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Really High Cholosterol - 13 - Please Help

JoeT1

Well-Known Member
Messages
277
Location
Ireland
Type of diabetes
Type 1
Treatment type
Insulin
Hi All,

I have been thinking i'm managing my Type 1 really well, my HBA1C since diagnosis has been decent and I have been exercising a lot etc. I have a clinic next week where I will sit down with my specialist and review some blood results taken last week. The doctor rang me today, asking if I was definitely fasting during the test, which I was.

The result for my cholesterol was 13, way way above what it should be. I don't overeat particularly and have been restricting myself quite a bit. I feel incredibly worried that this means I have heart problems? That no matter what I am doing, it's not working etc. I don't know how I am going to go about bringing it down without medication or restricting myself even more.

Very worried. Has anyone gone that high before?
 

Your doctor will more than likely recommend statins and ask about diet and exercise.
Please make sure you look at all of the downsides that statins bring before agreeing to take them. There is an overwhelming amount of evidence to suggest they don’t help at all and are in fact very harmful. Yes they might lower LDL, but high LDL doesn’t necessarily mean you’re heading for a heart attack.
 
hi joe when i was first diagnosed my cholostrel was very high now in the year since i havent taken any medication for it and im now at normal range i mentioned it to dietician and she said it was probably because im not eating so many saturated fats and that too much protien also elevates it hope this helps a bit she said when type 1s go low carb they tend to eat more red meats and saturated fats and protiens
 
I would ask them to do the proper tests for Familial Hyercholesterolaemia.
I beleive it is down to genetics, and if the tests confirm it, then management is very different from how the rest of us manage 'high' cholesterol.

Keep pushing until the tests have been done, because even if they come back negative, you will have eliminated FC as a possiblity.

Hope your appointment goes well. It is always nervewracking when you don't know what is going on!
 
No experience of this myself but if I remember correctly @mountaintom was recently diagnosed and had rather high cholesterol results if there's any experience he can offer (apologies if I'm mistaken).
 

Hi @JoeT1 - Yes, that's quite a big number.

Do any of your family members have elevated cholesterol? Whilst many people can influence their cholesterol numbers by diet and lifestyle, there are some for whom a condition called familial hypercholesterolemia comes into play. As you would imagine there are several interweb pages for the condition, but Wiki is an easy starter: https://en.wikipedia.org/wiki/Familial_hypercholesterolemia

Clearly, I am not diagnosing you with anything but the condition just explains why, for some people, the numbers can just be a bit apparently bonkers.

It makes sense to discuss it all with your Consultant, but also to get the breakdown of your readings, just to better understand what might be going on.
 
My Doctor has actually called me back, he is referring me to a hospital to test for familial hypercholesterolamia. He said that my HBA1C is 44, so he would have liked my cholesterol to have followed suit, but it's a bit worrying that it hasn't. Has anyone had this test before? Is that directly what it checks for?

My other question is, are you then on treatment for life? Pills? Really strict diet etc?

I feel like I was doing so well. Now, i'm pushed back 10 steps again.
 
My blood results. Seems my HDL and Trgs are normal, but Ldl is very high... Any comments?
 
Your triglyceride/HDL ratio is excellent.
Have a read of www.cholestrolcode.com
Dave Feldman is a bit of a legend in keto world for his investigations into the subject.
I know you have been following a ketogenic diet and this may well explain these results.

Oops just seen you have already been recommended to Dave's site but really go have a read.
You might also be interested in this video
Its quite long but very informative.
 
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Hi. Yes I was 13.8 many yrs ago. I mostly eat healthy and exercise. I reduced my fat intake further but couldn't get below 8 without medication. However being on the highest dose cannot get me below 6.2. I'm told it's familial and nothing I do will make it better (believe me I've tried). I'm now reluctantly taking fenofibrate as well as statin. Only been doing that for few months and yet to have a test to see the effect.
If it's familial there's nothing you can do. Unfortunately it's more drugs. They'll prob start with statins only to see if that helps. Good luck
 
Hello @JoeT1

Just to share my experience.. my cholesterol level has been good with total cholesterol of less than 3 before diagnosis. I changed my diet to low carb after I was diagnosed and my total cholesterol went up to as high as 9.6 (LDL6.2, HDL3.1, Trig 0.8). That's when I stopped on coconut oil..which I was consuming in a large quantity basically trying to gain weight.. Since then it has come down gradually and my last cholesterol numbers were 6.1 (LDL3.3 HDL 2.5 Trig 0.6) which I'm happy with.

I know 13 is high and I understand your concern. I hope your case is like me and you don't have FH. All the best
 
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I was referred to a lipid consultant who decided I had FH, doubled my statin to 80mg and put me on ezetrol which reduces cholesterol absorption. My cholesterol went up to 10.1 following LC diet but then plummeted to 3.3. No one else in the family has excessive cholesterol levels - so I'd it actually FH? Consultant couldn't explain the rapid rise and equally rapid fall. Since there is absolutely no point in trying to discuss this with any medical professional, I have decided to half the statin dose and see what happens to the TC at my next blood test.
 
Uffe Ravnskov on FH :
http://www.ravnskov.nu/2015/12/30/the-benefits-of-high-cholesterol/
"If you add the figures and compare them you will see that people with familial hypercholesterolemia live at least as long as other people,if not longer. A little more die from heart disease, but fewer die from cancer and other diseases."
Geoff

See the trend ? When cholesterol and LDL are (wrongly IMO) the villains, statins are the answer. This hypothesis is increasingly on its way out, but GPs and cardiologists may take some time to get up to speed on this.
 
Thank you all for your great responses. It has given me a lot to read and think about.

It just doesn't make a whole pile of sense to me. My diabetes is well controlled, i'm physically very active, my diet consists mostly of vegetables, cauliflower rice etc. My meat and egg intake is a large part of my diet, but it's not nearly as much as I would expect someone to be eating in order to reach 13 for there cholesterol, or 10 LDL as that seems to be the bad type that they will be worried about.

Question - How long does a cholesterol check measure? 12weeks? 6weeks? On the day?

I'm not overly worried today believe it or not, I guess because I feel decent and am so active that I "feel" like i'm doing all of the right things. I swapped some red meat such as lamb chops and beef mince for quorn or turkey mince and have been having some sugar free jelly in order to kill the hunger that I would sometimes quince with some salami.

I guess I will see what the diabetic specialist says on Tuesday. This may have been something they see regularly? Can she actually prescribe some cholesterol lowering medication short term to see how it works?

From learning massive amounts about my diet and adapting, i'm just now wondering how much more I need to adapt it now. I mean, my diet is really good, and on a Saturday or Sunday I like to enjoy some bacon and eggs as a treat, is this still possible?

I'm sounding like a right newbie again
 
It seems you should be referred to a specialist lipid clinic, according to NICE.

Lipid measurement and referral


1.3.5Use the clinical findings, lipid profile and family history to judge the likelihood of a familial lipid disorder rather than the use of strict lipid cut‑off values alone. [new 2014]

1.3.6 Exclude possible common secondary causes of dyslipidaemia (such as excess alcohol, uncontrolled diabetes, hypothyroidism, liver disease and nephrotic syndrome) before referring for specialist review. [new 2014]

1.3.7 Consider the possibility of familial hypercholesterolaemia and investigate as described in familial hypercholesterolaemia (NICE guideline CG71) if they have:

  • a total cholesterol concentration more than 7.5 mmol/litre and

  • a family history of premature coronary heart disease. [new 2014]
1.3.8 Arrange for specialist assessment of people with a total cholesterol concentration of more than 9.0 mmol/litre or a non‑HDL cholesterol concentration of more than 7.5 mmol/litre even in the absence of a first‑degree family history of premature coronary heart disease. [new 2014]

1.3.9 Refer for urgent specialist review if a person has a triglyceride concentration of more than 20 mmol/litre that is not a result of excess alcohol or poor glycaemic control. [new 2014]

1.3.10 In people with a triglyceride concentration between 10 and 20 mmol/litre:

  • repeat the triglyceride measurement with a fasting test (after an interval of 5 days, but within 2 weeks) and

  • review for potential secondary causes of hyperlipidaemia and

  • seek specialist advice if the triglyceride concentration remains above 10 mmol/litre. [new 2014]
1.3.11 In people with a triglyceride concentration between 4.5 and 9.9 mmol/litre:

  • be aware that the CVD risk may be underestimated by risk assessment tools and

  • optimise the management of other CVD risk factors present and

  • seek specialist advice if non‑HDL cholesterol concentration is more than 7.5 mmol/litre. [new 2014]
https://www.nice.org.uk/guidance/cg...d-assessing-cardiovascular-disease-cvd-risk-2
 
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