How Losing Weight Almost Killed Me paleo pulmonary embolism DVT blood clot VQ scan clexane-min

How Losing Weight Almost Killed Me

This post, on the surface, hasn't got much to do with the paleo diet. It’s also pretty self indulgent. I’m writing this post in the hope that people who relate to anything I’m about to write below, will get in touch. Perhaps we’ll be able to compare our stories – maybe someone will point out similarities we hadn't even considered?

Apologies – this is a long post, you might want to make a cup of tea first…

How Losing Weight Almost Killed Me paleo pulmonary embolism DVT blood clot VQ scan clexane-min

So, let’s go back. In early 2010 I lost weight, A lot of weight. About 20kg (44lb) in fact. I found out about paleo, completely transformed my diet, started walking/ running to work and developed a mild addiction to taking dance classes. Over the three months I lost the weight, I could almost see it falling off. Every day at work people would comment. But then as quickly as the weight loss began, it stopped. A huge plateau (I’ll be writing a lot more about this in future posts). I remained 17kg lighter, and didn't put any back on.

Around three months after my weight hit a plateau, I travelled back to the UK for the wedding of one of my oldest school friends (that makes her sound old, but you know what I mean). This is a long, long journey, that I’d made several times before. I had never been as slim and physically fit as I was then; I felt great and was itching to show my family and friends in England the new me.

The Flight

It’s a long old flight, is Sydney to London. I opted for the shortest time, a mere 26 hours, meaning I had just a couple of hours stopover in Singapore. I've always been cautious on flights, walking around lots, moving my feet and ankles constantly and wearing flight socks. I even special-ordered my flight meals, with the aim of keeping to my healthy paleo diet. I never drink alcohol on long haul flights, and even carried my own water bottle to make sure I kept hydrated. I must have been one of the most health-cautious passengers on the entire plane.

So I got to England, went to the wedding, saw my friends and family and generally had a great time. Due to the level of fitness I’d built up, I went out for a few runs during my trip. I had been diagnosed with asthma in 2005, but it had almost disappeared earlier that year, after adopting a paleo diet – or so I thought*. In England, on my last run, I really struggled to breathe. Really struggled. In this situation in the past using my inhaler wasn't an instant remedy, but it always made breathing a bit easier. This time however, it didn't even touch my breathing difficulties, which was quite scary. I put it down to the change in climate (that November in the UK was pretty cold and wet) and decided not to do any more runs until I got back to the Australian sunshine.

Towards the end of my trip I’d started to feel, what I assumed was, a really uncomfortable heartburn sensation. My “asthma” wasn't improving either. The pain got progressively worse – and I did think it odd that it didn't seem to make a difference whether or not I’d eaten. I chose to blame it on eating white potatoes for the first time in ages – see – proof that paleo is the right way to eat!

I left England, with what had become quite constant pain, and headed to Bangkok, Thailand.  I had a few days planned to see the sights, before heading back home, to Sydney.

Bangkok

When I woke up on my first morning in Bangkok, I was in a lot of pain. I knew it was my lungs, and I kind of knew it was a “serious” pain. To breathe, I had to double over and take very shallow breaths. For some stupid reason, the night before I had thought it a great idea to unpack my suitcase so I could repack it neatly the following day. It took me most of the day to repack as the pain was so great, and the effort so exhausting. I had to sleep sitting upright, but as I needed to bend forward to breath – and was in pain, and scared – I didn't get any sleep.

I foolishly decided not to tell anyone, whether in Thailand or back home. I knew if I did, I’d have to go to a Thai hospital, and my panicked self thought that would not be a good thing**. So somehow, I and my suitcase, made it to the airport and through check in, despite being doubled up and probably quite obviously in pain. Very, very foolish, I know.

I got back home to Sydney, made it through what seemed like a never ending queue for immigration and went immediately to my doctor. After hearing I’d just got off a long haul flight, my doctor was very concerned and called the emergency department of the nearby hospital, to tell them I was coming. I declined her suggestion of an ambulance, and drove myself, feeling scared, but relieved it was all about to be sorted out and this horrific pain might actually stop.

I didn't meet any of the non-flying risk factors associated with Deep Vein Thrombosis (DVT) as I was young, a non smoker, didn't have it in the family, hadn't had surgery and was not taking the contraceptive pill. So I was given an x-ray, which (of course) gave me the all clear. I was told it was probably muscular, and to go back to my doctors in a week if it hadn't improved. I knew it wasn't muscular – but these were the experts – the x-ray showed nothing – they had to be right?

At this point, the story goes off on a bit of a tangent, which I’ll include for completeness, but feel free to skip…

Anaphylaxis

Before being discharged, the nurse gave me some Nurofen to help with the “muscle pain”. I’d already told her I was allergic to drugs like aspirin and ibuprofen, but just to be safe, I asked her if that was definitely ok for me to take, since I was allergic to aspirin and ibuprofen. She went away and “checked” and came back to assure me it’s fine, take them. I knew Nurofen make ibruphen, but since it’s a brand name, I assumed they must make other drugs too and took the two white pills she gave me from the little plastic cup and off home I went.***

I got home and was heading to the shower when my face began to feel really odd and tight. It felt odder and odder by the second. I went back downstairs, where my housemate took one look at me and told me to get straight back in the car. I thought it odd that Kev kept looking at me and telling me it had almost gone, whilst at the same time driving fast and straight through several dodgy amber lights… most unusual behaviour.

As soon as I got back to Emergency, they took one look at me, realised I was having an anaphylactic shock and took me straight to the resuscitation area, despite the fact there was a huge queue – and I hadn’t even filled the registration form in. I then had seven doctors and nurses around me and was being given adrenaline in one arm, and antihistamine in the other – as well as wearing a mask giving me more adrenaline (and who knows what else). All I could see was a little corner of my hand, tight, swollen and covered in bright red hives. I could feel my face was tight and swollen. I really thought I was going to die****. After a while the anaphylaxis went away and I started to feel more relaxed (except for the shaking, which I think is a result of the adrenaline) – but then it came back again. Round two followed – more adrenaline, more doctors, more fear – before finally, it went away and stayed away. I spent the night in the emergency medical unit being monitored every 30 minutes or so. Everyone had completely forgotten about my chest pain, and I was still recovering from the adrenaline and shock.

Back to the main story….

The chest pain. I went back to work a couple of days after the anaphylactic incident and spent the week trying to carry on as normal, it was just muscle pain after all. I forced myself to go on walks at lunchtime, but it was excruciatingly painful. That Saturday morning, I went straight back to my doctor, who was horrified and convinced it wasn’t muscle pain. She sent me straight back to emergency, who this time did lots of other tests that they hadn’t even mentioned the previous week. A nurse scanned my legs, looking for a clot, but nothing was found. I had a couple of different scans. The first one, I think, was a CT scan. The VQ scan turned out to be the crucial one. For the VQ scan, you’re given a funny tasting radioactive gas to breath in, then your lungs are scanned. Next you’re given a radioactive injection in your arm, so the scan can match the first scan to the blood vessels in your lungs. I’m not remotely medical, so this is a very basic (and quite possibly inaccurate) explanation. In healthy lungs, the scans match. If they don’t match it indicates a clot. Lo and behold, there was a mismatch.

It turned out I had a Pulmonary Embolism (PE), at just 30 years of age without any of the major risk factors (well, except for flying). PE’s often happens after DVT, due to a clot leaving the legs and travelling to the lungs. It’s often hard to tell what caused it, unless a clot is found in the legs. Apparently the clot can break away from your lung and go to your heart, which would be fatal. And to think I was wondering around for ten days in ignorance trying to (as they say here in Australia) “man up”… I was admitted and immediately given Clexane (heparin) injections twice a day to thin my blood, until the Warfarin (also know at the anticoagulant Coumadin) drugs I was given took effect.

As much as I try to avoid drugs and anything artificial, in situations like this, I’m always thankful for science. Three days later I went home, but had to take the Warfarin for a further six months and go to the doctors every few days to have my INR levels checked. You have to really watch your Vitamin K intake when taking Warfarin, and can’t have certain foods, which wasn't exactly the situation I wanted to be in. The drug was originally developed as rat poison apparently, so I was keen to come off it as soon as I was out of risk.

Again?

About nine months after the first instance, I travelled to America for the Ancestral health Symposium in LA in August 2011. I was off Warfarin and completely clued up. These things don’t happen twice. I didn’t only have flight socks, I now had whole body skins. I spent most of the flight pacing up and down. I managed to use my Qantas points to upgrade one of my flights to business class. I gave myself Clexane injections, before during and after the flight. It was only half the distance of a trip to the UK. What could go wrong?

I remember having a pain in my calf when I got to San Francisco, but put that down to all of the hills and thought I’d probably pulled a muscle. I had a great trip, the symposium was amazing, all was well. On my return flight I felt great, really well and full of healthiness. All of a sudden, I felt very really ill, from completely out of the blue. I got up and walked to the bathroom. The next thing I remember is being in a really nice deep sleep and being abruptly woken up by two aircrew (who were also registered nurses – how good is Qantas!) It turns out I’d passed out on the way to the bathroom and had hit my head on the way down. They insisted on me breathing from an oxygen canister for the rest of the flight, and I felt fine. The next few days I didn't feel “quite right”, so went back to the specialist (who I’d been assigned nine months before) and had another VQ scan. It turned out I had a new, but very small, Pulmonary Embolism. Another one! How is that even possible?

I ended up taking Warfarin for another six months before getting the all clear again, and coming off the Warfarin. I had all of the genetic clotting tests, and nothing was found. My specialist said it seemed to be “just one of those things”. I don’t agree with “one of those things”. Even if it was the long haul flight, something else must be going on to make me more susceptible to this. I live on the other side of the World to my family, I can’t simply not travel ever again? I have taken a lot of long haul flights since this, and been completely fine. I don’t fly more than eight hours without at least a night’s stopover. I have also exhausted all of my Qantas points upgrading as many long haul flights as I can, to business class, so I can keep my legs in what seems to be a safer horizontal position.

So, this is how it was left, until a chance conversation with one of my friends in Sydney. Her fiancé is also on Warfarin, having had a PE too. He doesn't have the typical risk factors either. We then realised he and I had both lost a considerable amount of weight just prior to getting the PE. An interesting coincidence. I mentioned this to a doctor I saw recently, who realised she had seen the same in one of her patients too – a PE after a significant weight loss.

Do processes to do with circulation not adapt quickly to reduced body weight? Do people who have recently lost a lot of weight, still produce too much of certain chemicals? I wish I was a scientist…

I’m now seeing a functional doctor and am having a lot of tests (more on this soon), so I hope to find out if there is anything underlying going on.

Why am I posting this?

I want to hear from other people who’ve had out of the blue PE’s (or DVT) like this. If you or someone you know has had a Pulmonary Embolism, I’d love to hear more about what happened to you – and what you think caused it or made you more susceptible. Had you also lost weight soon before getting the PE? If you don’t want to leave a comment, please send me an email, I’d love to hear from you.

* Incidentally in another interesting discovery, my asthma completely disappeared, after the massive doses of adrenaline I was given. I’ve found a few studies (I’ll link to them here when I find them again) that use adrenaline in asthma treatment. Very interesting.

** And before you ask – yep, I had a very comprehensive travel insurance policy. I should have used it.

*** I now won’t even take paracetamol without reading the packet myself. I also wear a medic alert bracelet, to make sure this won’t happen again.

**** Perhaps the worst moment was when I asked one of the medical team this exact question and they wouldn't answer me. This still puzzles me, I'm sure they aren't allowed to say you’re going to be ok (for legal reasons?) but in that situation, I just want to be lied to and reassured that everything is going to be fine. Even if it isn't. Lie to me, please!

TL/DR: Went paleo, lost a lot of weight fast, got a Pulmonary Embolism; wondering if rapid weight loss makes people more susceptible to DVT & PE’s?

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39 replies
  1. Lesa
    Lesa says:

    Hi – I didn’t read this post before I posted about the vitamin k & calcium issue! Your story is a lot like mine! I was training to run a half marathon & had lost some weight, not near as much as you. Had to make a holiday trip to north Texas, which is a 10 hour trip in a car…one way, so 20 hours total! Went & got a knot in my calf muscle, so I thought. Got home for several days & had to make an emergency trip to my parents house, another 10 hours in a car round trip. Came home, got into a severe car wreck, bruised up my ankle & leg. Mega swelling. Started coughing & sneezing blood. Went to doctor to be told I had a sinus infection. Had a severe pain in my chest going to pick my husband up from work, we are now down to one car. Couldn’t hardly breath, thought I had pneumonia! Went to doctor & they said bronchitis. Decided I needed to get out & at least walk until bronchitis cleared up and my leg swelled up double the size of a wooden baseball bat, one leg. Went back to doctor & they told me I strained my leg walking 4 miles when I had been running 24-30 miles a week! And I told them I was coughing up large lumps of blood. Finally, they agreed to send me to get an ultra sound on my leg, not my chest! They sent me to get a chest x-Ray. The x-Ray of my chest showed nothing! In my leg they found a clot from my ankle to my groin area, my deep vein in my right leg was completely clotted closed! They sent me to the hospital ER to be admitted for a deep vein clot. The ER doctor asked if I had been coughing up blood, I said yes & they did a CT scan of my chest. Two pulmonary embolism, one in each lung, & a pulmonary infarction (lung tissue damage). After, 6 days in the hospital, 2 in the critical care unit, they sent me home on warfin. I spent 6 months on warfin & then my doctor took me off & declared the car wreck caused the clot. I wasn’t your normal clot victim. I was athletic, didn’t smoke, thin but no too thin, good health other than recently finding out I had hypothyroidism. This was 2007.

    Fast forward to 2013, I had started my own business at home doing jewelry. Didn’t exercise as much & gained 20 pounds. Going through menopause, still ran two times a week 3 miles. Starting having a cough & shortness of breath. Got to where I couldn’t run the full 3 miles. Thought I might have bronchitis. I got bronchitis more often after I had the pulmonary embolism, doctor said that was normal. One of my worst bouts of bronchitis, I rushed to ER thinking I had another embolism, only to be sent home with an antibiotic for sever bronchitis. So went to doctor. He said bronchitis & sent me home with antibiotic. Cough got worse & almost couldn’t walk my normal 3 mile run. No swelling in my leg but a lot of pain in my chest. Started coughing up blood, I immediately went to ER. They did some blood work that tests the possibility of a clot & it came back positive, so they did CT scan on my lungs & found a clot in my right lung & pleurisy & another pulmonary infarction! They ran multiple blood tests & also found elevated homocysteine levels & one of the lowest B12 levels the doctor had ever seen. This time, the hospital brought in a specialist, a hematologist.

    I have been going to the hematologist for 8 months & he has found, after months of blood tests, that I have a borderline protein C deficiency which causes the blood clots. He thinks I will be on warfin for life & I take B12 shots every other week. I sleep a lot & feel rough about half the time & have gained an additional 10 pounds. I’m 30 pounds overweight & I’m hoping the paleo life style will help me feel better & loose weight. I was 44 & in great shape when all of this started. I’m now 51 & in horrible shape. Each PE has left me less active & harder & harder to recover.

    I’ve read that endurance exercise can lead to PEs due to the stress of providing enough nutrients to support that type of activity. However, I wasn’t trying to run a marathon this time…I was just trying to loose the excessive weight I had gained over the past two years due to, I thought, menopause & my business.

    The current doctor thinks it’s the borderline protein C deficiency, which is caused by a mutation in the gene. The first PE I had a protein C deficiency & folate deficiency. They put me on folate for life but never re-tested my protein C, because I had never had problem in the past & I was in such good health. This doctor has taken comprehensive tests every 3-4 months & believes it’s the protein C & B12. My B12 was fine the first time but folate was low. Both B12 & folate deficiency can cause PEs. They never found the originating clot the second time. We don’t know if it was in my leg or arm. They did an ultra sound on my legs & no clot. Protein C deficiency is a inherited problem. Not sure what “borderline” means, except that it might mean the number of mutated genes. Rarely, babies are born with sever protein C deficiencies & have clots in their hearts! They often don’t live long.

    I hope this helps & really was surprised by & grateful for your post!

    Reply
    • Suz
      Suz says:

      Wow Lesa, what an awful experience. I’m so sorry to read about other people who have had this.

      Very interested to read about your chronically low Vitamin B12 levels. Have you been tested for MTHFR? I’m going to be writing a lot more about that soon, but your initial low B12 reading does make me wonder – it’s so worth having the test.

      Reply
      • Lesa
        Lesa says:

        Hi Suz – thanks for the response. I will ask my hematologist about testing. I haven’t heard of this but it sounds a lot like the protein c defiency. Although, the protein c deficiency can be, I recently found out, caused by prior clots and/or prior extended use of Warafin/Coumadin, it can be acquired. Since my general practitioner never tested for the deficiency after I got off of the Coumadin the first time, we have no idea if it’s acquired or genetic. They did run some blood levels on my vitamin levels. B12 was in normal range, but not high normal range. My homocysteine levels dropped way down, which is excellent! My thiamin level was low, another b vitamin, b1, and my iron was low but not anemic. They took the blood levels after I had been on paleo diet for a month. I lost 10 lbs, so far. We are having a little trouble leveling off my Coumadin levels since I eat so many fruits & veggies, but dr working with me, thank goodness. I take an iron & selenium vitamin twice a week and seems to be helping with some of my fatigue. I was also able to lower my thyroid medicine, due to weight loss & added vitamins to help thyroid function better. I would love to read anything you have on MTHFR! Thanks so much!

        Reply
  2. Pat
    Pat says:

    Two years ago, my husband became short of breath and within a day was in ICU with a pulmonary saddle embolus. Six months prior, he began following a paleo diet as I had been for 3 years, and he started a reasonable exercise routine. He had been very overweight, pre-diabetic, and with very high triglycerides. He was feeling better than ever, had lost 50#, and his blood work was dramatically improved.
    Then out of the blue, this embolus occurred. He’s on warfarin for the rest of his life and has had no further clots, even following a total hip and a total knee replacement in the past year.
    No one had any explanation for it, and he saw many specialists during the week he spent in ICU. They did say that over 80% of people who are seen in ER with this do not live another 24 hours. I have no idea what caused it, but there might be something to the exercise and paleo diet that kept you and him alive?

    Reply
    • Suz
      Suz says:

      Good point Pat – being healthy has to have helped us both significantly. Your poor husband. I hated taking warfarin, but with something as serious as this you just have to take it. Has he had genetic tests done? I’m going to be writing more about those tests soon – definitely worth having.

      Reply
  3. Kevin
    Kevin says:

    Suz was in fact red, blotchy, and struggling to breathe. It was way more concerning than I ever let on. There were a few dodgy lights that I jumped to get to the hospital… and I was relieved to know that she was ok!

    Great share Suz, you’re making a massive difference by sharing your knowledge and experiences here this way for the benefit of others. I’m grateful! :0)

    Reply
  4. Paig e Beckwith
    Paig e Beckwith says:

    I had Bilateral PE’s November 2011. I had a knee injury and was anemic due to my female issues. As it turns out in my case when I become anemic it triggers me to clot. I’m finally starting to get tested for genetic or other causes for the clotting but it’s one of three things. 1. anemia causes me to have thicker blood because I get edema when my H&H gets low enough leaving less “water” in my blood stream. 2. My prolonged bleeding (female) causes my body to react by producing more platelets in attempt to clot and stop the bleeding. 3. I may have an underlying clotting disorder.

    Having said that, if you read research you are more likely having another clotting incident within one year. Which, like you, I did. Not sure why they recommend only 4 months of warfarin and there is research to show recurrence happens within a year. I had a HUGE clotting episode in 2012 (one year later). I went into the hospital for a blood transfusion and a work up for a hysterectomy. I had to stay overnight. At around 4-5am I felt a familiar twinge in my L thigh. I instinctively knew it was a clot. I told the nurses and they called the Dr who ordered an ultrasound. It was confirmed. By the end of the day I had massive clots in both legs from deep in my pelvis to my knees (one in the right and two in the left).

    I am now on warfarin possible forever since they placed an IVC filter after my Pulmonary Embolisms. I won’t come off until I either have a hysterectomy or finally get through menopause (I’ll be 53 April 3rd). You are more than welcome to contact me. I’ve thought about posting my story around the internet because I have something called “adenomyosis” = big ugly uterus 🙂 So having the two problems together is rare but ahhh well.

    Reply
    • Suz
      Suz says:

      Thanks so much for your comment Paige. What scary experiences. It’s so so good that you realised what was happening and they were able to do the ultrasound there and then.

      I’ve just had the genetic tests done and will be very interested to hear how your MTHFR tests go….

      Reply
  5. Laurie S.
    Laurie S. says:

    I have had PE’s but not due to weight loss. Traveling was always a factor in mine. We took a vacation and drove up to nine hours with breaks. We always attributed it to pregnancy at the time, but over and over to me it appears travel is the culprit.

    Reply
    • Suz
      Suz says:

      But isn’t it interesting that so many people regularly travel long distances – and have no issues!? Have you have many tests? Like me, I bet you’re always scared when you travel now?

      Reply
  6. Belinda Robson
    Belinda Robson says:

    Nature doesn’t hurry. She takes her time and works quietly away in the background getting her work done. Human egos are smarter than that. They ignore body messages until something goes dramatically wrong. They believe all the hype surrounding body image and “healthy” lifestyle. Relaxation does way more for your digestion than any diet can. Be careful when you dramatically cut back on carbohydrates, as they serve as fuel for all the body systems. Beware the rapid weight loss. Slow and steady, sustainable weight loss doesn’t shock the body systems as much and is gentler to the mind as well. You dont’ need to train like an athlete. Sometimes this is also unsustainable and can be very damaging. Go for a walk or swim. Calm down and sit in stillness with the beauty of nature. Breathe in her scent and allow it to nourish your soul. Your body will thank you.

    Reply
  7. Amber
    Amber says:

    Hi Suz, thank you for sharing your story, I haven’t had a PE or DVT, but I am having trouble losing weight after being on paleo for 18 months and lost weight initially but have totally plateaued with much to lose, so am interested in your journey… But I wanted to say to you, that you must have heard of Dr Jack Kruse being in the paleosphere yourself? He blogs extensively and I remember reading about grounding and long haul flights on one of his blogs. This could be valuable information for you. If you have trouble finding the particular blog go onto his forum and ask.

    Reply
  8. Steph
    Steph says:

    Thanks for this post – some interesting stuff, and I’m glad you got through it (and bloody hell it must have been frightening).

    I hope you reported the nurse who gave you nurofen after being informed that you’re allergic to NSAIDs, since that’s blatant malpractice (and nurofen is a very common drug, there’s no excuse for the nurse not to know that it was ibuprofen).

    Reply
    • Suz
      Suz says:

      She actually came over when I was in the resuscitation area to find out what was going on. She laughed – she actually laughed – I think it was a nervous reaction…

      All of the people looking after me knew what had happened, so I assume she got some “retraining”… I didn’t report it formally though.

      Reply
  9. Megan
    Megan says:

    I’m wondering if the fact that fat has a huge blood supply, I’ve seen weightloss/skin removal operations on the t.v and they have to find all the extended blood vessels to clamp them off before removing skin.So I’m wondering if when we lose weight all these extra long blood vessels shrinking (or whatever happens to them I’m not a doctor) plus exercise/sitting or traveling has anything to do with it?
    Would be keen for answers as my husband is a long haul truck driver and is following a LCHF way of eating to lose another 15kgs .

    Reply
    • Suz
      Suz says:

      Interesting thought Megan, I wonder?

      That’s great your husband is eating LCHF – and not easy in his line of work I’d imagine!

      Reply
  10. Debbie
    Debbie says:

    Hi, what happened to you is what happened to my dad (without the air travel) He lost a lot of weight very quickly, on the Hollywood Diet which was a big fad during the early 80’s. He was riding his bike to work and had what the doctors thought was a mild heart attack, he was kept under observation at the hospital expecting to be released that evening, but had a second attack while in the hospital and they couldnt revive him. It wasnt until the autopsy that they found a blood clot lodged in his heart, it had dislodged during the weight loss so he was like a ticking time bomb as it went through his system.
    The clot could have been in his body for years but after doing the right thing and loosing weight, there was no way of knowing how the body is going to react. A bit off the subject is a few people ive known have given up sugar (cold turkey) and within months have become insulin dependant diabetics…. I think the only way around it, and what im trying to do is to loose weight but slowly, very slowly, I have given up bread, and most dairy, and basically following paleo principals, its working 10 kg so far in 7 months, ive just outlived my dad at the time he passed so hopefully slow and steady will win the race. I hope you have all the health and happiness. xoxox Deb

    Reply
  11. Jenni
    Jenni says:

    I had a dvt, but I was on a 3rd gen pill, and wearing kree high socks while sitting down studying for Uni exams all day. Also found out I have a genetic factor (factor V Leiden, heterozygous). So all up, that’s a lot of risk factors. Warfarin is the pits, and I had to be on clexane 40mg/day through 2 pregnancies. That’s the pits too. But I’m really glad to not be dead or anything!!

    Reply
    • Jenny
      Jenny says:

      I have the factor V Leiden also and something else that I have forgotten the name of but like you two risk factors. Do you wear a medic alert bracelet?

      Reply
  12. Kathy
    Kathy says:

    What an awful experience! I haven’t been through this at all myself, but I was wondering if you would be interested in this article by Weston Price:
    http://www.westonaprice.org/cardiovascular-disease/what-causes-heart-disease
    I follow the ‘Nourishing Traditions’ way of eating, which eliminates refined carbs, but replaces them with femented/sprouted grains which are easy to digest and give you that vital element of Vitamin E which is so lacking in today’s diets.
    I hope you find your answer, and get your health back again soon!

    Reply
  13. Erica
    Erica says:

    Has you doctor ever checked your legs for Popliteal Artery Entrapment Syndrome? It’s found in a lot of athletes, but you can also be born with it. Basically the popliteal artery runs between two tendons behind your knee; there are a few different ways that it can be entrapped by the tendons. I am a very avid fitness person and have played sports my entire life; however, I was born with PAES. In my case, one of the tendons crossed over and connected to the opposite side of my leg. This caused the tendon to rub up against, impinge and eventually, severely damage the artery. It took years of playing sports and working out for me to ever notice that something was wrong with my left leg.

    When I played college basketball, my left leg would always cramp and I always blamed it on lack of potassium or dehydration. 4 years later, I started doing crossfit, and I started to notice that the pain had become more constant and my leg would get tight just walking at a fast pace. Then my left foot started turning white in cold climates and also when I walked.

    I went to a Vascular Surgeon and he told me he suspected PAES and sent me in for an MRI. It confirmed his suspicions and revealed that I had a large blood clot in my calf as a result of the severely damaged popliteal artery. Also, there was a very weak pulse in my left foot and I was only getting about 70% blood flow to it. He told me that if I hadn’t been into fitness my whole life, the symptoms probably wouldn’t have surfaced and that most people go their whole lives without knowing they have it. It’s just a thought, but look into it. An MRI is the best way to see how the tendons in your legs look. The ultrasound will only reveal whether or not you have a clot.

    I believe only about 1% of the population have it, which could be why it might not be an obvious diagnosis, but it wouldn’t hurt to find out more. If you happen to have a damaged artery, you’re going to keep clotting until it’s fixed, whether it’s every 6 months or every few years.

    By the way, I was only 23 when this happened and I understand the anxiety that comes with knowing that you have a clot that could cause you to lose your leg and/ or even your life. Good luck with your search.

    Reply
  14. Greg
    Greg says:

    Hi there, people I’ve read your experiences on the subject of rapid, or a lot of weight loss and it’s health implications. But there’s one area about dieting that very few people ever consider and I think it’s relevant here too, when people diet they never give a thought to how much their nutritional intake has dropped, the very thing the body needs to rebuild the body and is responsible for maintaining health. Problem is people are only concerned with cutting calories and the diet type, but no matter what diet your on the body still needs those precious nutrients to keep you healthy…

    As for supplementation too, they need to be good quality ones too, as it’s down to the molecular weight and getting into the cells to be useable. Get chelated forms as they are 40% absorbable compared to the cheap ones that at best are 3-10% absorbable.

    As for warferine a nutrient that’s good for preventing blood clots is Maritime Pine Bark, works like warferine or aspirin, yet if you cut yourself the blood can still clot, the original cure for scurvy discovered in the 16th century…

    Reply
  15. Elizabeth Benton
    Elizabeth Benton says:

    Well so that was what that pain was all about. It started on my right side then all of a sudden was on the left. Thought that it was my stomach and as the drs are 110kms away and you have to wait six weeks to get into the one you usually see I ignored the pain. Though I remember waking up two weeks after this all happened and thought oh goodie no pain,stepped out of bed and it hit, thought well I am seeing a dr today, can’t take anymore of this, so by the time I sorted the house got my son activated (he has Down’s) the scurried around and got animals organised, the pain disappeared and has never come back. Yes I did have to sit up of a night and it did hurt to breath, but there is the farm to look after……… Any way my son and I have been eating Paleo since July this year, he has lost his thick waist line, and I have dropped a few sizes, can’t believe how much more we are actually eating and how the weight has just dropped off. I was not trying to loose weight just trying to get healthy as I have a lot of food intolerances. Never felt better. Will be getting some willow bark when I go to town next and will take that for a while.

    Reply
  16. Linh
    Linh says:

    Thanks for sharing your story. My DVT/PE happened 2 years ago, when I was 34 years old. I was had been taking oral contraceptives for over 15 years. The lifestyle I lead is fairly active and I’ve always been health-conscious. Started doing CrossFit in February 2013 and started the paleo diet shortly after. Workouts were always very intense and I was going Monday to Friday every week, with volleyball and other activities such as hiking on Sundays. I didn’t lose very much weight since there was not much weight to be lost. However, I did cut out legumes, grains, and dairy, which was a drastic change to my relatively healthy diet.

    By April 2013, I was starting to get calf cramps in my left leg while I was sleeping at night. I really thought I was just working out too hard. My job requires me to fly every 2 weeks, usually shorter flights, but the occasional 5-6 hr flight from West Coast to East Coast of the US. In May 2013, after a flight from LAX to Boston, I developed this unexplainable cough and started having trouble breathing. I thought it was allergic asthma. Went to a urgent care center where they just gave me an inhaler and anti-biotics. By August 2013, I noticed that I would become winded and gasping for air after walking up two flights of stairs. Then the first week of September 2013, I got off a plane in Canada, had severe stabbing chest pains on my right side and could barely walk through the airport. I went to a walk-in clinic and explained everything that I had been experiencing and the doctor still turned me away saying “I know where you are going with these questions. You think you have a blood clot. But you really don’t fit the profile”.

    Anyway, after a lot of back-and-forth and health professionals telling me that it was a muscular issue, I finally went to my family doctor in December 2013 when the pain had spread to my left side. She knew right away that the symptoms I was describing was PE. I was sent in for an angio CT and it showed I had multiple emboli on both lungs. She started me on warfarin treatment. I soon developed eczema, which I had never had before… part of me is convinced it has something to do with the blood thinners, but I have been told otherwise.

    I stopped the blood thinners in January 2015 and have since been taking baby aspirin just in case. My skin has gotten far worse and I have eczema outbreaks all over my body. Last week I decided to stop the baby aspirin just to see if maybe my skin would clear up. The timing was bad since I flew from LAX to NYC. The night I got home from NYC, I woke up with a severe cramp in my right calf (the DVT was in my left calf 2 years ago). I am really afraid that I have a new blood clot in my right leg. A doctor’s appointment has been scheduled for Monday… fingers crossed!

    Reply
    • Suz
      Suz says:

      Wow that sounds scarily similar – I can’t believe you were fobbed off with “muscular issues” too. At least this time you’ll be able to make sure they run the proper tests – I wish you didn’t have to wait until Monday though!
      Have you had genetic testing? I’d recommend having MTHFR testing as I have a defect and it seems to be linked to clotting: http://paleo.com.au/mthfr-say/
      Wishing you all the best
      Suz

      Reply
  17. Alison
    Alison says:

    Whoa! I know I am commenting waaaay after this has been posted but I was recently in hospital with a DVT located under my clavicle. Absolutely no reason for it. No surgery, no flights, no pill and no history. Was admitted to hospital for 5 days on a heparin infusion and left with clexane injections (still on them). While I was in hospital they did a VQ scan and discovered multiple clots in both lungs (think confetti bomb going off). I now have further tests coming up (VQ, bloods etc) and just starting to work out what is going on. No drastic weight loss but I have to lose weight. Reading this makes me concerned! If my specialist is insisting on a crazy diet that would mean rapid weight loss, could that increase my chances of more clots or it doesn’t because I will be getting treatment anyway…. It’s all very new as I was only discharged a week ago.

    Reply
  18. Amie Klepinger
    Amie Klepinger says:

    Glad to have found this site and discussion, thank you all for sharing! Started LCHF about 3 months ago. Lost about 7 pounds in 2 months. (Started off about 20 pounds overweight.) About a month after starting the diet I experienced weird back pain resonating to my right arm. Went to chrio and got “some” relief, but then the holidays hit and stopped. About 2 weeks later the pain came back with weird electrical zaps running down the back of my arm. Then in a few days noticed my arm was swollen and partially numb. Urgent care sent me to neurologist who ran a ultrasound of my elbow, thinking I had a backward hematoma from a blood draw a few weeks prior but UA came back normal. Then had MRI of neck which came back fairly normal with nothing that would cause my arm issue. Neurologist sent me back to my general doc who ran Ddimer that came up elevated, and then straight to ER where they found a DVT in my axillary vein. Started Xarelto the next day. 4 days later was experiencing uncomfortable chest pain, similar to pleuracy I had years ago, but chose to ignore until the next day when I woke with a blood “clot” in my mouth. Called ER and they told me to go in. EKG normal. CT normal, supposedly no PE. Consulted w/ Hematologist and admitted me to hospital and put on Heparin for 3 days. Another UA while in hospital showed clot, but no comparison done that I know of (yet). Arm felt better after no activity, but then decided to cook two nights ago and my arm is back to where it was from a pain, swelling and off color (blueish) perspective. Go for follow up with Hematologist today. Blood disorder tests were to be run in hospital but never happened. Perhaps today or soon, although told can only run about 30% of tests while on blood thinner, other 70% won’t show up until off it. This is very scary. Can’t stop thinking about my boys (15 and 13) and how they would be if something happened to me (I’m 47 with no hereditary disorders, although diagnosed with Hashimotos about 5 years ago and had 1/2 my thyroid removed and am on Tirosint). Trying to look on the bright side, have had an overseas trip planned (US to Vienna) in 4 months, but I’m not looking as forward to it as I was before, that’s for sure. Not even sure we will be able to go now, or should “chance” it. Hoping for good news and my body breaks this clot down sooner than later, and no further issues… Wonder if there’s any connection to any of my history.

    Reply
  19. Ross
    Ross says:

    I lost weight quickly between august 2013 to April 2014 overall 3 stone so in September 2013 I was rushed to hospital with pancreatitis I was sedentary on a drip for a week to calm my pancrease before gall bladder removal then 2 weeks later I was back in hospital with acute bilateral pulmonary embolism it was touch and go I was told by consultant and doctors I was checked for any blood disorders and put on warfarin for 6 months I believe it was when I was lying for a week on the drip that did it I had pains around the heart and 2 ecg test that didn’t detect it as it doesn’t show up whilst on the drip it’s been over 2 years and I put back the weight and trying to lose again but will be aware of the comments on losing weight too quickly and careful to do moderate and not exercise intense

    Reply
  20. Katie
    Katie says:

    I was diagnosed with pe after being misdiagnosed with plurisy, I was 7 weeks pregnant at the time and was striving to have a healthy pregnancy and not gain too much weight. I went out n bought a nutribullet and started having several nutriblast shakes which consisted of large amounts of kale…so I always wondered about the vitamin k intake after the fact..but in recent studying I’m also investigating a condition called adenomyosis of the uterus, which causes blood to become trapped in your uterine lining, and I wonder if since I was pregnant, it may have triggered some of that old dried up blood to break lose and travel up to my lungs, not sure. But they did find blood clots on the placenta after delivery. And me like so many others, I was told it was a fluke basically and they also decided to blame it on my hormone shift in pregnancy. ..this was my 5th pregnancy and had no prior complications with the others….so how’s that the answer??

    Reply
  21. Ragu
    Ragu says:

    Hi,
    I am working as a IT professional. Back 2009 One day suddenly I had a stomach pain. Went to SoC and they said could be due to gastric problem. Returned home and next day I was not able to walk. Felt my right leg become wood and hard to move. I have traveled to my home down and getting ready to meet the doc after having lunch. Had lunch and going to wash my hand, suddenly I felt severe chest pain and became unconscious. My goodness my Brother who just completed his medical exams came to pick me up. He took me to hospital and I have got up normal after 6 hours. Then I got moved to another hospital to do the test and they have found one clot reached my heart. They have given the injection to remove the same. I was hospitalised for more than a month. Later then I have felt my leg is normal. Doc found there was many clot in my leg and IV filter kept to stop clot moving towards from leg. Agin after 9 month same issue for my left leg. This time I have felt only leg pain and become wooden hard. Again admitted in hospital for 10 days to take treatment. Doc suggest me to take warf for life time. I have stopped smoking and drinking last 4 month only. Almost 7 years I was smoking and drinking from when I first diagnosed DVT. Now I am wearing stockings and continue my warf tablet. Planning to do the genetics test to find out the reason. Is that ok to follow Paleo diet?

    Reply
  22. Joyce Heigle
    Joyce Heigle says:

    My story:
    72 years old – semi-active non-smoker or drinker and healthy. No Dr. visits etc. forever.
    Late Oct 2016 I started feeling tired, had been coughing (normal for years, a dry cough no blood.) Thought I had SJS – not tested for it, but dry eyes and super dry lower lip etc. Anyway, before Nov 2, I was too exhausted to cook something and eat it! Nov 2 my husband took me to his doctor’s office, where I saw an assistant. I had severe chest pain, worse when I breathed. She reluctantly gave me pain pills and some antibotics which she said was for a UTI. (which Dr later said I did not have) When I was weighed – 115 lbs! Could not believe that… I might have been about 140? before this happened. Sent home. Pain continued as did the inability to breathe – I was totally exhausted. Heart would race and I had a fever. Went to Dr. office again Nov 4 – was sent for an ultrasound of abdomen – showed nothing. More antibotics and pain pills. They did check O2 level. Then on Nov 9, I was sent for a chest x-ray – nothing. Nov 10 The assistant was not going to check my O2 level— I reminded her – it was 84. She went into a panic and said I can’t send you home with a reading of 84 (and of course, she had to be told to check this) I finally saw the Dr. He thought it could be a PE! It was – his office sent me for a CT-with dye…. I was rushed to the ER. They gave me baby aspirin and shots of Heprin. Spent 2 days in ICU – strapped to all kinds of monitors and an IV saline bag, antibotics and on Oxygen. Spent another day in regular room. Sent home w/ O2 and I am on Eliquis probably forever. I went off O2 in about a week.
    Note: in 2009 I had had a “tiny” blood clot behind my right knee – took Lovenox and Warfrin for 6 mo. and I have endured cankles for 40 years. One cardiologist said that he could find nothing wrong with my heart. At my final follow up visit the Dr. did a number of blood tests which did not indicate any problems: SJS, thyroid,, arthritis and I am not sure what else.

    What interested me about your situation was the tie to weight loss. My weight loss was SUDDEN and UNINTENTIONAL. I currently weigh about 105 (which is what I weighed about 1968) I love being skinny not that it is glamourous skinny – it’s almost nazi-skinny. Look ok in clothes! and I hope to not regain any. I am slowly loosing the baggy, saggy skin that came with that happening.

    Reply
  23. Adrianne
    Adrianne says:

    My DVT started as a ‘hot pain’ in the varicose vein on the side of my knee. This happened probably some 6/9 months after travelling overseas. I had lost and regained weight several times prior to that time. The Dr told me there was nothing to worry about, just an irritated varicose vein then as I was leaving the hospital, called me back in because he did find a blood clot below the knee which did show up in the scan. The pain was reverting to further up the leg on the left hand side just above the knee but the clot was below the knee. Blood thinning injections were prescribed, which had to be administered by the nurse at GP’s office because I couldn’t bring myself to actually do the injections. I followed up this treatment with homeopathic Arnica. I still wear support hose for long flights and make sure I drink lots of water before and during flying. Try to avoid sitting for long periods of time, keep moving and drinking lots of water daily.

    Reply
  24. Ant
    Ant says:

    Yes – I have recently suffered PE very shortly after losing weight and taking up a very “healthy” exercise regime, this with doctors ruling out other potential causes (particularly as the last long haul flight was over six months prior to the PE). They think the cause is hereditary/ genetic and I am due to go back for more blood tests in order to ascertain the actual cause. However, from reading posts such as this, it would appear to be more than coincidence. It would appear that there is certainly the possibility of a link between PE and weight loss / adoption of healthy exercise regimes.

    Reply
  25. Karen Bell
    Karen Bell says:

    Hello are you still accepting posts on this?

    My brother just passed of bilateral pulmonary thromboemboli but sadly his symptoms were masked by depression. I want to spread the word to others that anxiety, panic and other neorological symptoms can be attributed to blood clots.

    Reply

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