Familial Hypercholestrolaemia

[bulkbiker]

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..

 

[douglas99]

I have no idea as I have never looked into it... but .. they seem to pretty wrong about a lot of other things... so..

Maybe leave it to those that do know this time?
Bit of an important issue to the op.
But sometimes just because it's on an mainstream website doesn't mean it must be wrong automatically.

...so...

 

[DaveKeto]

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.

 

[CHIET1]

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.

 

[CHIET1]

Hi @CathP - sorry to hear about your experience, I really hope you can get some clarity. As a diabetic myself and father, I can only imagine how difficult this is and how frustrating this is for you and your child. You only want to do your best for them and finding the truth on diabetes is difficult and cholesterol is another minefield!

I am certainly no expert in either diabetes or cholesterol at least not for the masses, but perhaps I am an expert on my own diabetes and cholesterol. Low carb, whether its with HF or HP in my opinion is better choice for managing diabetes, certainly low carb is the only way I have found to prevent blood sugar swings and all the fun that brings! Have you heard of Dr. Bernstein and his book Diabetes Solution, you probably have. Well, I believe in his opinion and he has the most experience on this stuff through his own 70+ years with diabetes and also through the thousands of patients he has treated. Not everyone will agree, but its just my opinion.

He holds a teleseminar every month which you can access on you tube for free, where takes questions from people in advance via email and then answers them on the teleseminar. In his May teleseminar, this cholesterol issue was raised albeit related to an adult not a child, but you might be interested to hear what he had to say, link below. Listen in from 13 minutes and 45 seconds for the question and answer.

Let us know how you get on.

Eddie

 

[dbr10]

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!

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. or not sure.

 

[dbr10]

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.

Yes get yourself tested. It's supposed to be genetic but neither brother or sister have it so all just guesswork.

 

[dbr10]

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.

I know. Hope YOUR GP can be some help. We all seem to have very mixed experiences here.

 

[dbr10]

Sounds 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

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_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.

 

[CathP]

Oh my goodness, thank you so much @DaveKeto @CHIET1 and @dbr10 for your thoughtful responses. We had my daughters lipid results through finally and they're as follows:
Free T3 4.2pmol
Cholesterol 8.1mmol
Trigs 0.5 mmol
HDL 2.5mmol
Non HDL 5.6mmol
Cholesterol: HDL ratio 3.2
LDL 5.4mmol
Apoliprotein B 1.3g/L
TSH 3.69mU/L
Free T4. 13.5pmol
Lipoprotein A 430mg/L
From what I understand the lipoprotein results indicate that the elevated cholesterol is likely to be genetic rather than of a dietary cause. My daughter had FH clinic on Monday and the specialist wants me, husband and my twin sister tested, so I had lipids done this morning. So we should know more in a day or so. Obviously the consultants are keen for us to stop LC, and we want the best for my daughter. But the dilemma is how to reduce the fats and tweak the diet without raising her hba1c above 5.5%, as that would be a danger in itself.

I'll watch that Bernstein seminar once the children are in bed thanks. I'm a big Bernstein and t1grit fan so look forward to it.

 

[Totto]

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.

 

[CathP]

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.

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...
She's not had antibodies done.

 

[Totto]

See if you can get her thyroid antibodies checked, as she already has one autoimmune condition.

Doctors are often uncommonly stupid when it comes to thyroid problems.

 

[Indy51]

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.

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.

My DNA report came back with multiple mutations for raised HDL in particular - and I've certainly got that. Ken Sikaris says the most important ratio is the trigs:HDL one anyway.

 

[CathP]

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.

Thanks. really appreciate your response. I have spent a lot of time reading and listening to your stuff and also that of Ivor Cummings who seems to be on a similar page. Have you ever had a lp(a) test or a AplP(b). Was curious as to what yours came back as being a hyper responder.

Thanks