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About heiseygirl

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  1. After being sick with pots for 10 years I am considered in remission. I am not back to where I was but so much better. It came when I changed my thyroid med from synthroid to armour thyroid. I begged Drs for years to let me change my med but none would. Will not even get into how i got the other med but to say I had to go to Great Britian for it. My question is. Is this remission temporary or permanent. Steph
  2. i also have angina sometimes so bad I can't hardly take it. My cardiologist can't figure out why neither as all my tests look normal. Would love to get an answer.
  3. Has anyone tried Royal Maca an herb and if so did it help. I have Pots underactive thyroid and i had a complete hysterectomy at 32 because of multiple cysts and very heavy bleeding which we have come to know came from the blood disorder Von Wilebrands. I always do better on vitamins herbs and natural help than meds.
  4. Does anyone have trouble with falling and dropping things? I am doing both alot lately. When I first get up it looks like I have been drinking alcohol. I have had pots and nero cardogenic syncopy since summer of 2001 although I have only been fully diagonosed with this about 2 years ago.
  5. i have had pots since 2001 which wasnt diagnosed totally till last year i have low serotonin and i have Von wilebrands a blood problem where my blood doesn't clot properly. I also have alot of trouble with blood pooling. Ironically when having any type of surgery i need a special iv of ddavp to helpwith my bleeding problem
  6. i just had a bunch of blood tests for my pots to try and find an underlying cause. My albumun was high also but the dr didnt seem concerned.
  7. when i first got sick in 2001 the specialist at hershey med said i t was my thyroid. took me off my meds put me back on a lower dose and then said you are okay which i was not. A couple of years later out of frustration i quit my synthyroid and did really well for over a year. Then my numbers got high and i went back on synthroid again. this june i crashed and have not come around completely yet. I am now taking iodine and a thyroid adrenal complex supplement and feeling better than I have for years. Have an appointment with Dr. Khrunna on the 17th. none of my drs would give me other thyroid meds but this combo seems to help. keeping my fingers crossed.
  8. i always have trouble after i eat. Shortness of breath palpatations. Also extreme tiredness.
  9. having alot of blood and urine tests done to find out what the underlying cause to my pots is. What do high cortisol counts mean have any of you been tested for lyme disease
  10. Bella Mia when were you tested for Von Wilebrands? I was tested about 4-5 years ago by my hematologist and it came back that I have it. The interesting thing about Von Wilebrands is that I need to have an iv of ddavp when ever I have a procedure done. I would check into getting tested again as there was no problem finding out that I had it.
  11. i always had trouble with my periods started in 6th grade bled so bad my mom had to call the dr. I do have a bleeding disorder Von Wilebrands similar to hemophilac. Always had very bad cramps. Had my 1st daughter at 19. Had a cyst on my ovary removed @ age 25. Grew back to the size of a grapefruit with in a year. Had that ovary removed. Within 6 months i was pregnant with twins. A boy and a girl with one ovary. 4 years later had to have a complete hysterectomy at age 32. My blood count went down to 6.My other ovary was covered in cysts. We only found out about the bleeding disorder during hospitalization the 2 nd time from what we know now is pots. Knowing this might have saved me a lot of problems. My periods were extremely painfull also and i had a lot of clotting.
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