I recently had another blood test which shows that even though I'm on desmopressin (hormone), my pituitary doesn't seem to recognize it because my body still is not retaining fluid.
This answered my question about why I was so dehydrated, because I'm peeing all my fluid out as soon as I drink it.
It also answers the question why I have lost weight and can't seem to gain weight no matter what I do.
My endocrinologist sent me to Mayo last year for a similar reason and they said I didn't need the hormone that I didn't have diabetes insipidus but they didn't diagnose me either. Instead they sent me all over Mayo Clinic (Neurologist, psychologist, GI specialist, hemotologist, and rheumatologist) and came up with zilch!
It was a complete waste of my time. I want to find out why my pituitary isn't doing what it's supposed to be, but don't want to drive all the way to Mayo and waste my time again.
I'm very nervous because the lab results showed that my pituitary isn't even making detectable levels of ADH and this can cause major problems for my kidneys, as well as an imbalance of all my hormones.
The weird thing is that I am also clinically hypothyroid, even though I am as skinny as a rail.
I don't know what to do.
Posted by Lymetoo (Member # 743) on :
Have you done research to see which hospital is the expert on this type of problem??
Mayo generally sucks for most things, if you ask me.
You are in serious need of help though, that is for sure.
Posted by Catgirl (Member # 31149) on :
Have you had a brain mri lately?
Posted by poppy (Member # 5355) on :
Here is a place to do a search. These people were selected by their peers, so that might raise a question in a skeptical mind.
I would never see a non-LL endocrinologist (even if something other than lyme, lyme affects the entire endocrine system in a very complex way).
Borrelia is classic for clobbering the HPA axis (Hypothalamus - Pituitary - Adrenal triangle of sorts) regarding organ function AND communication among the individuals in the trio, so to speak.
I would not do anything until consulting your LLMD who, hopefully and if needed, could put you in touch with an ILADS-educated LL endocrinologist.
Be sure to Sarah Myhill's links first. -
Posted by betty1939 (Member # 18240) on :
My LLMD told me to consult with my endocrinologist. He is in a different state, so I did. I have another appointment with my LLMD on the 14th, but before that I plan to fax him the results of this lab test.
I live in a state where there are maybe one or two LLMD's, so I'll have to see if they work with any endocrinologist. I'm sure I'm not going back to Mayo. It was a waste of my time before, so I don't thik I have time to waste now.
I feel like a dried up raisin.
Posted by MichaelTampa (Member # 24868) on :
In lyme a frequent problem is lack of anti-diuretic hormone (ADH). There may be a blood test to confirm whether that is going on in your case. BioPure Europe actually has a homeopathic to help your body start making more of it. You might give that a try.