AHA Builds Another Shrine to Heart Disease Promotion

I like to visit the American Heart Association (AHA) website from time to time as it is always a good source of bad advice to blog about. I mean, if the AHA practiced heart disease prevention instead of heart disease promotion I would have little to blog about. You might retort, "What do you mean 'Hawk, the AHA is trying to fight heart disease, you know, prevent it, not promote it." To which I would reply, "Read their screed!" The AHA appears to be most interested in giving you the best REPAIR medicine after you have crashed and burned rather than giving you the best crash prevention medicine so you won't need any repair.

Their latest shrine to heart disease promotion is their new web tool "Heart Profilers." It is an extensive and exhaustive piece of programmed "cyber-medicine" that purports to ". . . help you understand different treatments that may be appropriate for you based on your diagnosis, symptoms, and test results. Using this tool will help you better evaluate your options and make informed decisions with your doctor and health care team." Hardly, read on!

I decided to enroll, gave them all my personal info (so they can market to me) and answered an extensive questionnaire about my health, what drugs I take, etc. To say it was slanted toward doing invasive procedures is an understatement. When the entire process starts with the statement, "The chest pain known as angina is usually one of the first symptoms of CAD." you know you are dealing with neanderthal medicine. Yeah, I suppose if you have never had a heart scan it might come to that but by then it is too late - you're hooked into the "cut and drug" assembly line. See what I mean about their repair versus prevent mindset?

The questionnaire tacitly assumes that heart disease is first diagnosed by chest pain. Apparently, unable to take "No" for an answer as to whether I have chest pain, they go on to ask numerous questions about my non-existent angina, heart attacks, angiograms, stents, stress tests and other interrogatives that have little to do with prevention and presuppose extensive heart disease. I mean, how do you answer questions like (and there are many), "Has your doctor said you are a candidate for coronary artery surgery?" when it has not and hopefully never will be an issue? Catch the drift here? Think they are pushing invasive procedures?

Now comes the best part, the recommendations! Here are mine. "Your answers to the questions about risk factors indicate that you have no risk factors for coronary artery disease that need to be managed. " WHAT?! ARE YOU KIDDING ME?! What about the need to raise my HDL above 40mg/dl and further reduce my LDL below their 100mg/dl cut-offs. They never even asked about my sky-high Lp(a) or what my LDL particle size and particle count was (fortunately mine is fine). The fact is I have a high calcium score for my age and it is growing (thankfully not as fast as it would under AHA care). I am a heart attack waiting to happen and the AHA, after taking an exhaustive heart health history says I, "have no risk factors for coronary artery disease that need to be managed." Are they nuts?! Heck, they even HAD a question regarding thyroid disease but the results remained the same no matter if I answered I had no thyroid disease, hyperthyroidism, or hypothyroidism (which I have). Perhaps they need to read the upcoming Track Your Plaque report on hypothyroidism and heart disease! It is a HUGE factor.

It seems the bottom-line here is that the AHA is only interested in heart disease if it is so advanced that you need a procedure or drugs (no mention of supplements like fish oil or Vitamin D at this AHA shrine). I have heart disease that requires aggressive treatment yet the AHA thinks I have "no risk factors for coronary artery disease that need to be managed." What they really seem to mean is I do not need an invasive repair procedure yet. That is what I mean when I say the AHA is a heart disease promotion organization and not a heart disease prevention organization. Sign up, select the "Coronary Artery Disease" option and take the test yourself. It is the best way to experience their stunning ignorance.

Regards,


HeartHawk

Your Doctor Just Might Be a Gol-Darn Fool If . . .

With apologies to Jeff Foxworthy . . . your doctor just might be a gol-darn fool if he or she still does not believe in the predictive power of heart scans. The latest piece of evidence, found in the Archives of Internal Medicine, is based on data from the Multi-Ethnic Study of Atherosclerosis (MESA). Researcher Dr. Aaron Folsom remarks "our data suggest that in asymptomatic 45- to 84-year-old US adults, CAC score may be the better choice over IMT." This is a powerful statement as IMT or CIMT (Carotid Intima Media Thickness) as it is sometimes known, has long been an acknowledged "gold standard" for judging global heart attack risk by the American Heart Association (AHA), National Cholesterol Education Program (NCEP), and in the widely heralded ATP-III report.

So, if you are a 45 to 85 year old US adult and your doc gives you any heat about using heart scans to quantify your heart attack risk, look them in the eye and say, "SEE YOU LATER FOOL," and calmly walk out the door - then find a doc who is not just another gol-darn fool.

Oh and by the way if they should ask for more proof than just this study, smack 'em with these studies as well

Raggi P, Gongora MC, Gopal A, et al. Coronary artery calcium to predict all-cause mortality in elderly men and women. J Am Coll Cardiol 2008; 52:17-23.

Detrano R, Guerci AD, Carr JJ, et al. Coronary calcium as a predictor of coronary events in four racial or ethnic groups. N Engl J Med 2008; 358:1336-1345.

Weintraub WS and Diamond GA. Predicting cardiovascular events with coronary calcium scoring. N Engl J Med 2008; 358:1394-1396. (Note this is a comment that shows how even traditionalists are starting to face the truth)


As Bugs Bunny might say, "What's up doc!"


HeartHawk

Calling Dr. Wikipedia! Stat!

You just knew this had to be coming but I never would have believed it had I not seen it with my own two eyes! As many readers of my blog know, I have been diagnosed with Hashimoto's Thyroiditis and subclinical hypothyroidism (elevated TPO and TG antibodies, low normal T4/T3 and high normal - depending on who you ask - TSH).

Yesterday, I submitted to an ACTH Stimulation Test to examine if I have adrenal insufficiency as a cofactor in my hypothyroidism. In this test, an initial blood draw is taken to establish a baseline serum cortisol. Then, you are injected with synthetic ACTH, the pituitary hormone that signals your adrenal glands to produce cortisol, and your levels are rechecked every 15-30 minutes for a period of time (usually an hour). I guess I had my first reservations when making an advanced reservation to have the test done. I was actually at the testing hospital for another blood test (free testosterone) but, unbelieveably, they had no method for taking a reservation in person. I called the number they gave me and it was clear the nurses and techs I spoke with were unfamiliar with the test. Finally, I convince someone to meet me in their lobby and after 15-20 minutes of private consultation, paging through 3-ring binders, and calls to other staff I had my appointment.

I show up for my test and they take me to a nice room where they have numerous vials and solutions, IV's, etc. ready for me but they are still not certain about how to do the test. I suggest they simply call the doc who ordered the test for me as he has an office right in the hospital. He faxes some additional info and we are off to the races. About 45 minutes into the process I get bored. So, I saunter outside the testing room with an IV dangling from my left arm to retrieve my chart which I know will invariable be sitting in a chart holder on the wall outside the door. I always love the " how dare you" look I get from the docs and nurses who happen to see me grab my chart but there is really nothing they can do to stop me. As I begin paging through the notes I come upon the "magic" set of faxed instructions that got things moving. My eyes roll and I can barely contain my astonishment - it is a printout of the Wikipedia entry on - you guessed it - the protocol for the ACTH Stim Test. The doc had simply crossed out the optional 45 minute interval draw and accentuated the need to heparinize the blood sample.

So, the moral of the story is, the next time you feel guilty or inadequate about doing battle against an arrogant doctor armed with nothing but web research - DON'T! You may both be practicing Wikipedia medicine!

Regards,


HeartHawk

Give Me a Freakin' Break: Need I say More?

You know, you work so hard to inform people about dealing with issues like plaque and calcium and then you stumble across this crap.

I found this on WrongDiagnosis.com. Have these people no shame? This is pure, unadulterated BS! Perhaps they should change the name of the site to just plain Wrong.com.

I wish there was a nutrient that was 100% effective in flushing rogue con artists away!

Sheesh!

HeartHawk

What Next, Down is Up? An HDL Conundrum

Man, and I thought quantum physics was wacky stuff! Study after study has shown that higher HDL is strongly associated with cardiovascular health. HDL Cholesterol efflux mechanisms and the entire mechanics of reverse cholestrol transport have been proposed, studied, and experimentally observed. Now this!

In what could be a landmark study recently published in the Journal of the American Medical Association, researchers conducted a meta-analysis of the data from the Copenhagen City Heart Study (over 9000 persons with two decades of followup), the Copenhagen General Population Study (an ongoing study of over 30,000 persons), and the Copenhagen Ischemic Heart Disease Study (2500 persons referred for angiography). The conclusion, "Lower plasma levels of HDL cholesterol due to heterozygosity for loss-of-function mutations in ABCA1 were not associated with an increased risk of IHD." The lead investigator added, "The principal finding of this study is that heterozygosity for loss-of-function mutations in ABCA1 associated with substantial, lifelong lowering of plasma levels of HDL cholesterol, but not with corresponding higher levels of plasma triglycerides or atherogenic remnant lipoproteins, did not predict an increased risk of ischemic heart disease."

Now, let's review their findings - this time in English! The researchers looked for mutations in a key gene (ABCA1) that lowers HDL Cholesterol (HDL) and reduces cholesterol efflux from the artery wall but does not affect triglycerides. As expected, the group with the mutations had an HDL that averaged 17mg/dl lower than the general population and that 17mg/dl reduction should have translated to a 70% risk increase based on the results of the Copenhagen City Heart Study. However, this low HDL group did not appear to have any more risk than average. It was only in the presence of low HDL and high triglycerides that they found higher heart disease risk.

The findings suggest that, although low HDL is consistently associated with higher heart disease risk, it is not, by itself, a cause. The practical implication is not to dismiss low HDL as a marker for heart disease but to question its true role. It further suggests that simply raising HDL (as is the target of many new drugs such as CETP antagonists) is not enough and it must be considered in relation to other factors that often appear in conjunction with low HDL such as high triglycerides. Of course, this provides additional validation for the 60/60/60 Track Your Plaque principle. Keep that HDL high and those TGs low!

Wacky stuff!


HeartHawk

Sub-clinical Hypothyroidism Linked to Fatal Heart Disease

A study of 25,000 people recently published in the Archives of Internal Medicine has confirmed that sub-clinical hypothyroidism (those with supposedly normal TSH test results) is positively linked to fatal heart disease in women. However, there were not enough cardiac deaths to extend this conclusion to men (note that this DOES NOT mean men are not affected, it simply means there were not enough events to prove it statistically within the 95% confidence interval established for the study). This study confirms the findings of a smaller study published in the Archives last year.

The message these studies provide is clear. Persons with TSH test results even in the intermediate range of "normal" (1.14-2.52 mIU/L) may be at heightened risk for cardiac death. The practical result is that patients should no longer rely on supposedly "normal" TSH test results to rule out hypothyroidism. You KNOW I'm not. Look for a future report on how to protect yourself!

Regards,


HeartHawk

More "Customer NO-Service" in Health Care

As many readers know, I have been trolling the rabbit-hole of hypothyroidism. In the past month I have been a pin-cushion for a legion of phlebotomists as I collect as much test data about myself as possible. I have already gone through two "crank turning" endocrinologists and am on my way to a third. One would think it is easy. Get your records, find a promising physician, make an appointment and voila, on we go. NOT!

The trouble all started when I went to retrieve my latest blood test results (TSH and T4) from a local clinic lab (where Endocrinologist 1 practices). I called the lab and determined the results were in. Of course, they won't give me the results and refer me to my doctor's nurse. The nurse attempts to mislead me into thinking the results aren't in. Of course, I know better and push the subject. She further argues that I need proper interpretation, diagnosis, and treatment that she cannot provide. I reply I am only interested in a number. Sorry, no can do, that's policy. So I call customer service at the clinic and they give the same inane arguments but inform me I can sign up to see all my labs online if I come down and sign up for the service (I did). Unbelievably, the nurse cannot give the info over the phone (HIPAA was not an issue), but I can see them immediately via the Internet. They finally relent and the nurse calls to give me the results. Geez, did it HAVE to be that hard? Here's the funny thing. In the interim I called the lab and asked them to fax the results to another physician. HA! They just took the fax number and sent it without even checking. I already had the results by the time the nurse called me back! Remember, there is always a way to get around bureaucrats if you are willing to think outside the box and used their allegiance to "crank turning" against them. OK, that problem is solved.

Next, I need to collect lab results from my primary care physician and Endocrinologist 2 (E2) who is part of his group. They also would not release new results to me and their group records department requires me to appear in person to sign a release. The kicker here is that they will not give me the records on the spot but will mail them to me in about one week. But, since these are somewhat older records my primary care physician's secretary agrees to mail them to me. E2's secretary is less forthcoming. She flatly refuses to send me "my file" but would release it to another physician. Finally, after arguing that I have only seen E2 a single time, that "my file" probably consists of only two sheets of paper, and that my primary care physician from her group is already sending my records she relents.

Now, armed with all my records, I try to find an endocrinologist that I think would be helpful. I first get a nice list of docs my insurance covers and select a relatively recent grad (1994) who practices at the local teaching hospital (Medical College of Wisconsin). I figure this is my best shot at finding a doc who is up to speed on the latest research and doesn't just "turn the crank." So, I call to set-up an appointment with Endocrinologist 3 (E3). Not so fast! I am rather bluntly informed that they will not set-up an appointment without a referral from my primary care physician. Further, they first must review my records and THEY will select which specialist in their group is most suited for me and set-up an appointment based on what THEY believe the severity of my problem is. Naturally, my next call is to their customer service department. I explain, for example, that I hire lawyers all the time based on MY selection criteria. I don't ask the local Sheriff for a referral to a particular group of attorneys nor do I accept whomever happens to be available that day. I wish to specifically hire one of your doctors for a consult to review my situation. Do you wish to do business with me? The nice lady said she would get back to me . . . tick . . . tick . . . tick.

Customer service? HA! Guess what pilgrims? It ain't just heart care that's screwed up. Somewhere along the line these arrogant SOBs think they are something special. They do everything they can to control information and work to keep patients from proactively becoming engaged in managing their own health care. As I have said in the past you have to take control of your health, demand good customer service, and don't take no for an answer.

Remember, stubborness can be beautiful. It can also save your life!


HeartHawk

This is Getting Embarrassing: TYP and Davis Score AGAIN!

In the sports world there is a rather unsavory and embarrassing tactic called "running up the score." It is what happens when you face an inept opponent and simply thrash them because you are that much better. Since I have become a "full-fledged flack for Track Your Plaque" I never tire of pointing out when Dr. Bill Davis once again lives up to my billing of him as the "Nostradamus of Heart Disease." This time it is in relation to another of the TYP lipoprotein 60/60/60 targets (the foundation of the TYP program), HDL.

While doing additional research on Hypothyroidism I stumbled across another bit of research I had previously missed involving the Honolulu Heart Program. This is a decades-old study of Japanese men in Honolulu and San Francisco that researchers have drawn upon to develop numerous hypotheses and conclusions about heart disease. A study published in the Journal of Lipid Research not only verified the need to establish an HDL of at least 40mg/dl (old news) but went on to show that raising HDL to at least (you guessed it) 60mg/dl conferred a rather large additional reduction of risk.

Thank you, sir. May I have another! (a hip, trendy reference for all you "Animal House" fans out there). Dr. D., please feel free to score at will!

Regards,


HeartHawk

Hypothyroidism and Heart Disease: Now What?

When I went to see the second of my "dueling endocrinologists" I was was in the midst of a full blown episode I often experience where my stomach feels like it is trying to regurgitate a rock coupled with a nasty spate of heart palpitations (PACs confirmed by holter monitor). My research found that there is evidence to suggest that people with Hashimoto's Thyroiditis (my confirmed diagnosis by both Endo's) can episodically become hyperthyroid due to the thyroid releasing stored hormones as it deteriorates.

Because I was in mid-episode I thought it would be interesting to see if my thyroid could be the culprit and the doc agreed to retest my TSH and Free T4 that day. Wouldn't ya know it, my TSH was a sterling 2.0 with a 1.2 Free T4. The second doc has now has refused to prescribe hormone replacement therapy (too bad, the first one already did) and wants to do repeat testing for several more months. This test result is just what you might expect if for some unknown reason my diseased thyroid started dumping hormones. Hmmmm! Well, the episode has passed and I'm back to normal (stomach's fine and no palpitations). You just know I'll be getting another blood draw soon to see if my TSH shoots back up! I'll find a third endo if need be.

While the docs diddle I'll be doing my own thing. If they think I am going to sit around feeling like I was hit by a truck while they test me for another few months - they're nuts!

Regards,


HeartHawk

Hypothyroidism and Heart Disease: Round 2

Well, saw the second endocrinologist today. Let's compare notes!

1. Both agreed I have Hashimoto's Thyroiditis.
2. Both preferred synthetic T4 to the natural Armour Thyroid (AT) preparation citing inconsistency between lots of the AT (the company's website disputes this).
3. Both defended synthetic T4 as being preferable because T4 is longer acting, has to be taken only once per day (AT should be taken more often as it contains shorter acting T3) , and both say most of the body's T3 comes from T4 anyway.
4. Doc 2 also went on to say he wants me on name brand (Levoxyl, Synthroid, etc.) rather than a generic to ensure I get a consistent level of T4. His argument is that the generics are OK if you could ensure you got the same brand everytime but with generics pharmacies can substitute freely between generic brands.
5. Doc 1 wanted to start me at 75mcg (I talked him down to 25mcg). Doc 2 wanted to start me at 25mcg unprompted. I agree!
6. Doc 2 want to treat me to achieve a level of between (1.0 and 2.0). Doc 1 was never really mentioned a treatment level.
7. Doc 1 set me up for a sleep apnea test to see if that was the true source of tiredness. Seems that is not uncommon in thyroiditis. I also got the impression he was pushing it for financial reasons.
8. I mentioned having another TSH test and Doc 2 jumped right on it and ordered the test which was done at his onsite lab. Think perhaps he makes a buck there?
9. Both docs took fairly extensive health histories and physical exams with Doc 2 taking a little more health data and Doc 1 doing a little more physical examination.
10. Neither doc hurried me and answered any questions I had.

Well that's all for now. Pretty dry and clinical. Neither doc was a ball of fire! I'll add more as I think of it. Next, let's see what results I get from treatment but that may be a while!

Regards,


HeartHawk

Hypothyroidism and Heart Disease: The Saga Continues

Well, saw the endocrinologist this morning and he confirmed my self-diagnosis; I have Hashimoto's Thyroiditis a condition where my own antibodies are attacking and slowly destroying my thyroid. I am starting tomorrow on a daily regimen of 25mcg of levothyroxine (synthetic T4). I lobbied for Armour Thyroid (a natural compound made from pig thyroids that contains both T4 and T3) but, despite the company's assurances, the doc belives there is too much variation in composition from lot to lot. He also pointed out that 80% of the body's T3 is synthesized from T4 anyway. He wanted to start me out at 75mcg but I insisted we go more slowly. No sense taking more than I need and any additive treatment will get me moving in the right direction. I can always take more and will probably have to as my thyroid self-destructs!

Now for some fun! I actually made appointments with TWO endocrinologists and see the second one tomorrow. Won't it be interesting to compare notes. I'll keep you posted on the "dueling endos" and my treatment results. Of particular interest will be how it affects my rising Lp(a) and homocysteine.

Regards, HeartHawk

Hypothyroidism and Heart Disease: An Update

OK, folks, read 'em and weep. My thyroglobulin antibody test was a whopping 37.9 IU/ml (0-14.4 reference range) and my thyroid peroxidase antibody test was worse at 22.8 IU/ml (0-3.9 reference range). Guess what, I likely have a thyroid autoimmune disease, probably Hashimoto's Thyroiditis. Well, at least I now KNOW (think I know anyway) what is causing my symptoms!

Next step, find a doctor to confirm my own diagnosis and properly treat me. Good luck. I called the top endocrinologists in my area and the wait is out one to two months or more. So, I took what I could get and will see somebody this week. Hopefully, the doc can get me started on a thyroid hormone replacement strategy so I can see how it affects my lipoproteins as well as my general well-being. However, I kept my appointment with the other guy - just in case I need a second opinion.

You know, it's funny. When I started this gig seven years ago (well before this blog) I thought I would be researching the heart and its arteries and peripherally the liver (as it makes most lipoproteins). Now, I'm digging around in my neck! Go figure. Well, you go where the cure takes you. The lesson to be learned here is to take matters into your own hands, be proactive, leave no stone unturned, and keep searching until you unearth all the root causes of your disease.

I'll heep you posted on my journey!


HeartHawk

P.S. The good news is we won't have to start our own foundation as we are with Lipoprotein(a). There are LOTS of thyroid groups!

Hypothyroidism and Heart Disease: The Plot Thickens

Wow! This rabbit hole goes a lot deeper than I could have ever imagined. It seems hypothyroidism is clearly connected with heart disease, is largely undiagnosed/misdiagnosed, and generally misunderstood. If anything, the real problem is, because thyroid hormones are used in just about every body tissue, hypothyroidism is connected with a huge list of symptoms and conditions. Now, on to my sad story.

Here I am, feeling like crap, disgestive problems, myalgias, fatigue, anemia, rising lipoprotein(a) and homocysteine, palpitations, mild depression, lack of concentration - yeah all that fuzzy, amorphous, undifferentiated, "feel like a truck hit" me stuff. One day I am so fatigued that I drop by the local walk-in clinic (because I can't get a freakin' appointment with my internist for a month - sound familiar) where they find me to be anemic. I luck out and finally get in to see my "regular" doc and he orders tests that show I have a moderately high TSH (4.5) and a lower (but in range) Free T4 (1.0ng/dl) and T3 (2.68 pg/ml). Of course, the internist's staff won't give me the results because they want me to schedule another appointment in ANOTHER MONTH! With a little subterfuge, I get them to fax the results "elsewhere" for "continued care" (the magic words) where I retrieve them. (DON'T GET ME STARTED ON THIS PET PEEVE - THAT WAS MY GODDAM BLOOD AND MY TEST RESULTS THAT I PAID FOR. HOW DARE THEY WITHHOLD MY HEALTH DATA FROM ME!)

So armed with this data I start my investigation. It seems that the new upper limit for TSH is really around 3.0 (not 4.5 or 5.5). Upper and lower limits form test "Reference ranges" and are not absolutes. They are set by testing lots of people who are categorized as "healthy" and determining their blood levels. The problem is you can have a lot of people who are subjectively categorized as healthy but are really not. That appears to be the case with hypothyroidism. It is likely there were numerous undiagnosed subjects included in the old "normal" range. As I mentioned in my last post on this subject, the more enlightened docs in the medical community now use these tests as guides rather than absolutes and treat based on symptoms rather than blood levels.

Now here is where it gets good (or bad depending on whether you are manic or depressive today). I also mentioned that hypothyroidism is connected with rising Lipoprotein(a) and now discover it is also connected with rising homocysteine (that would be me on both counts) as well as other hyperlipidemias. It also seems that certain drugs and supplememts can interfere with thyroid production (like niacin - also me). The link in the previous sentence is a multi-page article I would recommend reviewing. I also recommend this well-reasoned discussion on the treatment of hypothyroidism (especially the undiagnosed and border-line variety).

Hypothyroidism, it is real and it can screw you up. But it is easy to detect and treat. If you have symptoms or suspect it, get a doc to test your TSH, T4 and T3. To reduce delays try to get them done all at once. Many docs will do just the TSH and then only do T4 and T3 if your TSH is elevated. This is just medical "crank turning" by docs who don't like to think. In my NOT so humble opinion, you really have to look at all three and interpret the results. I'll post my results once I start treatment.

Regards from the human guinea pig,


HeartHawk

Track Your Plaque: Continued Validation!

OK, since I am now pretty much a full-fledged flack for Track Your Plaque (ya gotta love the alliteration and rhyming), I don't feel quite as bashful about saying, "I told you so." Dr. William R. Davis continues his unbroken record of prognostication and retains the title I gave him as the "Nostradamus of curing heart disease" as I find yet another vindication of the Track Your Plaque principles, in particular the 60/60/60 precept (LDL/HDL/Triglycerides).

A new report from the Stop Atherosclerosis in Native Diabetics (SANDS) study suggests that aggressive lowering of LDL (<70mg/dl) and blood pressure (<115mmHG) regresses heart disease as compared to standard targets (100mg/dl and 130mmHg respectively). Admittedly, the researchers used carotid intima media thickness (CIMT) which is the easiest surrogate end point to regress. Also, the study only looked at Native American diabetics but diabetics are traditionally the TOUGHEST group to treat. It is also possible this result only applies to persons with Native American genetics but I doubt it. Either way, it is good news and pushes us closer to a cure.

The other nugget to come away with is the TYP principle that says plaque growth rates below 10% are nearly as effective as reversal (in terms of clinical events) is also supported by SANDS. While not a cure for all, this is still great news and another win for the lower is better philosophy.

The Lipoprotein(a) Foundation: An Update

Here is a synopsis of what is going on to establish the Lipoprotein(a) Foundation (LF).

1. I met with Mary Lou Ballweg, the head of the Endometriosis Association, an extremely successful group with many similarities to our proposed foundation. She informed me that the Milwaukee, WI area is a hotbed of start-up medical fiundations so I hope to take advantage of my location. Mary Lou provided a wealth of information and, I think, a powerful idea for jump starting LF. She recounted the key event in the growth of EA was the establishment of a database of self-reported information about endometriosis sufferers. The method they used was a simple brochure she mailed with instructions to fill it out and return it with a dollar to cover data-entry costs (this was the 1980's, no Internet). Universities like Dartmouth and Vanderbuilt were eager to get this type of research data as it was not available anywhere else and, voila, the research began in earnest. We should do the same and it will be a whole lot easier with the Internet (see next item).

2. Dr. Davis has formally agreed to donate all the necessary Track Your Plaque web resources to implementing the LF website. I now have admin privileges on the new development site and will begin to implement a web-based data collection tool within the TYP framework. Doc Davis also offered to donate the 501(c)(3) non-profit filing fee. When he mentioned the effort on his blog, several commenters offered their assistance as well (as they did on this blog). I would request that anyone still interested in donating skills or making contributions to contact me directly at hearthawk(at)wi.rr.com with their contact information. I have helped start two other non-profits but I am not an expert and could use all the help I can get. (see next item).

3. In addition to the web work I have also started the IRS filing process. I guess the only thing I can say is I'll work as fast as time will allow. Obviously, anyone with knowledge of this process would be extremely helpful. We do have to form a board of directors at some point. Major contributors of time, talent, and financial resources are always prime candidates for these roles.

4. If we can attract an "angel" investor we can obviously move a lot faster! I have broached the subject of investment capital with a professional fundraiser that would consider helping us at a reduced fee as time permits but she is booked for at least six month to a year. Whether it's a million people with one dollar or one person with a million dollars we will need to start raising money to fund research. Frankly, at the risk of appearing mercenary (I am), our best bets are people plagued (or "plaqued") with Lp(a)! The beauty of medicals breakthroughs is that once a cure is found for/by one person's efforts, it cures almost everybody.

5. If anyone has any medical/research/academic contacts they would be useful to help form our advisory board. The University of Wisconsin is a top medical research facility and I have scheduled a meeting with a blood researcher there. As luck would have it, my daughter is a biochem major at UW working on here senior research thesis and is searching for addtional contacts (I oughta get something back for all those tuition payments!).

That's where we are. Let's slay the Lp(a) dragon!

Regards,


HeartHawk

Hypothyroidism and Heart Disease: Here we go!

Now what?! I just finished clearing up a low blood count and a mild case of anemia (watch your aspirin intake folks - it's hard on the tummy) only to find my Thyroid Stimulating Hormone (TSH) was above normal. TSH is excreted by the pituitary gland and stimulates the thyroid gland (nice video here - after the ad ends) to produce the hormones thyroxine (T4) and triiodothyronine (T3) which in turn is used by various organs and tissues of the of the body. Suffice to say your whole body pretty much needs the stuff (follow or Google these blog links if you want to dig into this stuff). The key here is to realize that a high TSH means low thyroid function or hypothyroidism. The pituitary essentially tries to kick-start the thyroid to secrete more of its hormones by overproducing TSH.

Hypothyroidism has a number of irritating symptoms (severe cases can result in a life threatening condition known as myxedema coma). The most common are fatigue and depression. Here is the list of symptoms from the American Association of Clinical Endocrinologists (AACE) for all of us hypochondriacs:

• Dry skin and cold intolerance
• Yellow skin
• Coarseness or loss of hair
• Hoarseness
• Goiter
• Reflex delay, relaxation phase
• Ataxia
• Constipation
• Memory and mental impairment
• Decreased concentration
• Depression
• Irregular or heavy menses and infertility
• Myalgias
• Hyperlipidemia
• Bradycardia and hypothermia
• Myxedema fluid infiltration of tissues

There is also additional evidence (About.com, American Thyroid Association) to suggest hypothyroidism (as well as hyperthyroidism) can have negative effects on the heart.

The real problem here is when and how to treat sub-clinical or mild hyperthyroidism. AACE has waffled in the past but their most recent statement is typical of head-in-the-sand traditional medicine; esentially, do nothing (gee, thanks, I was already doing that, slowly dying of heart disease, and feeling crappy in the process). Others disagree. Amazingly, the American Academy of Family Physicians (AAFP) makes a cautiously worded statement that suggests treating patients based on their symptoms rather than their TSH levels (what a concept). Mary Shomon (perhaps the "ThyroidHawk" of bloggers) takes a shot at the medical establishment in this article. Doubtlessly, the indifference and incompetence heart disease sufferers face is common among all the halls of traditional medicine.

I'll continue to update you on what happens in my "heart disease and thyroid saga." This is of particular importance to me since I discovered this article that suggests T3 rapidly lowers lipoprotein(a)! Oh, and you know darn well I'll be pestering Doctor Davis to chime in on the subject.

Regards,

HeartHawk

P.S. My next blog will update everyone on how the formation of the Lipoprotein(a) Foundation is coming. Suffice to say I am moving forward.

Vitamin D: The Evidence Keeps Rolling In

I guess I shouldn't be surprised but Dr. Davis of Track Your Plaque continues to demonstrate he is the Nostradamus of heart disease prevention medicine. For the last year he has trumpeted the powerful effects of Vitamin D in regressing plaque and presented his findings in early April at the Experimental Biology Symposium in San Diego.

Now, researchers using data from the National Health and Nutrition Examination Survey (NHANES) study have presented their similar findings at the Arteriosclerosis, Thrombosis and Vascular Biology Annual Conference. They found that persons with low Vitamin D levels have a higher incidence of Peripheral Artery Disease (PAD). PAD, also known as intermittent claudication, is a condition where blood vessels in the extremities become narrowed or occluded by plaque.

Once again, Dr. Davis proves to be ahead of the curve!

Regards,


HeartHawk

More on the Lipoprotein(a) Foundation

Looks like we may be on to something here. We have already had interest from several blog readers about keeping this idea going (see previous blog entry). Here is what has transpired in the past day.

1. Track Your Plaque (TYP) has graciously offered to host the Lipoprotein(a) website. I am meeting with their head web programmer on April 18th to lay the ground work.

2. I am meeting with Mary Lou Ballweg one of the founders of the Endometriosis Association (EA) on April 23rd to pick her brain on how to start and run a successful medical Foundation. Endometriosis was a little known disease and, similar to Lp(a), had little or no research or funding. Mary Lou grew (EA) from a humble start of one person working from her living room to an international association with its own headquarters building. She will be a fantastic resource for us.

3. I have talked briefly with Dr. Davis of TYP and while he cannot become directly involved due to time constraints, he has agreed to help us in any way he is able. He can be our "in" in the medical community.

4. I am about to contact other Lp(a) researchers such as Drs. Marcovina and Scanu to get their input.

The rest is pretty much up to us to keep the "viral marketing" campaign going and build a list of potential members and contributors. I will also attempt to start scaring up a few bucks and will talk to the programmer on the 18th about setting up a PayPal online contributions page as well. The oft repeated bromide is true here, "If every Lp(a) sufferer kicked in just $1, we would have millions." Finally, anybody know any non-profit lawyers and accountants who suffer from Lp(a) and want to help save their own lives? Sooner or later we will have to form a board of directors if we get this thing off the ground. Say, you don't suppose Warren Buffet or Bill Gates has Lp(a) do you?

The Lipoprotein(a) Foundation: Time to Start One?

I just received some disheartening news from Dr. Sally McCormick one of the world's few Lipoprotein(a) researchers. I had asked her how her lead anti-Lp(a) compound was fairing in trials and the answer was not good, "some of the animals were quite sick after dosing with the peptide, we think due to the peptide being unstable and aggregating in the circulation."

On the bright side she also mentioned she is about to publish some preliminary research on DMPC (dimyristoylphosphatidylcholine which is not to be confused with PPC or phosphatidylcholine being studied in the Track Your Plaque Virtual Clinical Trial). Additionally, Dr. McCormick does have one other lead compound in the pipeline but it is not in trials yet.

Sally did make one other statement at the end of her letter that stuck with me, "Sorry I can't be of more help to you and other high Lp(a) sufferers as yet, we are trying to develop something but its just really slow when time and funding is limited." This reminded me of a woman I know (right here in my hometown) with another neglected medical condition called endometriosis. Like Lp(a), few people were doing any research and fewer companies were investing any money in finding a cure. She started the Endometriosis Association to provide support and create pressure to find remedies for persons with her condition and was immensely successful.

Perhaps all of us Lp(a) sufferers should do the same. I have started a 501(c)(3) educational charity in the past - it's not fast or easy thanks to the U.S. government. It takes lawyers (or really knowledgeable people) at least a little money (the filing fee alone is around $500) , and a lot of work to grow the organization. My vision would also include raising a boat load of money to fund independent medical research similar to what is being done by some of the pioneers like Dr. McCormick (I'll bet there are as many wealthy people as poor people slowly dying of Lp(a)).

So there you have it, the Lipoprotein(a) Foundation! I know Track Your Plaque will front us the web presence and let us use their new community/networking software they are developing. Dr. Davis as well as several other professionals associated with Track Your Plaque have expressed interest but they are too busy to start it or run it. Now, can the rest of us develop the critical mass to put something like this together and cure ourselves?!

Regards,

HeartHawk

More on Vitamin D and Testosterone

Lot's of great comments on my last blog concerning Vitamin D and testosterone. A few commenters rightly took me to task for my less than rigorous data regarding the association between my Vitamin D intake and my testosterone level. So, here is what we can say.

1. For my "n of one" study there is an "association" between between Vitamin D and testosterone levels. However, it cannot be concluded it is causative. It could be that can of "Coke Zero" I drink every day that's doing the trick!

2. It is not outrageous to speculate that there could be a link between Vitamin D and testosterone given chemistry. We just cannot prove it with my results. There is some excellent material on Vitamin D pharmacology put out by the Vitamin D Council (really level-headed stuff not marketing hyperbole) and for those who lean toward the "geeky" side this cite from AACC is nice.

3. It is unlikely my low testosterone stayed high several years after stopping my use of topical testosterone. What I really need to do is stop the Vitamin D for several months and re-check my testosterone to see if it goes lower. The problem is that Vitamin D is good for so many other things that it does not seem appropriate to discontinue it. Perhaps a new Track Your Plaque Virtual Clinical Trial might be useful where we measure "before" and "after" testosterone levels.

We certainly need more clinical data on the relationship between Vitamin D and testosterone. We have chicken data (and more chicken data here - what is it with chickens anyway) and we have rat data that suggests Vitamin D increases male (rat) fertility but we just do not have anything that says Vitamin D increases human testosterone (yet).

Anecdotally Yours,

HeartHawk