8

votes

Hack My Pulmonary Embolism

Answered on August 19, 2014
Created October 12, 2011 at 12:27 AM

Funnily enough ??? there don???t seem to be any questions on this topic. This is a long shot, but if anyone could give me some Paleo wisdom on this, I???d be so grateful. Apologies bit of a long one???

Perhaps not, but I suspect this is relevant. I suddenly developed asthma for the first time five years ago in my mid-twenties, after a chest infection. The ???asthma??? would disappear for ages, then come back triggered by colds, chest infections, being cold, being rained on and exercise. At a similar time I developed an intolerance to salycilates, resulting in hives with excessive consumption (and a slightly swollen face the first time I took aspirin).

Fast forward a few years to 11 months ago and one emigration from the UK to Australia later. Last November I flew 26 hours from Australia to the UK; I didn???t have a stop-over, just a couple of hours ???break??? refuelling in Asia; a very long flight. However, I don???t drink alcohol on flights, wear flight stockings, keep hydration up and am constantly moving my legs and ankles. I broke my strict Paleo diet a few times when visiting family and started to experience what I put down to ???indigestion??? towards the end of my fortnight???s trip. I also went for a relatively small, easy run and experienced the worst ???asthma attack??? I???d ever had ??? to which my inhaler made no difference whatsoever - scary. On the way back I flew halfway to Thailand where I spend a few days in Bangkok, to break up my journey. Almost as soon as I arrived I was in immense pain with every single breath, which got progressively worse. I was in too much pain to sleep, moving was extremely painful, but I was foolishly too scared to tell anyone & get stuck in a Thai hospital (I was travelling alone). My focus was on getting back to Australia. One horrible, painful, scary flight later I went to my GP, as soon as I landed, who sent me straight to Emergency. They put me at statistically low risk of DVT, so did a (negative) chest x-ray and gave me nurophen for the suspected muscle strain [I queried the nurophen with the nurse who assured me it was paracetamol and fine to take; I was discharged, noticed my face was swollen, my body red and I was finding it hard to breathe, so rushed back to emergency where they sorted out my anaphalytic shock and kept me in overnight; anyway, I digress???] So I spent the next week trying to carry on normally, but in a lot of pain, so I returned a week later, when they finally did full tests ??? the VQ scan revealed something in my lungs, so I was put on Clexane injections and Warfarin. At around this point my ???asthma??? disappeared and hasn???t been seen since. The pain disappeared after a few days too. I had tests for the genetic factors which were all negative (despite a history of lung issues in my family, albeit from smokers). My specialist was quite puzzled and said it might not be a Pulmonary Embolism ??? but didn???t give me any alternatives. After three months I came off the warfarin and my specialist put it down as ???one of those things???.

A couple of months ago I flew 14 hours to LA for the AHS. I took all the precautions, clexane injections to thin my blood, no alcohol, flight stockings ??? I didn???t stay in my seat for more than 45 minutes for the entire flight. I was even fitter at this point, and very strictly Paleo. I had an immensely sore calf at various points during my trip, but tried to ignore it. Stupid, I know. On the return flight I came over feeling really unwell and fainted on the flight (probably unrelated). The following week I was still feeling lightheaded, so went to my GP and in passing mentioned my sore calf, which immediately concerned him, so I was sent back for another VQ scan. The scan revealed another brand new ???something??? in my lung. Again, this may or may not be a clot and my specialist was torn between doing nothing and putting me on warfarin for another six months. In the end he decided on the warfarin option, and after six months, more tests. Given that the fainting appears to be not related, had I not seen my GP would this ???clot??? have disappeared itself? Do I regularly have things in my lungs that come and go without causing me pain?

Given my strict Paleo stance and the fact I still have weight to lose; going on Warfarin is completely at odds with everything else I do in my life. On the other hand, I have a big trip to the UK planned, three trips to the US (for Paleo related events) and quite frankly, have become terrified of flying thanks to this; the warfarin makes me feel a bit safer. I???m concerned that whatever the underlying issue is, it has not been addressed and only the symptom is being dealt with. I want to know what is going on and how I can fix it. I???m having virtually no Vitamin K thanks to the warfarin ??? I hate to think what damage it is doing to me.

I???m very strict Paleo (no dairy) and quite low carb. I???ve also completely stopped drinking alcohol. I walk a lot every day and have three high intensity interval training sessions a week. I have never smoked.

So, does anyone have any thoughts on what may be going on with my lungs and what I should so do? Save me from the rat poison!

Thanks for reading this far!

F4d04667059bc682540fdfd8b40f13a7

on October 17, 2011
at 11:29 AM

Thanks Quilt "Never accept just OK when optimal is available" completely sums up how I feel about this. They won't let me take Pradaxa until next year (?!), but I might push for this a bit more. I'm also going to be a lot more insistent that an answer is sought.

F4d04667059bc682540fdfd8b40f13a7

on October 17, 2011
at 11:23 AM

Thanks SP, Seeing a hematologist sounds like a great idea, I definitely feel I need to learn a lot more about what is going on - I can't bear the idea of being on Warfarin for life!

F4d04667059bc682540fdfd8b40f13a7

on October 17, 2011
at 11:19 AM

They sure aren't! If there was another way to get there I would! Visiting my family - all in Surrey/ South East. I can't wait!

Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on October 17, 2011
at 01:09 AM

DVTs are very common these days because of the excessive series two PG's from O6 in the diet. This can cause all kinds of bizarre factor deficiencies. As a surgeon I run into this stuff more than I want to and it is one reason I do things "differently" in patients who wont alter their pre op diet to eliminate O6's. I think as these people age the problem actually gets worse. The incidence and prevalence of DVT is straight up for the last 35 years. It mirrors many non paleo diet charts on neolithic causes of disease. I am not sure that is a coincidence either. Get an O6/3 level done to see?

Bcb2f5436d11467e89123680c046b858

(1356)

on October 16, 2011
at 10:42 PM

I would guess that you have been tested for a Factor V (that's a 5) Leiden disorder, but as The Quilt said, don't assume it's been done. My mom tested heterozygous for it after she had a PE.

0bc6cbb653cdc5e82400f6da920f11eb

(19245)

on October 16, 2011
at 09:13 PM

Planes ain't paleo :P Seriously though I hope you can get it sorted out. Where are you visiting in the UK?

Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on October 16, 2011
at 09:00 PM

yes it does......there are other options.

Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on October 16, 2011
at 08:48 PM

i completely disagree with this.

F4d04667059bc682540fdfd8b40f13a7

on October 12, 2011
at 01:25 AM

Thanks Dragonfly, I'm actually planning to have a whole lot of bloodwork on Friday, I wouldn't be suprised if I need to up my Vitamin D - I have the supplements ready! Was thinking about taking Magnesium too and will investigate Vitamin A and Zinc...

F4d04667059bc682540fdfd8b40f13a7

on October 12, 2011
at 01:23 AM

No, luckily I don't take anything like that

6120c989fd5b69f42a0834b69b87955b

(24553)

on October 12, 2011
at 01:14 AM

My first thought is if you are taking any hormonal birth control to find something else immediately. And I'm certainly no expert on the matter, but I have read that viruses can sometimes affect cardiac health for a long time.

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7 Answers

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4
Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on October 16, 2011
at 08:59 PM

If you have a complete work up I bet you will find that you either have a Protein C or S problem or a problem with your complement system. I would not assume your doctor has looked for it because they obviously have no reason why this keep happening! When I hear this kind of story you need to mandate a very thorough work up done by a hematologist who specializes in difficult cases like this. Dont settle until you have an answer. One of my on pilots would up having a very rare clotting disorder that we uncovered with pretty detailed testing. HE has two previous work ups at a major academic center that found nothing and told them to just take coumadin. Taking coumadin long term is as bad as a DVT or PE. It will eventually kill you in some fashion. I know because I have seen many intracerebral bleeds from this medicine that kill patients after a minor trauma.

This is very common in people who fly. I have several trans pacific pilots with the same issue. You can get off coumadin because it will deplete your Vitamin K. Ask your doc to put you on Pradaxa instead. It works better than coumadin and does not deplete K2 at all. This saves your heart and your bones over time. It is anti thromobin three inhibitor. You never want to be on coumadin long term. The reason doctors want you on coumadin is because they are most familiar with it and it has been used a long time. We are just beginning to understand how bad Vitamin K depletion is long term. And it is as bad as a chronic DVTs are......but that is very under appreciated by my profession.

When you travel via an airplane you can supplement yourself with SQ lovenox injection every 4 hours and oral aspirin on the flight to protect yourself from this ever happening again. IT is a pain in the ass but it is treatable and you likely will not get a clot again.

Never accept just OK when optimal is available.

F4d04667059bc682540fdfd8b40f13a7

on October 17, 2011
at 11:29 AM

Thanks Quilt "Never accept just OK when optimal is available" completely sums up how I feel about this. They won't let me take Pradaxa until next year (?!), but I might push for this a bit more. I'm also going to be a lot more insistent that an answer is sought.

Bcb2f5436d11467e89123680c046b858

(1356)

on October 16, 2011
at 10:42 PM

I would guess that you have been tested for a Factor V (that's a 5) Leiden disorder, but as The Quilt said, don't assume it's been done. My mom tested heterozygous for it after she had a PE.

Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on October 17, 2011
at 01:09 AM

DVTs are very common these days because of the excessive series two PG's from O6 in the diet. This can cause all kinds of bizarre factor deficiencies. As a surgeon I run into this stuff more than I want to and it is one reason I do things "differently" in patients who wont alter their pre op diet to eliminate O6's. I think as these people age the problem actually gets worse. The incidence and prevalence of DVT is straight up for the last 35 years. It mirrors many non paleo diet charts on neolithic causes of disease. I am not sure that is a coincidence either. Get an O6/3 level done to see?

3
C6e47f67b88d49078faea18526165a35

on October 12, 2011
at 02:20 AM

Hey MrsRobinson... so sorry to hear about this diagnosis. I don't have much to say about nutrients and whether or not your levels are high enough.. But I am a Registered Nurse in the USA, and I can tell you that a pulmonary embolism is NOT something you want to mess with. Warfarin may not be something you agree with taking while on a paleo diet, but it could darn well save your life. I've seen too many of those go wrong and serious complications can result. I don't mean to add fear into this situation, but I wanted to tell you how serious a pulmonary embolism really is. I would try to contact someone who can be of more help in what the next step is, hopefully you can contact someone by facebook or twitter by going to primaldocs.com. There are practitioners around who can hopefully give you some better advice.

2
Cdee7454bccdc4ac14ec23b9657eb573

on October 12, 2011
at 10:29 AM

1) The blood clot in your leg could have resolved on its own. Alternatively, it could have killed you. 2) I'm sorry to say, but you sound like someone who will need to be on coumadin/warfarin lifelong, unless an underlying precipitating factor can be found and corrected. 3) High-dose steroids are sometimes used to treat serious cases of asthma. These steroids are occasionally linked to pulmonary embolism. Chronic oral steroid use could do the same. Even inhaled steroids may not be innocent. Note that 10 days of high-dose steroid might cause clots while you're on the steroid or the next month or so, not eight months later. 4) You may well have a hereditary or acquired hypercoagulability disorder (your blood clots easier than average). I suspect your doctor has looked. If you lack confidence in your lung doctor, get a referral to a hematologist. Your lung doctor admits he can't find the cause; he shouldn't be upset if you want a second opinion. BTW, there may be no identifiable cause.
5) Note that the panel of blood tests for hypercoagulability are best done a couple weeks after stopping coumadin/warfarin, not during the course of anticoagulation.

I'm sorry you're having difficulty with this. Warfarin is a hassle, no doubt, but I've seen many people live long healthy lives with it.

-Steve

Disclaimer: All matters regarding your health require supervision by a personal physician or other appropriate health professional familiar with your current health status. Always consult your personal physician before making any dietary or exercise changes.

Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on October 16, 2011
at 08:48 PM

i completely disagree with this.

F4d04667059bc682540fdfd8b40f13a7

on October 17, 2011
at 11:23 AM

Thanks SP, Seeing a hematologist sounds like a great idea, I definitely feel I need to learn a lot more about what is going on - I can't bear the idea of being on Warfarin for life!

1
Ce41c230e8c2a4295db31aec3ef4b2ab

(32564)

on October 12, 2011
at 01:17 AM

I can only speak to asthma/inflammation/allergy issues.

Getting my Vitamin D up above 80 ng/ml (last test was 91) I have had no asthma symptoms for over 2 years.

You need to make sure your Vitamin A, Magnesium & Zinc are sufficient as well.

I would highly recommend getting your Vitamin D level checked & hopefully someone else can chime in on the warfarin/clotting question.

F4d04667059bc682540fdfd8b40f13a7

on October 12, 2011
at 01:25 AM

Thanks Dragonfly, I'm actually planning to have a whole lot of bloodwork on Friday, I wouldn't be suprised if I need to up my Vitamin D - I have the supplements ready! Was thinking about taking Magnesium too and will investigate Vitamin A and Zinc...

0
4f1a9a3929890afc4bedb9e33b6c691a

on January 15, 2012
at 07:53 AM

I have just come accross this forum by chance, I am on Marven 5 mg nightly. the only time I stop taking it is if I have to have surgery. Now after having at least 8 lots of DVT's I will take Marven tablets 5 mg for the rest of my life.Leiden Five does cause blood clotting and makes you miscarriage. I have two of the genes that have mutated so has my sister, they are Hetrozygous and prothrombin G202210A. So far in the family I am the only one with DVT. Hormone Replacement Tnerapy causes you to get DVT,s. Clexaine injuctions was what I was on for the first three weeks untill the Marven kicks in. I have a blood test every two weeks if it stays the same it will go to monthly. I had eight in the L.Leg, about 6 mths ago had one in the R.Leg and took no notice of it as I thought it was just a throb, when into tonw with my daughter for her to have an exray at the hospital, it was 23cm's long in the small vein, if it had been left undetected would have gone into the main artery. At the right place at the right time, I collaped and was taken to the emergancy. I have had blood clots too often and I value my life so I will never go off them again. It is worth all the trips for the blood test and check ups. I am not allowed any green leafy vegtables so will be lacking in Vitamen K. Leiden 5 causes you tgo miscarry, I lost 3 in early pregnancy and my sister 6 up to 6 mths in term. The Prothrombin is inherited fro abnormaily of the factor 11 gene and is associated with a 3 to 4 fold increased rish of venous thromboembolism. Hope this is of some help. Mrs Marrs

0
2b2c2e4aa87e9aa4c99cae48e980f70d

(1059)

on October 16, 2011
at 07:02 PM

Just curious, I was on injected blood thinners for a few weeks after a hip replacement. The pharmacist mentioned that the injectable was far superior to Coumadin. Does this apply to long term treatments as well?

Ed71ab1c75c6a9bd217a599db0a3e117

(25472)

on October 16, 2011
at 09:00 PM

yes it does......there are other options.

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