Thursday, May 29, 2008

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

Wednesday, May 28, 2008

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

Monday, May 19, 2008

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

Friday, May 16, 2008

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

Thursday, May 15, 2008

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

Wednesday, May 14, 2008

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!

Tuesday, May 13, 2008

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

Thursday, May 8, 2008

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.

Wednesday, May 7, 2008

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

Saturday, May 3, 2008

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.

 
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