Hypothyroid & Postural Tachycardia Syndrome

I just joined this site. I don't know how to add friends yet. I am an adult who has been recently been diagnosed with POTS. I also have hypothyroid. I am giong to my initial appointment on Monday with internal medicine. Do you have any advice for what specialities deal with this. I have worked with cardiology and pulmonary in the twin cities because my oxygen saturations frequently drops into the 80's. Have you experienced this?
I did not know about the dehydration link. Ihave been eating more carbs and eating more often. I learned that sinc when I am sitting or standingi am in my "target heart rate zone" (fat burning) when I walk or do any activity driving or walking etc, my HR is is beyond fat burn and just burns up carbs. I feel much better if I eat more often.
Do you have any advice? As you know, it is difficult to understand for our family and friends so it feels good to find others who relate.

there are MANY more meds than meclizine for POTS. She needs to drink lots of fluids and eat lots of salt to increase her blood volume. There is a med called florinef which can help the body retain salt and fluids. I drink pedialyte and gatoraid or poweraid for the electrolytes. POTS patients are chronically dehydrated and must keep up with their fluids. Compression hose and abdominal binders help keep blood from pooling in the legs and help the blood flow upwards to the brain when standing. I have purchased a BP monitor with pulse to keep track of my status and make adjustments. Also a heart rate watch, available in the sporting goods departments, can help you know how high your heart rate is during the day's activities. Sometimes, when symptoms are severe, going to the ER for IV fluids can make a huge difference. There are lots of meds prescribed to treat all the symptoms of POTS. Most patients can get a better quality of life with treatment. Your daughter needs to see the pediatric neurologist at Mayo Clinic Rochester that specializes in POTS and dysautonomias in kids and teens. I think it is Dr. Philip Low. There are several other ped cardiologists and ped neurologists that specialize in POTS, like Dr. Blair Grubb in Toledo, Ohio and Dr. Julian Stewart at NY medical college. I have been dealing with POTS and such since my teenage years and I know she is having a hard time. Some kids grow out of it, some like myself, do not. But it is a manageable condition, you still have to live with it, but the quality of life can definitely be improved. Best wishes for you and your daughter.

I just joined this site. I don't know how to add friends yet. I am an adult who has been recently been diagnosed with POTS. I also have hypothyroid. I am giong to my initial appointment on Monday with internal medicine. Do you have any advice for what specialities deal with this. I have worked with cardiology and pulmonary in the twin cities because my oxygen saturations frequently drops into the 80's. Have you experienced this?
I did not know about the dehydration link. Ihave been eating more carbs and eating more often. I learned that sinc when I am sitting or standingi am in my "target heart rate zone" (fat burning) when I walk or do any activity driving or walking etc, my HR is is beyond fat burn and just burns up carbs. I feel much better if I eat more often.
Do you have any advice? As you know, it is difficult to understand for our family and friends so it feels good to find others who relate.

Hi Donna, my name is Susan and my 13 year old daughter has Autonomic Dysfunction very similar to POTS. It is a nightmare of a disease as you well know. We are going to Mayo this week for a 3 week intensive program geared to help teens with her condition. She is on a beta blocker to protect her heart, but other than that it is heavy salt intake, tons of fluids and regular exercise (treadmill 6 days a week for 30 mins). Of course, what 13 year old who feels awful can live up to that routine? Thus the cycle of missing school and lots of tears continue at our household. Wish I could be more helpful, but I do offer my emotional support!

I just joined this site. I don't know how to add friends yet. I am an adult who has been recently been diagnosed with POTS. I also have hypothyroid. I am giong to my initial appointment on Monday with internal medicine. Do you have any advice for what specialities deal with this. I have worked with cardiology and pulmonary in the twin cities because my oxygen saturations frequently drops into the 80's. Have you experienced this?
I did not know about the dehydration link. Ihave been eating more carbs and eating more often. I learned that sinc when I am sitting or standingi am in my "target heart rate zone" (fat burning) when I walk or do any activity driving or walking etc, my HR is is beyond fat burn and just burns up carbs. I feel much better if I eat more often.
Do you have any advice? As you know, it is difficult to understand for our family and friends so it feels good to find others who relate.

there are MANY more meds than meclizine for POTS. She needs to drink lots of fluids and eat lots of salt to increase her blood volume. There is a med called florinef which can help the body retain salt and fluids. I drink pedialyte and gatoraid or poweraid for the electrolytes. POTS patients are chronically dehydrated and must keep up with their fluids. Compression hose and abdominal binders help keep blood from pooling in the legs and help the blood flow upwards to the brain when standing. I have purchased a BP monitor with pulse to keep track of my status and make adjustments. Also a heart rate watch, available in the sporting goods departments, can help you know how high your heart rate is during the day's activities. Sometimes, when symptoms are severe, going to the ER for IV fluids can make a huge difference. There are lots of meds prescribed to treat all the symptoms of POTS. Most patients can get a better quality of life with treatment. Your daughter needs to see the pediatric neurologist at Mayo Clinic Rochester that specializes in POTS and dysautonomias in kids and teens. I think it is Dr. Philip Low. There are several other ped cardiologists and ped neurologists that specialize in POTS, like Dr. Blair Grubb in Toledo, Ohio and Dr. Julian Stewart at NY medical college. I have been dealing with POTS and such since my teenage years and I know she is having a hard time. Some kids grow out of it, some like myself, do not. But it is a manageable condition, you still have to live with it, but the quality of life can definitely be improved. Best wishes for you and your daughter.

there are MANY more meds than meclizine for POTS. She needs to drink lots of fluids and eat lots of salt to increase her blood volume. There is a med called florinef which can help the body retain salt and fluids. I drink pedialyte and gatoraid or poweraid for the electrolytes. POTS patients are chronically dehydrated and must keep up with their fluids. Compression hose and abdominal binders help keep blood from pooling in the legs and help the blood flow upwards to the brain when standing. I have purchased a BP monitor with pulse to keep track of my status and make adjustments. Also a heart rate watch, available in the sporting goods departments, can help you know how high your heart rate is during the day's activities. Sometimes, when symptoms are severe, going to the ER for IV fluids can make a huge difference. There are lots of meds prescribed to treat all the symptoms of POTS. Most patients can get a better quality of life with treatment. Your daughter needs to see the pediatric neurologist at Mayo Clinic Rochester that specializes in POTS and dysautonomias in kids and teens. I think it is Dr. Philip Low. There are several other ped cardiologists and ped neurologists that specialize in POTS, like Dr. Blair Grubb in Toledo, Ohio and Dr. Julian Stewart at NY medical college. I have been dealing with POTS and such since my teenage years and I know she is having a hard time. Some kids grow out of it, some like myself, do not. But it is a manageable condition, you still have to live with it, but the quality of life can definitely be improved. Best wishes for you and your daughter.