Correcting the Response to the Blood Clots Risk in Some Vaccines

 

Photo by Anna Shvets from Pexels

I'm not a health professional, or a teenager, but the popular media response to the Blood Clots news is WICKETTY WHACK!  We're doing good confusing everyone.  Full points for good old American doublespeak in the news.  Let me try and correct the confusion, because it doesn't take much science confidence to figure out what the wrongness is.  Let me take a moment out of the usual stream of Celiac articles because I do have personal experience with life threatening blood clots.  I'm not going to claim that I can explain every detail or that I know as much as Dr. Fauci, but I can understand thrombotic thrombocytopenia just fine, at a layman's level. And you can too.

UPDATE:  The expert panel voted 10-4 with one abstention to allow the J&J vaccine to be given once more, with a warning to women of childbearing age who may be taking birth control drugs that also increase blood clot risk.  Please don't understate the seriousness of the problem just because it's extremely rare.  But also, remember that the problem is extremely rare so it's not a reason to avoid the vaccine.  In most cases, if you're concerned, you will have an option of a different vaccine. Read on for more information.

There are three basic types of vaccines to prevent Covid-19

  1. Adenovirus Based -- Johnson and Jonson's vaccine is based on Adenovirus, so is Astra Zeneca's, Sputnik (based on two different adenoviruses), Covax, and Covishield. J&J and AZ have been in the news with blood clot risks.
  2. mRNA Based -- The Pfizer and Moderna vaccines are mRNA based and do not seem to carry blood clot risks.  
  3. Inactive SARS Cov-2 Based -- Not sure if  blood clot risks have been reported with Sinopharm vaccines, which are based on inactivated SARS Cov-2 virus (this is the virus name, the disease name is Covid-19). It's theoretically possible since Covid causes clots(from last May).

The only two I've seen frequently in the news with blood clot risks are AstraZeneca and J&J, but I hope all countries that use adenovirus type vaccines keep track of blood clotting events in case it's affecting the entire class.  

Keep in mind that Covid-19 causes blood clots too and at much higher rates than any vaccine.  

 

The US has paused J&J vaccine use, the EU has paused AZ use

The pause in administering J&J has caused some alarm.  Then popular media was swift to condemn the alarm.  But I think this is the wrong response.  After a year of uncertainty, sacrifice and protests, we need transparency and a sense that we can do something.  

Health agencies don't pause lifesaving vaccines for no reason, so telling people "nothing to see here, move along" is pure doublespeak that will backfire.  People already have some hesitancy with Covid vaccines.  They don't need more confusion or heavy persuasion that feels like heavy persuasion. 

The fact that's being obfuscated in almost all of the "popular" coverage is that the blood clots being caused by J&J and AZ vaccines are of a special type that can cause hospitals to misdiagnose you and give you the wrong remedy.  The most commonly used anti blood clot medication in hospitals is heparin.  In this case, that's the wrong drug, because the effect in the (extremely rare) case that you get a clotting effect from a vaccine, is called thrombotic thrombocytopenia.  

Please read that over and over until you can pronounce it.  It's important and may save your life, or someone else's. 

In layman's terms, this is about the behavior of platelets (a simple explanation of blood factors, including platelets). Platelets are the part of your blood that forms clots when you get injured.  You might not have known before that platelets get sticky whenever you have an infection, and usually this is nothing to worry about.  

In an extreme case, all of the platelets can be busy sticking to each other, so you get a situation where there are tiny blood clots which may grow larger and get stuck in tiny blood vessels like the lungs or the brain, but your body can't really form useful blood clots because all the platelets are too busy sticking to each other. Then, an antibody can go around destroying the platelets and other blood factors, giving you a form of anemia. This is an autoimmune effect that's meant to prevent strokes and embolisms, probably, but it can go haywire. Adding heparin to this mix is dangerous.....

 What is thrombotic thrombocytopenia?  https://en.wikipedia.org/wiki/Thrombocytopenia#Thrombotic_thrombocytopenic_purpura   Also, scroll down to "heparin induced..."  because that's what some of the doctors have been talking about when they warn that hospitals may do exactly the wrong thing.  This is not new, this is not a big surprise, this is not a huge risk.  The occurrence of this type of blood clot from either of the two vaccines is rare.

But this is a bigger risk now, because emergency rooms are slammed with Covid patients and a doctor in a hurry may simplistically think, "clot = heparin" and make the patient worse.  The pause is most likely to notify doctors of this special situation, and to not immediately think clot = heparin.  In addition they're probably making sure patients are covered for any special tests needed (insurance wise). 

Ref:  https://www.nytimes.com/2021/04/09/health/vaccine-blood-clots-astra-zeneca.html
"The antibodies led to a condition called thrombotic thrombocytopenia, which caused both clotting and abnormal bleeding.[...]The article described specialized blood tests that can be used to diagnose the disorder, and distinguish it from other, more common clotting problems not related to the vaccine. The research team suggested treatment with a blood product called intravenous immune globulin, which is used to treat various immune disorders."  (that article was about Astra Zeneca)

This is the missing piece of information that most popular media in the US is skipping over.  Too technical, I guess.  Well I think it's time to stop spoon feeding, or worse, ridiculing people's concerns because you think you know what people should be allowed to think about.  I rarely criticize Colbert, but this ridicule of people's concerns is silly. While everything they say is true, it's uninformative and ineffective at calming anything down. You can be 100% insightful about how rare this risk is, while failing to inform anyone about the seriousness of the situation, when it happens.  That's what I wish to correct. 

It's also not just women, as the experience of AZ in Germany has shown.  An American man just had a stroke that may be related to J&J.  But the fact that it's mostly women should be even more concerning.  We know that science had to be forced to use female mice and rats in scientific testing because they just haven't been bothering to, for decades.  We know science is bad at women's health, especially in the US.  To get a woman to pooh pooh a concern that is killing mostly women is bonkers. Especially in face of the fact that the CDC and FDA are taking the concern seriously. 

I need more than a comedian's say-so to disregard the CDC's and FDA's concerns

This popular, hipster, youngster site got the message right though:  Mic, and Melissa Pandika, thank you so much for not dumbing down the news.

Your job as a patient

... is to learn the tongue twister thrombotic thrombocytopenia, and to learn the signs of stroke, and to understand that you can't wait for a doctor's appointment if you think you may have a blood clot.  

Since blood clots are one possible complication of Covid-19, doing all you can to prevent getting the disease is also your job as a patient.  Do your best to talk yourself out of vaccine hesitancy if you can, because the health risk of Covid-19 is in almost all cases, worse than the risk of the vaccine. Being non-hesitant, and being well informed about blood clot risk are not mutually exclusive. The long term health damage of Covid-19 to the lungs to the heart, etc, not even due to "long Covid" but just due to the disease, should be the scariest part. That should be what motivates all of us to do our best to end this pandemic.

Keep up the hand washing, mask wearing and distancing.  I feel like at this point, I don't need to say that, but there it is.

Memorize the signs of a stroke (you should anyway). If you find yourself in the hospital and heparin is being offered, just ask nicely, "Hey, it's been in the news, I just want to check that I'm not having that rare thrombotic thrombocytopenia thing. Are we good?" You're risking a lecture about "googling your health too much" but I"ll take a lecture over harm any day.

Additionally, as someone who has survived multiple pulmonary embolisms, if you have a significant reduction in your lung capacity or exercise capacity, or hill climbing ability, you should also suspect this.  MPE is often diagnosed post mortem (after you die) because people think "I'm just getting older, exercise is just normally harder."  No, no, no!  

So your job as a patient is to maintain an exercise level normally, so you can tell if your lungs are being hurt. If you just started a new exercise regimen, there's no way to tell how hard it's supposed to feel.  But if you can't speak during "light" exercise like walking because you're too out of breath, that's probably significant.  

Note that I had only shortness of breath in this list of signs of MPE, yet I had pleural stabbing pain also from one of the three main lung infarcts, the one that had abscessed. If you feel pain upon every intake of breath, immediately go to the ER, there's not a second to waste. I've never heard a doctor be more panicked than when he called me to tell me what my CT scan showed and that I should drop everything and go to the hospital.

There was a lot of discussion about my case in the hospital, a doctor and a student practically had a classroom at my bedside, for nearly an hour.  They discussed the risk of heparin for me, I had a stepwise series of drugs before I was on long term warfarin.  I don't remember them all, but I had to have something else before I had heparin.  Later I went home with lovenox. Of all of them lovenox was the best, I really don't understand why that's not getting more use.  It has a secondary anti-inflammatory effect and I wished I could stay on it, but it's an injection only. And I don't know if it's appropriate in the thrombotic thrombocytopenia case because I'm not sure that's what I had.

Nobody told me that this predicament might be the result of switching birth control brands.  When they warn you about blood clots they don't tell you it might be a miracle that you're alive. Neither is the caution about J&J unwarranted.  

I think it's very responsible and reasonable for the CDC and FDA to pause J&J briefly and make a plan.  Even if the risk is rare, the consequences are huge. 

 

Ordinary precautions against blood clots and sticky platelets

 Consider taking one or more of:
  • Vitamin E
  • Baby Aspirin
  • Natto
  • Vitamin K (with vitamin D and E, not alone)

If these are deemed "ineffective home remedies" then why are hemophiliacs warned against doing this?  Just do what your common sense tells you. Until I've survived a few months past "fully vaccinated" I will be taking at least Aspirin and E.  It bothers me greatly that this simple self defense tactic is not being mentioned nearly as often as the "rare" narrative.  I'm not saying there's zero chance of a blood clot, if you do this, I'm saying it's not going to harm you, and may help. Unless you're a hemophiliac, of course.

Instead of all this "calm down" media fluff, we should be telling people what rational steps to take, along with the fact that it's extremely rare.  We're doing great on the "extremely rare" message.  But we're completely failing on the rational steps part.  I hope I've managed to help the "keep calm" narrative, by giving you some concrete steps you can take, and some information to partially demystify the problem. 

So now that you know, tell me, was this too technical?  Was it too scary?  Leave me a comment and let me know. 

 

Updates:  

While no medication is completely free of side effects, it helps to be forewarned about it so you don't panic unless it's necessary.  Most people say that the 2nd dose of any 2-dose series is much worse than the first.  And that a little more warning would've been nice.  So here's the warning.  This is merely fair warning, not an inducement to hesitate more.  However, you know your own body best, and I really do respect every person's decision on this matter. I don't think we're going to get anywhere shaming people or ridiculing them.  People who are vaccinated will have nothing to fear from those who are not, so let's stop the shame talk.  Let's start the hope and compassion talk.  

I hope you have no side effects and avoid Covid-19, and I hope this pandemic is over by this summer and life can get back to normal.  💖

Pfizer side effects, heavy menstrual periods, and "Covid arm": https://time.com/5957222/covid-vaccine-side-effects/ and more https://www.tech-gate.org/usa/2021/04/02/doctors-explain-the-reactions-after-receiving-pfizer-moderna-or-johnson-johnson-shots/   I had Pfizer last Friday, and had a migraine triggered, which was not fixed by any medicine, not even Zomig.  On Saturday I had diarrhea and wondered if I was glutened, because I also felt dizzy and my back muscles were tight. Pretty sure I wasn't, pretty sure it was the reaction to the vaccine.  Also had absolutely "stay in bed" fatigue and general aches.  I asked Doug to check on me every half hour for a couple of hours while my heart beat like a drum and I couldn't move.  I used the CPAP just in case.  But managed to force myself to get up after about two hours. No fever but it was very scary.   Overall, I'm struck by how similar this reaction is to my reaction to gluten. 

I'm not sure what I will think a year from now when there will be talk of a "booster" for this vaccine.  But I'll most likely weigh the side effects much more seriously against the benefits.  It's one thing to be thinking "OMG horrible plague must protect self and others" and another thing to contemplate going through this agony once a year, voluntarily.  Not even the MMR vaccine hurts this bad.  So I hope they refine it and make it less allergenic or whatever.  I'm not buying the hype that "all vaccines have side effects."  I'm a big time vaccine lover and believer.   I'm usually tracking when I need to get my next tetanus, flu or whatever shot.  And I know what vaccines feel like.  This is painful by comparison.  So they need to stop bullshitting people and start being compassionate. 

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