Endothelial Dysfunction

[Carolina03]

Warm greetings, and many thanks for your valuable time.

I'm a 38 year-old female, former runner and mother of three. I've enjoyed good health until a recent pregnancy when I began experiencing unprecedented chest pain, SOB and palps.

Multiple work-ups later, including an adenosine cath, I was diagnosed with endothelial dysfunction (coronary flow 2.5); and aortic sclerosis with insufficiency (1.6 and 2+). I take Lisinopril, Eplerenone, Pravachol, Advair and sublingual nitro as needed.  

I continue to feel periods of chest discomfort with pressure, (relieved by rest or nitro), breathlessness and fatigue after prolonged exertion or extreme emotional stress. I've heard different opinions on my prognosis and treatment plan.  

1) What is endothelial dysfunction, a marker for atherosclerosis, heart failure or another disease entity? How common is it?  

2) Is small vessel disease reversible, and what is the current research on treating it? What causes it? (I do not have diabetes but did have gestational diabetes).  

3) Given that the valve disease is only mild-moderate, would an AVR help cure my symptoms? Isn't valve replacement indicated when INDIVIDUALS become symptomatic?

4) Two weeks ago after a sudden death in my family, my siblings and I discovered that we have Factor V Leiden. Would you consider this an incidental finding, or relevant in terms of my treatment, diagnosis, future caths, etc.

5) I also have mild LAD stenosis from a myocardial bridge.  

Could these factors combined explain my symptoms or alter my treatment strategy?

THANK YOU!!!

[CCF-M.D.-MJM]

Hi Carolina,

Sorry to read about your symptoms.  Endothelial dysfunction is a relatively new findings, kind of a buzz word right now, that suggests the cells on the inside of your corornary arteries are not working as they should.  These endothelial cells are responsible for releasing local vasodilators and regulationg coronary blood flow.

Endothelial dysfunctin is found in some patients with unexplained chest pain symptoms -- without significant coronary artery or valvular disease.  I quick literature search did not turn up the incidence of endothelial dysfunction, but my guess is it is underestimated.

2) Is small vessel disease reversible, and what is the current research on treating it? What causes it? (I do not have diabetes but did have gestational diabetes).

Most people with endothelial dysfunction have some form of metabolic syndrome (over weight, glucose intolerance, hypertension, increased triglycerides and low HDL).  If this sounds like you, aggressive diet changes and diet and exercise may help, although there are no studies to confirm this.  We don't know if it is reversible, but the above efforts plus the medications you are on +/- a statin depending on your lipid panel.  I am not sure why you are on eplerenone though.

3) Given that the valve disease is only mild-moderate, would an AVR help cure my symptoms? Isn't valve replacement indicated when INDIVIDUALS become symptomatic?

Valve replacement at your stage will NOT change your symptoms.

4) Two weeks ago after a sudden death in my family, my siblings and I discovered that we have Factor V Leiden. Would you consider this an incidental finding, or relevant in terms of my treatment, diagnosis, future caths, etc.

No it does not.   Have you been personally tested for FActor V leiden?  If you ever have a blood clot you should be on life long coumadin and when you go on long trips, you should make an effort  to get up and move around frequently.

5. A mild LAD bridge would not cause crushing chest pain.

I think the answer is still diet, exercise, ACEI (lisinopril), and maybe a statin if there is any question about your cholesterol pattern.

I hope this answers your quetions.  Good luck.

[Carolina03]

THANKS again.

Yes, I was tested for FVL.

I was having night sweats w/ chest pain and started taking Eplerenone per Dr. Carl Pepine (SHANDS), as a part of the Womens' Ischemia Syndrome Evaluation (WISE) study. (I'm a guinea pig). The diuretic, ACE or discontinuing Cardizem, (not sure which), relieved my symptoms at night.

I definitely, absolutely feel the symptoms I mentioned after prolonged activity. I'm not overweight or exercise-deprived. My chlor. is OK but was elevated postpartum.  

I could have subclinical diabetes according to my primary doc. (My tests are borderline).

I do not often feel CRUSHING chest pain. I feel left-sided chest, arm, neck and jaw DISCOMFORT approx. 3x week. I've only felt "typical" angina (like someone socked me in the middle of my chest) approx. 3x month, and always related to picking up a heavy object.

I agree w/ your advice on diet, exercise and meds, and am trying to change my lifestyle. I eat whole grains, which taste GREAT btw!

I look forward to hearing more about endothelial dysfunction from the CCF, and hope you agree that it's a worthy research investment.

Best,
Carolina

[MinnieM]

I may have this also but never told the name. Only that I have small vessel disease and metobolic syndrome.  I am in my fifties now but Dad and his brothers died of heart disease by the time they were 41.  Just had a stress echo and there are things on this that make no sense to me even though the Baylor cardio said it is normal and to not see another doctor for 6 months.   On the stess side it shows Ischmeic ST changes in the V4-6. This does not sound normal to me. I had a reaction to the difinity IV they gave me that caused severe cramping in the back and chest. I have had 2 Caths and 4 stents placed and still have severe non exercised induced Angina type pains that do respond to Nitro. He said I am just too sensitive to pain.
He was most insensitive and I feel it is becasue I am a female. No wonder heart disease is the leading cause of death in women.  It is doctors making Heart Disease the no. one killer in women, for not listening to us.

Good Luck To You.

[Carolina03]

Minnie,

I had a terrible experience finding answers. Please, please seek another opinion. I hope you're taking medication and continuing to exercise, if your doctor says it's OK. The ACE I'm taking helped my symptoms at rest and for the most part, I'm living a normal life for someone my age.

I have a curious mind or wouldn't be persistent in understanding what I have, and how best to treat it.

I am so sorry that your doctor treated you so poorly. I'm sure it's frustrating on their end, too ... research for female heart disease is just now coming to fruition after many years of relegating women to models of male heart disease. It'll probably take another generation before bias and attitudes like you've encountered "die" out.

Blessings,

[WPWGuy]

Hi.  I agree that a second opinion is a good thing in a case like this.  But you might want to review what your process was for selecting your current cardio before selecting a new one. This might --- but is no guarantee --- help avoid the need for a third or even fourth opinion.

Finding a good women's cardio is easy.  Just look for cardio voted "best doctor for women" by his/her peers. If you strike out in your area, i suggest looking around on the U of Pa website.  There's one there...

Good luck.

[MinnieM]

Thank You both...I am in Houston and there use to be a great female doctor here but moved West someplace. I had seen her years earlier but nothing serious. Now that I need her she has relocated. Baylor Heart was my second opinion.

I am on an Ace (Avalide 150/12.5)and TopolXl, Crestor,and Plavix. I was told I had a heart attack and then I did not have one and then told I did and then told I did not..I need to find a Country Bumpkin doctor who takes his/her time to figure things out and can help weed thru this in a humanitarian way. I do not want to become an Erin Bronovitch (sp)(-: and have to fight for answers when I KNOW there is something really wrong. Tired of not being listened to.

What meds are you on?

Thanks for responding to me and for listening.

[WPWGuy]

Hi Minnie. Meds - none.  

I myself live in the country and have discovered that I can find cardiologists with many backgrounds wherever I go, city or country. But there are often times better/more choices if one is willing/able to widen the scope of things, and focus on those things that matter most.

The important thing I think I am hearing is that when you say you would like a "country bumpkin" doctor, I think you mean you would like someone who can talk to you in practical terms,  has a lot of common sense,  and is dependable.

I believe these traits are more widely available than you realize.  So there is just no reason not to add some additional requirements, like certifications, accomplishments, history of personal and professional successes etc, and then go find a better doctor than the one you have.

Good Luck.

[MinnieM]

Yes, Guy this is what I mean. I do not care for the Teaching Hospital setting.  I do not care for a Fellow to come in the room first and I have to tell him my tale of woe.  Then, he in turns leaves the room and tells the Big Doc my tale while losing half of it in translation )-:  Then the Big Doc comes in with a nurse and there is four of us in a tiny exam room with hot lights overhead and I lose it!~! as now I have an audience and I freeze up. They really do not care about me but getting another fellow his wings.  So sad but so true.  Now, I have to have all these tests repeated as I got no satisfaction from the last group. More balony than anything else. I wish I were a 6'6" muscular male that over towers the Doc instead of a 5'2" petite female (-:  Thanks for your comments.  I wish you well.

[abasketcase]

Hi Carolina! I was just wondering in what area of the Carolinas are your dr's? I believe from reading some of your other posts, you mentioned you were from the South. My dr has also suggested microvascular dysfunction as a possible cause for my chest pain, but also said it would be difficult to say for certain. I was just wondering what medical group or hospital affiliation you have been associated with. A sidenote, it was a "country dr" (a women) who took the time to answer my questions and has worked with me to get my meds to where my use of nitro has dropped substantially. To bad she is my gp and not my cardiologist. If I could just find one of those then maybe I would have some answers and not just pills.
Have a lovely day!
abasketcase :)

[Carolina03]

Hi --

I didn't mean to give the impression that my "terrible" experience had anything to do w/ gender or place.

First, no one is to blame for my "misfortunate" genetics, A-personality or less-than-healthy lifestyle. I never smoked or partied but like many American women dieted to extremes in college and graduate school.

My primary care doctor, an OB prescribed the wrong medication almost ending my third pregnancy at six months; the cardio she finally referred me to recently lost his medical license due to alcohol and drug abuse. (He showed up hammered in the ER to treat a patient in severe heart failure).  

These two experiences shook my confidence in a system I had believed in. My father and brother are surgeons; I never questioned any diagnosis until my own instincts pushed me forward to find answers. The CCF helped me move on with my life through their proactive, thoughtful care.

I'm not unhappy with the care I receive locally now, and I live in a small community. I have a brilliant cardio locally, and am fortunate enough to have been referred to a specialist who deals with small vessel disease, Dr. Carl Pepine.

Yes, I'm one of "those" women who had more than two cardiac opinions. I'm stubborn, determined and smart: I knew something was wrong. No one could give me an answer that made sense.

The "pills" I take allow me to live a normal life. I've tried discontinuing them on a few occasions and a week later ended up breathless and fatigued. I've also found that if I don't eat a heart-healthy diet or exercise, I feel less energized.

I hope those reading this also didn't take my comments regarding generational bias the wrong way. I'm speaking from my own experience.

I'm a very strong believer in exercise, time in nature and meditation in addition to the modern wonders of medicine.

You become what you pray. You pray what you become.

Blessings,

C

[MinnieM]

Your story intrigues me as it is so similar to mine. How were you diganosed with small vessel disease? Who is Dr. Pepine? I suspect I have this as there is an area that one of the heart Institute doc says, "I was born with small arteries" and this is why they are clogged up and this is why you have severe angina pains..yada yada yada but no concrete answers and brushes off my questions and takes a deep sigh when I need more "meaty information" and is not willing to answer me more as I really think he is ignorant and does not want to admit it.  Now, his competition across the street ( I am in Texas) talks with various docs at Clevelnad Clinic and named a lot off that I have seen on the CC site. I recently had 2 stress echo's. One at each heart place.  Both had different results. Great numbers at rest but lousy when they did the stress part showing Ischemic Vessels in the V4-6 leads with ST-Changes (+1). -Not good. EF fraction is good in all cases.  Stress over 70 and without stress over 60. The across the street doc wants me back in his cardiac rehab program.  Was at the other place for 3 months but not happy there. I do not know what the future hold for me as I do not know what is wrong with me. One cardio doc said he only has seen two other patients like me. DUH!!

I have feet swelling and SOB which I think I have some sort of Cardiomyopathy or CHF but no one pays attention to my elephant feet and SOB. I have great health insurance and do not need referrals!   Go figure.  

Carolina, where do you go from here?  Do you have a yahoo address that we can talk more?

Thanks and God Bless All of Us!  
P.S.  I too have lost faith in the medical profession. That Oath they take , many doctors have never read it.  Yesterday, one of the cardio docs who use to call me by my first name now refers to me as "Madam!!" as he is totally *%^%$^$* with me for getting another opinion which he let me know that he disagrees with.  Hubby is livid too.  Live and Learn and Live and Learn WELL!~!  Many of These BOYS need to Grow up and lower that EGO of "I am better than so and so" attitude.  I want the best and deserve the best as we all do here.

Sorry for the length but I needed to vent. So darn frustrating.

[EPCGUY]

There is a non-invasive treatment for endothelial dysfunction.  The best known and most widely available form of it is called Enhanced External Counterpulsation or EECP.  This treatment is FDA approved and CMS reimbursed for Class III and IV angina.  It is also FDA approved gor congestive heart failure (CHF).The Mayo Clinic has run studies showing that the treatment is also capable of reversing endothelial dysfunction.

I looked but saw no mention of this option which, strangely enough, is not unusual.  Please check out this highly effective, non-invasive treatment option now since most cardiologists will still neglect to mention it.  Go to www.eecp.com  or  http://www.vitalheart.net/news.html     information everyone should know about.

EPCGUY

[EPCGUY]

There is a non-invasive treatment for endothelial dysfunction.  The best known and most widely available form of it is called Enhanced External Counterpulsation or EECP.  This treatment is FDA approved and CMS reimbursed for Class III and IV angina.  It is also FDA approved gor congestive heart failure (CHF).The Mayo Clinic has run studies showing that the treatment is also capable of reversing endothelial dysfunction.

I looked but saw no mention of this option which, strangely enough, is not unusual.  Please check out this highly effective, non-invasive treatment option now since most cardiologists will still neglect to mention it.  Go to www.eecp.com  or  http://www.vitalheart.net/news.html     information everyone should know about.

EPCGUY