Should I Finally get my Head out of the Cholesterol Sand?

Just recovering from the shock of my latest blood results, TC is about the highest its ever been 8.7 with LDL of 6.2. Getting the results from a reluctant receptionist was like playing "Play your Cards Right", well can you tell me if it's above 7....no higher, above 8..no higher. I digress.

For the last 6 months or so I have been trying cholestagel, the lipid clinic told me take 2, but the GP only prescribed 1 a day. I did not like to argue that the patient information says starting dose is 6 a day, so I am not surprised that 1 didn't work, but I did not expect LDL to increase.

I have been taking more of a low carb approach recently which has really helped my blood sugar, but obviously not the lipids.

A further complication is that the lipid clinic cancelled an appointment, made me another one for 6 months later which I couldn't do so I cancelled that. This seems to be an unpardonable sin as now I think I have to have another referral. Got GP's appointment Friday. I just don't think the usual rules about diet and exercise apply to those of us with inherited conditions, my levels are higher now than they were 5 years ago when I was 2 stone overweight, not so diet aware and not taking exercise. Fed up and disillusioned!

18 Replies

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  • Aliwally hi its me again please try intermittent fasting it really does help i do not take anything now for lowering my cholesterol i am due my bloods this week with just intermittent fasting i will post my levels as soon as i get them ,i cannot get my levels low with diet as its genetic maybe yours could be genetic not dietry but also check out B12 i take these now to get my muscles and bones back in order from statins i will post more info tomorrow .Do you know your b12 and also vitamin d ?

  • "Compared to other types of weight loss programmes the evidence base of the safety and effectiveness of the 5:2 diet is limited. If you are considering it then you should first talk to your GP to see if it is suitable for you. Not everyone can safely fast." nhs.uk/news/2013/01january/...

  • ok thank you for this DakCB-UK good advice

  • Hi how do you do the fasting. Will it work for high blood pressure

  • Just eat within 6 hours each day same time every day . But drink in between the 6 hours .

  • Sorry to hear about your results Aliwally. Having an inherited condition makes for hard decisions.

    Having locked up cholestagel, apparently one of the common side effects is raised TC levels!

    Good luck with whatever you decide.

  • Thanks Penel. I think cholestagel can raise triglycerides. I didn't get as far as asking for triglyceride levels from reluctant receptionist, will ask on Friday .

  • Sorry, I should have said " raised triglyceride levels".

  • Hi Aliwally. I'm sorry to hear your news.I don't think many of us on here can offer much help as you are so much further down the line of trying different medications. I can only empathise. I have tried four statins and am now on Bezafiibrate. I still don't feel well, but I'm not sure whether I am experiencing side effects from this or the lasting effects of the previous statin. I have been told I must take cholesterol reducing medication of some kind as secondary prevention due to having had an angioplasty. From your posts I gather you have already tried Bezafibrate. Perhaps, as you say, the problem is that your dosage of Cholestagel has been incorrect. I hope you get some answers from your GP this week. Let us know how you get on.

  • Hi Aliwally, Like Florence5, i to have taken 4 different statins in the end i told the doctor i would not take anymore due to the horrible side affects, my cholesterol was 8.5 ,i decided to try kyolic aged garlic stopped eating low fat,went back to butter, i had my cholesterol checked again and it had gone down to 7.2 listen to your own body if it does not feel right its not .Meganbelle

  • Hi are you still taking the garlic and has your cholesterol gone any lower with it.

    thanks.

  • Thank you everybody for your replies and support. My GP was pretty relaxed about it all today and we are going to increase the cholestagel gradually, you can go up to 7 tablets a day, industrial quantities I call that.

    I really find it hard to get cholesterol in perspective sometimes, I either think I am at death's door then I become cavalier and think it doesn't matter, however I am not happy to have an LDL of over 6 and if the cholestagel reduces it even modestly I will be happy. Thanks again.

  • I'm glad to hear that you have a new plan in place. Do keep us posted on how the increasing dosage works for you. I seem to be following in your medication/side effect footsteps. I have just stopped taking the Bezafibrate I was prescribed due to increasing muscle pain.....again! I see the GP in two weeks when, I presume, I will find out what's next on the drugs list for me, although I think I would like a break first to remember what normal feels like, but that's all up for discussion. I sometimes wonder if GPs understand what an emotional and physical rollercoaster we are on.

  • Did you find your triglyceride levels Aliwally?

  • Hi Aliwally,

    I have read that low carbing can increase levels, but I think thats when people eat bigger amounts of meat, dairy etc. Have you tried substituting grains for buckwheat,flaxseed,quinoa and amaranth? These are not grains but whole seeds which would appear to lower ldl. I am trying this and certainly feel better on it, but as I have dismissed myself from lipid clinic, not sure what my cholesterol levels are currently doing. It is doing my waistline and energy levels good though.

    I did get my levels down from 8.9 to 7.5 with the "portfolio" diet, although currently am deviating from this a little by not eating whole grains/oats.

    best wishes

  • Thank you Deepblue. I am not very good at adjusting to alternative foods and yes I probably was eating more dairy, meat and so on. I forgot to ask about the triglycerides Concerned, I was so overwhelmed by my GP's attitude and a BMI of 25. I saw another GP in the practice who I have known for about 30 years and he was really good as I thought he put this high cholesterol "thing" in perspective. He actually took my BP and weight and said high cholesterol is just another risk factor ( I know there are some on here who will not agree!). He certainly didn't push me to try statins again and we are working together to see how titrated doses go. Good co-operation between GP and patient, isn't that how medicine ought to be.

    I am more than ever convinced this is a familial condition, my eldest daughter now has a level of 6.8. I too have abandoned the lipid clinic.

  • If you did want to try some alternatives to grain, quinoa makes a good alternative to rice. It's probably the easiest one to start with. I can't eat anything with gluten in, so have had to go over to 'seeds' rather than 'grains'. One theory is that gluten can cause inflammation in the body (not just coeliacs).

    I'm pleased to hear you have found a doctor who is being supportive.

  • hi rochelle i found the kiolic garlic really helped bring my cholesterol down but in the end i decided to change my diet completely, i stopped eating all low fat foods cut down on pasta and jacket potatoes ,i went to full fat butter and full fat cheese i still grill everything eat sweet potatoes lots of veg, when i told the nurse what i was doing she was not very pleased and said if it worked she would be very surprised,anyway i had my blood test and it came back no action required , you have to remember anything low fat is full of sugar and now the experts are starting to change their minds,just remember it is your body and you know it best hope this helps good luck

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