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Please help, I've been diagnosed with familial hypercholesterolemia =[

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  • Please help, I've been diagnosed with familial hypercholesterolemia =[

    Hi guys,

    I'm having a bit of a bad day today, I had my full bloods taken at the start of this week. I got the results back today and it turns out I have a rare genetic disorder called familial hypercholesterolemia which means I have abnormally high cholesterol levels.

    I have a small and very slim frame (5'3" and 109lbs) and I'm a huge advocate of healthy eating so this has come as somewhat of a blow to me because now it looks like I can't follow the Paleo diet properly anymore. My LDLs (low density lipoprotein) rang in at 8.8 (it's only supposed to be around 2.2) and the doctor said that my figure is higher than that of an obese person brinking on the edge of a heart attack.

    Basically, I have to go on a super low-fat diet now and probably medication after I'm referred to a lipid specialist. I'm pretty much not allowed to eat red meat anymore and I'm banned from using fatty cooking oils such as the coconut oil I use religiously.

    So, can any of you good people suggest any modifications I can make to my diet without having to sacrifice the Paleo lifestyle? Because I honestly cannot think of anything worse than having to eat grains again.

    Nicole x
    Female, 5'3", 22. Living Primally since April 2012.

  • #2
    What is the make up of your LDL? What are your ratios? So many more questions need to be answered. Did you get an HS-CRP to determine inflammation?

    Your doctor obviously believes in the lipid hypothesis which is wrong. Cholesterol does not cause heart disease. Get a new doctor who understands cholesterol and its function in the human body.
    Check out my primal blog: http://primalroar.posterous.com/

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    • #3
      I don't know what my ratios are, she just told me what the test showed up. If I'm going to see a lipid specialist, will they not be able to tell me whether my doctor's wrong?
      Female, 5'3", 22. Living Primally since April 2012.

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      • #4
        I'm no doc and glad not to be. But, we know that the CW is wrong, we know that AMA, ADA, AHA, CDC, FDA and many, many others coupled with the pharmaceutical industry have gotten diet and health recommendations wrong over and over again for decades causing the US to be the fattest and most over-medicated nation in history. Why start listening to them now???

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        • #5
          The lipid hypothesis is wrong. The people who eat the most fat in the developed world, French, Swiss, Spanish and several others I could mention eat screamingly high levels of saturated fat and have the least heart attacks. Russians, who have generally quite low cholesterol, well under 200, have screamingly high rates of heart attack, second only to the U.S.

          I refer you to Gary Taubes Why We Get Fat and What To Do About It and Tom Naughton's video presention "The Big Fat Fiasco" for the science behind this.
          My Primal Journal: http://www.marksdailyapple.com/forum/thread53052.html

          "Freedom from fear" could be said to sum up the whole philosophy of human rights. - Dag Hammarskjold

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          • #6
            Thanks for your replies, folks. Siobhan, I'll check out those resources and Buffdv, I totally get where you're coming from. I just don't know what I'm supposed to do, I've got family members who don't exactly approve of my diet and doctors telling me I could have a heart attack if I don't lower my cholesterol. Right now, I'm just so confused and worried about this because if I continue to eat the way that I am right now after this 'revelation', my family will get mad at me and if I change my diet, I'm going to struggle maintaining my Paleo lifestyle.
            Female, 5'3", 22. Living Primally since April 2012.

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            • #7
              Familial Hypercholesterolemia is a different thing altogether than normal elevated cholesterol, so you may need to listen to the Doctors and decide how you can fit what they tell you in with the way you eat. You might try to verify how they made the diagnosis, and aren't just saying you have FH because the levels are so high.

              Chris Kresser and Chris Masterjohn have a podcast series on cholesterol, and in Part 3, they talk some about FH. The link is RHR: Chris Masterjohn on Cholesterol and Heart Disease (Part 3). If you go into the Comments section, they have a discussion too, beyond what's in the podcast. You might also listen to, or read the transcripts from the other podcasts from Part 1 and 2, and go dig around on Masterjohn's site.

              I'm not in any way an expert on or very familiar with FH, I'm just providing links to information beyond the standard "cholesterol doesn't matter" answer I see thrown around sometimes.
              Last edited by Pooka; 05-18-2012, 01:57 PM.

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              • #8
                I totally get that. It is your health after all and you want to do the best you can to get it right. Griff has a couple of big threads about cholesterol that will likely help you understand better how cholesterol works. Cholesterol is a useful tool that your body needs to work properly.

                I don't know how long you have been primal, but I think that most who have been primal for 6 months or more simply know inside that this is the right way to nourish our bodies. Ailments disappear, illness disappears, problems disappear and many, many things just get better. You simply feel better. Feeling good is your body telling you that you are getting it right and feeling bad is your body telling you something is wrong.

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                • #9
                  I'm so sorry you are having troubles at such a young age, but I doubt this problem happened in the last 30-60 days, so I would go to another doctor, take notes from books, ask them if it's correct to assume the disorder has been an ongoing thing, and would it be okay to stay with paleo for 6 months and be re-tested?

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                  • #10
                    ^^^ Good plan!!

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                    • #11
                      Pooka, thank you very much for your reply, I'll definitely check those podcasts out when I get home as I'm eager to know more about the condition.

                      Buffdv, I've been Primal for about two months now and I already feel a lot better since ditching the grains (I used to eat a LOT of brown rice). I wasn't following a completely SAD diet pre-Paleo because I've had problems digesting wheat, gluten and dairy for years but I did used to eat a lot of gluten-free alternative foods that were embarrassingly high in sugar. Since going Paleo, my stomach has been so much better and I don't crave the foods I wasn't allowed to eat in the first place.

                      JudyCr, thanks for your support, it is a bit of a downer to find out about something like this but hopefully I'll have more tests done when I go to see the lipid specialist I've been referred to. I'm going to stay as Paleo as I possibly can and maybe just use olive oil sparingly when I make omelette or fried eggs.
                      Female, 5'3", 22. Living Primally since April 2012.

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                      • #12
                        Just wondering~ how did you eat before April 2012? Not sure it's realistic to blame a WOE you've followed for at most, 6 weeks. For all you know, with time, primal eating may be what's best for your system. We do know know that people without a genetic condition don't usually do well on a high grain (carb) diet, so how would it benefit you?

                        ETA~ I see you've posted your former diet~ JMO, but I think it's probably why your cholesterol is so high right now~
                        Last edited by Nady; 05-18-2012, 08:10 AM.

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                        • #13
                          Hi Nady,

                          I'm definitely not blaming Paleo for my high cholesterol because I don't overeat on the red meat or use excessive amounts of coconut oil. My doctor said that I've probably lived with the condition my entire life but because I've never been tested for it before, nothing was ever picked up.

                          I definitely do NOT want to go back to eating grains so if anything, I would just cut out the red meat and eat more chicken and salmon and cook my eggs in a small amount of olive oil instead of coconut oil. If I do have to cut the really fatty things out of my diet, I still want to be able to eat Primally but maybe a slightly modified version so it's low-fat.
                          Female, 5'3", 22. Living Primally since April 2012.

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                          • #14
                            Oddly wonderful, isn't it, that you started living/eating paleo just recently, almost like your body knew something was wrong and your good sense (karma) had you search out and change your eating habits? I would stay with what you've started, drink lots of filtered water, consider sugar & grains as poison, go prepared to all dr. appts. (Just my opinion but I tend to pray about things like this and have already done so in your behalf, sorry to offend anyone with that, but it's just me).

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                            • #15
                              I think the first thing you should do is ring the doctor & ask them for the full set of figures. At the very least, you want to know the HDL, total cholesterol & triglycerides. If a doctor says your LDL should be around 2.2, then that's a doctor whose advice you need to ignore as frankly they haven't got a clue. I wouldn't accept a diagnosis of FH from someone like that. Also, do you know what your blood pressure is?

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