Auto Immune Disease(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????

Liked by cg2009

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.

REPLY

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.

REPLY
@zappit

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.

Jump to this post

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.

REPLY
@cg2009

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.

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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.

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@zappit

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.

Jump to this post

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?

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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!

Liked by sjbriscoe92

REPLY
@sdavisali

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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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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@zappit

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.

Jump to this post

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

REPLY
@cg2009

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.

Jump to this post

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.

REPLY
@cg2009

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.

Jump to this post

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.

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Hi Donna. I appreciate this was written 6 years ago. Like you i have a daughter with hashimotos … diagnosed first and shortly after pots syndrome which appears to have come secondary after she started on the levo and had a growth spurt. 4 years on and she is worse with everyday being a struggle. She is unable to work or study and i have had to stop work as her symptims are so bad. All consultants tell her she is too complex and do not communicate amoungst each other. I live in the uk so health care upto now is free but we are starting private to ensure nithing has been missed. I wonder if you can tell me if your daughter has shown any signs of improvement. Increasing fluids etc just do not work for her and the pressurw in her head can be too much to handle if she does this. Kind regards

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Hi Marcelle,
So much has happened since this post for my daughter we are now dealing with ITP, EDS along with the POTS snd thyroid. As for the pain we tried all pain meds and none worked. We do have imitrex when the migraines are real bad, but we ate lucky enough to live in a state where marijuana use is legal so I got Sophia a medical card for CBD oil. It is the only thing that help with the pain. As for pots all we can continue to do is fluids and salt but sadly nothing is teally helping and Sophia cant work either; were trying to get disability for her now. This autoimmune disease is horrible. I joined dysautonomia international to try and spread the word to help our kids more. Best of luck to you and your dsughter
Donna

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@donnaburch

Hi Marcelle,
So much has happened since this post for my daughter we are now dealing with ITP, EDS along with the POTS snd thyroid. As for the pain we tried all pain meds and none worked. We do have imitrex when the migraines are real bad, but we ate lucky enough to live in a state where marijuana use is legal so I got Sophia a medical card for CBD oil. It is the only thing that help with the pain. As for pots all we can continue to do is fluids and salt but sadly nothing is teally helping and Sophia cant work either; were trying to get disability for her now. This autoimmune disease is horrible. I joined dysautonomia international to try and spread the word to help our kids more. Best of luck to you and your dsughter
Donna

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Hi Donna.
Thank you so much for responding. I really appreciate it. Sorry to hear that Sophia has learnt of additional autoimmune disorders. As you say these disorders are very cruel and life changing. Thank you for sharing the cbd oil information. I had not even considered it and after some reasearch it has recently been legalised in the uk so could be a line of enquiry for Shannon if all else fails. Shannon also has eds and as time goes on she struggles with more chemical sensitivities etc. I am hoping to get her natural dessicated thyroid. Have to keep trying along with finding some days when we forget about it as much as possible and do things that make us laugh. Hopefully your daughter has kept some friends. Sadly Shannon has lost all of hers as they just cannoy seem to find it in themselves to give her small chunks of time in a quiet setting rather than a noisy nightclub. Once again many thanks and if we find something which may help through our medical.support in the uk i would be happy to share it with you.
Best wishes
Marcelle

REPLY

Hi @donnaburch,

I’m thrilled to see that you’ve returned to Connect! Welcome back! Thank you so much for sharing and updating us about your daughter in your response.

I can only imagine that both you and @marcelle have had a rough journey of appointments and few answers for your daughters. I thought you might also like to read through these discussions on Connect:
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/
– Autonomic Dysfunction https://connect.mayoclinic.org/discussion/autonomic-dysfunction/

I’d like to ask our Mentor @kariulrich, who has POTS, EDS and MALS, and also fellow member @worriedmom18, whose daughter has the same conditions, if they have any thoughts or more insights to share?

@marcelle, @donnaburch, other than continuing to research, what have the doctors suggested as the next steps?

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@kanaazpereira

Hi @donnaburch,

I’m thrilled to see that you’ve returned to Connect! Welcome back! Thank you so much for sharing and updating us about your daughter in your response.

I can only imagine that both you and @marcelle have had a rough journey of appointments and few answers for your daughters. I thought you might also like to read through these discussions on Connect:
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/
– Autonomic Dysfunction https://connect.mayoclinic.org/discussion/autonomic-dysfunction/

I’d like to ask our Mentor @kariulrich, who has POTS, EDS and MALS, and also fellow member @worriedmom18, whose daughter has the same conditions, if they have any thoughts or more insights to share?

@marcelle, @donnaburch, other than continuing to research, what have the doctors suggested as the next steps?

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Hi.
Nice to hear from you. Sadly medical support from my daughter is still very muddled.
She saw a private neurologist who reports she has damage to her autonomic nervous system as she had insufficent thyroid hormones between the age of 5 to 17 years which was discovered at 17 years. My daughter responded badly to levo and had a growth spurt like you would not believe and developed pots.
She has head pain amd flare ups daily. She was advised to go on to toprimate which has many devasting side effects. She will be trialing low dose naltrexone which has very minimal side effects and has evidence that is supports all her conditions of hashimotos, chronic fatique, pots and allergies. The prescription should be with us in 3 weeks.i am happy to report the outcome.
In addition i have taken legal action to get one of.her consultants to take responsibility and place a care plan on the emergency room file for her to have iv fluids and oxygen on the worst flare ups. 3 years on and the A&E wont do this with out a consultant input and none will do it stating another consultant should do it. She physically can not drink when in a flare up as it adds to it.
But despite suffering daily she makes me laugh everyday. take care all of those who are sufferers and those who have big hearts and are supporting those who are suffering.
Marcelle

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