Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Cholesterol levels poll: pls answer even if they're normal!

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by JaimeS, Jul 20, 2017.

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What are your cholesterol levels usually, since you've gotten sick?

  1. Very low -- less than 130 mg/dL (3.3618 mmol/L)

  2. Clinically low -- 131 -- 160mg/dL (3.4 -- 4.1 mmol/L)

  3. A bit lower than average -- 161 -- 179mg/dL (4.2 -- 4.6 mmol/L)

  4. Normal or close enough -- 180 -- 200mg/dL (4.65 -- 5.17 mmol / L)

  5. A bit higher than average -- 201 -- 220mg/dL (5.2 -- 5.69 mmol / L)

  6. Clinically high -- 221 -- 250mg/dL (5.7 -- 6.47 mmol / L)

  7. Very high -- higher than 250-mg/dL (6.5 or higher mmol / L)

Results are only viewable after voting.
  1. Webdog

    Webdog Senior Member

    Just a bit to add from my previous comment.

    My cholesterol would perhaps be lower if I were actively doing something to change it.

    But my 223 cholesterol is, according to my Kaiser Permanente primary care doctor, "good and normal". So I'm not taking any steps to lower it.

    About 12 years ago, when the guidelines were much more severe, I worked on my cholesterol and got it down to around 190ish.
     
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  2. Mary

    Mary Moderator

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    Mine was clinically high for many years, despite a good diet. Then a few years ago I started taking niacin at night for sleep and within a year or 2 my levels were in the "normal" range for the first time in probably 20 years. I think mine got as high as 250 once. But I would never take a statin. Also, my doctor several years ago did a test to measure the size of my cholesterol molecules and I believe mine were "large and bouncy", something like that, and that was good, as opposed to the opposite, so he didn't worry.

    Anyways, for anyone who has high cholesterol, besides diet, try niacin - it works and much safer than statins. Just don't get time-release or extended-release niacin, which has been linked to liver damage.
     
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  3. JaimeS

    JaimeS Senior Member

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    My mom (with CFS) is vegan by necessity... and her cholesterol is very high.
     
  4. JaimeS

    JaimeS Senior Member

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    Note the conversions next to the values. Should have both US and UK.
     
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  5. JaimeS

    JaimeS Senior Member

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    Or depletes it. That's why I love studying this illness. When it comes to any given irregular blood value, the answer to the question "is it high or low in ME patients?" is 'yes'. :bang-head::bang-head::bang-head:
     
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  6. JaimeS

    JaimeS Senior Member

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    I suspect so.

    I don't care what the blood test range says -- if you have zero cholesterol, that is a problem! :bang-head::bang-head::bang-head:

    People are far more familiar with high cholesterol being an issue. However, hypocholesterolemia is a thing, and it can have serious health implications.

    I would not expect normal cholesterol to essentially mean everything was fine, but I would expect that very high or very low levels of cholesterol are an issue.
     
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  7. rosie26

    rosie26 Senior Member

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    My cholesterol was normal until the age of 48 and when menopause began. I can't find my latest test but from memory it is now around 5.9 which was another increase.

    So, my cholesterol was normal throughout my mild and severe ME onset years ( the first 17 years). And has been high the last 5 years.
     
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  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Don't worry about Cholesterol if it's 6 or so which can come down with simple diet change. worry about triglycerides much more and if you cook in fat and feast on 12'' Pizza's multiple times a week, for years and have a 'spare tire' belly.

    If you get prescribed statins by an over zealous doctor, make sure not to take them unless absolutely necessary as statins will destroy your mitochondrial function even if healthy, never mind with ME CFS. So if you must take statins, take at least 200mg ubiquinol (reduced form of Q10), twice a day (400mg daily).

    Also worry if you have a LP-PLA2 blood test, twice (wait a few months between) and it remains high as then this means the actual enzyme in your arteries is excreting an enzyme in your blood that is 'real' rather than hypothetical. By this I mean if we have high cholesterol blood test we have zero evidence of furred up arteries, we just guess we might do as it's a risk factor, especially as ME patients have high levels of oxidative stress which is perfect storm to be honest. With an LP-PLA2 test, this gives you some actual evidence. Whilst you're at it, throw in an HS-CRP test (must be high sensitivity) and an oxidised LDL test too. Go the whole hog if you're worried about a coronary and get an Apolipoprotein E2 assay.

    If you get high results back then before freaking out and start hopping around your livingroom with an organic carrot sticking out the corner of your mouth (I do this when I forget to take my meds), then for heavens sake tell your doctor and ask them what to do next other than radically change your diet and taking a fistful of supplements that help reduce the risk of atherosclerosis (from oxidative stress) and namely, plaque formation. Easiest way if you can stomach it, is to turn to a 'Mediterranean Diet' but with this illness, this might not be possible due to numerous reasons as many of us have simple restricted diets and live of cardboard as we feel so ill.

    For those who want to have some visual evidence of what's happening in their heart you can get a 3D EBCT scan that can give you a 'score' of calcified coronary arteries in your heart without an invasive catheter procedure (angiogram).
     
  9. Carl

    Carl Senior Member

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    My cholesterol was high for quite some time until I started taking pantethine which lowered both my cholesterol and liver enzymes and put both within the normal range. It more than halved my liver enzymes, they were above the normal range.

    My doctor wanted to put me on statins but I refused. Pantethine worked far better for me.

    I did have and still do have a little calcification of my arteries but I have significantly lowered it by taking vit K2. Taking too much B12 is what I think caused the problems as it can increase the need for K2. Arteriosclerosis has been reduced a lot using Serrapeptase, particularly in my left kidney and a little in my right kidney. Blood pressure is quite a bit lower than it was but still a tiny bit higher than it was a few years back.
     
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just my theory. But its common knowledge that cholesterol is used to make hormones, cell membranes and nerve coverings etc. Could the liver be pumping out high cholesterol to be compensating for an issue going on here. All my different hormones have been dropping as my cholesterol has gone up.

    I recall vaguely reading an article on antiaging hormones that there was a correlation between high ldl cholesterol and low pregnenolone levels. If i recall correctly, some who supplemented with pregnenolone had improvements in ldl cholesterol as well as improvement in other hormones like dhea, cortisol, estrogen and testosterone.
     
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  11. pattismith

    pattismith Senior Member

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    Pregnenolone is produced from cholesterol in mitochondria mainly in gonads, adrenal glands and brain.

    I wonder if people with lower blood cholesterol experience cocomitant low preg?
     
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I guess so. I read those with high cholesterol had low preg levels but i guess it depends where it breaks down. Low cholesterol and low preg would be from lack of substances to make preg??

    Interesting question. I guess we dont think as much about those with too lower cholesterol.
     
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  13. JaimeS

    JaimeS Senior Member

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    I suspect so. An increase in cholesterol is often a response to an inflammatory challenge. It's an adaptive, protective response. Much more the canary in the coal mine as far as I'm concerned than the source of the original problem, if that makes sense.

    As someone with low cholesterol, let me chime in and say that many of my hormones are on the low end of normal, and my testosterone is very, very low.
     
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  14. jimells

    jimells Senior Member

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    I can't answer the poll as I have no idea what my cholesterol levels are, and I have zero interest in finding out. There is plenty of evidence that statins cause harm. Where is the evidence that statins extend life / prevent cardiac events?

    Look closely at the TV the next time there is an advertisement for statins. In tiny letters at the bottom of the screen there is always a disclaimer that the drug has not been shown to extend life. Doctors need to treat people, not lab test results.
     
  15. Gondwanaland

    Gondwanaland Senior Member

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    I don't eat processed food since 2009 (lost tolerance to it anyway).

    Trigs lowered from 150 to below 100 just by going gluten free in 2013 (and NAFLD disappeared at the same time).

    LDL skyrockets from eating hi fat dairy (cream, but I happen to crave it from time to time, esp. if I get a respiratory infection) - I suspect B3 / B5 deficiency in addition to known thyroid issues (iodine deficiency?).

    My HDL is usually in the 80's but skyrockets to above 100 with coconut oil and anti-glycation supplement.

    @JaimeS what guidelines are you following for the poll ranges?

    Heart Risk Calculator

    ETA - of course I have been struggling to optimize thyroid & sex hormones (not easy) and don't consider to take statins. GUYS please we need a thred for specific nutritional needs of cholesterol conversion into the much needed hormones! I seem to have a block in each and every pathway there... Is it Niacin? Inositol?
     
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  16. JaimeS

    JaimeS Senior Member

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    The goal is not to find out whether you should be prescribed statins or not, but because I have low cholesterol and I'm interested in finding out if the same thing is the case for other patients.
     
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  17. JaimeS

    JaimeS Senior Member

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    Discussed previously. Opinions about what is normal or high do vary. :)
     
  18. bombsh3ll

    bombsh3ll Senior Member

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    I recently found my cholesterol was 6.7 (uk range with upper end normal around 5.5). I am on a low dose of mirtazapine at night (for nausea and sleep) which can cause raised cholesterol. I also wonder if my thyroid or specifically low conversion to T3 could be implicated although TSH and T4 were in normal range.

    I would not be keen to take statins though.
     
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  19. Mij

    Mij Senior Member

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    My total cholesterol was up at 6.13 (desired <5.20 mmol/L) 2 years ago, my doctor told me if my glucose was high she would have put me on meds.

    If you have healthy levels of HDL, low triglycerides, good glucose and normal BP then the total cholesterol reading may not be too much of a factor?
     
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  20. JaimeS

    JaimeS Senior Member

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    To an extent, I believe so. My ratios have always been good. I recall having an appointment with a physician (before I became sick) when my cholesterol ticked up just a bit above normal -- he said it was nothing to worry about and stated that he wasn't worried because my ratios were good.

    Now my ratios are still good but my overall levels of cholesterol have dropped significantly. Also, remember that when we're talking HDL : LDL ratio we're most often talking of risk of cardiac disease. I'm not really necessarily concerned with that as an issue, but with the actual cholesterol, since it is necessary for cell membrane integrity -- and for appropriate immune response.
     
    Last edited: Jul 23, 2017

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