA elevations in patients with breast cancer. Very high levels indicate iron overload. Oral and injected iron increase ferritin levels. Increased serum ferritin may be a risk factor in primary hepatocellular carcinoma.2

              Primary hemochromatosis is inherited in an autosomal recessive manner with preliminary evidence that the involved gene is linked to the A locus of the histocompatibility complex on chromosome 6. Inappropriate increase in iron absorption and parenchymal tissue deposition eventuates in hepatic cirrhosis, diabetes, testicular atrophy, and fine, soft, bronze to slate gray skin and very high serum ferritin levels (usually >1000 ng/mL).

              Red cell ferritin in conjunction with serum ferritin may be useful in distinguishing iron deficiency from iron overload in patients who have beta-thalassemia.3

              The decline in serum ferritin occurring during adolescence has been shown to be due to the onset of menarche rather than as a result of the accompanying growth spurt.4

              Elevated serum ferritin levels in patients with cancer is associated with a poor prognosis which may be due in part to deleterious biological effects of tumor ferritins on lymphocyte and granulocyte function.5 Extensive data is accumulating on the nature of isoferritins and their association with and possible utilization in the evaluation of malignant neoplasia.6

              http://www.labcorp.com/datasets/labcorp/html/chapter/mono/ri020300.htm

            • Merry Macpherson
              Hi, Any idea what might have caused you to come up with DI? Recent surgery or a brain injury? I was born with DI, it s genetic in my case. I guess diagnosis
              Message 6 of 17 , Dec 4, 2000
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                Hi,

                Any idea what might have caused you to come up with DI? Recent surgery or a
                brain injury?

                I was born with DI, it's genetic in my case. I guess diagnosis was more of a
                formality for me, and I don't take any medication except for car trips.

                The only problems I have is when I take the medication. I have to be careful
                not to drink so much. I will feel dizzy and disoriented due to "water
                intoxication". I also feel really groggy in the morning when I take it near
                bedtime, most likely due to sleeping a full night through (I generally use
                the bathroom every 2 hours even at night... I drink a 32oz glass and refill
                it to take to bed every 2 hours too, and usually it is empty when I get up
                to use the bathroom again... making that about 64oz every 2 hours...) Since
                I lived some 22 years without even knowing I could take medication (my
                mother said there was some but a relative or two took something back in the
                70's and either didnt like it or it didnt work too well or something?!?) I
                choose to just live with it. I have no idea what the effect of DI is on
                someone that hasn't had it since birth. But, one things you want to be
                careful of is drinking too much! Could you be eating less due to feeling
                full from water? I also eat a lot more salt on my food than a "normal"
                person, and my sodium level has always been right on (in fact an ER doctor
                laughed and said I don't have DI because of that.... grr..) Maybe you can
                try something like Gatorade? DI isn't just a matter of keeping yourself
                hydrated... there's a balance you need to maintain and too much water can
                dilute everything. I know sometimes when I'm hungry I just drink a bit more
                and get filled up so I hope you are still eating regular amounts of food! I
                think that is one of the concerns of children having DI, they don't eat
                enough.

                Anyhow, I hope some people on the list have had experiences similar to yours
                and can be more help. Can you give a little more detail on your situation,
                like what other things are going on, what are you seeing a doctor for, etc?

                Oh... I had a 24 hour urine collection (I didn't measure how much I drank)
                and I quit before the 24 hours was up (pregnant and it was a hassle to do!)
                and I collected 11 liters in that time. Should have seen the nurses faces...
                they thought it was strange that I requested extra jugs, thinking one was
                more than enough.. rofl.. And I had to call and ask for the definition of
                "first morning urine" since I go several times in the morning... I was like,
                well, I went at midnight, and two, and four... etc.. I guess they were
                wanting concentrated urine that I don't produce!

                -Merry



                I'd definitely be interested to hear what his
                experiences are. I'm new to this too, and I just don't
                know if I should be worried or not.

                Liz
                --- Maggie McGrail <mopsey@...> wrote:
                > Liz, I'm sending this to my son immediately. He
                > doesn't have internet
                > access, but his dizziness is really getting in his
                > way. He was diagnosed
                > just a few weeks ago and hasn't had much contact
                > with his doctor yet.At
                > 02:16 PM 12/03/2000 -0800, you wrote:
                > >Hi all,
                > >
                > >I've just been preliminarily diagnosed with
                > Diabetes
                > >Insipidus. At last count, my serum osmolality was
                > 335,
                > >and urine was 92. It's most likely I have central
                > DI
                > >(MRI was negative), but I can't get the definitive
                > >test until an appt. with an endocrinologist on Dec
                > 21,
                > >which means I won't get any hormone replacement
                > until
                > >Dec 21. In the mean time, I'm afraid of getting
                > >dehydrated, as I'm not feeling particularily
                > thirst. I
                > >have to force-feed myself four liters of water a
                > day,
                > >but when I did a 24-hr urine count, I put out about
                > >6.8 liters. That means I'm losing 2.8 a day.
                > Recently,
                > >I've started feeling dizzy all the time, including
                > a
                > >loss of equilibrium that's very disconcerting, like
                > I
                > >almost trip over something invisible. Could this be
                > >caused by dehydration? Anyone else have similar
                > >experiences?
                > >
                > >Also, I have a really odd experience to go along
                > with
                > >my DI. Before getting the DI symptoms, I had low
                > blood
                > >calcium (hypocalcemia) due to having my thyroid
                > >removed because of thyroid cancer. When the DI
                > >symptoms came on, the calcium levels shot up, and
                > the
                > >problem went away. My doctors are totally stumped.
                > >Anyone else experience anything like this, or know
                > >what it might mean?
                > >
                > >Thanks everyone. I'm so glad to have found this
                > list!
                > >
                > >Take care,
                > >Liz
                > >
                > >__________________________________________________
                > >Do You Yahoo!?
                > >Yahoo! Shopping - Thousands of Stores. Millions of
                > Products.
                > >http://shopping.yahoo.com/
                > >
                > >
                > >Community email addresses:
                > > Post message: diabetesinsipidus@onelist.com
                > > Subscribe:
                > diabetesinsipidus-subscribe@onelist.com
                > > Unsubscribe:
                > diabetesinsipidus-unsubscribe@onelist.com
                > > List owner:
                > diabetesinsipidus-owner@onelist.com
                > >
                > >Shortcut URL to this page:
                > >
                > http://www.onelist.com/community/diabetesinsipidus
                >
                >


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              • Marian Arminger
                i think that you should contact dr. gary robertson at 312-503-0058 and speak with him directly. marian arminger, president DiF
                Message 7 of 17 , Dec 4, 2000
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                  i think that you should contact dr. gary robertson at 312-503-0058 and speak
                  with him directly.
                  marian arminger, president DiF

                  "E.M. Snyder" wrote:

                  > Hi all,
                  >
                  > I've just been preliminarily diagnosed with Diabetes
                  > Insipidus. At last count, my serum osmolality was 335,
                  > and urine was 92. It's most likely I have central DI
                  > (MRI was negative), but I can't get the definitive
                  > test until an appt. with an endocrinologist on Dec 21,
                  > which means I won't get any hormone replacement until
                  > Dec 21. In the mean time, I'm afraid of getting
                  > dehydrated, as I'm not feeling particularily thirst. I
                  > have to force-feed myself four liters of water a day,
                  > but when I did a 24-hr urine count, I put out about
                  > 6.8 liters. That means I'm losing 2.8 a day. Recently,
                  > I've started feeling dizzy all the time, including a
                  > loss of equilibrium that's very disconcerting, like I
                  > almost trip over something invisible. Could this be
                  > caused by dehydration? Anyone else have similar
                  > experiences?
                  >
                  > Also, I have a really odd experience to go along with
                  > my DI. Before getting the DI symptoms, I had low blood
                  > calcium (hypocalcemia) due to having my thyroid
                  > removed because of thyroid cancer. When the DI
                  > symptoms came on, the calcium levels shot up, and the
                  > problem went away. My doctors are totally stumped.
                  > Anyone else experience anything like this, or know
                  > what it might mean?
                  >
                  > Thanks everyone. I'm so glad to have found this list!
                  >
                  > Take care,
                  > Liz
                  >
                  > __________________________________________________
                  > Do You Yahoo!?
                  > Yahoo! Shopping - Thousands of Stores. Millions of Products.
                  > http://shopping.yahoo.com/
                  >
                  >
                  > Community email addresses:
                  > Post message: diabetesinsipidus@onelist.com
                  > Subscribe: diabetesinsipidus-subscribe@onelist.com
                  > Unsubscribe: diabetesinsipidus-unsubscribe@onelist.com
                  > List owner: diabetesinsipidus-owner@onelist.com
                  >
                  > Shortcut URL to this page:
                  > http://www.onelist.com/community/diabetesinsipidus
                • Marian Arminger
                  oh, call him in the morning, chicago time. i am in baltimore maryland and he is 1 hour behind me.
                  Message 8 of 17 , Dec 4, 2000
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                    oh, call him in the morning, chicago time. i am in baltimore maryland and
                    he is 1 hour behind me.

                    "E.M. Snyder" wrote:

                    > I'd definitely be interested to hear what his
                    > experiences are. I'm new to this too, and I just don't
                    > know if I should be worried or not.
                    >
                    > Liz
                    > --- Maggie McGrail <mopsey@...> wrote:
                    > > Liz, I'm sending this to my son immediately. He
                    > > doesn't have internet
                    > > access, but his dizziness is really getting in his
                    > > way. He was diagnosed
                    > > just a few weeks ago and hasn't had much contact
                    > > with his doctor yet.At
                    > > 02:16 PM 12/03/2000 -0800, you wrote:
                    > > >Hi all,
                    > > >
                    > > >I've just been preliminarily diagnosed with
                    > > Diabetes
                    > > >Insipidus. At last count, my serum osmolality was
                    > > 335,
                    > > >and urine was 92. It's most likely I have central
                    > > DI
                    > > >(MRI was negative), but I can't get the definitive
                    > > >test until an appt. with an endocrinologist on Dec
                    > > 21,
                    > > >which means I won't get any hormone replacement
                    > > until
                    > > >Dec 21. In the mean time, I'm afraid of getting
                    > > >dehydrated, as I'm not feeling particularily
                    > > thirst. I
                    > > >have to force-feed myself four liters of water a
                    > > day,
                    > > >but when I did a 24-hr urine count, I put out about
                    > > >6.8 liters. That means I'm losing 2.8 a day.
                    > > Recently,
                    > > >I've started feeling dizzy all the time, including
                    > > a
                    > > >loss of equilibrium that's very disconcerting, like
                    > > I
                    > > >almost trip over something invisible. Could this be
                    > > >caused by dehydration? Anyone else have similar
                    > > >experiences?
                    > > >
                    > > >Also, I have a really odd experience to go along
                    > > with
                    > > >my DI. Before getting the DI symptoms, I had low
                    > > blood
                    > > >calcium (hypocalcemia) due to having my thyroid
                    > > >removed because of thyroid cancer. When the DI
                    > > >symptoms came on, the calcium levels shot up, and
                    > > the
                    > > >problem went away. My doctors are totally stumped.
                    > > >Anyone else experience anything like this, or know
                    > > >what it might mean?
                    > > >
                    > > >Thanks everyone. I'm so glad to have found this
                    > > list!
                    > > >
                    > > >Take care,
                    > > >Liz
                    > > >
                    > > >__________________________________________________
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                    > > Products.
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                    > > >
                    > > >
                    > > >Community email addresses:
                    > > > Post message: diabetesinsipidus@onelist.com
                    > > > Subscribe:
                    > > diabetesinsipidus-subscribe@onelist.com
                    > > > Unsubscribe:
                    > > diabetesinsipidus-unsubscribe@onelist.com
                    > > > List owner:
                    > > diabetesinsipidus-owner@onelist.com
                    > > >
                    > > >Shortcut URL to this page:
                    > > >
                    > > http://www.onelist.com/community/diabetesinsipidus
                    > >
                    > >
                    >
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                    >
                    > Shortcut URL to this page:
                    > http://www.onelist.com/community/diabetesinsipidus
                  • OAT357@aol.com
                    Message 9 of 17 , Dec 4, 2000
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                    • Merry Macpherson
                      Send a blank email to this address to get removed: diabetesinsipidus-unsubscribe@onelist.com I did use the Reply button. ... From: AnniesTreasure@webtv.net
                      Message 10 of 17 , Dec 4, 2000
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                      • mskewlgal@aol.com
                        I m a lil confused. I have DI and I have never had any of these levels and osmality s checked, as far as I know. I simply thought, Hey, take this medicine.
                        Message 11 of 17 , Dec 7, 2000
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                          I'm a lil' confused. I have DI and I have never had any of these levels and
                          osmality's checked, as far as I know. I simply thought, "Hey, take this
                          medicine. Take more when you urinate more. End of story."

                          It looks like I have a lot to learn and really appreciate having this forum.

                          Thanks all,

                          Stephanie
                        • Merry Macpherson
                          Hi, How did you get DI? Is yours genetic like mine? I ve had those kinds of tests done many years ago, with no mention of medication, mostly just to prove that
                          Message 12 of 17 , Dec 8, 2000
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                            Hi,

                            How did you get DI? Is yours genetic like mine?

                            I've had those kinds of tests done many years ago, with no mention of
                            medication, mostly just to prove that I had it (though there was little
                            doubt in my family that I did! Just needed a note for school because our new
                            principal decided that time taken out of class to use the bathroom or other
                            excuses would be made up for in detention, and you had to track down your
                            assistant principal to get your hall pass signed in the first place!! Which
                            is quite unreasonable for someone with DI!!)

                            Fortunately my son doesn't have it... We're expecting a baby in March and
                            I'm going to look into getting "her" checked out at birth too... I'm really
                            hoping "she" doesn't have it, this is our last one! Seems like more females
                            in our family have DI, though there are males, just not as many males
                            born... For instance, my grandmother has it, had 3 kids (2 girl 1 boy) only
                            my mother inherited it.. My mother had 2 girls and 1 boy and both girls
                            inherited it. But my grandmother got it from her father, and she was one of
                            5 girls and 1 boy (who died very young) and I think 1 or 2 of her sisters
                            had DI too.

                            Very interesting to have a family like mine, I think... I've heard stories
                            about one of my ancestors that had DI, that at night they'd haul up a large
                            container of water and in the morning they'd haul down a large container of
                            urine... (this was most at least in the 1800's...)

                            For me, I rarely take the DDAVP. I've lived so long without it, that it
                            really is just a convenience type thing. The first time I went to get a
                            prescription filled, I guess our insurance required me to pay a certain
                            portion as a deductible.. So the pharmacy rang it up and said the price...
                            over $100!! And I told them they could keep it! No way I'd pay that much for
                            something I don't need! But it comes in handy, especially while pregnant :)
                            My OB/GYN wanted me to go to the endocrinologist AGAIN, because I mentioned
                            that I take it very very occasionally, and they were worried about it
                            causing blood clots. Ugh. Last pregnancy they said it was fine (different
                            doctors) and I don't feel I should have to pay for all those extra lab tests
                            when I don't even take it much anyway. And I looked it up... It seems that
                            it can cause blood clots when INJECTED during a SURGERY, and I am assuming
                            that it has a use other than for DI at that point, and that the person they
                            are injecting it into is NORMAL.

                            I hate to hear of people being diagnosed as DI and coming on here with all
                            sorts of problems, and DDAVP not helping too much (or causing worse
                            problems!) because that has not been my experience and I can't do anything
                            to help... Makes me wonder if they do in fact have DI or if something else
                            is wrong with them! I had an ER doctor tell look at me all funny like I was
                            crazy, I had no idea at that time that DI was caused by anything other than
                            genetics. She ordered some blood tests and came back and said my sodium
                            level was NORMAL and therefore I did NOT have DI. I went in to the ER
                            because I was having a fever and chills and a really bad headache...
                            Eventually even wrapping up in a blanket sitting in front of a fire wouldn't
                            warm me up, and a few minutes later I'd be outside cooling off because I was
                            sweating. I had a viral infection, but she was thinking maybe my sodium
                            level was off (because I claimed to have DI and didn't have my sodium level
                            monitored... which made her think I was nuts or lying..)

                            Anyway that's what made me look into DI a little more, and I called a doctor
                            at Vanderbilt in Nashville, he was a geneticist and doing a research project
                            on DI so I got examined for free. I've also sent samples to Dr Robertson,
                            and they also did my son's test at the same time.

                            I'm also interested in the theory I once heard about the genetic form being
                            brought over by someone from Scotland.. I like Genealogy and would like to
                            find out who this ancestor was, it is a likely explanation considering my
                            ancestry. I also heard there is a group of people in Japan that have the
                            genetic form.

                            Well anyway, enough about that.. :p
                            -Merry



                            I'm a lil' confused. I have DI and I have never had any of these levels and
                            osmality's checked, as far as I know. I simply thought, "Hey, take this
                            medicine. Take more when you urinate more. End of story."

                            It looks like I have a lot to learn and really appreciate having this forum.

                            Thanks all,

                            Stephanie

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                          • DTaylo5397@aol.com
                            I got my gift of DI from a craniopharyngioma which is a tumor in the pituitary area and it destroyed my pituitary and thyroid function. Now there are a
                            Message 13 of 17 , Dec 8, 2000
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                              I got my "gift" of DI from a craniopharyngioma which is a tumor in the
                              pituitary area and it destroyed my pituitary and thyroid function.  Now there
                              are a whole host of other problems.
                              Debra
                            • mskewlgal@aol.com
                              Debra, I had one in the pituitary area, too! I think the products in diet soda s caused it. That is my theory : ) Stephanie
                              Message 14 of 17 , Dec 8, 2000
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                                Debra,
                                I had one in the pituitary area, too! I think the products in diet soda's
                                caused it. That is my theory : )

                                Stephanie
                              • DTaylo5397@aol.com
                                Can t be, I drink the hard stuff with all the sugar :)
                                Message 15 of 17 , Dec 9, 2000
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                                  Can't be, I drink the hard stuff with all the sugar :)
                                • E.M. Snyder
                                  Hi all, Sorry I haven t replied, but things are just so confusing right now. My insurance won t pay for a water-deprivation test, since my osmolality was
                                  Message 16 of 17 , Dec 9, 2000
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                                    Hi all,

                                    Sorry I haven't replied, but things are just so
                                    confusing right now. My insurance won't pay for a
                                    water-deprivation test, since my osmolality was
                                    "definitive," but I did get a serum ADH test, which
                                    hasn't come back yet. My calcium is rock-steady
                                    normal, which it hasn't been for over two years.
                                    However, it's yet to get into a high range, so no
                                    one's worried yet about hypercalcemia. Oh, and I was
                                    tested for anemia, and everything came back a-OK.

                                    They have no idea what could be causing the DI. My
                                    kidneys were normal, MRI found a Rathke's cleft cyst
                                    of 2mm in the post. pituitary, but it wasn't in the
                                    right place to cause DI, and I've had no head trauma,
                                    surgery, or family history that could indicate DI. The
                                    only thing I've had is thyroid cancer, which they
                                    can't connect to the DI, although I'm having a scan in
                                    January just to make sure. Having my thyroid taken out
                                    caused damage to my parathyroids, which is what caused
                                    my low calcium levels for the past two years.

                                    I'm not sure whether or not I want to go on DDAVP. I
                                    guess it will depend on what my serum AVP turns out to
                                    be. Since my low calcium resolved at the same time as
                                    the DI came on, I guess I'm afraid that the DDAVP
                                    might bring back the hypocalcemia. It's not exactly
                                    logical, but it still makes me nervous, because the
                                    symptoms of DI are a LOT more pleasant than the
                                    symptoms of low serum calcium.

                                    Thanks to everyone for the information! It feels great
                                    to talk to other people going through the same things
                                    I am. Aisha, thanks so much for the articles. And
                                    Merry, I will call that doc that you mentioned--thank
                                    you for the number.

                                    My best,
                                    Liz
                                    --- Aisha Elderwyn <aisha@...> wrote:
                                    > Dear Liz,
                                    >
                                    > "I've just been preliminarily diagnosed with
                                    > Diabetes Insipidus."
                                    >
                                    > Have your Dr's suggest a water deprivation test done
                                    > in the hospital to check if your pituitary is
                                    > producing ADH (Anti-Diuretic Hormone). Another thing
                                    > they could do is a CT Scan of your kidneys to check
                                    > for Nephrogenic DI.
                                    >
                                    > When dehydrated you will indeed feel dizzy, tired,
                                    > faint, have low blood pressure, low body temperature
                                    > and other things. Keep drinking. If your output is
                                    > more then your in put then make sure you keep
                                    > drinking. Have you tired something like a sports
                                    > drink that contains electrolytes? Ask your chemist
                                    > for a powder that is an electrolyte balance. This
                                    > may help you to utilise water better. Just a
                                    > thought.
                                    >
                                    > Your dizziness and symptoms could also be anaemia,
                                    > so make sure they do a blood test for iron levels.
                                    >
                                    > I have had similar problems but I was always
                                    > thirsty. I was anaemic also and was later diagnosed
                                    > with DI which is a side effect from an Auto Immune
                                    > disease I have.
                                    >
                                    > Your low calcium levels worry me. Especially since
                                    > it then shot up. Are your calcium levels normal now?
                                    > High calcium goes with the illness I have, it also
                                    > goes with parathyroidism. Now I dont know if you can
                                    > get this cause you had your thyroid removed or not?
                                    > However if you have high calcium from parathyroidism
                                    > it can create kidney stones and other kidney
                                    > malfunctions which could be the cause of your water
                                    > problems.
                                    >
                                    > I'd recommend seeing a good endocrinologist, getting
                                    > a CT scan of kidneys, blood tests that relate to
                                    > pituitary function, ADH, thyroid uptake, TSH, organ
                                    > function, and general markers of illness such as an
                                    > ESR and CRP, retest the calcium levels, as well as a
                                    > complete blood count and iron studies (ferritin
                                    > levels especially) to make sure it is not causing
                                    > you to be anaemic.
                                    >
                                    > Here is some information for you on high/low
                                    > calcium, ADH, and iron tests. Just ask if you want
                                    > more information on tests or anything. Hope this
                                    > helps
                                    >
                                    > Good luck!
                                    > Blessings,
                                    > Aisha.
                                    >
                                    > Antidiuretic Hormone (ADH)
                                    > Use Aid in the diagnosis of urine concentration
                                    > disorders, especially diabetes insipidus, syndrome
                                    > of inappropriate ADH (SIADH), psychogenic water
                                    > intoxication, and syndromes of ectopic ADH
                                    > production
                                    >
                                    > Additional Information ADH, produced in the
                                    > supraoptic and paraventricular locations of the
                                    > hypothalamus, acts on the collecting tubules of the
                                    > kidney to cause increase in permeability to water
                                    > and urea. ADH release is triggered by a number of
                                    > both osmotic and nonosmotic stimuli. Measurement of
                                    > ADH is useful in separating central diabetes
                                    > insipidus, which is marked by polydipsia and
                                    > polyuria and is caused by inadequate ADH production
                                    > from nephrogenic diabetes insipidus caused by the
                                    > inability of renal tubules to respond to ADH. In
                                    > SIADH, release of ADH is disproportionate to a low
                                    > serum osmolality. SIADH results due to a number of
                                    > conditions such as pulmonary disease, head trauma,
                                    > and cancer.
                                    >
                                    >
                                    http://www.labcorp.com/datasets/labcorp/html/chapter/mono/sr005700.htm
                                    > Calcium
                                    > Use Work-up for coma, pancreatitis and other
                                    > gastrointestinal problems, nephrolithiasis,
                                    > polydipsia, polyuria, azotemia, multiple endocrine
                                    > adenomatosis.
                                    > Causes of high calcium: Hyperparathyroidism -
                                    > look also for high ionized calcium, measured or
                                    > calculated. Hyperparathyroidism may coexist with
                                    > other endocrine tumors (multiple endocrine
                                    > adenomatosis syndromes).
                                    > Carcinoma, with or without bone metastases.
                                    > Humoral hypercalcemia of malignancy (HHM), (tumor
                                    > induced hypercalcemia) is seen especially in primary
                                    > squamous cell carcinoma of lung, head and neck, but
                                    > other important tumors include primaries in the
                                    > kidney, liver, bladder, and ovary. It is probably
                                    > caused by parathormone-like peptides. The most
                                    > common solid tumors causing bone metastases are
                                    > primaries in the breast and lung. Other neoplasms
                                    > may also cause hypercalcemia. Differences between
                                    > HPT and humoral hypercalcemia of malignancy include
                                    > low dihydroxyvitamin D, reduced calcium absorption,1
                                    > and the presence of a nonparathyroid tumor. Alkaline
                                    > phosphatase more than twice its upper limit is more
                                    > suggestive of cancer than of hyperparathyroidism.
                                    > Especially if there is only a brief duration of
                                    > symptoms, anemia, hypoalbuminemia, and other
                                    > findings suggestive of malignant disease,
                                    > chloride/phosphorus ratio <29 mmol/L, chloride <100
                                    > mmol/L, high serum LD (LDH) and/or phosphorus, think
                                    > first of malignant neoplasm.2The chloride/phosphorus
                                    > ratio is predominantly of value when it is <29
                                    > mmol/L, to provide evidence against a diagnosis of
                                    > primary hyperparathyroidism.2 Laboratory results
                                    > which would favor malignancy include anemia,
                                    > increased LD and alkaline phosphatase, decreased
                                    > serum albumin and chloride, and chloride/phosphorus
                                    > ratio <29 mmol/L. Parathyroid hormone-related
                                    > protein was recently purified and identified by
                                    > molecular cloning as a 141-amino acid peptide with
                                    > limited homology to PTH itself. Both peptides
                                    > activate the PTH receptor to produce hypercalcemia.
                                    > PTH-related protein is now recognized as the cause
                                    > of hypercalcemia in most solid tumors, particularly
                                    > squamous, and renal carcinomas.3
                                    > Myeloma
                                    > Leukemia and lymphoma, especially T-cell4
                                    > lymphoma/leukemia and Burkitt's lymphoma.
                                    > Dehydration is an extremely common cause of
                                    > slight increases of calcium.
                                    > Sarcoidosis (a fraction of patients have
                                    > high serum calcium; usually without low serum
                                    > phosphorus). More have hypercalciuria.
                                    > Chronic hypervitaminosis D. Vitamin A
                                    > intoxication, isotretinoin (a vitamin A
                                    > derivative)5.
                                    > Prolonged immobilization (probably
                                    > uncommon), in patient with increased bone turnover
                                    > (eg, Paget's disease of bone, malignancy, children).
                                    >
                                    > TB, histoplasmosis, coccidioidomycosis,
                                    > berylliosis
                                    > Milk-alkali syndrome: prolonged use of
                                    > calcium-containing materials and alkali (eg, CaCO3
                                    > or other absorbable alkali ulcer remedies with high
                                    > milk intake) now rare.
                                    > Idiopathic hypercalcemia of infancy
                                    > (uncommon)
                                    > Endocrine: hyperthyroidism, Addison's
                                    > disease, acromegaly, pheochromocytoma (rare cause of
                                    > hypercalcemia)
                                    > Advanced chronic liver disease
                                    > Bacteremia
                                    > Familial hypocalciuric hypercalcemia6
                                    > (dominant inheritance); the best test for familial
                                    > benign hypercalciuria (FBH) is a plot of fasting
                                    > serum PTH against fasting urine calcium excretion7
                                    > Aluminum induced renal osteomalacia
                                    > Rhabdomyolysis
                                    > Several commonly used drugs cause in vivo
                                    > elevation, including calcium salts, lithium,
                                    > thiazide/chlorthalidone therapy, other diuretics;
                                    > vitamins D and A and estrogens (rapid increase in
                                    > patients with breast carcinoma).
                                    >
                                    >
                                    > In any case of hypercalcemia, it is desirable to
                                    > measure magnesium and potassium levels. A helpful
                                    > mnemonic for the differential diagnosis of the more
                                    > common causes of hypercalcemia is DCHIMPS (drugs,
                                    > cancer, hyperparathyroidism, intoxication with
                                    > vitamin D or A, milk alkali syndrome, Paget's
                                    > disease of bone, sarcoidosis).1
                                    >
                                    > Causes of low calcium: Low albumin and low total
                                    > protein relate to common, usually slight decreases
                                    > of calcium. The routine method measures total
                                    > calcium, about half of which is bound to plasma
                                    > proteins. Since the metabolically active form of
                                    > calcium is the ionized state, the patient's serum
                                    > protein level should be considered when interpreting
                                    > a calcium result. For example, a patient's ionized
                                    > calcium may be normal when the total calcium is
                                    > elevated in the presence of elevated proteins and,
                                    > conversely, may also be normal when the total
                                    > calcium is low and the proteins are low.
                                    > High phosphorus: renal insufficiency,
                                    > hypoparathyroidism, pseudohypoparathyroidism
                                    > Vitamin D deficiency, rickets, osteomalacia
                                    > (Alkaline phosphatase is a test for osteomalacia.
                                    > Calcium, phosphorus, and alkaline phosphatase can
                                    > all be normal in osteomalacia.)
                                    > Milkman's syndrome
                                    > Malabsorption or malnutrition with
                                    > interference with vitamin D and/or calcium
                                    > absorption
                                    > Renal tubular acidosis
                                    > Pancreatitis, acute
                                    > Dilutional: I.V. fluids
                                    > Bacteremia
                                    >
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                                  • Aisha Elderwyn
                                    They have no idea what could be causing the DI. Have you had normal blood tests to rule out any illnesses that could cause neurological involvement with DI
                                    Message 17 of 17 , Dec 9, 2000
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                                      "They have no idea what could be causing the DI."
                                       
                                      Have you had normal blood tests to rule out any illnesses that could cause neurological involvement with DI as a symptom like I have? A spinal tap to analise the spinal fluid also might help as the spinal fluid is different to the blood.
                                       
                                      Thats all I can think of right now. Sorry :-(
                                       
                                      Much love,
                                      Aisha
                                       
                                       
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