Syndrome of inappropriate antidiuretic hormone secretion (SIADH).

[Judee]

So my PCP retired in December and I had to go to a new doctor and she was going over my history with me and has concluded that I have Syndrome of inappropriate antidiuretic hormone secretion (SIADH).

Since researching this, I'm confused because this sounds like my body should be putting out too much ADH but that doesn't seem like what is happening to me. Instead of my body retaining water (edema) I have extremely dry skin, eyes, mouth, hair, etc. Plus I ALWAYS need to be near a bathroom and go about 20 times a day.

Yes, I did have two ER episodes of hyponatremia but I told her I suspected that was because of our extremely plain diet. We have a huge number of food allergies and can't do prepackaged. Plus, we hardly add salt to anything we make and at the time of one of the incidents I was on a low food/modified fast and probably drinking too much water and consuming no salt.

Since those incidents I now drink homemade electrolyte 1-3 times daily just to make sure I get enough. (Which also helps some with the bladder pain and frequent urination.)

I'm upset because after the test results she is acting like this is a concrete diagnosis and that I must have somehow stabilized. I hate when doctors do that because now I have a new condition listed on my chart that may throw other doctors off on what issues may really be wrong with me. (I do suspect I have some Dysautonomia going on which may be affecting how my body balances electrolytes because my average bp for years has been around 86/58.)

Any thoughts? Am I understanding this condition correctly. Has anyone else here been diagnosed with this?

 

[nanonug]

she was going over my history with me and has concluded that I have Syndrome of inappropriate antidiuretic hormone secretion (SIADH).

What kind of tests did you do for your doctor to reach this conclusion? Nephrogenic diabetes insipidus would lead to elevated levels of vasopressin in an attemp to compensate for "leaky" kidneys. You need to see an endocrinologist.

 

[Judee]

She checked my electrolytes (all within normal range) and did a urine osmolity (which was at 92 this time and 152 when my previous PCP checked (also still within range).

Re: Diabetes Insipidus - that's what I was thinking too but since they treat that with more vasopressin wouldn't that be the opposite of SIADH which is an excess of ADH?

**I just went back and re-read the link you posted. I see the difference now between the central diabetes insipidus and the one you referenced. Thank you!! I will research that one more and talk to her again and see if she will refer me to an endocrinologist.

 

[Runner5]

I have nephrogenic diabetes insipidus, but you need to have been on Lithium to have this rare form of diabetes insipidus. You definitely wouldn't want to go on a salt-free or low-salt diet with it though and my bladder hurts a lot and I run to the restroom all the time and know every public restroom extremely well.

The doctor did not treat me with Vasopressin and doctor said he thought it would someday correct itself. Mne does better when I avoid all sugar btw - not fruit or natural sugars, I mean like junk food kinda stuff.

I have no experience in what SIADH is or ADH or much about things, although what you are going through does sound quite a bit like diabetes insipidus (of which there are three forms) -- I stock electrolytes putting them into my water and carry electrolyte pills with me. When I feel physically weak my first question is - am I dehydrated? I also retain fluid. I also have a whole lot of food allergies. My doctor said my fatigue was most likely from the loss of electrolytes and from the kidney condition. My creatinine tends to return elevated.

I used to go in every 4 months for kidney checkups but now it's once a year.

 

[Judee]

Yeah, I've only used Lithium one time/one dose after getting a copy of Yasko's protocol when uploading my 23andme to her app. It didn't make me feel well so I stopped it right away.

Anyway the link Nanonug gave said that:

Other causes of acquired NDI include: low blood potassium, post-obstructive polyuria, sickle cell disease/trait, amyloidosis, Sjogren syndrome, renal cystic disease, Bartter syndrome, and various medications...

I have tested negative to Sjogren syndrome but some of those website forums say that about 60% of the cases are diagnosed by other tests like lip and salivary gland biopsies because the blood tests return a lot of false negatives. I am beginning to suspect I may have that.

I thank you for your input though. I do feel better when I drink the electrolytes. If I miss them for a day or two my bladder pain becomes unbearable.

Were you diagnosed by an endocrinologist or a nephrologist?