Familial Hypercholestrolaemia

[CathP]

Hi,

My 6 year old t1 daughter had elevated lipids at Christmas which the consultant put down to our low carb diet. She had repeat lipids and a couple of Familial Hypercholestrolaemia tests (not sure what the actual tests were called though) about 4 weeks ago, and we haven't received the results despite asking several times for them. However yesterday I received an appointment letter through the post inviting her to a paediatric familial Hypercholestrolaemia clinic in 2 weeks time. I'm guessing this means they think this is the cause?! I can't get hold of anyone useful (DN/consultant) as it's the weekend and don't really know anything about FH. Does anyone have any experience of this? Googling hasn't eased my concerns, I'm not sure I want my 6 year old on statins and I'm not sure what she'd eat if she was low carb AND low fat!

Any advice happily received.

 

[dbr10]

Hi,

My 6 year old t1 daughter had elevated lipids at Christmas which the consultant put down to our low carb diet. She had repeat lipids and a couple of Familial Hypercholestrolaemia tests (not sure what the actual tests were called though) about 4 weeks ago, and we haven't received the results despite asking several times for them. However yesterday I received an appointment letter through the post inviting her to a paediatric familial Hypercholestrolaemia clinic in 2 weeks time. I'm guessing this means they think this is the cause?! I can't get hold of anyone useful (DN/consultant) as it's the weekend and don't really know anything about FH. Does anyone have any experience of this? Googling hasn't eased my concerns, I'm not sure I want my 6 year old on statins and I'm not sure what she'd eat if she was low carb AND low fat!

Any advice happily received.

I was diagnosed as FH by my doctor/consultant. I'm doubtful as neither parents have particularly high cholesterol levels, and neither do my siblings. My cholesterol did rise dramatically after diabetes diagnosis and lchf diet. It went from 4.1 to 10.1. Doctor doubled my statin to 80mg. Cholesterol fell much more than expected. I am also on ezetrol to slow cholesterol absorption. It could be that the cholesterol rise was a blip and would have come down anyway. It all still confused.

 

[CathP]

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!

 

[Pinkorchid]

Her cholesterol was very high and whether they would put her on statins I really do not know. Do you know if your parents had high cholesterol because it can be hereditary.
I personally would not have a 6 year old on a low carb diet unless she was diabetic and even then not to low. Kids have different nutrition needs to adults and if they are not diabetic then a low carb diet is not necessary they should have a normal diet with a healthy variety of all foods

 

[CathP]

Her cholesterol was very high and whether they would put her on statins I really do not know. Do you know if your parents had high cholesterol because it can be hereditary.
I personally would not have a 6 year old on a low carb diet unless she was diabetic and even then not to low. Kids have different nutrition needs to adults and if they are not diabetic then a low carb diet is not necessary they should have a normal diet with a healthy variety of all foods

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.

 

[Pinkorchid]

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.

Sorry I thought it was just you that was T1. I do not know how low carb you go with your child but I would think it should not be as low as an adult. There are other parents here with diabetic children perhaps they could give you an idea of how they do their childs diet

 

[CathP]

Sorry I thought it was just you that was T1. I do not know how low carb you go with your child but I would think it should not be as low as an adult. There are other parents here with diabetic children perhaps they could give you an idea of how they do their childs diet

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.

 

[Freema]

my GP thought that I had inherited high cholesterols and was angry when I wouldn´t take statins.. but 3 month later my cholesterol (4.5) AND triglycerides were under norma ldue to lower carb intake and going 1000 calories daily.
I won´t suggest to you to let your daugther go very low in calories, but I think that eating the low carb style AND avoiding eating very much saturated fats changing to more like rapseed and olive oil kind will help you AND finding your daugthers maintenance level in calories and NOT going over that level of calories daily.. so make sure she is not eating more than she needs on a daily basis and make sure she does not get much animal fat including cream..... change it towards nuts instead..

I think high blood glucose creates high triglycerides as well... but don´t know that for sure moving a lot also lower cholesterol .. maybe also triglycerides..

 

[DCUKMod]

Hi,

My 6 year old t1 daughter had elevated lipids at Christmas which the consultant put down to our low carb diet. She had repeat lipids and a couple of Familial Hypercholestrolaemia tests (not sure what the actual tests were called though) about 4 weeks ago, and we haven't received the results despite asking several times for them. However yesterday I received an appointment letter through the post inviting her to a paediatric familial Hypercholestrolaemia clinic in 2 weeks time. I'm guessing this means they think this is the cause?! I can't get hold of anyone useful (DN/consultant) as it's the weekend and don't really know anything about FH. Does anyone have any experience of this? Googling hasn't eased my concerns, I'm not sure I want my 6 year old on statins and I'm not sure what she'd eat if she was low carb AND low fat!

Any advice happily received.

CathP - I'm not a parent, never mind a parent of a T1 child, so I can't comment from a personal perspective on what children require in terms of nutrition, and/or specifically carbs.

What I will say though is that there are a number of conditions which the medics are treating with reduced carb diets - even in children; like epilepsy.

I'll be very interested to see what feedback/guidance you receive from the clinic.

 

[Indy51]

I was diagnosed as FH by my doctor/consultant. I'm doubtful as neither parents have particularly high cholesterol levels, and neither do my siblings. My cholesterol did rise dramatically after diabetes diagnosis and lchf diet. It went from 4.1 to 10.1. Doctor doubled my statin to 80mg. Cholesterol fell much more than expected. I am also on ezetrol to slow cholesterol absorption. It could be that the cholesterol rise was a blip and would have come down anyway. It all still confused.

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

 

[azure]

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.

@CathP Increasing her carbs shouldn't raise her blood sugars if you get the right amount for her. Perhaps her DSN and dietician could help you experiment to find what works for her?

I understand why you're annoyed about just getting that appointment with no information. It must be a huge worry. Keep positive. I'm sure if it is FH, it can be well controlled. X

 

[azure]

CathP - I'm not a parent, never mind a parent of a T1 child, so I can't comment from a personal perspective on what children require in terms of nutrition, and/or specifically carbs.

What I will say though is that there are a number of conditions which the medics are treating with reduced carb diets - even in children; like epilepsy.

I'll be very interested to see what feedback/guidance you receive from the clinic.

The keto diet is only used for epilepsy that doesn't respond to medication. Moreover, it's generally only used short term.

I've never heard it being advised for a child with epilepsy and FH.

 

[DCUKMod]

The keto diet is only used for epilepsy that doesn't respond to medication. Moreover, it's generally only used short term.

I've never heard it being advised for a child with epilepsy and FH.

All I can say is that there were several Dieticians and HCPs at last years' PHCUK Conference who were using a keto approach longer term with their patients, including children. I'm not attending this year, so won't be able to seek them out for further context or clarification.

I'm certainly not telling anyone what to do with or for their child.

Edited, just to add additional context, for clarity.

 

[lessci]

I've never been formally diagnosed, but assume that I have it as my levels pre diagnosis were 7.4 total (doctor didn't prescribe as other risk factors were low). now on 40mg simvastatin and levels hoover between 5 and 6 total, but my Dad and Granddad both diagnosed with FH Granddad died at 62, Dad's been on Statins for 25+ years and still fit and healthy at 72

 

[Brunneria]

@CathP

I hope you get some clarification at your appointment.

One thing I will say is that hypercholesterolemia is a very different thing from high cholesterol, and the team you will be seeing will have a lot of experience in the field, and hopefully a far better understanding of statins, and their effectiveness (and not), than the average GP.

(for instance, I remember seeing a post by a T1 who was on statins, but had been told by their consultant to take a tiny dose, twice a week, rather than the large daily dose that their doc had prescribed. The consultant had explained that the smaller dose was actually far more effective, in those particular circumstances)

So I would go to the appointment and gather all the info you possibly can, before considering how you feel about the situation.

 

[azure]

All I can say is that there were several Dieticians and HCPs at last years' PHCUK Conference who were using a keto approach longer term with their patients, including children. I'm not attending this year, so won't be able to seek them out for further context or clarification.

I'm certainly not telling anyone what to do with or for their child.

Edited, just to add additional context, for clarity.

Hence my "generally".

My context - multiple contact with epilepsy consultants.

 

[CathP]

Thanks @Brunneria , we're actually looking forward to meeting the lipids experts. I have little faith in our DSN or dietician but I think the lipid consultant and nurse specialist should be able to give far more evidence-based and useful advice. I'm hoping to speak to the consultant today if they call me back.x

 

[Dark Horse]

There is a lot of useful information about familial hypercholsterolaemia here:- https://www.bhf.org.uk/heart-matters-magazine/medical/familial-hypercholesterolaemia

 

[bulkbiker]

There is a lot of useful information about familial hypercholsterolaemia here:- https://www.bhf.org.uk/heart-matters-magazine/medical/familial-hypercholesterolaemia

And a possible load of cobblers about regular cholesterol..hey ho..

 

[douglas99]

And a possible load of cobblers about regular cholesterol..hey ho..

Or not....hey ho.
Do you believe the health professionals are wrong about familial hypercholsterolaemia as well?