I have no idea as I have never looked into it... but .. they seem to pretty wrong about a lot of other things... so..Or not....hey ho.
Do you believe the health professionals are wrong about familial hypercholsterolaemia as well?
I have no idea as I have never looked into it... but .. they seem to pretty wrong about a lot of other things... so..Or not....hey ho.
Do you believe the health professionals are wrong about familial hypercholsterolaemia as well?
I have no idea as I have never looked into it... but .. they seem to pretty wrong about a lot of other things... so..
Hi @CathP - I'm Dave from CholesterolCode.com. I friend pinged me about this thread to see if I could help out.
- You should know that many doctors consider high levels of cholesterol alone to be sufficient to diagnose FH ("Only someone with FH could have those numbers..."). This is highly unfortunate as FH is, in fact, genetic and should only diagnosed as such.
Exactly my experience, went from normal cholesterol levels pre-low carb to sky high TC & LDL, TG & HDL were really good though. Doctors response - you have FH.
- Many on a low carb diet will see a dramatic rise in their cholesterol numbers that can be consistent with the levels seen in FH (like me), and we are typically referred to as "hyper-responders". However, I've since learned there are potentially mechanistic reasons for this, particularly in individuals with lower body fat and higher than average energy demands (many athletes on low carb have very high numbers). Thus, it makes a lot of sense that children on a low carb diet would be more likely to have higher cholesterol numbers.
Again, I can really relate to this. My body fat is <10%, very lean LADA diabetic.
I made a layperson-friendly guide that explains these basics of lipidology here: http://cholesterolcode.com/a-simple-guide-to-cholesterol-on-low-carb/
- I'm starting to call this above pattern, Lean Mass Hyper-responder (LMHR) and I wouldn't be surprised if many children who adopt a low carb diet would have higher cholesterol given it "rides along" with the primary energy source on a low carb diet (triglycerides) in LDL particles (Low Density Lipoproteins). When you have lower body fat (lower adipose stores), lower carb intake (lower glycogen stores, relatively), and high energy demands -- it makes sense that your body would circulate more energy from fat, resulting in higher cholesterol.
This makes a lot of sense. My body fat is <10%, glycogen stores have to be low as I eat very low carb 30-50g per day.
- But the question of risk is separate. Higher circulating cholesterol doesn't automatically convert to higher atherosclerosis, but that's a much, much longer post to fully discuss. Obviously I'm currently unconvinced my own high cholesterol levels are clearly a risk factor given what I have researched to this point and have discovered with my own experiments. This isn't to say I'm certain it isn't a risk, only that I'm unconvinced. I usually put it this way: On a 10-scale of concern, I was a 9 when I first found out about my cholesterol, now I'm closer to a 5 -- but I'm *not* a 0.
Yep, I am less concerned too, but certainly it is still on my mind. I did get another doctors opinion and further cholesterol related tests, e.g. oxidised LDL, small dense LDL, also CRP, and all were very good so I felt better. The second doctor advised against taking statins and hence I haven't touched them so far.
- I completely understand why you'd want a T1D on a low carb diet and I know many who have had a lot of success in this. If you haven't already, check out Type 1 Grit on Facebook.
I'm not sure. Seems very very young. I didn't bother telling my doctor I was doing LCHF. It would have been a waste of time. I cut back on cream and gad more salads and EVOO nets etc for a while. TC went down to 3.6 on the combined tablets. Since then I've added back the cream and cheese ant TC is still 3.5 so the extra saturated fat appears to make no difference - in which case why did it shoot up to 10.1 in the first place? It's possible it was just a spike as I adapted to using fat I suppose and that it might gave come down again over time on its own. OTOH I do wonder if I'm now over medicated.Thanks @dbr10 , I'm massively confused too! And extremely cross with our team that this is the way they've chosen to communicate a new dx. No results, no phone call, no explanation in the appointment letter even. Just summoned to the appointment.
Anyway, my daughters results at Christmas were total cholesterol 10.5, ldl 7.5, trigs 1.1, hdl 2.5. No one has told us the results last month but I'm assuming they are equally elevated if we've been given an FH dx/appointment. I think I'll request cholesterol checks from the GP on Monday for myself and my husband as that would give a more definitive answer would it?
Would they give statins to a 6 year old? We're you told to stop LCHF after dx?
Thanks!
Yes get yourself tested. It's supposed to be genetic but neither brother or sister have it so all just guesswork.Thanks for your reply Pinkorchid, I don't think my husband has a cardiac history, but unfortunately I don't know my history as I was adopted. I'm keen to get lipids done on myself and my husband asap as I think that'll tell us a lot more. My daughter is t1 diabetic, which is why she's been low carbing, to enable better control.
I know. Hope YOUR GP can be some help. We all seem to have very mixed experiences here.No I'm not t1 myself, I'm here for my daughter
I guess we'll wait and see what they say at the appointment. I imagine it'll be a fine balancing act with the diet, as increasing the carbs will raise her blood sugars, which is also a cardiac risk....ahhhhh...I don't know what to do for the best.
Thanks for posting link. Yes we might have an exaggerated response to LCHF as Ken Sikaris argues https://www.google.co.uk/url?q=http...IICzAA&usg=AFQjCNFVS7PNo6rRANF3revI1wK26_iitgSounds similar to my results. I think I'm what they call a "hyper responder" in LCHF circles.
Both you and @CathP might be interested in the site of a guy who is also a hyper responder and doing all sorts of experiments with diet to check the effect on his cholesterol levels. He seems to be finding out some interesting stuff: http://cholesterolcode.com/
When I had my genetics tested, I came back with about 20+ mutations that affect cholesterol levels - in particular higher HDL levels. But I've never been tested for hypercholesterolemia specifically.
My most recent test results are in my signature:
Lipids – 27/6/16: Chol 8.9 – Trig 1.1 – HDL 2.3 - LDL 6.1 - Chol/HDL Ratio 3.9 – Trig/HDL Ratio 2.0
We asked for a repeat of thyroid tests following her annual review at Christmas as we knew that low thyroid could be the cause of elevated lipids. My husband raised this with the specialists at FH clinic on Monday, but they dismissed his concerns about being on the low side. Our first thought was that thyroid wasn't optimum but they're having none of it...Is there a reason to suspect her thyroid isn't working properly, or why was the thyroid tests done?
To me it looks like her thyroid hormones are on the low side of normal, but the methods differ as do the reference ranges so they may be perfectly fine. Has she had thyroid antibodies tested?
Thing is that low thyroid hormones can cause a rise in cholesterol, particularly LDL.
Not on statins and won't take them again after a disastrous attempt that almost crippled me and made me think I was getting dementia. All the reading I've done indicates that statins aren't useful for women, especially older women.Thanks for posting link. Yes we might have an exaggerated response to LCHF as Ken Sikaris argues https://www.google.co.uk/url?q=https://m.youtube.com/watch?v=OyzPEii-wo0&sa=U&ved=0ahUKEwidp8uzqM_UAhXHtBQKHQ5NB4cQtwIICzAA&usg=AFQjCNFVS7PNo6rRANF3revI1wK26_iitg
You're not on statins then? I worry now I might be on too high a dose.
BTW apologies to everyone I don't seem to have responded too. Only just noticed the thread again somehow.
Hi @CathP - I'm Dave from CholesterolCode.com. I friend pinged me about this thread to see if I could help out.
- You should know that many doctors consider high levels of cholesterol alone to be sufficient to diagnose FH ("Only someone with FH could have those numbers..."). This is highly unfortunate as FH is, in fact, genetic and should only diagnosed as such.
- Many on a low carb diet will see a dramatic rise in their cholesterol numbers that can be consistent with the levels seen in FH (like me), and we are typically referred to as "hyper-responders". However, I've since learned there are potentially mechanistic reasons for this, particularly in individuals with lower body fat and higher than average energy demands (many athletes on low carb have very high numbers). Thus, it makes a lot of sense that children on a low carb diet would be more likely to have higher cholesterol numbers.
I made a layperson-friendly guide that explains these basics of lipidology here: http://cholesterolcode.com/a-simple-guide-to-cholesterol-on-low-carb/
- I'm starting to call this above pattern, Lean Mass Hyper-responder (LMHR) and I wouldn't be surprised if many children who adopt a low carb diet would have higher cholesterol given it "rides along" with the primary energy source on a low carb diet (triglycerides) in LDL particles (Low Density Lipoproteins). When you have lower body fat (lower adipose stores), lower carb intake (lower glycogen stores, relatively), and high energy demands -- it makes sense that your body would circulate more energy from fat, resulting in higher cholesterol.
- But the question of risk is separate. Higher circulating cholesterol doesn't automatically convert to higher atherosclerosis, but that's a much, much longer post to fully discuss. Obviously I'm currently unconvinced my own high cholesterol levels are clearly a risk factor given what I have researched to this point and have discovered with my own experiments. This isn't to say I'm certain it isn't a risk, only that I'm unconvinced. I usually put it this way: On a 10-scale of concern, I was a 9 when I first found out about my cholesterol, now I'm closer to a 5 -- but I'm *not* a 0.
- I completely understand why you'd want a T1D on a low carb diet and I know many who have had a lot of success in this. If you haven't already, check out Type 1 Grit on Facebook.