cholesterol.

[KK123]

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.

Thanks for coming back to us. Polygenic means inherited basically, ie it's in your genes. My results confirmed this for me and the Consultant said the only way of lowering it was by statins!!! No thanks, I'll take my chances that in the absence of any associated issues my body copes with it just fine. x

 

[Ryhia]

Thanks for coming back to us. Polygenic means inherited basically, ie it's in your genes. My results confirmed this for me and the Consultant said the only way of lowering it was by statins!!! No thanks, I'll take my chances that in the absence of any associated issues my body copes with it just fine. x

I suspect that my doc had mentioned my reluctance to take statins as in the copy letter the consulted stated that the only therapeutic way of dealing with the cholesterol was through statins or ezetimibe.

 

[Ryhia]

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

It will be interesting to see what they recommend but I will be very upset if once more I am told to eat carbs.. carbs.. and more carbs.

 

[Ryhia]

I have just received word back from the private hospital I was looking to arrange a CAC scan with, unfortunately it was to tell me that the hospital does not provide CAC Scans in my region. Further investigations required.

 

[bulkbiker]

I have just received word back from the private hospital I was looking to arrange a CAC scan with, unfortunately it was to tell me that the hospital does not provide CAC Scans in my region. Further investigations required.

Which hospital and which region? I've done a fair bit of research on the subject...

 

[DCUKMod]

For those not familiar with polygenic hypercholesterolaemia, the following link gives a very high level explanation. This is from the GP Notebook, and explains the variation from familial hypercholesterolaemia.

https://gpnotebook.com/simplepage.cfm?ID=-1261436916

(I'm following this with interest @Ryhia )

 

[Ryhia]

Which hospital and which region? I've done a fair bit of research on the subject...

I tried Spire in the North East. They suggested that Newcastle RVI (Private Section) may carry them out but when I looked at their web site you need a referral from your GP. There is also a Nuffield in the area but again I think you need to be referred.

 

[Ryhia]

For those not familiar with polygenic hypercholesterolaemia, the following link gives a very high level explanation. This is from the GP Notebook, and explains the variation from familial hypercholesterolaemia.

https://gpnotebook.com/simplepage.cfm?ID=-1261436916

(I'm following this with interest @Ryhia )

Thank you so much for this really useful link.

 

[bulkbiker]

I tried Spire in the North East. They suggested that Newcastle RVI (Private Section) may carry them out but when I looked at their web site you need a referral from your GP. There is also a Nuffield in the area but again I think you need to be referred.

The only place I have found that doesn't need a referral is Rivers Hospital in Hertfordshire.
You can self refer if you pass some diagnostic criteria (fairly easy to do).
If you are self funding though I guess your doc shouldn't have a problem with the referral? They might even learn something new.

 

[DCUKMod]

I tried Spire in the North East. They suggested that Newcastle RVI (Private Section) may carry them out but when I looked at their web site you need a referral from your GP. There is also a Nuffield in the area but again I think you need to be referred.

Ryhia - I can't imagine a GP is going to object too much to to you wanting to spend your own money.

If they were being sniffy about it, they might elect to charge you for the referral (making it a private referral to private facility). If you want to bypass your GP, just Google "private GP near me". You might be surprised how many there are, and certainly Spire an BUPA have GP services.

You do not need a referral to a Private GP, although they would charge you for your consultation.

There are many roads to Damascus/ways to skin a cat, or whichever cliche you choose.

 

[Ryhia]

Enquired of a hospital near me - GP referral required then £250 for the consultation and £600 for the scan. She reckoned budget for £1000. Looking for cheaper options but I don't think they will be any in my area. I knew there was a reason I didn't go on holiday this year.

 

[Brunneria]

Enquired of a hospital near me - GP referral required then £250 for the consultation and £600 for the scan. She reckoned budget for £1000. Looking for cheaper options but I don't think they will be any in my area. I knew there was a reason I didn't go on holiday this year.

I don't know where you live, but when my husband and I had our scans we self referred to Rivers Hospital in Hertfordshire, drove there, stayed the night in a B&B, then drove back the next day. For 2 of us, accommodation and travel was approx the same price as for a single scan at one of the other units. Bargain.

 

[Ryhia]

Ryhia - I can't imagine a GP is going to object too much to to you wanting to spend your own money.

If they were being sniffy about it, they might elect to charge you for the referral (making it a private referral to private facility). If you want to bypass your GP, just Google "private GP near me". You might be surprised how many there are, and certainly Spire an BUPA have GP services.

You do not need a referral to a Private GP, although they would charge you for your consultation.

There are many roads to Damascus/ways to skin a cat, or whichever cliche you choose.

The Damascus road had a good outcome (Depending upon your point of view of course) So I'll plump for that option. Better than a skinned cat at any rate!

I have just heard back from a Spire Hospital a couple of hours away they will do a scan for £795 but again its subject to a GP referral. Apparently they do scans every Friday and I would just need the Docs letter. I have already mentioned my desire for a CAC scan to my GP not sure if he wasn't laughing behind his mask though, probably felt it was overkill over a little statin.

 

[Ryhia]

I don't know where you live, but when my husband and I had our scans we self referred to Rivers Hospital in Hertfordshire, drove there, stayed the night in a B&B, then drove back the next day. For 2 of us, accommodation and travel was approx the same price as for a single scan at one of the other units. Bargain.

Thanks @Brunneria, @bulkbiker has already mentioned Rivers Hospital. I thought this might be impractical as we live the other side of the country however looking at the journey it is achievable around 5 hours away. Actually we plan to visit family in Wiltshire soon, if everything is not locked down again, the Rivers Hospital is 2 and a bit hours journey from there so maybe with a bit of planning something can be worked out.

 

[Ryhia]

Had my appointment with the dietician the other week. I didn't know what to expect but it was quite a positive experience, fortunately she was familiar with a low carb way of eating. Basically we went through the types of food I was having on a daily basis, I also mentioned the changes I had made, I'm still eating quite low carb but have modified my diet to include more fiibre and fish, I've also swapped butter for extra virgin olive oil and dropped cream from my diet as well as adding a lot more avocados. She was quite approving generally in what I was eating and felt that I was getting sufficient nutrients in my diet. Interestingly she offered the information that 150gm of carbs a day is only recommended to ensure that people get all the nutrients they require. Whenever a nurse or dietician has said to me "You must eat carbs" they have not been able to answer the question why? This is the first time that a dietician has said has made some sense.

She did suggest a couple of changes to food which were a little inclined towards lowering saturated fats but it wasn't an issue for me as they were only small adjustments. She suggested swapping my Greek yogurt for low fat Greek yogurt with the same amount of carbs and to perhaps have Edam rather than some of the other hard cheeses; eggs she suggested 7 a week. She also mentioned soya cream as an option. I admit some of the modifications I found strange as basically she said that high cholesterol is not the result of the food we eat and she thinks my issue is genetic. Maybe genetics have an impact on how we react to food, I don't know and didn't think to ask. All in all it was a good meeting with lots of positive approval going on, she even complimented me on my blood glucose control which I don't get from my surgery. I recommended she take a look at this forum, I hope she does.

Now I am just waiting to have my telephone appointment with the Lipidologist, this is due to take place on the 12th October if it is not cancelled. @KK123, have you any idea what things are likely to be discussed?

 

[KK123]

Had my appointment with the dietician the other week. I didn't know what to expect but it was quite a positive experience, fortunately she was familiar with a low carb way of eating. Basically we went through the types of food I was having on a daily basis, I also mentioned the changes I had made, I'm still eating quite low carb but have modified my diet to include more fiibre and fish, I've also swapped butter for extra virgin olive oil and dropped cream from my diet as well as adding a lot more avocados. She was quite approving generally in what I was eating and felt that I was getting sufficient nutrients in my diet. Interestingly she offered the information that 150gm of carbs a day is only recommended to ensure that people get all the nutrients they require. Whenever a nurse or dietician has said to me "You must eat carbs" they have not been able to answer the question why? This is the first time that a dietician has said has made some sense.

She did suggest a couple of changes to food which were a little inclined towards lowering saturated fats but it wasn't an issue for me as they were only small adjustments. She suggested swapping my Greek yogurt for low fat Greek yogurt with the same amount of carbs and to perhaps have Edam rather than some of the other hard cheeses; eggs she suggested 7 a week. She also mentioned soya cream as an option. I admit some of the modifications I found strange as basically she said that high cholesterol is not the result of the food we eat and she thinks my issue is genetic. Maybe genetics have an impact on how we react to food, I don't know and didn't think to ask. All in all it was a good meeting with lots of positive approval going on, she even complimented me on my blood glucose control which I don't get from my surgery. I recommended she take a look at this forum, I hope she does.

Now I am just waiting to have my telephone appointment with the Lipidologist, this is due to take place on the 12th October if it is not cancelled. @KK123, have you any idea what things are likely to be discussed?

Hi Ryhia, is this your first appointment with the Lipidologist? At my first appointment he talked about cholesterol in the same way as any Dr would, ie anything over 5 is 'bad', LDL is the 'main' one to be concerned about along with trigs. The thing was my results had been a total of 8, (HDL 2.4, trigs 0.5 and LDL around 4.5). I asked him; What about the ratios and he admitted that mine were 'ok' but LDL on its own was a problem.

I asked him about food and he said that food did NOT really make much difference as a body would generally make up any cholesterol it didn't get from food to maintain its balance.

I'm afraid mostly he said 'You MUST take statins'. I asked him why I should given that there appeared to be NO reason other than being diabetic, he just said 'in case'. He arranged a cholesterol test and sent me off to a newly formed 'clinic' that looked at FH and did DNA tests to determine any inherited traits. That came back about a month later and it did show that out of around 12 markers I DID have a genetic profile that meant my cholesterol was NEVER going to be under '5' without pills.

He then called me in for a follow up appointment and said STATINS again. I said no and he said 'Don't come and see me anymore then and go back to your Dr'. He was a nice bloke but I'm afraid they all seem to want to pedal statins. It did make me think should I, but I kept thinking back to him saying my ratios were good and there were no signs of blocked arteries and my so called lifestyle was good too.

So, in conclusion, it was great to get those extra DNA tests as it showed I did not have FH but that no matter what I did it wasn't going to change what MY body produced on its own. x

 

[HSSS]

Hi Ryhia, is this your first appointment with the Lipidologist? At my first appointment he talked about cholesterol in the same way as any Dr would, ie anything over 5 is 'bad', LDL is the 'main' one to be concerned about along with trigs. The thing was my results had been a total of 8, (HDL 2.4, trigs 0.5 and LDL around 4.5). I asked him; What about the ratios and he admitted that mine were 'ok' but LDL on its own was a problem.

I asked him about food and he said that food did NOT really make much difference as a body would generally make up any cholesterol it didn't get from food to maintain its balance.

I'm afraid mostly he said 'You MUST take statins'. I asked him why I should given that there appeared to be NO reason other than being diabetic, he just said 'in case'. He arranged a cholesterol test and sent me off to a newly formed 'clinic' that looked at FH and did DNA tests to determine any inherited traits. That came back about a month later and it did show that out of around 12 markers I DID have a genetic profile that meant my cholesterol was NEVER going to be under '5' without pills.

He then called me in for a follow up appointment and said STATINS again. I said no and he said 'Don't come and see me anymore then and go back to your Dr'. He was a nice bloke but I'm afraid they all seem to want to pedal statins. It did make me think should I, but I kept thinking back to him saying my ratios were good and there were no signs of blocked arteries and my so called lifestyle was good too.

So, in conclusion, it was great to get those extra DNA tests as it showed I did not have FH but that no matter what I did it wasn't going to change what MY body produced on its own. x

Interesting that there are genetic markers that raise cholesterol that are not FH either.

Just about every single member of my family on both sides have higher cholesterol. Including vegetarians, meat eaters, fat and thin, fit and not etc. Most have no idea of their ratios and many have agreed to statins and still only just get normal figures. In all of that only 2 heart attacks in men aged in their 70’s, one mild, one fatal (Lots of other risk factors there though!).

 

[KK123]

Interesting that there are genetic markers that raise cholesterol that are not FH either.

Just about every single member of my family on both sides have higher cholesterol. Including vegetarians, meat eaters, fat and thin, fit and not etc. Most have no idea of their ratios and many have agreed to statins and still only just get normal figures. In all of that only 2 heart attacks in men aged in their 70’s, one mild, one fatal (Lots of other risk factors there though!).

Yep, I didn't know that beforehand either. There is also a protein called lipoprotein A (google it) which again means a person's LDL will be higher than 'average' whatever average is considering how different we all are. I could cut & paste a list of the 12 markers if anybody is interested but you wouldn't know your 'score' unless you were specifically tested. I think the only reason I got that far for testingwith a cholesterol total of 8 (when they reckon over 10 is the guideline for further testing) is that this clinic was newly set up and they wanted a few guinea pigs. I didn't have FH by the way. x

 

[Ryhia]

Hi Ryhia, is this your first appointment with the Lipidologist? At my first appointment he talked about cholesterol in the same way as any Dr would, ie anything over 5 is 'bad', LDL is the 'main' one to be concerned about along with trigs. The thing was my results had been a total of 8, (HDL 2.4, trigs 0.5 and LDL around 4.5). I asked him; What about the ratios and he admitted that mine were 'ok' but LDL on its own was a problem.

I think your results were brilliant. Can't see what he was having all the fuss about.

I asked him about food and he said that food did NOT really make much difference as a body would generally make up any cholesterol it didn't get from food to maintain its balance.

That was my understanding that its not food that gives high cholesterol but given that, I then don't understand why my cholesterol should have gone up so much, all I have been doing different is to eat low carb I actually bought a couple of cholesterol tests to try however its difficult to read the results as its a choice between different shades of green as to your level, unfortunately the shades of green are very similar. That said, both me and my hubby thought my levels might have lowered by a couple of points. No doubt I will find out later.

I'm afraid mostly he said 'You MUST take statins'. I asked him why I should given that there appeared to be NO reason other than being diabetic, he just said 'in case'. He arranged a cholesterol test and sent me off to a newly formed 'clinic' that looked at FH and did DNA tests to determine any inherited traits. That came back about a month later and it did show that out of around 12 markers I DID have a genetic profile that meant my cholesterol was NEVER going to be under '5' without pills.

They have already said that the only way to treat high cholesterol is with statins or ezetimibe. My opinion is that if it has taken a year to bring my cholesterol to these levels, (if it is the diet and not something else going on) then I want another year to try to bring it down by my own efforts. If things aren't changing then I may reassess or copy Dave Feldman approach to lowering cholesterol and eat a lot of carbs a few days before the test.

Not quite sure that my cholesterol is never going to be under 5 without pills. It was 4.7 when I was first diagnosed.

Interesting about the DNA tests, was this just related to cholesterol? Not sure I would want to know of any other issues I have the potential for in the future. It may be interesting to know what the 12 markers are but please don't put yourself out I can wait.

He then called me in for a follow up appointment and said STATINS again. I said no and he said 'Don't come and see me anymore then and go back to your Dr'. He was a nice bloke but I'm afraid they all seem to want to pedal statins. It did make me think should I, but I kept thinking back to him saying my ratios were good and there were no signs of blocked arteries and my so called lifestyle was good too.

I'm being very inquisitive, so please feel free not to respond. How did you know there was not signs of blocked arteries? I was hoping to have a CAC scan but as we are now in lockdown I don't think that is going to happen any time soon.

The letter the Consultant sent to my GP basically said that "statins often get a bad press by the media who tend to overplay the small potential risk of side effects against the well recognised beneficial effects in terms of preventing cardiovascular disease." Think that was put in the letter for my benefit but shows how they are going to play their cards. May need to search out some of the really interesting scientific papers to offer a different view.

So, in conclusion, it was great to get those extra DNA tests as it showed I did not have FH but that no matter what I did it wasn't going to change what MY body produced on its own. x


Thank you so much for taking the time to respond, this information has been so useful to me.

 

[Ryhia]

Interesting that there are genetic markers that raise cholesterol that are not FH either.

Just about every single member of my family on both sides have higher cholesterol. Including vegetarians, meat eaters, fat and thin, fit and not etc. Most have no idea of their ratios and many have agreed to statins and still only just get normal figures. In all of that only 2 heart attacks in men aged in their 70’s, one mild, one fatal (Lots of other risk factors there though!).

My brother, T2 TOFI, who had a heart attack (he's fine) a few weeks into the first lockdown was already taking statins so they didn't do him much good.