Blue lips follow up #2 - Doctors, can you chime in?

[robbie3982]

Here''s a link to the previous posts incase you haven''t been following: https://www.pricescope.com/community/threads/follow-up-to-blue-lips.86249/

Today was my cardiologist appointment. He did an EKG and another pulse ox both of which came back normal. My fingernail beds were doing their blue thing while he was examining me so he actually go to see what I was talking about, which made me feel a bit better.

The cardiologist said he''s pretty sure it''s acrocyanosis and he gave me a printout of this http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/acrocyanosis.jsp. It''s not serious and nothing has to be done for it. He said he still wants to do the TEE (scheduled for 7/15) just to be 100% sure it''s nothing with my heart, but he cleared me to exercise again. Yay!

So, after DH and I left the appointment I read over the sheet a bit more carefully and while I''m thrilled that the cardiologist doesn''t think it''s something with my heart, I don''t know that acrocyanosis seems to really fit either from what I can find about it online. Even the page he printed out for me says it''s diagnosed by the observation of "persistently blue and sweaty hands." My fingernail beds and the outline of my bottom lip turn blue a few times a day, but my hands are definitely not sweaty, and the use of the word "persistent" has me a bit confused. In a medical sense, does it mean the symptoms are always there or that they keep coming back?

DH doesn''t think it matters that I don''t seem to have all of the symptoms, but to me it seems like that''s an important one for this. I don''t know, I mean if the cardiologist says it''s not my heart, then I guess it''s not my heart, but I don''t know if I buy that he''s gotten the diagnosis right either...

Can any PS docs weigh in on your opinions on the use of the word "persistent" and the lack of sweating?

 

[moremoremore]

Holy crappers! This sucks....What state are you in? Are you seeing "the best"? I would definitely get second opinions....not that it''s the same thing, but my FIL had an EKG and stress test and everything came back normal...as a fluke, he decided to see if his insurance co would cover some random test (b/c he still didn''t feel right) (I don''t know the name but can find out....I think it''s like that Oprah 3d heart scan) and he had major blockage and needed shunts (sp?)....So I don''t know what the next procedure is, but I''d definitely look into second opinions....this must really suck...There is a lot on the internet (although it can definitely give too much info and make you more worried)....so do your own research and get 2nd opinions!

 

[robbie3982]

He''s supposed to be one of the best in the area. Sabine''s FI said he didn''t think it mattered that I don''t have the profuse sweating.

After doing some more research online I found that it''s most common in women and it usually appears in your 20''s. It''s also more common in people with low BMI''s. My BMI is definitely in the healthy range, but I started losing weight (on purpose through diet and exercise) at the end of March, so all of these things seem to go along with the diagnosis.

I definitely feel a lot better about the whole thing after doing more research, but I''ll be able to completely relax after the TEE on the 15th.

 

[neatfreak]

Robbie it''s important to remember that each patient often presents differently, even if they all have the same disease. So just because you present differently than the basic info online doesn''t mean the diagnosis is incorrect necessarily.

But if you are still worried about it a second opinion certainly wouldn''t hurt!

 

[robbie3982]

Thanks for chiming in, Neatfreak! As long as the TEE comes back normal I don''t think I''ll get a second opinion. The family doctor just freaked me out a bit by thinking it was my heart.

 

[neatfreak]

Date: 7/1/2008 2:13:02 PM
Author: robbie3982
Thanks for chiming in, Neatfreak! As long as the TEE comes back normal I don''t think I''ll get a second opinion. The family doctor just freaked me out a bit by thinking it was my heart.

Sounds like a plan, if the specialist thinks it''s ok, it probably is. Sometimes we all have weird things going on with us! Hope you get it figured out soon.

 

[SarahLovesJS]

Just wanted to say I am glad it''s not your heart and here''s some hugs and PS Dust! Sorry you''re going through this!

 

[robbie3982]

Thanks neat and sarah

 

[San Diego Bride]

i'm glad your appointment went well.

as far as acrocyanosis goes, it's more of a symptom than a disease per se. sweating is not necessary since acrocyanosis purely means blue (cyanosis) distal (acro) areas. sometimes its associated with heart or lung issues, but with a normal ekg, normal pulse ox, surface echo, and cardiologist exam that's not the case for you. the tee might be a bit overboard in that cardiac lesions large enough to be symptomatic would most likely be seen on a surface echo (especially given your body habitus) and associated with a murmur. if you want to be 1000% sure though, that's the way to do it.

our bodies do funny things sometimes and doctors come up with big words to describe them. sometimes i think it makes us feel better... oh, i have xyz, there's a name for this and other people have it too... sometimes it gives docs an ego boost... another opportunity to use big words and look smart. the reality is that a lot of people's nailbeds and lips turn blue (mine actually do it on occasion, very fun in front of my cardiology and pulmonology colleagues) and it doesn't really mean anything. of course, that conclusion only comes by process of elimination after a thorough exam and workup.

you've gone through all of the right steps. have your tee and see how you feel after those results. there's always room for a second opinion though i don't think there's really much more of a workup to be done at this point. in reality though, your comfort with the diagnosis and your health is what is important. if seeing another doc will help give you peace then that's absolutely the right thing to do.

kudos to you for taking charge of your health care and asking good questions. more patients should do that.

 

[diamondfan]

I am glad it is nothing serious. That is the most important thing...and it does not cause you pain, right? It is an interesting one that is for sure!

 

[robbie3982]

Thanks for the insight, Novia! I thought cyanosis in general was a symptom too, but the printout the cardiologist gave me said acrocyanosis was a disorder, so I just figured they were different. As long as it can happen and not be anything bad, it can be called whatever it wants, LOL.

The family doctor definitely freaked me out by saying he thought it was an ASD and that it most likely wouldn''t show up on a regular echo, so I guess it''s still in the back of my mind that maybe the cardiologist got it wrong. I mean, they both had the same info and came to such different conclusions. I''ll feel a lot better after the TEE next week. It definitely helps to hear from another source that sometimes these things just happen and it doesn''t mean anything bad, so thank you! If you happen to check back, can you explain the difference between acrocyanosis and central cyanosis? From what I''ve read central is bad and acro is not (I think?) and I guess the family doc thought it was central and the cardiologist thinks it''s acro? I can''t seem to figure out the other differences though...

Diamondfan, nope, no pain. So, if the cardiologist is right, I just have an excuse to always have a manicure and wear lipstick

 

[miraclesrule]

Date: 7/6/2008 8:56:40 PM
Author: robbie3982
Thanks for the insight, Novia! I thought cyanosis in general was a symptom too, but the printout the cardiologist gave me said acrocyanosis was a disorder, so I just figured they were different. As long as it can happen and not be anything bad, it can be called whatever it wants, LOL.

The family doctor definitely freaked me out by saying he thought it was an ASD and that it most likely wouldn''t show up on a regular echo, so I guess it''s still in the back of my mind that maybe the cardiologist got it wrong. I mean, they both had the same info and came to such different conclusions. I''ll feel a lot better after the TEE next week. It definitely helps to hear from another source that sometimes these things just happen and it doesn''t mean anything bad, so thank you! If you happen to check back, can you explain the difference between acrocyanosis and central cyanosis? From what I''ve read central is bad and acro is not (I think?) and I guess the family doc thought it was central and the cardiologist thinks it''s acro? I can''t seem to figure out the other differences though...

Diamondfan, nope, no pain. So, if the cardiologist is right, I just have an excuse to always have a manicure and wear lipstick

Funny!! And I am so glad that you are able to retain a sense of humor when you are scared.

I think you are doing all the right things to reassure yourself that this isn''t indicative of a more serious condition. The internet is a good thing. It helps us in diagnosing problems and sometimes one needs to do that these days. Yet it can also be a curse. I learned that when I had to study a Merck Manual.

One can start thinking they suffer from all sorts of maladies.

I hope everything comes back clean.

 

[San Diego Bride]

acrocyanosis is often benign though important things need to be ruled out (see above). the cyanosis occurs primarily in hands and feet and can be seen in lips and tips of noses as well but shouldn't really be seen anywhere else (ie: your face and the area around your mouth should not be blue). it often comes and goes. central cyanosis is definitely a problem. there's no sugar-coating that one. but the cyanosis is everywhere and much more constant. in this case, the oxygen saturation is low. the issue can be with the heart, the lungs or the blood and definitely needs to be found and addressed.

i'm sure you've read about asd's, but i'll give you my brief scoop. an atrial septal defect is a hole in the wall (septum) that divides the right and the left atrium. the atria receive blood into the heart. blood from the body goes to the right atrium then to the right ventricle before going on to the lungs. this is "blue" or deoxygenated blood. the "red" or oxygenated blood goes from the lungs to the left atria, left ventricle then out to the body. there should not be a connection from the right side to the left side of the heart. if there is, then the "blue" blood can cross over from the right side to the left side and be pumped out to the body, lowering the oxygen content in the circulation.

make sense? well, the thing is that asd's are rarely big enough to really cause a drop in saturations (and yours was normal in the cardiologists office where you were having a "spell"). when symptomatic, they present in children with failure to grow properly and all sorts of issues. they are usually asymptomatic, however, and picked up when someone hears a murmur and goes looking for the cause. they often close on there own in childhood, but if they don't they need to be repaired. the biggest reason to repair them is the risk of stroke. if you have a tiny clot in your leg and it goes back to the heart, crosses through the hole from the right to the left and gets pumped up to your brain, you have a stroke. that same tiny clot somewhere else doesn't cause much of an issue. the hole itself can also cause more turbulent flow in the atria, thus increasing your risk of clot formation in the heart itself, but that's another issue.

as far as detection of asd's the surface echo is the way to go. you see the overwhelming majority of the septum via the surface of the chest. when you want very specific mapping (ie: someone has a complex defect that needs to be better defined for surgery) then you do a tee for more detail. if you are large or have a very thick chest wall (think obese and apple-shaped), surface echoes can be ineffective so that would be a reason to do one. in general, a tee is done to either provide more detail on large or complex things or to find subtle stuff. if you're symptomatic from an asd, it would be large and not subtle.

as far as family doc vs. cardiologist, i'd trust the cardiologist every time when it comes to the heart, provided of course that both are good doctors. is your primary care doctor an internist or family practitioner? if he (i think you said it was a he) is an internist, then he spent 3 years in residency after medical school focused on general adult medicine. sure, some of this was in cardiology, but it wasn't the focus overall. if your pcp is a family practitioner, then he spent 3 years in residency focused on adult medicine, pediatric medicine, obstetrics/gynecology, etc... the whole shabang. that makes for less of a focus on cardiology. the cardiologist on the other hand spent 3 years focused on general adult medicine followed by another 2-3 years focused only on adult cardiology. he definitely has the most experience and looks at echos much more frequently than your pcp would.

from what you've written previously (exercise restrictions, etc.) it seems your pcp is just really cautious. most folks are when they're unsure of the diagnosis, especially when the heart is involved. that's good. i think the difference in interpretation of cyanosis (central vs. acro) probably came from the fact that the cardiologist saw it happen while the pcp only heard about it. when you said your lips were blue, he was probably thinking it was the area around your mouth. it sounds like a subtle difference, but diagnostically it's big. could that be it?

sorry my post is a bit rambling, but i hope it helps a bit. feel free to ask if you have any other questions.

 

[diane5006]

AHHH my post just dissappeared

OK

I would feel more comfortable wiht the cardio findings...but still get the TEE to be complete

I have been reading your threads...but not been posting...getting ready to move again

I was pretty sure but did look it up

ASD is an acyanotic defect (no blue)....acyanotic is not the same as acrocyanotic...even with my poor typing


Here is a link

http://en.wikipedia.org/wiki/Cyanotic_heart_defect

Also I have a patient who has a large (4mm) asd defect and the murmur to go with it...but no cyanosis...or symptoms for that matter

Best of luck

 

[robbie3982]

Thanks, miracles, novia and diane!

Miracles, my parents have this book on diseases that I used to read when I was little and I definitely used to think I had all kinds of diseases. I think they eventually hid it from me, lol.

Novia, thank you, that was very informative! My PCP is an internist. I actually took some pictures of the cyanosis when it was happening and brought them in to him, but they were with a camera phone, so maybe he thought it was around my mouth and not just on my lips.

Diane, I was confused about that as well.