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Auto Immune Disease(hypothyroid) & Postural Tachycardia Syndrome

Posted by @donnaburch in About Kids & Teens, Oct 7, 2011

Hi, My daughter was diagnosed with hashimotos hypothyroid autoimmune disease when she 11 yrs old. Around the same time of her thyroid going completly crazy she was suffering dizzyness issues. They believed that once they got the thyroid under control with medication the dizzyness would become managable as well. Here we are 3yrs later still dizzy and finally have a name for it, they call it POTS for short but no answers as of yet on how to help her. Ran a slew of tests to only find her thyroid numbers are under control right now and her heart is fine. Right now we are giving he Meclozine at night when she goes to bed so that when she awakes the dizzyness is more managable. Anyone else out there dealing with this and what have they done to help you????

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Posted by @cg2009, Oct 8, 2011

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.


Posted by @donnaburch, Oct 12, 2011

We have been doing fluids for 3yrs now and still not much of a help, the only thing that has stopped the vomiting and helped the dizzyness is the Meclizine, and that only has to be used during cold season. Do you know of a Ped dr that specilizes in Pots and autoimmune her in Portland Oregon.... Because sadly her doctors have been no help it has been me doing all the research and bringing it to them.

Posted by Anonymous-7c4adcdd, Jul 2, 2012

Hi. I was diagnosed with POTS last year, although not through mayo clinic. I tried medication, didn't work.
Right now I'm not on any particular treatment. I try hard to live a healthy lifestyle and force myself to exercise. My symptoms are getting steadily better. (research indicates that most POTS patients improve steadily over time. I'm 18 and have been really sick for 3 years. I hope I'll continue to improve.)
One thing I noticed with myself that I haven't seen in any research or anywhere (!) is that my symptoms are terrible when I am in the presence of gas. Natural gas, oven gas, you name it. This is pretty weird because again, no one seems to have the same experience. I'm sharing this so that you can try it.
How did I realize this? My mother cooks heavily. At a certain point I realized that when she doesn't cook for a while, my symptoms improved considerably. Through trial and error, we realized its not the food but the gas. We (my parents and I) experimented with this idea and finally got rid of our gas oven after a year. (we now have an electric oven). It's really strange but I see a difference. When I travel or spend time near a gas station my symptoms flare up. Quickly. I see a direct correlation. My doctor has agreed that the only way to explain the facts is to say that I am sensitive to gas!!
Maybe I'm not alone?
Good luck with everything you try. It's not easy with POTS. Remember that most patients improve. If you notice your daughter has worse symptoms after traveling, give my idea a try.


Posted by @hs18, Jul 2, 2012

About the salt and water...perhaps because your daughter has a thyroid problem in addition to POTS, she'll need different treatment. Just a thought.


Posted by @zappit, Oct 8, 2011

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.


Posted by @donnaburch, Oct 12, 2011

sadly we are in the learning phase just like you with our daughter. at this point the only thing helping her is Meclizine and sadly her endrocronologist could not giver her extra advice. Would love to hear what you find out. I do know extra fluid helps her to and proper sleep too.

Posted by Anonymous-84dc09de, Feb 2, 2012

I am starting to grow out of my POTS but when I was going through the bad dizzyness I was told to drink alot and eat alot of salt. So I was just wondering if you have tried that?


Posted by @donnaburch, Apr 12, 2012

we are doing that. Pretzels are bought in bult, good old cosco, and she drinks as much as a teenager remembers to. Thats for the confirmation of the salt and fluid, and hope of a light at the end of the tunnel


Posted by @sdavisali, Feb 11, 2012

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!

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Posted by @donnaburch, Apr 12, 2012

Hi Susan, sorry the delay in response. How did everything go for your daughter at the Mayo appointment?
I agree with you about the whole when they feel tired and awful not walting to exercise. Heck, just getting up to go to school is a work out. 🙂
Best of luck to you

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