deucykub Posted May 5, 2007 Report Share Posted May 5, 2007 Hi everyone.I've posted about this a couple of times now, but this is driving me nuts. I'm not worried, but I'd really like to figure out the cause.Several parts of me turn blue - my feet and legs (blood pooling from POTS), my fingers and nails (seems to be two phenomena - one blood pooling, the other unknown), my lips and breasts (completely unknown).These are the things I have either tested negative for or have been clinically excluded: Raynaud's Phenomenon, Anemia, all testable autoimmune diseases, cardiac septal defects, restrictive and obstructive lung diseases (with the exception of asthma), and pulmonary hypertension.Here are the abnormalities: POTS, Mild Aortic Insufficiency, Asthma, some lung scarring, Compensated Respiratory Alkalosis, Low-ish Diffusion Rate/DLCO (70%/78%adjusted when symptomatic; 87% when not symptomatic), positive ANA (1:160 titer), and "tend to lose the signal" during pulse-ox (100% down to 96% during seated testing down to 92% during 300 ft walk).My lips get more blue on exertion and when I laugh. Some doctors say it could be POTS, but they won't explain the mechanism. I can't get a straight answer on hypovolemia. Other doctors shrug their shoulders with a concerned look except for my Pulmonologist who thought my shortness of breath was psychological. Then there's my uncle, a practitioner (Nursing PhD), who simply says, "POTS doesn't make your lips turn blue."Do you have any thoughts? Do you have this symptom, and if so, did your doctors figure it out?Thanks for any input you might have!All my best! Quote Link to comment Share on other sites More sharing options...
persephone Posted May 5, 2007 Report Share Posted May 5, 2007 Hello! I get this but no one has any idea why! I think people have just said it happens when my bp is low. It can happen whenI feel wired too. Quote Link to comment Share on other sites More sharing options...
pat57 Posted May 5, 2007 Report Share Posted May 5, 2007 http://www.wrongdiagnosis.com/sym/blue_lips.htma list there Quote Link to comment Share on other sites More sharing options...
deucykub Posted May 5, 2007 Author Report Share Posted May 5, 2007 Thanks for the link, Pat. That's part of why I am so puzzled by this. It seems that everything has been ruled out!Persephone, did any of your doctors tell you why or how low blood pressure would cause blue lips? I've heard this theory in passing, too, but I can't find anything online that directly relates the two. The closest I can find is low blood pressure due to hypovolemia might cause it? The odd thing is since having POTS my blood pressure has been higher (around 100/70), but I wasn't blue before when blood pressure was lower, between 60/40 - 80/60. Quote Link to comment Share on other sites More sharing options...
pat57 Posted May 5, 2007 Report Share Posted May 5, 2007 did you click on the list of 34 conditions?The following medical conditions are some of the possible causes of Blue lips. There are likely to be other possible causes, so ask your doctor about your symptoms. * Cold weather * Low body temperature * Cyanosis * Inadequate oxygen circulation * Smoking * Anemia * Iron deficiency anemia * Certain circulatory disorders * Certain heart disorders o Congenital heart disorders * Certain lung disorders o Asthma o Bronchitis o Chronic bronchitis o Pneumonia o Emphysema o Pulmonary thrombosis o Pulmonary embolism o Pulmonary edema o Airway foreign body o Fibrosing alveolitis o Pneumoconiosis o Extrinsic allergic alveolitis * Coughing * Croup * Fume inhalation * Laryngeal edema * Shock * See also blueness and cyanosis [see full list of 34 causes of Blue lips]- (Source - WD writers)Review Symptoms of Each Cause of Blue lipsâ–²TopBlue lips and other symptomsThe cause of Blue lips may be more easily identified if other symptoms exist. Listed below are some combinations of symptoms associated with Blue lips, as listed in our database. When you follow a link to our interactive multiple symptoms page, you will be able to modify your list by adding and removing symptoms thus helping to better research your condition.Interactive Multiple Symptom Page - Other Symptoms * Blue lips and other symptomsInteractive Multiple Symptom Page Combinations * Blue lips and Psychotic Behaviour * Blue lips and Vein symptoms * Blue lips and Orthopnea * Blue lips and Premature aging * Blue lips and Hospital acquired fever * Blue lips and Calf coldness * Blue lips and Numbness * Blue lips and Pleural rub * Blue lips and Absenteeism * Blue lips and Knuckle coldness * Blue lips and Heart symptoms * Blue lips and Exercise symptoms * Blue lips and Spasms * Blue lips and Stridor * Blue lips and Breast coldness * Blue lips and Eosinophilia * Blue lips and Menstrual irregularities * Blue lips and Blue tongue * Blue lips and Lip pain * Blue lips and Cold feet See full list of 327 symptom search combinations related to Blue lips Quote Link to comment Share on other sites More sharing options...
flop Posted May 5, 2007 Report Share Posted May 5, 2007 Please note this is not known - just me theorising....The body can adjust the distribution of blood flow by dilating or constricting blood vessels (I know POTS patients can't constrict their leg blood vessels properly). In healthy people when you are hot the vessels near the skin dilate to take more warm blood to the surface to facilitate heat loss. When you are cold the blood supply to the skin is much reduced to avoid heat loss and maintain the temperature of the vital organs - this can result in your extremities - fingers, toes, ears, nose etc going blue. The blue colour is because blood becomes deoxygenated the longer it is in the peripheries (oxygenated blood is bright red, deoxygenated blood is much darker). The body can reduce blood flow to the extremities even if you aren't cold. For instance when you are upright and symptomatic your body will be trying to direct blood to your brain to keep you conscious. Perhaps if it can't stop blood pooling in the legs it tries to compensate but shutting down the blood flow to fingers etc to increase the blood pressure and make more blood available to the brain. When exerting yourself you need blood flow to the muscles so that increases the body's need for blood and also triggers shutting off flow to the extremities.Like I said this is just me postulating, if anyone has any other theories or can see flaws in my thinking please add your comments.When your lips are blue what colour is your tongue?Flop Quote Link to comment Share on other sites More sharing options...
deucykub Posted May 5, 2007 Author Report Share Posted May 5, 2007 Hi, Pat. I did look at everything on that site during my seemingly endless research. Thank you, though! Hi, Flop. Thanks so much for your theorizing! I think you're on the right track. My hands seem to have blood pooling, too, so it's possible there is a constriction problem there in addition to the lower extremeties. That's actually one sign that helped my doctor diagnose POTS. He was examining my hand, and I said, but watch, if I lift my hand and arm up, the purple-ness goes away. And he said, but that's counter-intuitive; it's more likely to be blue when the hand is up! Is it possible that if there are additional venous constriction issues that the body triggers the next level of peripheral constriction to maximize central blood flow?Is there a hierarchy of constriction? For example, legs, then hands, then lips as the body compensates?My tongue is typically pink; although maybe two days ago, it was bluish on the top with pink only around the edges. They did an arterial blood gas back in October, and that didn't show central cyanosis... Quote Link to comment Share on other sites More sharing options...
yogini Posted May 5, 2007 Report Share Posted May 5, 2007 Usually when my legs turn blue from pooling, it's like a dark purplish blue because too much blood is collecting in them. I've occasionaly had fingers turn a more bluish blue because they aren't getting enough blood. This is what I'm envisioning is happening to your lips? In the case of the bluish blue, it is likely due to a lack of oxygen. I'm not familiar with most of your medical conditions, but POTS or asthma could certainly be contributing to the lack of oxygen. Are you otherwise feeling fine when this symptom is happening? Does lying down help the symptom? Quote Link to comment Share on other sites More sharing options...
flop Posted May 5, 2007 Report Share Posted May 5, 2007 Hi Deucykub, I think we're both thinking along the same lines. I was wondering about central cyanosis when I asked about your tongue colour - it is good to hear that you have had a normal blood gas reading.Has anyone else got any theories?Flop Quote Link to comment Share on other sites More sharing options...
deucykub Posted May 5, 2007 Author Report Share Posted May 5, 2007 Hi, Rita. You're right; there are two different coloration changes. My legs, feet, and hands will go the purple-blue from pooling, but there is the other bluer coloration that occurs in my toenails, fingertips and nails, and lips. I'll have to keep a mirror around to see if the blueness subsides in the supine position. That's a really good question! My doctor did say she saw my lips turn blue on tilt. Every time I look in the mirror they are blue, and that's typically when I'm standing in the restroom or driving in the car. The worse I feel, the more blue my lips are. On a better day, they are slightly blue (only noticable under good lighting). When they are a darker, more obvious blue, I am feeling miserable. The asthma is hanging around at 80 - 85% capacity right now, so it's in the "green" and has been on days when my lips are the darker blue. Any idea how POTS could cause it? Can asthma cause it when peak flows are in a decent range?Hi, Flop. I kind of thought that was what you were thinking. I've searched for pictures of central cyanosis of the tongue online but have not found any that are good for comparision purposes. Hopefully, the other day was a fluke. When my lips have been blue, so far, no doctor has asked to see my tongue. It might be they already checked that in the exam. That plus the ABG pretty much rules out central cyanosis, and the ABG was on a really BAD, symptomatic day. My fingers were so blue the tech was afraid to do the test (lips were blue, too). Then I almost fainted on her during the draw. Poor thing...she was glad to see me walk out of there!Any other thoughts or theories? Quote Link to comment Share on other sites More sharing options...
DaniH Posted April 5, 2021 Report Share Posted April 5, 2021 I have bluish lips too. Actually, along parts of my lip line there are dark purple areas. I would guess that the reason your lips are blue and get more blue upon exertion is POTS (I also have POTS (dysautonomia) as well as EDS, Chiari, MCAS so I feel you). Just like how blood rushes to our stomach after we've eaten, and can cause post-prandial (after a meal) POTS symptoms like extreme fatigue, increased hear rate, lower blood pressure, etc. We feel this after a meal because the blood is rushing away from our head, lower body, etc and goes to the stomach so the heart has to pump harder to move blood around to all parts of our body. I think when you are exerting yourself, you are increasing your heart rate to oxygenate your muscles, lungs, brain and the body thinks of the extremities as second class citizens for a bit. Its main concern is oxygen for the major muscles and organs. This will cause tour lips to get blue. Same with laughing. It is an adrenaline rush which does a similar thing as exercise. Our bodies only know processes. It doesn't know the difference between laughing hard, exercising or running away from a tiger. It reacts in similar ways. Really, the first thing that happens are autonomic processes. Things your body does that are controlled by the parts of the brain that don't require any input from you. It just reacts and that saved lives back when the threat was real. I would suggest you look into brain stem compression from Chiari Malformation which is often tied to POTS. It may be that you have dysautonomia from a structural issue rather than just POTS. Lastly, get your iron checked as well as B12. If you are anemic, it will make 3 everything else with POTS worse. I know that post is pretty old now but I have been looking for proper treatment for my issues for 14 years and still searching. I hope you've found answers but if not, i hope this helps or helps others who have found themselves on this website. Quote Link to comment Share on other sites More sharing options...
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