Hypothyroid & Postural Tachycardia Syndrome

Posted by donnaburch @donnaburch, 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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Colleen Young, Connect Director | @colleenyoung | Jan 1, 2021

In reply to @fighter "The physician that coined the term POTS, I believe, is at Mayo Clinic in Rochester." + (show)

You're right @fighter. Dr. Phillip Low, a Mayo Clinic neurologist, is the physician who coined the term, “POTS”

In this video interview, Dr. Low describes the early days of the development of autonomic medicine and summarizes key findings about POTS in recent years. https://thedysautonomiaproject.org/history-of-pots-with-phillip-low-md/

walker32 | @walker32 | Mar 23, 2023

In reply to @mwaswick "I am starting to grow out of my POTS but when I was going through the..." + (show)

Hello! I do have Hashimoto's and my symptoms didnt come on until i was overmedicated on thyroid meds and i have had it ever since so maybe it could be hormones for me, but how old were you when your symptoms started and how old are you now that you are growing out of it? If you dont mind me asking

plk | @plk | Mar 24, 2023

I was diagnosed with Hashimoto’s hypothyroidism in January, 2022. That spring I developed episodes that have led to me being evaluated for dysautonomia-like symptoms.Still having tests done so no definitive answers yet.

blackwood333 | @blackwood333 | May 4, 2023

In reply to @cg2009 "there are MANY more meds than meclizine for POTS. She needs to drink lots of fluids..." + (show)

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.❤

aubsmom | @aubsmom | May 2 8:25am

I just recently came across your post.
My daughter also has POTS and Hashimoto’s thyroiditis . I have found it very difficult to figure out what I should and should not avoid. Some of the foods recommended for POTS are foods that individuals with Hashimoto’s Thyroiditis are told to avoid. Example Soy, wheat (pretzels) & dairy, nuts, & beans .
My daughter only drinks sugar free oat milk & water.
Have you figured out a diet that works?

lkirnbauer | @lkirnbauer | May 3 7:46am

I have Hashimoto’s/Hypothyroidism and I too feel off balance, not dizzy per se. I have worked with a Functional Medicine doctor who asked me to try an electrolyte powder called LMNT and when I drink that, I do feel better. It has a lot of sodium in it, but also has magnesium (60 mg) and potassium (200 mg). Check with her doctor about her possibly drinking some, maybe split the package in half as the sodium in 1 packet is 1000 mg. I was told my whole life by my mother not to eat a lot of salt, but interestingly enough, my body craves it! Good luck and good health to your daughter!

Becky, Volunteer Mentor | @becsbuddy | May 3 6:44pm

In reply to @aubsmom "I just recently came across your post. My daughter also has POTS and Hashimoto’s thyroiditis ...." + (show)

@aubsmom You may want to ask her doctor for a referral to a registered dietician (not a nutritionist). The dietician should be able to help you come up with a diet and menus.
Do you think your daughter would be willing to go along to the dietician?