Can someone explain this. Familial Hypercholesterolemia.
I am very confused.After finding this website and realising that most of my Moms health issues may be from the statin she is on. I talked to the doctor and he agreed for her to leave it of for two months.and then have a blood test. Well she did and the blood test has just come back.
HDL 1.8 non HDL 5.5 Triglycerides 1.6 Ratio 7.3
He said she should go back on Lipitor as her cholesterol has always been about 5, but after hearing Dr Mercola say that the only people that should take statins are those with Familial Hypercholesterolemia. How do I ask to get this from a blood test.What do I ask for. I know my Mom has been on statins for 30 years and she is 87, but how i read about drug companies making money, and not for the good of the patient. I really don't
know what to advise my Mom to do.
By the way I started her on Ubiquinon 100 mg twice a day.
Please help.
Written by
Claverley
To view profiles and participate in discussions please or .
You mum is 87, a responsible GP will say there is no need to take any medication to control cholesterol, whether there is ant side effect or not.!
There is a post high cholesterol is good for fighting infection.
From the given numbers one can work out total cholesterol. Let your mum enjoy her life without any medication, watching out for hidden and free sugar in food and drinks.
Please go back to your GP and ask for medical justification for you mum who is 87 to be on cholesterol lowering medication.
AS we age BP, blood glucose and blood cholesterol do go up but we have to monitor this..
LDL and non-HDL are not the same. They describe two different things.
LDL is one of 5 major subfractions of lipoproteins in the blood. The others are HDL, VLDL, IDL, and chylomicrons. HDL is considered beneficial while the rest are detrimental. Therefore, for risk assessment the medical industry is using non-HDL as a measure of the 4 detrimental lipoproteins, instead of just the LDL value.
Non-HDL should be below 3.37 mmol/l to be low risk, or below 2.6 mmol/l for optimal health.
If 5.5 mmol/l was your mom's non-HDL, then as I noted, that is not optimal because it is well above the 3.37 mmol/l threshold.
If you wish to help your mom to reduce her non-HDL and to help protect her from dementia, then you must help her reduce or eliminate sugar and simple carbohydrates from her diet.
As I have noted in previous posts and responses to others, cholesterol should be neither too high, nor too low. Extreme levels indicate an imbalance in the body's function that can often be corrected with dietary and lifestyle change.
It's never too late to do the right thing and you're never too old to pursue healthy dietary and exercise habits, as long as one has the desire and physical capacity.
Yeah, that sounds like junk. All NHS labs I've seen still give LDL if asked, but the GP does need to ask for it (and presumably pay these days) because it's another process. However, it might not add much information for treatment, so it's up to you whether you want to pick that fight.
I can't help you with any advice to give your Mum, but I can suggest that you are cautious in taking as gospel the advice freely handed out on some websites - quite a few of which have a vested interest in selling you a range of products produced and promoted by whichever "guru" happens to have their name on the website. Have a look at some of the articles on these types of websites and once you get through to the end of the "article" there is often a sales pitch for XYZ Wonder Pill/Potion/Capsule specially formulated by Dr Guru the website "owner" to deal with whatever potential disasters you were warned about in the text above the sales pitch.
I have, out of curiosity, and for a couple of months now, been "monitoring" the website of the Doctor you mention (and some other sites as well), and while I have found that some of the writing and advice is supported by good research elsewhere, there is also quite a lot of it which appears to have little purpose other than to sell you whatever product is featured at the bottom of the webpage.
If I were you I would be using the same skills you used to find this HealthUnlocked website and forum to find out about Familial Hypercholesterolemia. While it is definitely NOT the best source of medical info, even Wikipedia will give you a basic understanding of most things, and then you can look further afield to learn more on any subject. The most important thing is to be discriminating in what internet sources you trust, and make sure that what you find is borne out by more than one source - and not just other sources of an "alternative" nature. Cherry-picking research is the name of the game for many of these websites.
However, I do agree with sandybrown when he/she suggests that at 87 your Mum may well be better off enjoying life without a whole heap of side effects from medications. Obviously, neither of us knows her medical situation in detail and we don't have any knowledge of health issues she may have which do require medications. Similarly, there may be other meds which are causing some of her health issues, and we don't know about these either. But, at 87 she's had a pretty good run and deserves to enjoy her life as much as she can - quality of life can sometimes be more important than just trying to clock up extra years but feeling like crap all the time.
I totally agree with everything you say and whatever I suggest to my Mom I do check on many many websites.
I never knew about the benefits of Ubiquinol or coconut oil until I found this site. I like to read about other peoples's experiences's and then do my own research.
I know with my Moms age at 87 may be muscle ache and dementia due to her age, but I have heard so many damming things said about Statins, I just wonder if what ever time she has left, she would be better off without them.
Thank you for your reply, I will keep on trying to learn more.
Although the cause of Alzheimer's and dementia are still not known, there is a growing body of evidence that sugar and elevated glucose in the blood may be a major contributing factor. Therefore it would be wise to steer her away from anything that elevates her blood sugar.
A lady who is 87, let this lady eat and drink what ever she wants for the rest of her life. OK, doctors may have given statin for what ever reason, today this issue has been addressed. The daughter is looking after her mum. I am 72, do not take supplement or medication so far. Sugar has been out of reach for many reasons when I was growing up therefore no sugar is added to tea or coffee but most of the sugar comes from carbs and fruits. G&T or V&T, yes there is sugar in tonic.
Yes i agree ,if I took all the sugary things off my Mom she would hardly eat anything, she has thankfully been a vegetarian all her life, because she loves animals so much. I want to try and help her as much as possible as she is such a beautiful soul, but I don,t want to ruin her life.
, I know many people aquire a sweet taste as they get older, I am just trying to balance her food intake with her health. I know you understand, and yes she does like a becks lager, but who am I to say no, I love my wine.
A 'sweet tooth' or 'sweet taste' is not acquired as you age. Sugar and foods that convert to glucose in the blood stream trigger a dopamine response in the brain that provides feelings of pleasure. Sugar is addictive, some say more addictive than cocaine. Sugar and elevated blood glucose lead to deadly diseases. Life can be enjoyed without sugar - the reliance on sugar for life's enjoyment is purely psychological.
A friend on the CKD site advised me of Zetia non statin which with omega 3 fish oil tablets has been very successful in lowering his LDL or bad cholesterol. He is 77.
I was put on Crestor and later Lipitor for slightly elevated LDL and normal HDL as well as Triglycerides which my dad had. Both, particularly the Lipitor caused me a violent reaction. Backaches, stomach aches- dreadful!
I watch my diet carefully..lots of fruits and veggies...no red meat...
7 months of suffering and he reluctantly took me off the drug.
With the Lipitor my LDL got no lower than 124 ( norm 0-129)
Without it, I am now at 131
and no pain.
Endocrinologist still pushing the Crestor which thanks to Drugs.com and my pharmacy learned produces protein spilling...which my kidney disorder produces.
If I must try a cholesterol lowering drug, I would consider the Zetia non statin as I looked it up and spoke to my pharmacist. This will be discussed at my next appointment.
Look it, or any medication up on the site as it lists side effects and drug interactions.
This is not Dr. Guru...take a look at the site and please let me know how mum is doing.
Will do. I do know that I will not take Crestor as I am being treated for Protienuria and Crestor is not recommended for people with proteinuria. I want as much data as possible. My GP thinks I may have a statin allergy, or at least Lipitor and to stay away from them at present.
I can't thank you enough for your caring and taking the time to respond to me.
Look up the FH group on Facebook, it’s great for offering advice and support specific to people who have been genetically tested for FH - some ‘normal’ rules regarding cholesterol don’t apply to someone with FH.
Heart UK, started to control cholesterol, there are qualified nurses who can answer questions on FH, if you Google HeartUK you can get contact details.
Familial hypercholesterolaemia is a genetically raised cholesterol level. Your Moms are not. Ubiquinol is an excellent choice and do not be pressurised to take statins. Instead take a high quality vitamin C supplement which enables the blood vessel membranes to repair over time. I would add that any increase in cholesterol levels at her age is good for her. Centenarian usually have much higher levels and years gone by these could be as high as 13 as cholesterol is not the principal cause of vascular inflammation. CVD is chronic scurvy - see Utube video Mathias Rath 2015 (Maaastricht Symposium)
Just found out about FH, but wonder if my Mom has a genetically raised cholesterol level.
When she went to the Lipid clinic some 30 years ago and they put her on Lipitor, her cholesterol was 11, and the doctor said she should not have been sitting there with a level that high. My Mom was only 9 when she lost her 29 year old Mom with her heart, and my Moms sister lost her daughter only 27 with her heart.blood testing for cholesterol was not done 78 years ago.
So Iam wondering has the statin kept my Mom alive, or would she have been better off without it. I know no one can answer that, but while she is here, I want her to feel as good as possible.
Familial Hypercholesterolemia (FH) is an over-diagnosed condition. Doctors 'assume' a person has this condition if the non-HDL level is too high. In order to determine if a person really does have FH there is a specific genetic test that must be done - for obvious reasons (cost), doctors don't pursue this and just estimate based on high cholesterol levels.
My cardiologist had told me that I had FH, I changed my diet and lifestyle, which resulted in weight loss and presto, my cholesterol was under control. I gave up my cholesterol pills 10 months after changing my diet and lifestyle and I haven't looked back (2.5 years and counting).
The most impactful change your mother can make is to cut out sugar and all other sweeteners and simple carbs. Her triglycerides are a reflection of excess sugar/simple carbs in her diet, so if that number comes down, so will the cholesterol.
Avoid soft drinks including diet drinks, minimize alcohol, and stick to water or mineral water.
Also eliminating simple carbohydrates from her diet such as white flour products - white bread, pasta, and pizza dough will reduce triglycerides. White rice and potatoes are also simple carbohydrates that must be eliminated.
Fill her plate up with legumes and vegetables and a lean protein (lean chicken breast), especially cold-water fish like salmon trout or arctic char (fish no more than 2 meals per week).
Whole grains are good in moderation - so she can have whole grain bread and pasta as well as brown rice. Popcorn (air popped with a little extra virgin olive oil and lightly salted) is also a healthy whole grain. Also she can snack on walnuts and almonds (in moderation) which contain healthy fats and other nutrients.
Daily consumption of 4-6 oz of blackberries or blueberries will increase her fibre intake and lower her cholesterol. Frozen berries are actually more nutrient rich than fresh ones that have been imported. I place frozen berries in a bowl and add a half cup of Greek yogurt (0% fat, plain unsweetened). This is a high protein meal/snack that is very healthy and filling and tastes a little bit like ice cream (I emphasize 'a little').
If your mother has not had bypass surgery or angioplasty, then there's no scientific evidence to support the use of statins for women over age 60.
I doubt many have been diagnosed with FH only on LDL level. Most FH diagnoses have been done on the "Simon Broome Criteria" -
guidelinesinpractice.co.uk/... is a fairly clear summary of them. Since a decade or more ago, the DNA test should only have been optional if you or a close relative present xanthomas (I know because that's part of why it took me so long to get one).
However, a diagnosis of "possible FH" could happen without that and I think many patients, looking for a liferaft to cling to while feeling like they're sinking in this very serious deep water of incurable illness, leapt onto that diagnosis and simply forget the "possible" bit.
The guidelines have changed and now both definite and possible FH should be referred for DNA testing: see 1.1.6 in nice.org.uk/guidance/cg71/c...
Unless it is done by DNA testing, FH diagnosis is unreliable. I encourage everyone to first attempt dietary and lifestyle changes before committing to medications. Good luck to all.
Thank you for taking the time to work that out, but my Moms LDL was 5.5 that is very high risk. I know she was only off the statin for 8 weeks, but I have to say while she was on Lipitor her total Cholesterol was always under 5. I really can't understand that, could 8 weeks have made that much of a difference. do you think it may have been the spoonful of coconut oil i had incorporated in her diet. I am baffled to say the least.
The different fractions of cholesterol have different molecular weights, so a mmol of say HDL is different size to a mmol of Triglycerides - you can't just add them up, can you? This is one of the few ways where mmol/L is actually inferior to the mg/dL measure.
I can add dollars and cents, pounds and pence, rupees and cents, this is because of 100 cents or pence as unit of measurements, but there is an exchange rate to convert from oneto the other. Like this there is a conversion factor in blood cholesterol measurement units, some countries follow one and other countries follow a different one. The calculation using man made formula refers to UK unit of measurements.
I would like to answer that , but to be honest, my Mom said she felt the same, I know 30 years of statins do so much damage to the body and the brain, and I can't expect results instantly, but how my Moms Cholesterol had gone up in those 8 weeks frightened me. The doctor has now advised she go back on Lipitor and I will have a blood test done in another 8 weeks, hopefully i will keep you posted.
Hi there sorry to hear what your mom is going through,statins can have some unpleasant side effects.i am in my early 40's and my GP thinks I have familial hypercholesterolemia and I have recently started Lipitor.I do not have my cholesterol numbers on hand but I have always had these odd little soft white bumps on my eyelids and was told that can be from cholesterol buildup.Also one of those people that track my macros so I know that on average my daily intake of cholesterol is only between 30 to 50 mg. Per day which should not be causing high numbers in someone my age.This all recent for me but I am told I will unfortunately be taking statins the rest of my life so I feel for your mom.At her age I would personally consider stopping the medication or try halving the dose to see if she feels better and wouldn't hurt to look into the familial aspect.Not any test to tell you that its more into looking at her past history and try to figure out any common links that could point to her maybe have inherited this,family history of early heart attacks and younger people in my family with early aortic calcification are some reasons my doctor went in this direction.Wish I could give you some solid advice but it seems the more you research the more conflicting information you come across regarding the whole situation
Cholesterol intake is largely irrelevant because the body can make too much or fail to remove enough. Some older papers will say it's more influential than it's now thought to be.
Yes you are absolutely right, my Mom had little white lumps under her eyes and thankfully the doctor sent her to the Lipid clinic, the specialist there said her cholesterol was 11 and she should not be here. The statins have kept her cholesterol under 5 for 30 plus years.
Her Mom was only 29 when she died of heart problems and her sisters daughter was only 27.
If you feel ok on Lipitor then carry on, but don't forget to take Ubiquinol every day to help with your muscles. I wish i had known about this years ago. My mom is on 200mg per day now. I know there are many negative things said about Statins and if you can find a better way, thats fine, but if it takes drugs to lower your cholesterol then you have no choice.
Thanks! Very interesting about the white bumps,had them for years and never knew it could mean some underlying problem.I have only been on Lipitor for about a month and haven't noticed side effects but getting my blood work again soon so hopefully can stay on a low dose at least.never heard of Uniquinol but I will look it up
But IMO telling someone they shouldn't be there is disgraceful and seems like a scare tactic to make them take whatever medication is suggested. 11 is high but I've known people with higher.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
statins
statins
Statins
To statin or not to statin - that is the question?
Statins and Fibromyalgia