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Hypothyroid & Postural Tachycardia Syndrome
Autoimmune Diseases | Last Active: May 4, 2023 | Replies (34)Comment receiving replies
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.
Replies to "there are MANY more meds than meclizine for POTS. She needs to drink lots of fluids..."
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.
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.
Unfortunately because she has Hashimotos autoimmune thyroid disease she has to be very careful about her salt intake levels, so she cannot increase salt, and Gatorade and other drinks have a lot of sodium. I have Hashimoto's going on 30 years now. And POTS diagnosed about a year ago. My 15 year old has POTS and checking to see about thyroid disease. She has been taking Florenif for about 6 months, it is a steroid, but it has helped her symptoms that were really bad improve by 90%. But because your daughter has an autoimmune form of thyroid illness, it's a tricky situation. There are I believe 3 types of POTS, a sodium retailing salt problem, and endocrine relating cortisol levels, and I cannot remember the 3rd one. Because she has Hashimotos autoimmune thyroid, I would absolutely try and work with an endocrinologist, a neurologist, and especially a doctor who specializes in autoimmune illness. To find the root cause of her POTS because she has other underlying health conditions like I do. Florenif steroid helped but long term it isnt safe and it suppresses immune system and thyroid hormone regulations so it wasnt something I could continue.
They then put me on proponalol which is a beta blocker and helps regulate heart rate and blood pressure, I unfortunately am chemical sensitive so it made me feel horrible. Because it lowered my heart rate and blood pressure dangerously low, but my Hashimoto's played a part in that as well. Can I ask does your daughter take levothyroxine, or armour thyroid. The pharma synthetic levothyroxine was horrible for me and it doesnt contain the much needed t3 shd t4 for optimal thyroid health , it made POTS symptoms worse, caused headaches, teeth grinding, stomach aches
Etc. Horrible for me and I now take armour thyroid and It absolutely works better. You need a team because your daughter deserves relief. Our unfortunate overlapping illnesses are difficult to manage for sure. This site has been a lifesaver to fight for proper and accurate care, resources and what tests should be done for optimal health. Because again there are different reasons for POTS. Check out Stop the thyroid madness for fantastic information.
SENDING LUV AND LIGHT.❤
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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.