Bloodletting

I was glad that Cecil addressed the question of therapeutic phlebotomies (bloodlettings), and I’m here to tell you that regular blood donation certainly CAN improve your health. I suffer from one of the conditions Cecil mentioned: hereditary hemochromatosis, which causes excess iron to be absorbed into the tissues of my liver, heart, etc. I’m only 29, so luckily it was diagnosed early enough that I will probably suffer no symptoms, provided I get about four phlebotomies a year for the rest of my life. (As compared to when I was first diagnosed, when I had to have 350ml of blood drained every WEEK for about 40 weeks in a row - which would have killed a normal human - to get my iron level to drop.)

As a result of what I admit is an odd (but necessary) therapy, not only will I not die of liver cancer or heart attack in my forties due to the effects of HH, but as a bonus: my cholesterol level is lower than ever (without really changing my diet, which I know I shoud); my immune system has improved (I usually get about five colds a year, this past year I had NONE); I have more energy; and according to my doctor I probably have less of a chance of having a heart attack than someone else of exactly my height, weight, diet & habits who doesn’t donate! Plus other more “ethereal” things: more energy, clearer thinking, etc.

Now, as an avid Dope reader, I know that it is not wise to take a single case study and extrapolate to make a sweeping conclusion. But (and Cecil did sort of point this out, I’m not saying he’s wrong) I’m convinced that bloodletting would have helped me even if I didn’t have HH.

Anyway, this is my first post, hope I did okay…

You did fine, Drop! (Can I call you Drop?)

Cecil’s column is
Does giving blood reduce your chances of getting heart disease? (28-Apr-2000)

Call me anything you want, Arnie - just don’t call me with an exciting offer for long distance service. (Especially during dinner.)

You know what I left out of my original post ('cause I thought it’d be too long)? The fact that the blood of HH patients is thrown away, even though it’s perfectly good blood! The blood banks (who admit that there’s nothing intrinsically wrong with the blood, excpet elevated iron levels which will not harm those in need of a transfusion, and in many people would actually be beneficial!) don’t want to take blood from people who are not “willing donors”. In other words, because I get some benefit from giving blood, they don’t want it. This is the same reason they stopped paying for donations.
I think the premise is that if you have something to gain by donating (i.e., I’d have to PAY someone to do it otherwise), then I might withhold information (like HIV or Hepatitis status, I suppose) that would disallow me from donating. This is specious reasoning, assuming I’m right about what the word “specious” means. Blood can always be tested for such things, and even if it’s problematic, isn’t it a small price to pay for opening up the blood… I mean, FLOODgates to a whole group of people who are already having blood removed?

There are silly laws on the books that prevent this from happening. I’ve heard rumblings that these laws are being changed in some states, but these things take forever, and meanwhile blood is being wasted!

I guess it’s a case of “let them use platelets”…

later

P.S. I can call you Arnie, right?

 I do agree that it's silly to throw away blood from patients like you. However, there's a good reason for only taking blood from non-paying donors--they found the quality is higher.

 Blood tests work fine for those diseases we have identified. They don't work on things we haven't yet identified. (Example: The mad cow agent has not been identified. There's still some argument over what it is, even.)

Jason Payne states “This smacks of the days when leeches were used to cure illness”.

Leeches used to be used for a variety of ailments, and the surprising thing is, are coming back into vogue.

My medical in-laws tell me that they release a chemical that helps to thin the blood and therefore reduces the risk of thrombosis or clotting in the blood (that causes strokes). They are used for patients who cannot use conventional medecine, and are perceived as being less traumatic for the body.

The really scary use of insects is not leeches; it’s maggots.

These are put onto necrotic flesh (that has died through gangrene or whatever) and they chomp away very efficiently, becoming very fat. When they have eaten all the dead flesh, you just pull them off. Honest - the BBC did a documentary on it a few months ago.

This is my first post too - thought it was time to give something back to The Straight Dope after taking for so long…

Loren:

Can’t say I disagree with your post. All I’m saying is that the only difference between people with HH (who need phlebotomies) like me and a volunteer donor off the street is that it happens to help us when we give blood. I actually have donated blood since I was diagnosed, and I did not have to lie on the form, because HH is not one the diseases they ask about. It’s not communicable (it’s purely genetic), it’s really not even considered a disease (it’s a “condition”), and it doesn’t do anything to “taint” the blood. What I mean is, when we’re in aggressive treatment and having blood drained every week for months on end, it’s thrown out! I’ve already paid the phlebotomist, so I’m not “gaining” anything from giving the blood to a blood bank.

As for things we aren’t able to test for yet - well, the same rule applies to anyone! Actually, my blood is tested by my doctor all the time - so I’m actually a SAFER donor than an average person, because I can document continuing blood tests - they don’t just take my blood and check it later, like they do for average people.
Bwanasimba:

The only problem with leeches for me is - they don’t take enough! I need to have about 350ml of blood taken at a time, and that would take quite a few leeches! Otherwise, yeah what the heck, I’d use 'em.
I saw a “maggot doctor” story too. Nasty. But it makes sense, they eat dead flesh. Supposedly they make capillaries regrow that otherwise wouldn’t.

Interesting stuff…

Yes and no. Even where there are tests, there is frequently a “window period” where you are infectious, but current testin does not show it.

A test for antibodies, for example, will give a false negative if you haven’t yet developed any.

This is still a problem for HIV and various types of hepatitis: all the test can show is that you weren’t infected a month (or whatever) ago.

There are also lots of things we don’t have tests for, including some types of hepatitis (who knows how many there are) and the prion disease CJD (human variant of mad cow disease).

picmr

Picmr:

I’m not debating any of what you said - but if you saw my most recent post, you’ll see I ponted out that since my blood is continually being tested, I’m probably a safer bet than someone who just comes in to donate and leaves.

I’m just glad this topic is being discussed!

There are still centers that pay for blood products, mostly plasma. But the rule is still applied. The blood products can not be used for patients. But they are used for research.

Seems like hematologists should be thrilled to study blood from HH patients. It should be possible to study it the same as ‘normal’ blood, and also use it to study HH itself.

So even if they stick to the rule of not using the blood for transfusions, it’s just wrong to toss it out.

So far I haven’t seen any arguments that convince me that a blood center would be justified in rejecting Drop’s (hi Drop! Arnie here) blood for a donation. On the other hand, how much blood is gathered from hereditary hemochromatosis patients? It’s probably just a drop in the bucket compared to the total amount of blood donations. So agencies might not think it worth the trouble of refining the blood donation rules to say “we don’t take blood from people from non-willing donors, except HH patients.” It does seem a shame to waste it though.

Arnie:
re: “…how much blood is gathered from hereditary hemochromatosis patients? It’s probably just a drop in the bucket compared to the total amount of blood donations.”

Actually, I have heard it quoted (on an HH-oriented website) that HH patients could wipe out blood shortages (and there are shortages nationwide I believe, and here in NYC I know) overnight. Granted, there could be some exaggeration there, to convince lawmakers to change the laws, but there are a LOT of people like me out there (I’ve heard estimates or one or two million people, roughly 1 in 200). So while I enjoyed your “drop” reference, I think it would make an appreciable difference. (Remember, during the aggressive phase, we give every WEEK or two, instead of every few months!)
Also, I don’t see why it would be so hard to say (in better words, I hope) “we don’t pay for donations, but if you need to have it done anyway, we aren’t going to refuse you just because you would have to pay someone else to have it done.”
Saltire:
While I take no umbrage at your differentiating between my blood and “normal” blood, I would like to point out (again, see my second post) that even the blood banks admit that there is nothing wrong with the blood itself; it’s the motives of the donor that cause them to chuck it into the hazardous waste pile. As I said, I have donated blood the way anyone else would, and no red flags went up (and I was under no obligation to reveal my HH identity), the blood was taken and I presume used to save a life. So why it makes a difference that a week earlier the blood was being taken for medical purposes is beyond me.

Actually, I do see one reason why it may not happen - if it were handled wrong in the press, that the Red Cross (or blood banks) were accepting blood Phlebotomized from people with HH, the uninformed public might panic, etc. A public relations nightmare. And once an idea like that gets into the public consciousness, no amount of truth/facts will get that image out of their heads. As Cecil knows so well, the teeming millions are smart, but the the thriving billions can be a dense lot.

Dear Mr. Adams,

I read your article about “Bloodletting” in the Worcester Phoenix last week. At first I was elated to see phlebotomies and iron receiving long overdue attention by the press, albeit minor. But after reading your article I was completely taken aback by your cavalier attitude for a therapy that is relatively simple, non-invasive and does not require ingestion of chemicals. Therapeutic phlebotomies are essential for the health and well being of millions around the world who suffer from iron overloading in its various forms. Furthermore, I was appalled that as a journalist you used several of your supporting statements to denigrate the “iron hypothesis”, flagrantly misstate current federal regulations regarding the use of therapeutically drawn blood and discount iron disorders as being “exotic”

One iron disorder, Hemochromatosis, according to the Center for Disease Control (CDC), is the most common metabolic disorder in the United States today. ( http://www.cdc.gov/genetics/publications/hemoch.htm ) Conservatively, there are over 1 million Americans (1 in 300) with this disorder and 30 times that number who are carriers of this genetic disorder. Furthermore, if one’s heritage happens to be Celtic, such as Irish, English, or Scotch, the ratios are considerably higher. I’m certain you can extrapolate the numbers on an international basis, if you consider the immigrant origins of Canada and Australia, to name a few countries. Many of these Americans, Canadians and Australians will require, at some time in their life, this “medieval” procedure to prolong their life and, if diagnosed early enough, prevent severe morbidity, thus improving the quality of their lives. In light of this, a wise person would have to conclude that at least one of the iron disorders, Hemochromatosis, is a relatively common occurrence rather than “exotic”.

By the way! Is Adams a name that is Celtic in origin? If so, I’d be concerned.

Rather than taking a position on Dr. Sullivan’s iron hypothesis, I’d like to point out that your reference to Dr. Meyers’ study failed to mention that it is over 2 years old. His study was published in the August 1997 issue of the journal Heart. There have been considerably more studies published since 1997, a majority in support of Dr. Sullivan’s theory. I’m not sure what you read in Dr. Meyers’ study, but the following quote, appears to diametrically oppose your inference of non-support for the iron hypothesis.

 "What this means for men is - if you donate blood, in a sense you can become a virtual woman and protect
 yourself from heart disease," said Meyers. "We have identified another reason for blood donation, beyond
 altruism, for men." ( http://www.newswise.com/articles/1997/8/BLOODONR.KU.html )

I’d like to take this opportunity to direct you towards a more recent study in support of Dr. Sullivan’s Iron Hypothesis: http://hemochromatose.tripod.com/cardio.html

Naughty, naughty, naughty! The Feds don’t appreciate having their rules reinterpreted to suit one’s personal views by anyone except insiders. Besides, ignorance of the law is not an acceptable excuse. Recent changes to FDA regulations have approved the reuse of therapeutic blood drawn from donors or patients who have Hemochromatosis. The following is an excerpt from the response to the Director, Mt. Sinai Blood Bank in New York from the FDA’s Director, Office of Blood, dated November 10, 1999:

 “Your submissions dated August 30, 1999 and October 13, 1999 requesting a variance from 21 CFR 640.3 (d)
 under the provisions of 21 CFR 640.120 to collect blood and blood components from donors with hereditary
 hemochromatosis, without special labeling have been reviewed, approved and placed in your registration file.”

That’s hardly a federal directive to discard therapeutic blood drawn from Hemochromatosis patients.

Many people from the medical community and volunteer organizations along with individuals have battled long and hard to see otherwise very healthy blood from Hemochromatosis patients be used for the benefit of others rather than be relegated to a toxic dump. Given the number of Americans affected by iron overloading, it would be safe to assume that there may be one or two journalists who would not be appreciative of your skepticism. Please don’t belittle this tremendous success by perpetuating deceptive half-truths and innuendo to serve your interests.

The “toxic levels” of iron you refer to, not only leads to heart failure, but many other debilitating and documented conditions; such as, cirrhosis of the liver, liver cancer, arthritis, impotence and extreme fatigue, to mention a few. Mortality can also be the result of excess iron, be it iron overloading or Hemochromatosis, especially when iron has not been recognized as the culprit. Iron is often the underlying cause of these conditions, yet may not be detected until an autopsy has been performed, if then. Individuals who have been diagnosed with Hemochromatosis consider themselves fortunate to have such a “barbaric” treatment, which can prevent most of these ailments, certainly death, with an early diagnosis. In some cases, the reduction of iron stores may reverse organ damage, at a minimum cease progressive damage. I consider myself among the more fortunate.

The real tragedy resulting from your article on “Bloodletting” is that many people in your audience who are completely unaware of their genetic inheritance will believe your tirade, including family members of those who have been diagnosed. Consequently, they will refuse to seek the appropriate medical attention. Equally as important, you have reinforced the beliefs of many medical practitioners whose medical currency is questionable regarding the diagnosis of iron disorder, specifically Hemochromatosis. Pity!

Your ability to incite emotions on a variety of subjects is remarkable and certainly admirable. However, I was under-whelmed by your blatant lack of attention to detail and truth. With that in mind, I would hope that in the future you would complete your homework prior to meeting your deadline. Knowing this is after the fact, I’d encourage you to explore a world class collection of medical treatises and articles on the subject of iron overloading:
http://members.tripod.com/~hemochromatose/linkseng.html

Mr. Adams, I look forward to my monthly “bloodletting”, not because I enjoy being stuck with a large needle, but because I love life. What I don’t appreciate is having a life-saving treatment being scorned, especially since it has served me well, along with many more in similar circumstances.

In fact, I choose to always be “a quart low”. My dipstick has measured low for the past 20 years. Thankfully, I enjoy excellent health because of it.

Respectfully,
Jim Hines
aka “The Rusty Curmudgeon”

Well, Rusty, it’s a pleasure to meet a fellow bleeder! (And I’m an Irish one at that - HH is called “The Irish Illness”.)

It’s good to see that the FDA is coming around an the issue of using HH patients’ blood - it makes perfect sense, which is of course why it took the government so long to do anything about it.

I think you were a bit harsh on Uncle Cecil, though… But I AM in agreement with you that HH is neither exotic nor rare (apparently one in 8 people are a “carrier” of the gene!) To be honest though, I had never heard of it when I was diagnosed, and I was mildly horrified to hear what the treatment would be. But I quickly became comfortable with it; and while I wouldn’t say I “look forward” to them as you do, I do understand that phlebotomies saved my life, no exaggeration.

Til we bleed again…

Welcome new members bwanasimba, DropOfaHat, RustyCurmudgeon.

bwanasimba said:

Yes they are. Not only to thin blood, but they are aslo useful in reattaching limbs, especially fingers. They help draw blood into the reattached limb, restoring circulation through the capillaries, helping the finger stay viable.

Yes, they are starting to use maggots more, too. This is discussed on another thread around here somewhere, I think in GQ. The thing to note (as brought up there) is that there are many kinds of maggots. The medical type is one species of maggot that only eats necrotic tissue, and then they use specially bred maggots that are sterile, and control the quantity. It is safe and very effective. It is a bit gross to think about or see, but has benefits that the maggots can efficiently remove the dead tissue that you cannot get to easily by surgery, it is much less invasive, and can prevent the need to amputate such as with gangrene.

Both of these uses do sound pretty “medieval”, but it is interesting that they are more efficient than standard techniques. All in all a smart use of nature.

RustyCurmudgeon, I appreciate your interest in the topic from a personal perspective and your thorough response. I wonder if Cecil will respond himself. I would, however, suggest that you were a little harsh in your response and did not take into consideration the whole column. First, Cecil’s comments were mostly aimed at the general position of blood donation, not the specific cases. Okay, you provided some information that may be new supporting that hypothesis.

Second, you should be aware that Cecil’s tone is often laced with sarcasm and wit. Take that for what it’s worth.

Third, you focused on the details of some of the special cases of diseases treated by blood removal. Cecil did gloss over the details on those conditions, but the article really was not about those conditions. His tone regarding them was supportive of use in the conditions listed.

Your additional information on those topics was appreciated, and very helpful. But I think your criticisms were off the mark.

However, there is another thread discussing this topic, making many of the same points. It is here:
Cecil is Wrong

 The uses I've heard of for leeches is that they can drain blood from an area that's got too much--such as healing after damage to the veins. A doctor needs a decent sized blood vessel to drain from, the leech doesn't.
 However, the paid donors tend to have more medical problems, and thus are more likely to have some of the stuff that we haven't identified yet.
 Think of how many hepatitis C cases there would be if they had been paying donors. It was only identified in 1989 IIRC, and it's very contagious by a blood vector.

 I do agree that your case is special, but there aren't enough such patients to prompt a change in the law.

Loren:

you said: “I do agree that your case is special, but there aren’t enough such patients to prompt a change in the law.”

I’m sorry, but you’re wrong! Read back over a few of the posts in this thread (and the “Cecil Is Wrong” thread). Go to some of the links that are provided. To sum up the facts: roughly one in 200 people actually has HH (at least one million or more people in the U.S.), higher among people of Celtic descent; roughly one in 8 people carry the gene (it’s autosomal recessive, so both parents have to have it, and their kids have a 1/4 chance of getting it.) Many people never know they have it (it’s not regularly screeed for), but even if you only go by diagnosed cases (there may be as many as three or four times as many undiagnosed as diagnosed!!) it’s hardly “rare” or “exotic”. In fact, it’s the number one genetic killer in the U.S.!! (Many people who die of “heart attacks” or “liver cancer” and other such things actually can trace the reason for the tissue damage to HH, but it’s never diagnosed.)

Not only are there indeed a lot of us out there, but we HAVE to give blood at least four or five times a year (that’s only when your in “maintenance” - in the aggressive phase of treatment it’s every WEEK!) - PLUS (as I’ve pointed out before) our blood is continually monitored, so we are IDEAL donors.

And to put the final proverbial nail in your statement, look at the Rusty Irishman’s post in this thread - apparently there is already legislation in the works to rectify the situation.

If the HH websites are correct, HH patients could wipe out the blood shortages overnight. We have to have blood removed anyway, and we are more than happy to see it save lives instead of going to waste.

Peace all.

I just wanted you all to know that the reason I put ‘normal’ in quotes was to highlight the intentionally improper use I was making of the term. I consider HH blood to be fully normal (based on what little I know of the condition), and I was only distinguishing it because the blood donation rules apparently make that distinction.

You may be right about the thriving billions (I like that phrase, BTW. We’ll have to use it more around here.). This is the same public that often believes you can contract blood-born pathogens by donating (when the only blood involved is your own). These people are the types that won’t donate anyway, since they will take any hare-brained idea as an excuse to avoid it.

Totally off topic: this is my 100th post. It took me months to come up with that many things to say.

Saltire:

I meant it when I said I take no umbrage - I know why you put “normal” in “quotes” - I was just “busting chops” a little. (It seems to go on a lot around here, I’m just trying to keep up!) Of COURSE it’s not normal to have to have blood drained from your body! (I’m pretty used to it by now - but every once in a while it strikes me as very very odd…) But I thought you were sort of buying into the differentiating that the blood banks do - i.e., “my blood’s different because I NEED to have it removed”. It seems you weren’t, which is great.

I’m sure it’s more of a political issue than a medical one - which sucks big time.

But I don’t want to beat off a dead horse here…

Incidentally, Saltire, your sign-off quote is quite apt for this thread!

[[But I don’t want to beat off a dead horse here… ]]

Yeah, that would be pointless.