“I can’t believe, I’m going to lose all that blood,” said Nicole.
Two weekends ago we found ourselves staring at Nicole’s home dialysis machine. A mixture of air bubbles and bright red blood filled the transparent plastic tubes. This had happened once before in the last six months. Everything Nicole tried to remedy the problem only made it worse.
So Nicole cut her loses and removed herself from the machine. She probably lost a liter of blood. Considering how much she struggles to keep her hemoglobin levels within bare minimal range, this didn’t look good.
One of the jobs of the kidneys is to decide how much hemoglobin your body should produce. It constantly monitors levels in the blood. Or, at least it should. When the kidneys have failed, keeping hemoglobin production up is a challenge. A drug which artificially stimulates production of the hormone erythropoietin (AKA Lance Armstrong’s secret weapon) needs to be injected. Unfortunately, the drug is so dangerous even doctors (but not Lance) prefer to use the bare minimal dose. This means Nicole’s hemoglobin levels are maintained at 75% sufficiency. Not much margin for error.
Since beginning Buteyko breathing exercises, Nicole has actually seen months where her hemoglobin has increased by a few points. Normally, it would decline over a three month period, until she needed a blood transfusion. Since starting breathing retraining, she hadn’t needed any blood transfusion in over six months. Until last week.
First, keep in mind, that dialysis treatment – on a good day – always removes some blood from the body. Secondly, this month Nicole went through ten days of menstruation. Thirdly, Nicole has two to four vials of blood drawn each month for blood tests. Add to all that a liter of blood being lost and it’s no surprise her hemoglobin levels dropped dangerously low.
Nicole had little choice but to check into Stratford General for a Red Cross special. Two days after the transfusion she felt much better.
Unfortunately, the battle doesn’t end there. Her current nephrologists (there’s three of them, including the resident) are pushing for her to start taking intravenous iron treatment. We looked into this two years ago and decided it was the wrong direction. Nicole’s previous doctor didn’t argue with our decision and agreed to quarterly blood transfusions if Nicole needed them.
Her current doctors, however, aren’t as agreeable. Nicole needs to see at least two out of three them today. So she’s going in armed with well-documented reasons why IV iron probably won’t help (and will most likely cause serious side effects). Here’s a copy of the letter we wrote…
To Whom it May Concern:
We have seriously considered the option of intravenous iron treatment to help maintain Nicole’s hemoglobin levels. For the following reasons we choose not to use this approach:
1. We’re aware that Nicole’s blood tests show low ferritin levels. Nonetheless, studies, such as one found in the January 2009 issue of Kidney International (Variability of ferritin measurements in chronic kidney disease), have found that ferritin is not a reliable marker. The study concluded that “serum ferritin values should not be used to guide clinical decisions regarding treatment of chronic hemodialysis patients with intravenous iron due to significant analytical and intraindividual variability.”
2. A 2014 article in Nephrology Dialysis Transplantation (Iron Toxicity: Relevance for Dialysis Patients) acknowledged the clear improvement in hemoglobin levels and reduction in ESA among patients who used IV iron supplementation. However, it also states that “studies have not indicated any patient-centered benefit.” Considering the risks (outlined below) associated with injecting iron gluconate directly into the bloodstream, it seems no surprise that any possible benefits are outweighed by the negative side effects.
3. It appears well recognized that blood loss, and not dietary iron deficiency, is sometimes the cause of low hemoglobin in hemodialysis patients. Unlike male or post-menopausal female dialysis patients, Nicole still menstruates (sometimes for 10 days each month). Combined with blood loss during normal dialysis treatments, blood tests and more severe blood loss when a dialysis sessions has to be stopped prematurely, it seems blood depletion might be the cause of her low hemoglobin levels.
4. According to an 2007 article in The Journal of Clinical Investigation (Hepcidin regulation: ironing out the details), hepciden regulates iron levels in the blood stream. It does this by inhibiting absorption of iron from the intestine. Therefore, by bypassing the gastrointestinal tract with intravenous injections we also bypass the ability of hepciden to protect against iron overload.
5. The previous point is particularly alarming, when we read that the average dose of intravenous iron is 100mg. This is 100 times higher than the typical daily amount absorbed from diet.
6. A 2012 article in The American Journal of Medicine (Hemodialysis-associated hemosiderosis in the era of erythropoiesis-stimulating agent) detailed the results of a French study of 119 hemodialysis patients receiving both ESA and IV iron. 84% showed mild to moderate iron toxicity of the liver. 36% of those had severe iron overload. The results were determined using an MRI. The study called for a “a revision of guidelines on iron therapy in this setting.”
7. A 1980s article in the Journal of the American Medical Association (Hemosiderosis in Hemodialysis Patients) reports on the autopsies of 50 hemodialysis patients. In addition to finding “massive iron deposits” in the liver and spleen, the lungs, lymph nodes and adrenal glands contained “abundant” iron deposits.
8. “A single intravenous injection of iron dextran increased oxidative stress in the cardiovascular tissue” of rats, according to a 2002 article (The effects of iron dextran on the oxidative stress in cardiovascular tissues of rats with chronic renal failure) in Kidney International. This South Korean study concluded that intravanous iron pointed “to heightened susceptibility to iron-mediated toxicity.”
9. In theory, such oxidative stress could damage the vascular system and cause atherosclerosis. A 2002 Netherland study in the 2002 issue of The European Journal of Clinical investigation (Ferric saccharate induces oxygen radical stress and endothelial dysfunction in vivo) concluded that intravenous iron causes “acute endothelial dysfunction” by restricting dilation of blood vessels.
10. Various studies (including Risk factors for bacterial infections in chronic haemodialysis in the 1995 issue of Nephrology Dialysis Transplant) have found that intravenous iron use is associated with the growth of infections in the body. It’s theorized that because iron promotes microbial growth, directly injecting it into the body bypasses safeguards that would normally sequester iron away from infection.
The 2014 article, Iron Toxicity: Relevance for Dialysis Patients, in Nephrology Dialysis Transplantation concludes that “Safety concerns are heightened by the pervasive use of IV iron in hemodialysis patients… Patient-centered benefits and risks are poorly understood. Because there is potential for toxicity of treatment, and because intravenous iron treatment is widespread, there is a need for a well-powered study of sufficient duration to better define the role of intravenous iron treatment.”
If we can be provided with new information that invalidates the above points, we would be very willing to review it. Otherwise, for the above ten reasons, Nicole has decided to not accept intravenous iron treatments. We request that blood transfusions be made available to her when and if her hemoglobin levels become unacceptably low.
Thank you for your understanding and continued help.
Nicole & John Manley
Please keep in mind, that we are not against every recommendation made by Nicole’s doctors. For example, Nicole uses a blood thinner medication that appears necessary to avoid blood clotting during dialysis. Of course, we probably shouldn’t assume that to be true either…
Thinking outside the type-1 matrix,
–John C. A. Manley
P.S. We had a similar incident regarding a prescription of potassium binders. You can read my last letter to Nicole’s previous nephrologist: 12 Reasons To Avoid Potassium-Binders. You may also like to read Does Iron Toxicity Cause Kidney Failure? and The Three Amigos: How Iron, Manganese and Aluminum Toxicity May Contribute to Type-1 Diabetes.
P.P.S. If you would like to know more about how we are working to reverse Nicole’s kidney failure and get her off dialysis, you can book a telephone or Skype appointment..