Nutrtional ignorance is not unique to the U.S.

Heart Scan Blog reader from Australia, Michaela, also a mother of a son with a complex congenital heart defect, wrote this series of e-mails to me. (Published with Michaela's permission.)


I've been reading the article, Valve disease and Vitamin D from April '07, by Dr William Davis. I'm hoping you may have some information on the topic. I'm hoping someone will have time to help me.

I have been supplementing my 15 year old son with Vit D for 4 months but only 1000 (U) per day. I would like to increase the dosage but am not sure if I would do him more harm than good.

I have been researching vitamins and supplements on the net for a few months and have been amazed at what I have found. I only wish I had done it years ago. My son has been let down by the Australian Medical Profession and it's a race against time now to keep him well and avoid a heart transplant.

My son was born with aortic stenosis and had a valvotomy at 4 weeks of age. This damaged the aortic valve and he had a Ross Repair procedure at aged 3. This left him with a damaged heart muscle and leaking aortic & pulmonary valves. In May '08, his heart grew more enlarged, causing the mitral & tricuspid valves to also leak.

I took him to Bangkok in Feb this year where he had 70 million of his own Adult Stem Cells directly injected into his heart muscle with the hope of strengthening the muscle and eventually valve replacement.

My son has recovered from the surgery and is once again symptom-free, thanks to the wonderful advice followed by the Author & Cardiologist, Stephen T. Sinatra. I have followed his supplement regime and what a difference! Of course, this won't last while my son's valves continue to leak.

My son has also developed secondary hyperparathyroidism, bone thinning and hypothyrodism. Vit D & Calcium have something to do with this I believe.

My Australian Doctors have never made mention of any vitamins or supplements .... EVER! Transplant is all they will consider and we are not having it.

If you have any info or links to any sites which may be useful to me, could you email them to me? I would be grateful for any help I could get.

Sincerely
Michaela



I responded to Michaela's e-mail:

Hi, Michaela--

Vitamin D is extremely important. Sometimes, hyperparathyroidism and calcium derangements are caused by vitamin D deficiency. You might be able to get help with this from an endocrinologist, since they are the ones who deal with hyperparathyroidism. An endocrinologist might even be familiar with several recent studies that document this phenomenon:

Vitamin D therapy in patients with primary hyperparathyroidism and hypovitaminosis D

Vitamin D deficiency and primary hyperparathyroidism

Also, see the discussions at www.vitamindcouncil.org from Dr. John Cannell.

Because of the complexity of your son's health, it might be hazardous to stray too far away from conventional care though you and I know that there are limitations to that perspective. For that reason, I would urge you to press for answers from a knowledgeable endocrinologist.

I hope you find the answers you need.

William Davis, MD



Several months later, Michaela provided this update:

Hi Dr Davis,

I wrote to you back in July regarding my 15 year old son's need for a Heart Transplant through a failed Ross Repair and the possible Vitamin D connection. You sent me some valuable links and I thank you again for that.

I just wanted to let you know, I think you have given me the answers. I increased Lee's Vitamin D supplement to 6000U a day and, along with the recommended nutritional supplements of US Cardiologist Dr Stephen T Sinatra, there have been remarkable improvements! Lee also had 70 million of his own Adult Stem Cells injected into his heart in February. As we know, Stem Cell Therapy takes time and Lee was looking like time was quickly running out.

I have removed him from the transplant list. He is now reading normal Kidney function, the BNP (Brain Natriuretic Peptide, a measure of heart failure] has dropped by 7000 and his liver size has reduced to where it no longer causes him discomfort. The liver tests show it's still affected but it's function is improving each month. His last Echo was in early July and there had been a reduction in the size of his heart, which is so important.

To the Doc's, Lee can't get better, there is only transplant or death so you can imagine the surprise on their faces to see him looking and feeling so well with their tests to back it up. Still, even though it's staring them in the face, they don't want to know about it. They have no interest in what supplements he is on or Stem Cell therapy. God help their other patients. I view them in the waiting room and think of them as lambs to the slaughter.

We are not spoiled for choice with Doc's here in Western Australia. I have to take what I can get and there is not many who would take on Lee's case. He was number 1 on the transplant list and a most urgent case. Not many were willing to even look at him with his cardiac history and all I had to help was the arrogant Doc's at the Advanced Heart Failure Unit. They were not at all interested in his secondary hyperparathyroidism. I suppose it didn't matter what else he had compared to his heart problems.

Anyway, I'm writing to thank you. Lee would be transplanted or dead now if it wasn't for Dr's like you sharing their knowledge online. I wish I had researched things years ago, Lee might not have sunk so low if I had. I don't know if the transplant can be held off indefinitely, but like I tell Lee, "Stay well. There are amazing people out there doing amazing things, if you can just hang on. The miracle is around the corner." He's so well, you'd have to see him to believe it. But I have 7 kids and Lee is as physically active and as well as the other 6! For how long he can stay like this, I don't know but if his ejection fraction [a measure of left ventricular strength] can keep climbing and his body gets stronger, I have hope for another attempt at valve replacement.

I'm still shocked and angry that nutritional supplements have never been mentioned in the 15 years I've been dealing with cardiologists. Surely they know about them. I have read through dozens of reports online of the benefits of them--Why haven't they?! Thank God for the online Doc's such as yourself, the valuable info would never make it out of a Doctor's office in Western Australia! I've had to leave my country for Stem Cell therapy and then implore overseas Doc's for advice and information. What does that say for the Australian Medical Profession? Not a lot! They put him in the position he is in yet don't want to help get him out.

I'm so very grateful to you, thank you and God bless.

Michaela



Note: The above is not meant to be an implicit endorsement of stem cell therapy. This was just part of Michaela's story about her son.

Comments (20) -

  • Kismet

    9/28/2009 9:25:53 PM |

    Do you happen to know if there's anything to adult stem cells & heart disease? My take so far has been that they do not work in a stem cell way (bona fide regeneration) and any benefits can be attributed to local secretion of growth factors or other molecules.

  • Andrew

    9/29/2009 12:40:04 AM |

    Absolutely incredible!  Good for them!

  • bettyb

    9/29/2009 1:10:52 AM |

    In Nov 2007 my lab tests showed blood calcium too high. Further tests showed parathyroid hormone too high. I had ultra sound and various scans ordered by the endo. In June 2008 I had one parathyroid gland removed. During this time my Vit D was 25 and 27. The endo was not concerned because "it was winter". I talked my PCP into OKing 1000 iu of Vit D but she said she had never seen the supplement increase the Vit D levels in any of her patients. No advice re D2 vs D3 or tablets vs get caps. Following your advice I am taking 1000 iu D3 gel caps. After some months I increased it to 2000 iu. Of course, I am wondering if the low Vit D might have had some bad affect on the parathyroid. Also I would like to know how much Vit D3 I should be taking but don't have a doc who seems knowledgeable. Any suggestions?

    BettyB

  • Anonymous

    9/29/2009 2:37:35 AM |

    Bettyb,

    Doctor Davis doesn't often have time to answer questions posted at his blog. If you really want to know about how much vitamin D to take and how to get tested, you can learn more at the Vitamin D Council:

    www.vitamindcouncil.org

  • Anonymous

    9/29/2009 4:34:03 AM |

    Congratulations on your magnificent article "Halt on Salt Sparks Iodine Deficiency" for
    October's Life Extension Magazine.  It should be required reading for all Doctors.  
    Iodine is looking like the last piece of the puzzle for me reaching 60/60/60 without statins.  Thanks
    for fighting the hard fight.

    Matt W.

  • Dave Ruckle

    9/29/2009 4:38:25 AM |

    I have heard that excitement is a risk for heart patients. But this funny Cartoon says it excitment can kill anybody. See this cartoon

  • Maggie

    9/29/2009 5:50:49 AM |

    Thought I'd share this article from the UK about Vitamin D. I remain shocked some in the medical profession (or should that be industry) still do not understand the importance of D3 for children, and of course adults.

    http://www.telegraph.co.uk/health/children_shealth/3350394/Why-vitamin-D-is-so-vital.html

  • Anne

    9/29/2009 7:08:43 AM |

    I was very interested to read this post because I too have a congenital heart defect (not nearly as bad as this boy) which has led to aortic valve stenosis and I've been keen to know how much vitamin D might help with this since 2007 when I first started following Dr Davis' blog.

    I live in the UK and I'm lucky that I have both a good cardiologist and good endocrinologist. My endocrinologist is keen for me to supplement with vitamin D3, both for my heart and for osteoporosis, which I also have, and I get regular 25(OH)D tests. I take 2,000 IU of D3 gelcaps per day and my level of 25(OH)D varies between 125 nmol/L (50 ng/dl) and 250 nmol/L (100 ng/dl), once rising as high as 384 nmol/L (154 ng/dl) so it's lucky a close eye is kept on these levels so my dosage of D3 can be adjusted. Lab error was thought, but every time the 25(OH)D has risen too high my alkaline phosphatase levels (bone specific) have also risen above normal, and every time the 25(OH)D is lower they are in the normal range.

    My cardiologist is also supportive of the D3 as well as supportive of me using omega-3 fish oil and he prescribes it for me since it works out cheaper on prescription here in the UK than it does from a health food store.

    The pressure gradient across my heart is increasing gradually and I will need an aortic valve replacement at some point...but who knows, things might have got worse faster without the D and the fish oils.

    Anne

  • vin

    9/29/2009 12:27:44 PM |

    Bettyb,
    I started on 1000iu of vitmain D3 then upped it to 2000, 5000 and 10000iu per day. At this dose my vitamin D results had achieved the magic 50 level. It is now six months since being on 10000iu and I am feeling fine. No side effects that I am aware of.

  • Anonymous

    9/29/2009 12:30:24 PM |

    It's no wonder there is nutritional ignorance among MDs worldwide as they have only 1-2 nutrition classes during their training.  

    We need to empower those who do have the training and education by expanding their resources and accessibility to patients.  Nutrition needs to be recognized as a vital part of healthcare, needs required post-graduate training for specialization in various disease states, and needs to be covered by insurance.

  • Tom

    9/29/2009 2:50:36 PM |

    I agree that ignorance about nutrition is mainstream, however the problem seems to run deeper than this.

    Taking supplements of any kind is thought to be unnatural and a compromise of some kind. Only nutrients from fresh food (preferably organic, local produce) are considered valid by the progressive class here in the UK. Supplements are pills and therefore are evil 'chemicals' and products of greedy pharmaceutical companies.
    One or two vitamins/nutrients no doubt *are* poorly absorbed when isolated in pill form. This argument is used to condemn all supplements. Repeated headlines appear in the MSM which intimate that taking vitamins is actually harmful.

    I'm trying to explain the feelings that cause many otherwise thoughtful people not to supplement. If it sounds vague and illogical that's because it is.

    For example, in the cases of at least four of the most helpful supplements (vitamin d3, iodine, magnesium, vitamin k2), for most people it simply isn't feasible to obtain optimum amounts *without* supplementation.

    Yet fashionable orthodoxy tends to prevent them from supplementating.

    The importance of Omega-3 fatty acids is more widely accepted. If you examine it carefully, mainstream advice recommends averaging 2-3g per day without supplementation. It's very hard to take this seriously.

    The weight of mackerel and oily fish you would have to eat is staggering.

    It's a kind of doublethink.

  • Dr. William Davis

    9/29/2009 4:56:42 PM |

    Hi, Kismet--

    This post wasn't meant to endorse nor critizie stem cell therapy for heart disease, something I have no experience nor strong opinions about.

    Here's a paper on it:

    http://www.ncbi.nlm.nih.gov/pubmed/19274033

  • Dr. William Davis

    9/29/2009 4:58:05 PM |

    Betty--

    You really need to find a helpful healthcare provider who can coach you through the vitamin D and calcium issues. This is something you shouldn't do without assistance when calcium issues are involved.  

    However, we have seen many cases of "secondary" hyperparathyroidism improve with vitamin D supplementation. Dosing is by blood levels, particularly important in your situation.

  • billye

    9/30/2009 2:07:44 AM |

    Michaela,
    I read a post today that you should be interested in.  It is relative to ejection fraction and how blueberries increased EF by 82%.  You will find it at "nephropal.blogspot.com".  Dr. T is a nephrologist who is the author of the blog.  He is one of those brave hearts like Dr. Davis who is interested in helping people.

  • Tashi Cardio Pro Capsules

    9/30/2009 6:33:55 AM |

    Safe Remedy for Heart Patients:Tashi Cardio Pro Capsules developed by face doctor is really a great help for most of the heart patients.

  • Daddy

    9/30/2009 6:49:32 AM |

    How cool to be able to give that to someone, to change their life with an email.

  • denparser

    9/30/2009 9:53:44 AM |

    wew. it's not a good story..

  • Dr. William Davis

    9/30/2009 12:13:04 PM |

    Hi, Tom--

    This is why we need to stage a "revolt" in the form of self-directed health, putting many strategies, including access to nutritional supplements, out of conventional healthcare and in the hands of everybody. This includes access to lab services, even diagnostic testing.

  • Anonymous

    9/30/2009 6:10:29 PM |

    Off-topic, Dr. Davis, but this will be your new favorite photograph:

    http://www.frigginrandom.com/images/beer-belly-master/

  • Bill

    10/1/2009 2:54:42 PM |

    Lifting of Calcium Scan Ignorance?

    http://www.sciencedaily.com/releases/2009/09/090930102536.htm

    The ScienceDaily Press Release article is below.  You probably already knew this, but, just in case.

    Calcium Scans May Be Effective Screening Tool For Heart Disease

    ScienceDaily (Oct. 1, 2009) — A simple, non-invasive test appears to be an effective screening tool for identifying patients with silent heart disease who are at risk for a heart attack or sudden death. Coronary artery calcium scans can be done without triggering excessive additional testing and costs, according to the multi-center EISNER (Early Identification of Subclinical Atherosclerosis by Noninvasive Imaging Research) study, led by investigators at the Cedars-Sinai Heart Institute.

    The findings appear in the September 30 issue of the Journal of the American College of Cardiology.

    Coronary artery calcium scans that detect plaque in the coronary arteries have been shown to be more effective than standard cholesterol and blood pressure measurements in identifying patients who are most vulnerable to heart disease. Currently, these scans are not covered by private insurance carriers, in part because of concerns that detection of low levels of cardiovascular disease will result in unnecessary and expensive further testing, including exercise imaging and invasive cardiac catheterization procedures. "Over half of patients who suffer heart attacks have no warning that they have heart disease until the heart attack occurs. If we knew the patients were at risk, current treatments could prevent the majority of these unnecessary events. We had to address the concerns about unnecessary testing and costs related to this potentially lifesaving procedure," said Daniel S. Berman, M.D., the study's principal investigator and chief of Cardiac Imaging at Cedars-Sinai's S. Mark Taper Foundation Imaging Center in Los Angeles.

    In the EISNER study, supported by The Eisner Foundation, researchers performed coronary calcium scans on 1,361 volunteers at intermediate risk for coronary artery disease, and followed them over a four-year period, from May 2001 to June 2005. The objective was to determine the relationship between coronary artery calcium scores and subsequent cardiac events and to evaluate the performance of additional cardiac diagnostic testing. Coronary artery calcium scores of 0 indicate no plaque, 1-9 minimal, 10-99 mild, 100-399 moderate, 400-999 extensive, and 1,000 or more very extensive plaque.

    SNIP
    Recent evidence has demonstrated that screening with coronary artery calcium is a better prognosticator of risk than the Framingham Risk Score—the traditional way of assessing risk based on blood testing and blood pressure--in middle aged and elderly patients. Yet controversy surrounds expansion of cardiac screening to include coronary calcium scanning imaging because of concerns that the extra costs may not outweigh the benefits. The findings of the EISNER study, the researchers note, is the first direct evidence that coronary artery calcium scanning could be an acceptable cost-effective screening test for coronary artery disease, since it is able to identify high risk subgroups in need of aggressive medical treatment, and patients who undergo additional testing constitute only a small fraction of the screened population.

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