cholesterol.

bulkbiker

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https://ihda.ie/cac-scan-centers/

This charity lists places in the UK and Ireland where you can get your arteries scanned in order to predict your actual risk of an event regardless of your ldl level or other risk factors.
The films on the site are quite informative too.

Very useful info.. just called Rivers Hospital and the cost is now £350 for the CAC score and the wait time about 1 month.
You can still self refer (which was what I really wanted to know). Probably do my next one next year 4 years after the first.
 
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KK123

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Mr B and I paid for CAC scans a couple of years ago.
V interesting experience.

While we were there, the consultant who gave the results (mine was zero, despite being a carni sat fatter with obesity, pcos, hormone dysregulation and obesity) chatted about how apparently unpredictable the results can be (thats cos you are surprised I was a zero, isn't it?). She mentioned that a colleague, male, slim, fit, tanned, etc. etc. had a horrifyingly high score - to everyone's surprise. Poor man. I expect he is now on condemned to a high whole grain, low fat, statin diet, plus exhaustive exercise.

I really don't think consultants should be judging people's heart attack risk based on weight, appearance and activity, do you?
Had hoped we had moved beyond that by now...

Hi Brunneria, I absolutely agree. They pay far too much attention to physical appearance whether they are diagnosing diabetes/heart health and many other things. I do understand that they are not going to arrange millions of scans or tests 'just to see' BUT they seem happy enough to dish out pills 'just in case'. x
 
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KK123

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Very useful info.. just called Rivers Hospital and the cost is now £350 for the CAC score and the wait time about 1 month.
You can still self refer (which was what I really wanted to know). Probably do my next one next year 4 years after the first.

I am tempted, it would be nice to be able to wave a report about when I'm refusing statins.
 
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KK123

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Thank you for sharing your experience. I had a phone call with my doctor this morning, he is very long suffering, bless him. We discussed a lot of things and he said he is planning to refer me to a lipidologist. We have also set up a face to face meeting on Friday.

Hi Ryhia, please come back and let us know how you get on (if you don't mind). x
 
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Ryhia

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Very useful info.. just called Rivers Hospital and the cost is now £350 for the CAC score and the wait time about 1 month.
You can still self refer (which was what I really wanted to know). Probably do my next one next year 4 years after the first.

Thank you for the price info. There is a hospital local to me so going to ask for a quotation.

Thanks again.
 
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Ryhia

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Hi Ryhia, please come back and let us know how you get on (if you don't mind). x
Certainly will. I find all of this extremely interesting.
 

Ryhia

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I am tempted, it would be nice to be able to wave a report about when I'm refusing statins.
Which is why in an ideal world I would have liked to have had such a report to hand before I had my cholesterol tested. My mistake but seems I have been doing a lot of those lately.
 

bulkbiker

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Which is why in an ideal world I would have liked to have had such a report to hand before I had my cholesterol tested. My mistake but seems I have been doing a lot of those lately.
From another forum I frequent..apt timing I thought

Screenshot 2020-08-11 at 20.16.00.png
 

Ryhia

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Well I have an appointment to see the doc this afternoon. (Friday). Not looking forward to it bloods have been up in the high 6s all morning I am so totally stressed. Of course more importantly from this meeting is where do I go from here? I like low carb eating, I have never felt healthier in my life and I would like to continue eating this way as apart from the cholesterol all my markers are good. Unfortunately because of the way my cholesterol has risen, the thought is that I may have Familial Hypercholesterolemia or another genetic irregularity which makes me at greater risk of CVD. If my cholesterol is likely to continue to rise, I am wondering how and if I can continue eating low carb high fat as I will probably end up with even higher cholesterol at which point my GP may have the heart attack! Wish me luck.

Regards

C.
 

Pipp

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I do wish you luck, @Ryhia.
Whatever you decide, be sure that any research info you check is up to date, and not biased or influenced through being funded by anyone (company or individual) with a self interest, or agenda.

As others have said, your decision. Nobody else’s.
 

bulkbiker

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Unfortunately because of the way my cholesterol has risen, the thought is that I may have Familial Hypercholesterolemia

So far as I am aware FH is something that you have from birth rather than develop over time?

Doctors seem to use it as an "excuse" because they can't explain changes in cholesterol levels and ratios over time so they assume that the calculated LDL levels must be correct and that you have "developed" some thing that you should have had from birth.

I have never felt healthier in my life and I would like to continue eating this way

Seems to make good sense to do exactly that then.
 
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KK123

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So far as I am aware FH is something that you have from birth rather than develop over time?

Yep, that's exactly what my Lipid Consultant said, you have FH practically from birth and if you have had previous cholesterol readings that were 'normal' or a lot lower than what would be seen in FH, then you don't have FH. Interestingly they also checked for something called Lipoprotein A which is also an indicator of higher than average cholesterol. My score as it were WAS higher than an average persons which may also account for my total cholesterol being higher than average). In any case my HDL 2.4/trigs 0.5/LDL 4.5 is good enough for me. I'm not messing with nature.
 

Ryhia

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Just got back from the GP. I have said this before but I will say it again, I want to adopt that man. I have been REPRIEVED! at least for the present although he did say he may not sleep at night. He is going to refer me to a lipidologist, for further exploration. No doubt that will be where the real battle begins. Doc has given me some papers to read relating to statins which I will give him the courtesy of reading.
 

KK123

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Just got back from the GP. I have said this before but I will say it again, I want to adopt that man. I have been REPRIEVED! at least for the present although he did say he may not sleep at night. He is going to refer me to a lipidologist, for further exploration. No doubt that will be where the real battle begins. Doc has given me some papers to read relating to statins which I will give him the courtesy of reading.

Hi there, well done for being persistent. I don't think you will find the Lipidologist in battle mode as such though. They do the tests and the numbers come back, either you have FH or you don't and if you don't you should get some useful info about any other DNA markers that might tell a story about your cholesterol, what is your current breakdown by the way if you don't mind me asking? I have no doubt the Consultant will mention statins at the end of it all but write down some questions if your ratios are spot on etc, I made my Lipid Consultant work for his money. x
 
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Ryhia

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I do wish you luck, @Ryhia.
Whatever you decide, be sure that any research info you check is up to date, and not biased or influenced through being funded by anyone (company or individual) with a self interest, or agenda.

As others have said, your decision. Nobody else’s.
Doc has given me a document on Cholesterol to read up on, all that he asked is that I read it with an open mind which I will try to do.
 

Pipp

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Doc has given me a document on Cholesterol to read up on, all that he asked is that I read it with an open mind which I will try to do.
Would be interested to know the content if you have the time, @Ryhia .
 

Ryhia

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Hi there, well done for being persistent. I don't think you will find the Lipidologist in battle mode as such though. They do the tests and the numbers come back, either you have FH or you don't and if you don't you should get some useful info about any other DNA markers that might tell a story about your cholesterol, what is your current breakdown by the way if you don't mind me asking? I have no doubt the Consultant will mention statins at the end of it all but write down some questions if your ratios are spot on etc, I made my Lipid Consultant work for his money. x
I pasted the results earlier but I will paste them below:

Serum cholesterol 10
Serum Triglycerides 0.9
Serum HDL 1.9
Serum Cholesterol/HDL level 5.3
Se Non HDL Cholesterol level 8.1

I haven't a clue other than what you have mentioned as to what a lipidologist does so I may need to pick your brains as to questions to ask.

Regards.


Would be interested to know the content if you have the time, @Ryhia .

I have actually just read through the documents but was quite disappointed, they are basically just patient information pages so not very insightful. They are from PatientPro the online Patient Library which I can't say I was particularly aware of it before Links are https://patient.info/health/statins-and-other-lipid-lowering-medicines and https://patient.info/health/cholesterol which seems to redirect to a different page to what the hard copy I have shows. Mine has a very little bit on atheroma and cardiovascular diseases.
 

Ryhia

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Just an update:

I have received a letter from the Endocrinologist the other day, which is a copy of the letter they have sent to my GP in response to the request for referral he sent to them.

It makes fairly interesting reading, in that apparently I had a higher than normal cholesterol reading in 2003 when the level was at 5! From this and the way my cholesterol has gone up over the past year whilst following a ketogenic diet, the consultant believes it is unlikely to be FH but that I may have a tendency towards Polygenic Hypercholesterolemia (Still reading up on that) which may have been exacerbated by my Low Carb diet. They want to reassess me once I have been off my ketogenic diet for a period of time. I didn't know I was planning to give up my ketogenic diet although I did say to my GP that I would adjust what I was eating to try to control my cholesterol by diet - meaning I was planning to eat more avocados, cut out the cream and use olive oil instead of butter or lard for cooking. In the letter the Consultant confirmed his intention to arrange a referral to the Lipid clinic in due course, although not sure what in "due course" means on a timeline. The appointment will be over the telephone in the first instance. The Endocrinologist has also referred me to their Dietician as they think this will be extremely useful. I am not so sure about that unless they understand about low carb eating.

The Dietician's referral has now been actioned, I received a letter this morning setting up a telephone appointment for the end of the month.
 

LaoDan

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Just an update:

I have received a letter from the Endocrinologist the other day, which is a copy of the letter they have sent to my GP in response to the request for referral he sent to them.

It makes fairly interesting reading, in that apparently I had a higher than normal cholesterol reading in 2003 when the level was at 5! From this and the way my cholesterol has gone up over the past year whilst following a ketogenic diet, the consultant believes it is unlikely to be FH but that I may have a tendency towards Polygenic Hypercholesterolemia (Still reading up on that) which may have been exacerbated by my Low Carb diet. They want to reassess me once I have been off my ketogenic diet for a period of time. I didn't know I was planning to give up my ketogenic diet although I did say to my GP that I would adjust what I was eating to try to control my cholesterol by diet - meaning I was planning to eat more avocados, cut out the cream and use olive oil instead of butter or lard for cooking. In the letter the Consultant confirmed his intention to arrange a referral to the Lipid clinic in due course, although not sure what in "due course" means on a timeline. The appointment will be over the telephone in the first instance. The Endocrinologist has also referred me to their Dietician as they think this will be extremely useful. I am not so sure about that unless they understand about low carb eating.

The Dietician's referral has now been actioned, I received a letter this morning setting up a telephone appointment for the end of the month.
Wondering what your new diet will look like . I’ve added more protein to my diet, which has kicked me out of ketosis. It seems adding carbs might be hard on the body. BTW I’m a big fan of avocados, leaning towards cold pressed oils sounds like a worthwhile try. Anything but carbs
 

bulkbiker

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The Dietician's referral has now been actioned, I received a letter this morning setting up a telephone appointment for the end of the month.
That will be very interesting.. please share the results..
 
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