Do I have Diabetes Insipidus?

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robt
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/9/2009 1:34 AM (GMT -6)   
I think I might have diabetes insipidus, but I am not sure. I have been to my doctor and an endocrinologist and they haven't mentioned the disease to me. They have just mentioned and ruled out the more typical "sugar" diabetes. My doctor has just told me to decrease my water intake. I am now drinking about 60oz a day with the decrease with no apparent improvement. I used to drink about 100 oz a day and was always thirsty.

Here's a brief rundown of my symptoms:

I am usually quite thirsty and drinking water usually makes me more thirsty. I urinate most of the water that I drink in about an hour. My urine is usually pale yelloww, but not completely clear. If I reduce my water intake, my thirst symptoms are less extreme but still present. Eating alleviates my thirst for about half an hour.

I have done a 24 hour urine test and my sodium levels were borderline high, 247 mEq/TV. I urinated a little more than 3L and drank about 3.5 L that day. I had to stop drinking water around bed time because I filled the supplied container. It took me about 12 hours to urinate 3L. All of my other tests(potassium and sodium serum and osmolality) were normal. My urine osmolality was 462. I usually wake up in the night to urinate if I drank water right before bed time. I usually avoid drinking water before bed, but wake up really thirsty at night and drink in the middle of the night every day.

Another side effect of this is that I usually have hard, dry stools, but I have a bowel movement everyday. The stools are painful to pass and usually cause me to have anal fissures. Stool softeners and Metamucil do not help at all. I think because they need water to really help and I am not retaining it well. Milk of magnesia helps a little bit. Only a colon cleanse with senna will cause watery stools and alleviate the fissures. Could this be DI?

LanieG
Forum Moderator


Date Joined Nov 2006
Total Posts : 3038
   Posted 2/9/2009 8:34 AM (GMT -6)   
robt, diabetes insipidus is a disease completely unrelated to diabetes mellitus.  Since DI involves the kidneys, I presume you should see a nephrologist.  This disease has nothing to do with your blood sugar and I think you might be able to find help at www.diabetesinsipidus.org.  Good luck and make sure you pursue this with the appropriate doctor.

Lanie
forum moderator - diabetes
diabetes controlled so far by low/no carb diet and exercise; no meds


robt
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 3/11/2010 12:42 AM (GMT -6)   
Hi, i know its been a while! But, I still have the problem. An endocrinologist told me milk of magnesia was okay to take everyday so I started doing that everyday since around May 2009. My thirst problems subsided about 50% and I no longer urinated every hour. My stools were really soft from the Milk of Magnesia and life was bearable for the most part.

Recently, I went to another doctor because my old doctor basically said he couldn't help me since all my tests were normal.My new doctor told me to stop taking the Milk of Magnesia and to try fiber supplements again. A week later and I have a lot of bleeding when I go to the bathroom from the anal fissure or hemorrhoid. I don't know what it is.

To answer the previous questions, I exercise a lot. I am training for a half marathon. I eat about 3-4 carrots a day, switched to brown rice (all whole grains in fact), eat plain shredded wheat for breakfast, drink plenty of water (that I pee out), and eat about a pound of vegetables a day( usually brocolli and green beans).

robt
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 3/11/2010 12:44 AM (GMT -6)   
I also do not drink anything but water. I don't do sodas, coffee, or tea. Any ideas on what this could be? I am getting some more tests done Friday. Any ideas on why stopping the Milk of Magnesia almost immediately caused my thirst symptoms and frequent urination to get worse? I know it is supposed to draw water to my stools, so maybe it was helping me retain water? Any suggestions as to what tests I can suggest to the doctor to approve?

LanieG
Forum Moderator


Date Joined Nov 2006
Total Posts : 3038
   Posted 3/11/2010 9:01 AM (GMT -6)   
robt, I don't know how to help you.  If your diagnosis is still diabetes insipidus, you don't have diabetes mellitus which is what this forum is about.  You need to go back to your doctor and ask these questions.  Diabetes insipidus is not related to diabetes mellitus.
Lanie
 
forum moderator - diabetes
diabetes controlled so far by exercise and a low/no carb diet


beachlife
Regular Member


Date Joined Feb 2009
Total Posts : 453
   Posted 4/24/2013 11:58 PM (GMT -6)   
@robt - not sure if you are still around but it is thought I have have DI. How are you doing now. Did you re-start the milk of magnesia? Frequent urination started for me ~2 years ago. Urologist couldn't figure it out, my ND found my ADH levels were low, and my new Integrative MD is finding the same. They havn't Dx me with DI but it is a thought. I'm constantly thirsty, even after drinking. Constantly have to urinate, and also go at night. Vesicare helped a little bit but not enough. At first it was thought I had a prostate infection but antibiotics did not help.

50% reduction with M of M is amazing! I would love that!!

My Dr is checking with colleagues before my next test. We just did food allergy testing MRT Leap waiting for results. Would love to know how you are doing. Did you rock the half marathon?

@lanie - I know you said this is a forum for DM but the title of the group says diabetes in general and not sure where else to post this on healing well. thanks for understanding.
http://lifewithcolitis.blogspot.com/
Flexitarian, Gluten Free, Health coach and Yoga teacher
'00 - UC - Proctitis
your beliefs become your thoughts, your thoughts become your words, your words become your actions, your actions become your habits, your habits become your values, your values become your destiny

beachlife
Regular Member


Date Joined Feb 2009
Total Posts : 453
   Posted 4/25/2013 12:05 AM (GMT -6)   
@robt - one more thing. when my symptoms first started I went to Pelvic Floor therapy, that *really* helped and I weened off of Vesicare and was basically fine for almost 2 years until it re-appeared. It was basically structured kegel exercises, when I kept up with it the urges went away. Something to consider trying
http://lifewithcolitis.blogspot.com/
Flexitarian, Gluten Free, Health coach and Yoga teacher
'00 - UC - Proctitis
your beliefs become your thoughts, your thoughts become your words, your words become your actions, your actions become your habits, your habits become your values, your values become your destiny

LanieG
Forum Moderator


Date Joined Nov 2006
Total Posts : 3038
   Posted 4/25/2013 7:31 AM (GMT -6)   
Hello beachlife. I don't know where posts for diabetes insipidus should go, maybe "kidney" disorders? This thread is three years old and in general it's usually fruitless to respond to old posts like this as the original poster hasn't been seen in these three years. In any case, perhaps this forum should be renamed to 'diabetes mellitus' so there isn't any misunderstanding. I'll suggest this.
Lanie

diabetes moderator
diabetes type 2 controlled so far by diet and exercise
very low carb way of eating

Qwoman
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/2/2013 12:56 PM (GMT -6)   
This is mostly a response to beachlife but first:
 
MELLITUS vs. INSIPIDUS: Sorry DM's for hogging your post. DI is relatively uncommon. So stupid to not always refer to it as "Diabetes Mellitus" when us DI's are stuck with the word "diabetes" in our name. Doctor forms, life insurance forms, driver license forms all use the word "Diabetes". Now I know they mean DM but I'm not going to skip checking the box on an insurance form and give them the opportunity to deny my claim when I die. We have to live with this all the time. Even nurses think you mean DM when you say DI. It's a bit of a pain that could stop if they only used the word "Mellitus". Take this chat for eample.
 ----
If you think you have DI you should consult with an endocronologist. DI is usually treated via a nasal spray called DDAVP (desmopression acetate). Generic products are available. Not all cases are the same - root causes being different. But basically you don't make a natural hormone (or your body doesn't use it correctly). My DI was caused by a brain tumor that damaged my hypothalmus which makes the hormone (or triggers release of hormone - semantics).  Pituitary damage could affect it also. I've had it for 30 years so FYI here's what I know:
 
Thirst (without medicine): depending on if/how much the hormone works you would have various levels.  I make none. Basically my body can not retain fluids so after it dumps everything in my body, plus fluids it pulls from who knows where in my body, I drink. (My body gets thirsty to encourage me to replace these fluids.)  Full blown you'd be drinking every 15 minutes if not constantly.  When mine was severe but not full blown I couldn't go more than 30 minutes without water and then could drink 12 oz in one giant gulp. Pause for 5 seconds and repeat 3-4 times.  Go to the bathroom - then I'd be okay for 30 minutes. People like to tell you to stop drinking so much and then you wouldn't pee so much. Doesn't work that way. Some argue chicken vs egg but basically the body loses fluids THEN needs to refill. We are lucky we have the natural thirst response because if it wasn't working we wouldn't know we were dehydrated.
 
Urine: Specific gravity is zero without meds. Urine is clear ~ it's probably not even classified as urine.
 
Side symptoms:  Low sodium cause your body pushes it out. Diarrhea cause you are flooding your body with water. Less appetite cause water gives false fullness affect.
 
If you had full blown you'd be in the hospital because you can't keep up the pee-drink, pee-drink routine forever.
 
Solution: From my untrained brain. Taking the DDAVP would work if the DI is caused by no hormone. I don't believe it's gonna be harmful to try. It comes in injection form, weird tublar blow thru mouth to nose form, pills and nasal spray. The injection and tublar blow method is used if your dosage won't work with the 10 micrograms increments automatically put out by the nasal spray. I take one spray in each nostril every 12 hours.  It's an itz more than the dosage I was on before they made the nasal spray but so much easier.
 
Doctor: Again, endocronolgist.  They deal with the ENDOCRINE glands - hypothalmus, pituitary. They'd be best to diagnose DI. 
 
Life with DI:  Same as everybody else once you figure out your dosage. No side affects when you are good about taking your DDAVP.  Long term affects - none.
 
 
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