nikigrl8883 Posted November 22, 2006 Report Share Posted November 22, 2006 well i went back to the hormone doctor today for the lab results and my prolactin level went from 60 to 16 which is good becasue it was too high and i do have an abnormallity on my pituitary gland but nothing they do anything about beside give me those pills for the prolactin,, supposidly it wouldnt casue all these problems i have... all my other tests were normal but i havent had a test for cushings disease so now i have to have that and go for blood work again in a few days //she was quite worried about me she did that test that the neurolgists do as well where the doctor has you hold up both arms and tells you not to let them push them down and i couldnt hold them up at all i was very weak on my legs too...she was like you wernt that weak before you were strong now your very weak ,, and ive been eating better than i was before and taking vitamins so its not becasue of that...she was like if this is normal( the lab tests ) then thats all i can do as far as it being connected to hormones... im so depressed before i could do that neuro test fine i mean ive had this since april and up until sept i could do all those tests fine now i can barley stand up im so weak and my arms are too , thats not a good sign last time i checked...i am also going to my heart doctor in dec and im gonna have him do another echocardiogram to ease my mind after that "dream" especially since im getting weaker... im very worried again ...the doctor seemed very worried too.. what do you think about all this Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 22, 2006 Report Share Posted November 22, 2006 Glad you are getting taken seriously by your doctors. Have you been actually diagnosed with POTS--I am sorry I can't remember. What medications are you using, if any? Have you seen an electrophysiologist?Many of us took a downward spiral until diagnosis and treatment began. I grew weaker and weaker over a very short period of time--weeks/months--while my doctors tried, or didn't try, to understand what was wrong. Sorry you are having such a rough time right now. If it gives you peace of mind, by all means, get in to see the cardiologist again. But in the meantime feel secure that the tests they performed indicated no structural or rhythm problems. Katherine Quote Link to comment Share on other sites More sharing options...
nikigrl8883 Posted November 22, 2006 Author Report Share Posted November 22, 2006 yes i have been diagnosed with pots in august. i forgot to add i had a low level of dhea a hormone that is important in the body when i looked it up i found out thats really bad for someone my age and can be casued by all kinds of things all bad / she didnt focus on that at all though but she mentioned it...i honestly think she didnt want to scare me she is gonna be testing me for cushings disease now an adreneal disorder... shes just doing it becasue im weak and tired and have put on weight and becasue i had an abnormality on my pituitary gland and an elevated prolactin level before at least that went down with the meds but thats not nearly as bad as it would be if i had cushing disease..... i am on atenonol and yasmin and bromocriptine for the prolactin thing Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 23, 2006 Report Share Posted November 23, 2006 Regarding DHEA--be skeptical about the sources of information you consult. I am not sure there is a standard measure for DHEA levels and I know there is a lot of hype about it.Are you salt and fluid-loading? If not can you talk to your doctor to see if it is ok to do that? That helps many POTS patients tremendously--low blood volume can make you very tired and weak. Also, have you tried compression stockings?Katherine Quote Link to comment Share on other sites More sharing options...
nikigrl8883 Posted November 23, 2006 Author Report Share Posted November 23, 2006 i havent tried the compression stockings yet i plan on it though... i have been drinking alot yes salt loading no...just regular salt amounts,, the reaason im holding off on that is becasue i want to make sure i dont have any type of heart problem before i do that becasue i know salt in excess is bad for people with a heart issue,,,,as far as the dhea level,, she just mentioned it was low becasue i asked her is i had my estrogen and testosterne tested she said no... she said it was"a little low" but didnt go into details i just figured if it being low was that bad she wouldve said stuff about it to me but of course she didnt....it wasnt until i looked up low dhea that i saw all the lovely things about it/ is it normal to be weak with pots i mean in exams ...? i wasnt weak like this is august this is new...thank you for replying to me Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 23, 2006 Report Share Posted November 23, 2006 If your doctor recommended salt loading, you may want to try it.You may want to ask your doctor more about DHEA. I would not rely on sources on the internet or elsewhere on this.YES weakness is a POTS symptom. I was so weak with POTS that eventually I could not stand up or even sit up, some days. Lifting anything was very hard. Some people with POTS describe actual muscle wasting--that never gets explained beyond POTS.There are many effective treatments out there for POTS--some combination is likely to help you improve--and most people DO get better with time.Hope you can enjoy thanksgiving. I know this is a hard time for you.Katherine Quote Link to comment Share on other sites More sharing options...
pickledfairy Posted November 23, 2006 Report Share Posted November 23, 2006 Just sending some positive thoughts to you nikkigirl. Hang in there, I know it is tough. I was actually sent to Mayo clinic for suspicion for Cushings or pheochromocytoma before I was diagnosed with autonomic neuropathy and POTS (also at Mayo), so I know it is scary, but there are treatments for both of those diagnoses so, please don't let yourself get too worried, if you're anything like me it will make your POTS symptoms worse! As for the Cushing's tests, I had bloodwork as well as three 24 hour urine tests to see how much cortisol is excreted... so be aware that you may need to do more than one test to rule that out. Good luck and try to be positive....believe me I know it is hard when you feel like you body is on strike! Sheridan Quote Link to comment Share on other sites More sharing options...
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