#217

The NHS is ordinarily reactive but has some centrally set preventative systems such as screening procedures. However, it is v slow to change with science.

#218

Im a doctor so maybe that helped when I insisted on seeing an NHS lipidologist.
She asked how I knew about Lp(a) and how I had it tested.
She sympathised with the lack of primary prevention but added me to a database for future PCSK9i treatment when it emerges.

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#219

Randox do Lp(a) as part of their well man/well woman testing. This is sold as two tests for GBP 350
https://randoxhealth.com/en-GB/in-clinic/everyman-everywoman

I think one of the more advanced medichecks packages also includes Lp(a).

I don’t record Lp(a) in my spreadsheet so cannot find which tests include it.

Randox have branches across the UK (they are an NI company).

#220

Lp(a) test is available free on the NHS. Depending on where you live determines which lab your GP needs to send it to. Im in the north so it was anslysed by the RVI in Newcastle. Had it done 3 times now since 2020.

#221

That’s good to know, maybe there is some light at the end of the tunnel. I have received sympathy too when I have said it feels like I’m bashing my head against a brick wall. And I think my GP shares my frustration with not being able to offer anything that might help (like PCSK9i for example). Unfortunately I don’t think sympathy reduces our CVD risk much though.

Since there seems to be a lack of either resources or willingness in the NHS I have resorted to taking the matter into my own hands. I have been taking 3g of Niacin daily since April and will also be starting Fenofibrate in January. With my GP’s approval I have reduced Atorvastatin from 80mg to 40mg as we hoped this might reduce the amount of muscle pain I get. I’m hoping it’s transitory but the muscle pain has actually increased substantially since making this change nearly four weeks ago.

I had looked into Lp(a) testing in the UK but it seemed exorbitantly expensive compared to the USA much to my surprise. Since we were going to be in the USA anyway it was a no brainer to have the bloods taken there. A full extended lipid panel including Lp(a) and ApoB plus a few other unrelated markers I was interested in came to about $80 with results emailed within 72 hours.

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#222

Cross posting that flozins might help with on the the largest risks of higher Lp(a)

Any thoughts people?

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#223

I’ve been on empagliflozin for at least a few years now, and my most recent echocardiogram (last year I think?) showed no progression of my mild aortic stenosis from high Lp(a).

I also wonder if the incretin mimetics (GLP meds) will show anti-aortic stenosis effects.

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#224

ASCVD genetic medicine, functionally vaccine, portfolio, $500 m in the bank, is that good? One time treatment.

VERVE-101 (PCSK9)
VERVE-201 (ANGPTL3)
VERVE-301 (LPA)

https://ir.vervetx.com/news-releases/news-release-details/verve-therapeutics-announces-pipeline-progress-and-reports-3

Their mission statement changed.

If it works this is going to happen. It’ll look like the Dark Ages before that time, and in this time filled with hucksters, grifters, quack doctors, selling their bullshit cures and preventative strategies. The most significant invention since vaccines if it works.

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#225

Guys, sorry to say it, but the NHS simply isn’t going to give you what you need. Waiting is futile and there’s no point just sitting around until you have a heart attack, so that they can finally give you the medication to prevent a heart attack. It makes no sense.

@Stiv even as a doctor, they don’t deem you worth the 340 quid a month that it costs (BNF is only available in the UK | NICE).

The NHS still treats PCSK9i like they’re some sort of exotic medicine. But these drugs have been on the market for more than TEN years old now. The first clinical trials were almost 15 years ago.

And really, they had you on 80 mg of Atorvastatin? That’s a dumb protocol which clearly hasn’t moved on for decades. It’s well established that you get like 80% of the statin benefit from 10 mg. You’ll get better results and less side effects with 5 mg Rosuvastatin and 10 mg Ezetimibe.

IMO, you need to go and demand better medications, and don’t accept their shoulder shrugging. Alternatively, go seek private prescriptions, go abroad, purchase things yourself. The average UK male has a healthy life expectancy of only 61, and then spends 10 more years living with chronic health conditions. It’s not good enough to settle for “normal”.

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#226

If you have muscle pain from atorvastatin, I would drop it. There are other options. There is of course bempedoic acid and ezetemibe, but sticking with statins, why not try pitavastatin? It doesn’t have nearly as many muscle complaints from patients and doesn’t disregulate your glucose control either. If you can’t get it from your doc, you can always import it from India, it’s not that expensive - that’s what I have done. I’m in the US, but I have completely given up on my PCP and my insurance. I’m over begging and arguing and waiting and hoping. Time flies, and the only one who cares about your health is staring at you in the mirror.

I’d try pitavastatin and see how I feel, and test my lipids. It might work. Beats hoping and waiting. YMMV.

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#227

My mother went from 80 mg Atorvastatin to 10 mg Atorvastatin and Ezetemibe. Her LDL was lower, HDL higher and muscle pain decreased.

I have no idea why PCPs don’t prescribe low dose statin and Ezetemibe and opt for high dose statin instead. It doesn’t make sense to me.

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#228

Thank you for all your suggestions @relaxedmeatball, @CronosTempi and @DeStrider

I agree with everything you’ve all stated and if I knew what I know now I would never have agreed to taking 80mg Atorvastatin. My GP (or PCP) was apparently taking advice from the lipidologist at my local hospital’s Metabolic Clinic. Because my elevated triglycerides weren’t responding to 20mg Atorvastatin they advised to double it to 40mg. After three months my triglycerides had actually slightly increased so they advised to double it again to 80mg. In the meantime I had started investigating and discovered that triglycerides can respond to high dose Omega 3 so had increased my daily dose from 1g to 4g. On the next lipid panel my triglycerides had miraculously nearly halved. I told my GP that this was probably due to the increased Omega 3 but she dismissed that idea and said that my body had just needed the extra strength statins. At this stage I still trusted the NHS so accepted this explanation. Thankfully I still continued with the high dose Omega 3 though.

My trust started to wane after discovering Rapamycin News and all the amazing knowledgeable people who post on here. My CVD protocol is still evolving but this is it for now:

Atorvastatin 40mg (I shall continue to reduce this in steps, first to 20mg and finally 10mg over the next 6 months)
Ezetimibe 10mg
Fenofibrate 160mg
Nebivolol 1.25mg
Aspirin 75mg (or 81mg depending on source)
Colchicine 0.5mg
Niacin 3g
Omega 3 from algae 4g
Metformin 1g
Acarbose 50mg
Finasteride 0.5mg
Nattokinase 10000FU
Regular and Kyolic garlic
Geranylgeraniol 150mg
plus some other supplements like K2, Vitamin D, Pine Bark, etc.

On my list to add gradually over the next 6 to 12 months:

Empagliflozin
Bempedoic Acid

Since reducing the statin dose to 40mg my muscle pain has eventually subsided but it’s still there which is why want to continue to minimise the dose. I will also try alternative statins if I still get pains at 10mg. However I don’t want to abandon statins because they have done a remarkable job in lowering my LDL if nothing else. And yes my HbA1c has inched up a little since starting Atorvastatin in spite of me now taking Metformin and Acarbose.

Even though they would probably be the most helpful thing for my Lp(a) I don’t want to take the risk of importing PCSK9 inhibitors from India due to the temperature storage issues and it would appear it’s impossible for me to obtain them legally in England.

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#229

Whoever this person is, they’re an idiot and this “protocol” is at least a decade out of date. Statins barely touch triglycerides, so anybody prescribing statins for that is terribly misguided.

FYI I am a Professor, not a doctor, and I don’t see patients. But I do research cardiovascular systems and I am friends/colleagues/associates of many awesome cardiologists and top researchers. So my opinions below:

The UK NHS approach (which I’ve seen with my parents) is to give you the crappiest statin - either Atorvastatin or Simvastatin, then just escalate the dose. This is a very old-fashioned approach, which I think is based around saving money rather than good patient care. 40 or 80mg is just stupidity, and of course you’re going to have side effects, including things like insulin resistance.

The well established evidence is that you get the majority of lipid lowering from 10mg of most statins, or even as low as 5mg with a better statin like Rosuvastatin (Crestor). The real bang for buck comes from adding Ezetimibe 10mg/day. For me, 10mg Crestor and 10mg Ezetimibe brought my LDL-C from around 200 to below 80. It also cleared up some fatty liver. (I have genetic condition of abnormally high LDL-C). It’s that simple.

For triglycerides, yes the DHA (fish oil) is an option.

You have described a huge cocktail of other drugs and supplements - many of them with anti-platelet or anti-coagulant properties. I would just say be careful with all of that. Generally it’s not advised to take aspirin etc unless you have evidence of coronary plaque. There is some risk of bleeding, and you’re stacking aspirin, nattokinase, high dose fish oil etc, you can risk GI bleeds, stomach bleeds etc.

PCSK9i might reduce your Lp(a) but they’re not terrible effective. That said, if you want a PCSK9i, it should be possible to go outside of the system, such as a private prescription. Based on the packaging information, the temperature isn’t such a huge deal. Repatha is stable for at least 30 days at room temperature.

Because they are lazy and they’re often just stuck doing the same thing they’ve always done, and haven’t updated along with new evidence. I don’t think there’s any other reasonable explanation.

In the UK, the GP is the “gatekeeper” for everything. You can’t just go and see a cardiologist or lipidologist - you need to be referred by a GP first. The GP is basically dealing with all sorts of people off the street who are coming in with all sorts of ailments and complaints, from depression and anxiety, back injuries, coughs and sniffles, can’t get their wife pregnant, weird rashes, etc etc, so I imagine it’s difficult to keep up with everything. So when this “healthy” (i.e. not dying or suffering from acute disease) dude comes along asking for whatever “exotic” blood tests and some preventative medicine for heart attack and the GP is going to pay you very, very, very little attention. The laziest approach is they test your total cholesterol and LDL, maybe trigs, then give you 10, 20, 40 and 80mg statins. And that whole process of messing around will take maybe 18 months because you’re waiting 3 months for a blood test, another month for a phone call appointment with a nurse who tells you that your LDL-C is high, then another month to see the GP to change the prescription etc etc.

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#230

The standard of care for high cholesterol should be Bempedoic Acid and Ezetemibe. Or at least Statin and Ezetemibe due to the cost of Bempedoic Acid in most places. Ezetemibe is cheap enough.

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#231

But not necessarily heart attacks?

#232

I think the reason is for some because ezetimibe trial didn’t detect any decrease in all-cause or CVD mortality, while high-intensity statins did and has more cohort data.

For me it doesn’t matter so much as I prioritize apoB lowering based on genetic studies anyway, and a trial showing MACE reduction and apparent safety is good enough for me, along with the benefits of lowering via other pathways.

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#233

Atorvastatin is as good if not better than rosuvastatin. Especially in people with diabetes or at risk of it (pre-diabetes or family history). See discussions in this thread: Rosuvastatin versus atorvastatin treatment in adults with coronary artery disease: secondary analysis of the randomised LODESTAR trial (2023)

The evidence for omega 3 is not great. And EPA is probably better than DHA for cardiovascular health in general. (Besides, DHA causes depression.).

But I agree with everything else: the NHS is shit.

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#234

It’s so interesting and timely that you posted this. It confirms everything I learned yesterday, and it explained my entire life with doctors.

I was telling someone ‘in the know’ about how after seeing 5 cardiologists and countless doctors, no doc ever gave me a solid protocol for baby aspirin until this week (after deep diving on the topic in another thread here). This is also the case for my family members and their docs. They had to specifically ask to get a recommendation. In this same conversation I also said I might not even continue seeing a cardiologist because I had to bring him my ideas of colchicine, ezetimibe and bempedoic acid, which he thought were excellent ideas, but he never told me himself. I felt why am I paying him.

It was explained to me that the overwhelming majority of doctors will never be the ones to bring up anything that is not proven and not in the standard protocol, even if they know it will work better, because they can’t get sued if they give you suboptimal ideas as long as they are the standard acceptable suboptimal ideas.

I understood and respected this was the case for not recommending something edgy like rapamycin, but I was shocked to learn it’s the case for even something as simple as aspirin or other cholesterol lowering meds.

I’ve always scratched my head that even my favorite docs only give me great advice on things after I asked. I could never understand why I had to be the one to bring things up, but now it’s all so crystal clear. If I look back, all the pieces of the puzzle seem to fit.

If any of the US docs have a different view of why this happens, my mind is open @KarlT

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#235

I certainly can’t speak for all physicians, and I don’t see scheduled patients in an office. (I’m an ER doc)
My guesses as to what happens:
Most physicians have become employees, and don’t control their schedule. They are expected to see 4-6 patients an hour including the time it takes to document everything. So they have to be fast and go with quick easy answers.
Quality has taken a backseat to speed, quantity, and google reviews.
They can’t possibly keep, up with new information because there is too much of it. About 5000 new papers come out every day.
And realize that although physicians are generally well paid, physicians pay is almost unchanged over the past 20 years. Well below inflation. Few are going to do work they’re not getting paid for. And few physicians will go into the lowest paying specialty of primary care.
And yes, there is some concern about malpractice suits.

Put that all together and you’ll get a short visit in which the physician is direct and goes with the easiest, quickest standard fix to your problem. If you want better than that, you need to be well educated about what you have and want. Or you could seek out concierge medical care.

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#236

Totally agree. Though it does seem that statins have other benefits (like reducing inflammation, and some effects on plaque stabilization). But for preventative medicine in otherwise healthy people, I weight ApoB much more heavily. (Especially in my case with heterozygous familiar hypercholesterolemia)

Ezetimibe, as mentioned by Tom Dayspring many times, is a really great drug but it’s just not that powerful as a monotherapy. And the trail where it was assessed wasn’t the best, so doctors (especially ignorant GPs) have a bad impression of it. For me, it was an absolute game-changer.

That’s a really interesting thread, thanks for sharing. I think my statement of “crappiest” statin was probably unfair and I retract it. That said, those are two different trials with different populations, not a head-to-head, so I don’t think we can conclusively say that one is better. But you’re right that Atorvastatin doesn’t seem objectively worse.

However, of course Rosu is definitely stronger on a mg for mg basis. I just can’t wrap my head around the approach of going up to 80 damn mg of Atorvastatin before adding another drug, when the doctor is looking at a patient with persistently high LDL-C. IMO that’s more about the NHS being stingy than about doing what’s best for the patient.

For example, my mother has LDL-C of around 230mg/dl. (Familiar hypercholesterolemia. I was diagnosed by getting the hell out of the NHS, and now I have LDL-C of less than 40 mg/dl. I’ve also already established that statin monotherapy is totally ineffective for me, so we’d assume the same for her). But in the UK, the doctor prescribed her 10mg Simvastatin. Obviously that did absolutely nothing, which should be a surprise to nobody. Then he increased it to 20 mg. That also did nothing. Then he upped it to 40mg. Then she started to get the muscle aches and her liver enzymes start to go up. And that whole process has taken more than 1 year messing around with appointments, results etc.

A doctor with a functioning brain would look at her, realise she’s not obese, doesn’t have metabolic dysfunction, and this is simply a genetic case, especially given her family history and the fact that her son (and grandchild now) also have sky high LDL-C. Plus, my mother explained that her son is on a very effective combination of drugs. So why not just go with that? It’s basically snobbery where the GP thinks they know best and they can only follow their protocol of dose escalation. So frustrating!

Yeah, omega 3 evidence isn’t great. If he’s taking fish oil rather than one of the pharma products, then presumably he’s getting both DHA and EPA. My point was more about being careful with “thinning” the blood too much, since he’s got high dose fish oil, aspirin, nattokinase etc.

Can I ask where you get “DHA causes depression” from? I know about potential atrial fibrillation at high doses, but I’ve never heard the depression thing before. Thanks.

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