Postural Orthostatic Tachycardia Syndrome--Purple Toes

steare@houston.rr.com · Guest

my daughter has purple toes.....as if she has poor circulation.
The doctor just mentioned to me that she might have "[b][b]postural orthstatic [/b]tachycardia syndrome" otherwise known as POTS disease. Is anyone familiar with this term and what it means.
My daughter is 16 and no tests were performed by the doctor....Her feet are just purple (mostly the toes) they are purple alot of the time.
Please let me know if anyone has heard of this and if further tests should be done. My father and grandfather both had legs amputated late in life due to poor cirulation and blood clots.
Thank you[/b]

Heather_2 · Silver Member Joined: 27 Mar 2006 Posts: 279

It was very irresponsible from this doctor just to mention something like postural orthstatic tachycardia syndrome and not give you any explanation and not sign your daughter for further testing.

People who suffer from POTS disease usually have problems with fast heart beat when standing and experience symptoms like lightheadedness, fatigue, headaches, exercise intolerance, mental clouding and low blood volume. When treating this condition, the goal is to correct the problem of abnormally decreased levels of body’s blood and controlling this problem may help get rid of other symptoms.
To diagnose POTS, your daughter will probably have to see a number of different doctors like cardiologist, a neurologist, or an endocrinologist and have electrocardiogram to rule out any heart problems or any other underlying diseases that could have been causing such symptoms.

Now, if your daughter’s blue feet are her only symptom, it may be that she may “just” be suffering from circulatory problems or “venus stasis”-the blue feet.

Feet appear blue when the blood is accumulating in the feet due to poor circulation and are not returning to the lungs and heart to take the new oxygen. I am sure you already know how this works considering both your father and grandfather had severe problems and you may also know that this poor circulation could lead to more severe problems like blot clots formation.

Besides legs pain she might be experiencing, blot clots may be dangerous as they may travel up to the lung causing pulmonary embolisms and even lead to death if the clot should block the pulmonary artery that leads to the heart.

Now, I reckon you need to find a doctor who is serious enough to determine your daughter’s problem.

Guest · Guest

Is the doctor going to run tests to see if she does have POTS? Does she have the high heart rate and get dizzy when she stands? If not it might be a circulatory thing.. Does the purple area fell cold to the touch or does she say anything about her feet being cold or hurt? Does she have anyother symptoms that may be associated w/ POTS? Does diabetes or anykind of endocrine disorder run in your family?

Guest · Guest

i'm 17 years old and have a condition called raynauds phenomenon it caused by poor circulation. it caused the hands and feet to turn purple and even white sometimes.
Also, did your doctor do a "tilt table test" and did she fail?

tilt table testing is the best test you can do to determine whether or not she has POTS or not

Guest · Guest

I sugest you immediately find a different doctor for your doctor who is a little more considerate tp your concerns. I was diagnosed with POTS 4 years ago and it was a difficult diagnosis to reach. I had to see many different doctors , such as a neuroligist a cardiologist, an endocrinologist even a gastroenterologist because of the weight concerns and stomach upset it can cause. Ultimately i passsed out in front of my cardiologist, and she ran a tilt table which i failed and that is how iwas diagnosed. I sincerely hope your daughter can get a good doctor willing to look into her problem and hope POTS is not her answer. GOOD LUCK! If you would care to ask me any questions you can e-mail me at ****

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Guest · Guest

I also have purple toes and have tried for several years to get an answer to my problem. I thought it was POTS, but recently I have had red, tender, almost blister like spots left behind after a purple toe period, does anyone else with POTS have that?

Guest · Guest

Regarding the last post, maybe I can help -- I have struggled with severe Raynauds for years and bad circulation with painful bumps on hands/feet. Just last year, I was diagnosed with Chilblains Lupus, which manifests itself in clusters of very painful nodules/lesions on the toes and fingers. Plaquenil has helped me with this problem -- a biopsy was required for eventual diagnosis. Rhuematologist and Dematologist worked together on this problem. Good luck and all the best!

Guest · Guest

I am 57, I have purple toes, & hands. My Dr. had a blood circulation test done on my legs, and that was ok. So, he said that it was probably just raynauds. My feet do hurt, and my hands, and I get those blisters on my toes, too. He told me that I had to live with it. Should I have more test done?

Guest · Guest

wow. all that was way more helpful than my doctor. i am 16, and my feet turn purple and are always ice cold. When ever I stand up I feel dizzy and short of breath, i get headaches all the time, like on a daily basis. my symptoms sound just like heather 2 listed. thanks all Smile

Guest · Guest

Im only 16 and I also have the purple toes, and the blisters too.
I went to my family docter and he told me I had dyshidrotic eczema, but that does not have anything to do with the purple toes...

All 10 of my toes will turn dark purple when they get hot quickly or become cold. My docter did do a little circulation test by putting his finger against a vein in my foot, and said my circulation was fine...

But why do my toes turn so purple all the time?
I have had 3 people in the past 2 days make comments about them,
and its quite embarrassing for me...

I want a diagnosis.

Postural Orthostatic Tachycardia Syndrome--Purple Toes

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