Thoughts on cholesterol/statins: Just want to pick... - MPN Voice

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Thoughts on cholesterol/statins

mhos61 profile image

Just want to pick your brains, anyone who’s interested.

My total cholesterol has increased in the last two years. These are the last three readings 5.2-5.5-6.0. I know 6 is borderline high; however, my HDL to total cholesterol ratio has always been good, present reading 2.83. My triglyceride levels are low, 0.69. BMI 22, blood pressure 110/70 ish. Diet fairly good, prefer fish over meat any day.

My GP has referred me to the in house Pharmacist for a chat🤔. May well be chat about diet, but I’m a bit cautious, in case this is to discuss starting statins. Last year I saw a different GP who said my cholesterol levels were ‘phenomenal’ for my age. I questioned this at the time, as the total cholesterol was 5.5, but she said it’s the ratio that matters, which was 2.7 then.

If I need to go on statins, fair enough, but I don’t want to take another drug unnecessarily. I’ve read so many different ways to interpret cholesterol levels, I’m slightly bewildered at this stage.

Appreciate any input.

Thanks

23 Replies

I was first diagnosed with diabetes 2 in March 2020 and put into isolation at the same time, I knew I was going into isolation for other medical conditions and have been in semi isolation since. I was a real ignoramus about diet but as I live by myself and being overweight guessed I would probably have, as my father had, some sort of diabetes. Since then I have settled my 'diet' a lot via hit or miss, last week I was given the diabetes 6 monthly upgrade, originally in 2020 was 17 1/2 stone, now actually 'settling' at 16 1/2 stone, was down to 15 1/2 stone, but felt very confident and quite rightly settled for a "satisfactory" result. My 'diet' I reckon is rather basic, but quite enjoyable, [I recommend a BIG fridge/freezer excellent for keeping my fruit/veg fresh, meaning I only need one visit to the shops a week] I am a qualified chef [never 'practised'!], but should be able to enjoy xmas this year, allowed a few 'goodies', just had my vaccine booster, no bad side effects, not like AZ one and two, very colourful? Any over weight I have, should not contain much cholesterol? I can get out more which also means losing more weight naturally? I was put on statins many years ago, then I was being put on other medication to counteract their side effects, taking nine different types of medication at one time, I weened myself off the statins, gradually the need for others lessened😗 I quite agree with your 'bewilderedness' all these weird terms🤪beyond me sometimes?

ps a thought I am now on four different pills plus my turmeric capsules👍

mhos61 profile image
mhos61 in reply to Adlon57

Thanks!

Well I am really interested to hear any replies. I have also learnt more from your post about cholesterol than I knew before. My cholesterol seems lower since they changed it from the fasting one. Used to be 6 but now 5. Blood pressure higher though which doesn’t make sense. Hope you get the answers you need

mhos61 profile image
mhos61 in reply to Hopetohelp

Thanks, that’s interesting. This test was a fasting one, as had hbA1c done too, which was fine.

Adlon57 profile image
Adlon57 in reply to Hopetohelp

I have always had high blood pressure, many medical conditions enhance that, probably JMEpilepsy the main contender, forming my own diet has helped my cholesterol, ironically living on my own and being in isolation meant I HAD to form a menu no one to help me, thus by pure experience from my bodies own reactions and online helplines gradually find one which would suit myself! My weight went down but my body did not like it, blood pressure still high, then I would find food I had never had but I actually liked and could include in my 'menu' , my father's nemesis, who also had diabetes, was cheese, I also have a weakness for the stuff, it was like giving up fags, hard! Actually that's how I started gaining weight in the first place, gave up the cigs and left the Post Office, within five years weight from 11 stone to 17 and a half! 🥴 I am 16 and a half now, but as my latest diabetes checkup result says last week, is "satisfactory"! Remember high blood pressure is not only caused via high cholesterol [overweight] and medication, stress was my main cause, I've had one seizure since April 2018 and retirement is just around the corner👍

There’s so much misinformation about statins. I’m on 40mg Atorvastatin and my lipid profile is very good, but I remember reading that one should think of them as ‘risk-reducing’ drugs, not simply ‘cholesterol-lowering’ ones, because of their so-called pleiotropic benefits on the endothelium, increasing the bioavailability of nitric oxide, and so on. You could always discuss the feasibility of going on a less potent one or low dosage, but I’ve not had any AEs in nearly two years.

mhos61 profile image
mhos61 in reply to FG251

Thanks for your input, yes, I definitely appreciate their value, and especially with advancing age, but more importantly, our conditions too.

I’m not convinced I need them just yet, and hopefully it’ll be just a precautionary chat. I need to discuss my point about HDL/TC ratio being optimal. But if the argument proves I need to take them I will.

Do you mind me asking what the basis was for commencing you on statins? I know there can be many factors.

FG251 profile image
FG251 in reply to mhos61

Sure: I had a mild MI in Jan ‘20. Happily I was up and about soon afterwards and suffered no permanent heart muscle damage, but I shan’t forget the admonition by the surgeon who inserted my stent when I told him I had stopped taking statins a few years earlier! I’m on the lowest high dose for secondary prevention and my last lipid panel showed a total cholesterol level of 1.9; LDL of 0.6 and a ratio of 2:1. My haematologist said I could even lower my dosage to 20mg, but I’m sticking to the protocol as I have no AEs and it’s better to be safe than sorry. Good luck with your decision.

Hello mhos - for me have to say the statin (though only a low 10mg dose) brought my counts down from over 8 to under 4 + is pretty much top of my list along with mini aspirin for risk management (my cholesterol however is of the ‘evil bad’ type that runs in my family + isn’t going to come down with all the oats + blueberries in the world)! - hopefully you might avoid having to take them with diet tweaks.

Very best Anne-Marie x

mhos61 profile image
mhos61 in reply to amhann

Thanks Anne-Marie.

My hubby is on statins for the same reason as you describe.

Maybe it might not just be about the numbers. My ET along with my Fathers early death from a coronary thrombosis may also play into any decision making.

It will be interesting to see what the Pharmacist will have to say about my TC/HDL ratio being good though.

Mary

I am on Jakavi and statines. When I had the same question I did some research and noted this quote from a research document for myself: "Utilizing cholesterol-lowering statins in combination with JAK inhibitor treatment may provide a more effective therapeutic strategy for MPN patients than single agent JAK inhibitor use alone. Such combination therapies may also allow for lower doses of JAK inhibitor to be effective in MPN patients, potentially avoiding side effects and complications of higher dose therapy and increasing the number of patients who could tolerate long term JAK inhibitor therapy. "

mhos61 profile image
mhos61 in reply to Johnhoogland

Thanks!

It’s all very interesting with regards to our MPNs. I’ve also read ‘somewhere’ the benefits of taking a statin alongside our treatments.

Statins are on my list to research. I’ve tried 1 statin and within 2 days my leg muscles were sore and I couldn’t wait bare. Then Covid happened and I haven’t seen a GP since.

mhos61 profile image
mhos61 in reply to EleanorPV

Hi Eleanor, thanks for responding.

Side effects are always a concern, hence one of the reasons for posting.

What indicated statin use for you, was your total cholesterol very high?

Hi Mary, I had a stroke 5 years before I was diagnosed with PV. My cholesterol at the time was 5.9 I was immediately put on statins. The first one I tried was OK to start with but after several months I felt it wasn't for me and asked for an alternative. I now take atorvastatin 20mg no side effects whatsoever. 2 years ago I was put on ruxolitinib for the PV. One of the listed side effects can be a rise in cholesterol but it hasn't happened to me.

Carol

mhos61 profile image
mhos61 in reply to MCW22

Thanks Carol. I really appreciate all this feedback.

Sorry to hear about your stroke. Wow, 5.9, not too high by some standards, but with our MPNs maybe it’s more significant.

My hubby is on atorvostatin, he’s fine with it too. He was on simavastin, but they changed him for no reason.

We’ll see what the Pharmacist has to say!

MCW22 profile image
MCW22 in reply to mhos61

Simvastatin was the one I started on but I can't remember why I thought I would be better off trying something different. I think it's the cheapest and so always dished out first. At the time of my stroke they said they couldn't find a cause for the blood clot but I reckon it was probably the then undiagnosed pv. They just didn't look hard enough for the cause. I was also put on Clopidogrel at the same time.

Carol

mhos61 profile image
mhos61 in reply to MCW22

I think your theory is highly likely to be correct Carol.

Hi mhos,

The ratio is what counts. Yours is excellent. I’m 56 and I’ve had high cholesterol 220 (in Austria) for 25 years. My ratio was always 2,75-3.0. I eat lots of omega 3 and little cholesterol. The only time the chol. goes down is when I’m exercising. I eat 70% bio, no grains except rice, no milk products, some butter.

Because of heart problems, I had a coronary CT and all my arteries were crystal clear of cholesterol. The heart problems were coming from my Anagrelide intake. As soon as I took the capsules separately, spread out over the day, all heart palpitations were gone.

Statins are dangerous. They rob those who take them of their strength and mind. As far as I’m informed, they are best for those who have hereditary high cholesterol. If one must take them, then the patient must take CoQ10 to help with the symptoms.

ncbi.nlm.nih.gov/pmc/articl...

Hope to have helped. Anag

Thanks Anag, appreciate your response.

That’s encouraging. Yes, my TC/HDL ratio has always been very good, and this is what I need to clarify tomorrow with the Pharmacist. Slightly concerning that the total cholesterol is trending upwards though.

So, had a chat with the in house Pharmacist. He seemed to think starting statins was the way to go. I explained I wasn’t convinced with my numbers just yet, presented my argument, and long and short of it is. I’ve asked to have another test in six months rather than a year to see how things are then. I don’t want to be foolish either!

Meanwhile, I can try and lower the cholesterol myself (if possible) and do some further research on statins. Seems to be lots of conflicting articles, which makes it hard.

Thanks to all of you who responded

Mary

Hi MaryIt's all quite baffling when it comes to cholesterol. My hubby is on statins as high BP and high cholesterol runs in his family. Looking at the numbers though both his LDL and HDL are high so his ratio is not as bad as it would seem from first glance. Can't remember the numbers but he only agreed to go on the statins due to the hereditary factor.

I hope your further investigations help with your decision - there seem to be so many factors when you through MPN's into the mix!

Gill x

Cheers Gill.

Having an MPN certainly puts a different perspective on the decision making.

My hubby is the same as yours with regards to hereditary factors. His good cholesterol was low and his bad cholesterol was very high, so a no brainier for him to start statins. I feel like I’m in a bit of a grey area!

Thanks for responding

Mary x

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