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Type 1 and Statins.


The Google comment was more tongue in cheek, as we all know that 'Googling' stuff can give you mixed results!

Raised BSL's will definately be something I will monitor. As I said in an earlier post, I have a starting point of now, knowing how I feel and a record of BSL, so any changes to them and any side effects should, in theory, be easy to pick up on. I wanted to hear good and bad on this subject, as I am not going into this blinkered.
 
Please subscribe to zoeharcombe.com before you think about such a trial. She has found that there is no advantage in taking statins for prevention in the situation where there is no sign of a problem or when in a risk category such as T1D. She asserts that there is no link between cholesterol and heart disease (she has evaluated all the trials so should know).
As mentioned above there are reports of a 25% risk-profile for statins, rarely of death but it is there.
GPs are influenced often by drug reps and seem to be unfamiliar with the wide range of statin side-effects. (and drug reps are not going to volunteer all these side-effects)!!!
There is the this 'blindness to side-effect issues' behaviour I have noted as a T!D over 52 years in many doctors when they think the drug is a 'wonder' drug.
Your choice of course but just remember you are the person who would be taking the statin, not your GP.
 
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Mike D said:
@Craig1978 You're one trusting soul. I took them for 3 months before I twigged to what they were doing to me and their disastrous effects lasted for 3 years !!!!!
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I am probably more a cynic than anything else. I liken it to my line of work, I give advice on a daily basis, but it doesn't mean that there are not more knowledgable people out there, so it never hurts to seek other opinions and advice.

Would you elaborate on what your disasterous effects were? It does sound serious in your case.
 
Like any medication there is a risk of death. Before you are prescribed a statin your GP is ethically bound to mention all the possible side-effects to you (see if his list and yours tally up)!! And he has to be able to justify that all the studies done on statins prove that statins are a safe and effective choice for you.
The fact that the companies making statins will not least their research data to independent scientists to evaluate is most worrying - do we trust Big Pharma who is interested in profits over people? We are all guinea pigs to them !!
Their studies and others about saturated fat, cholesterol and heart disease connection have been debunked as showing bias and flawed statistics.
Does your GP have the statistical nous to really know whether statins are safe and effective for what they are advertised for?
 
Do you know what your levels are at the moment?
 
I’m not a fan of statins. I find the entire concept a bit bizarre. Artificially prevent the body from making a critical substance whilst generally ignoring the reasons why it’s overproducing it, then pat ourselves on the back for masking the symptoms of chronic systemic inflammation and ignoring the cause (or making it up). Taking them arbitrarily as some kind of preventative to something is even worse, especially when, on the whole, they don’t actually prevent anything at all.

But of course if someone chooses to take a statin then that is their business.
 
Just as a point of interest, your doctor may do a QRisk on you. The QRisk has boxes to tick and one is for Diabetes, just one. No mention of Diabetes Type, no mention of whether a person's Diabetes is well or poorly managed just a 10% BAM! risk before you even put in the details of your latest lipid panel.
If you do not enter those lipid values it will use a proxy marker which is.... your postcode.
 
Being allergic to many drugs that lots of people take without problems I decided to give statins a wide berth. My philosophy is I have to take insulin, I don’t have a choice. I don’t take anything else including pain killers unless I absolutely have to. Statins are one of those things that are very personal. I see overweight, heavy smokers and drinkers who take every pill known to man to keep them fit. The Dr would do better prescribing a fitness regime and abstinence than a pill. But the drugs reps wouldn’t be happy with that. Statins like everything are a personal choice and there will always be a difference of opinion.
 

You're intent on going your own way regardless of a rundown of my experiences, so write your own diary
 
bulkbiker said:
Do you know what your levels are at the moment?
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Yes, if I have got this right, my 'bad' cholesterol is at 5.5, where it should be around 4, and non T1 levels are around 3.5. Not 100% of the correct terminology or what scale those figures relate to!
 
Mike D said:
You're intent on going your own way regardless of a rundown of my experiences, so write your own diary
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That comes across as a bit harsh tbh, I am not 'intent' of doing anything regardless, otherwise I would not have asked on here.

What I am intent on doing is getting relevant advice on a subject and making an honest, reasoned decision as an Adult with T1 and the complications that go with such a disease. There has been lots of advice and info sources given on this thread, and I will read and digest it all.
 
Bluetit1802 said:
What were your cholesterol results - the full breakdown (HDL/LDL/Triglycerides) and did you fast for the test?
By the way "diabetic levels" in cholesterol are LOWER than the normal standard range, so your nurse is misunderstanding something.
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Not to mention 'normal' actually means 'average' for the general population.
 
Then look at zoeharcombe.com and also google 'statins and rhabdomyolysis'. That is informing yourself.
 
It's so difficult to report drug side effects - yellow card system, I believe? I think statins are helpful to many people but some have side effects sufficient to stop taking them as the side effects are worse than the benefits.
@JMK1954 - is this worth raising with your pharmacist about reporting your experiences? I think if all those here with bad experiences could report them, it might help stop GPs prescribing unnecesssarily? But I've heard the system is very difficult to report.
 
We do not give advice that is for a doctor who had read all the relevant literature, and has the statistical know-how to sift through the dodgy literature and claims which are rife, has not been 'educated' by drug reps and has read all the side-effect literature.
We make suggestions and where appropriate try to give warnings!
That is why you have been directed to credible researchers who possess the appropriate level of expertise to provide a reasoned, unbiased opinion on which to base 'a reasoned decision'. Most doctors lack that ability unfortunately - fed by drug reps and by specialists who have links to the very companies making statins.
Guidelines are biased but often used as an excuse that they are to be followed and not to be questioned.
I have left behind a number of doctors over the past 52 years as a T1D because they were not prepared to question things when there was genuine doubt about a treatment or a better alternative.
It is your call and your responsibility to accept the so-called pluses and minuses of your decision.
Just know that it is like buying a house - you may have to deal with any buyer's remorse !!
And with respect giving advice as an occupation is not the same as knowing how to accept suggestions and make non-advisor-knowledged decisions.
 
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Hi @Craig1978, for what it's worth, my cholesterol was 7.2 (HDL 2.45, trigs 0.5 and the rest LDL). My Diabetes Consultant said my LDL was too high and as far as he could tell was not being caused by what I was eating or a 'lifestyle' approach. (Slim, very active, blah blah). He referred me to a Lipid Consultant who then booked a genetic test for me to see if it was FH (Familial hypercholesterolomia or something like that!).

That test has just come back, I did NOT have FH but they also ran 12 other gene tests to establish whether this was a genetic thing. Simply put, they run those 12 tests each of which indicate whether you have certain genes that affect your LDL production. This was highly positive in that they can now say I have higher than normal polygenic LDL because of genetics. That does not mean that I am abnormal but that my body has a propensity to create more than the so called 3.4 of LDL that they would like.

There is nothing I can do about this, I could be Usain Bolt mixed with an Australian nutritionist (!) and it would make no difference. So, the ONLY way that could be reduced is for me to take statins. Now, in my opinion, why would I do that?, so I can get it down to a 'normal' level that clearly is not normal for my body?. From the HDL and trigs, my body is coping very well with the LDL. My point is that every single individual is different and I agree it is very hard to decide what to do when a Specialist is telling you 'take this'. However, that Specialist goes by the book, type 1?, here is a statin just in case. Got side effects because of it?, here is another pill to combat that, and on and on. I compensate as much as I can for my higher than average LDL, I stay slim, I run, I eat well, I don't drink or smoke.

I will not take statins as I do not believe I am 'ill' with this 'high' LDL, just different. Don't get me wrong, I know it's about future risk too but until they tell me my absolute risk as opposed to my relative risk, I will stay as I am.

Hope this helps.
 
Craig1978 said:
Totally genuine question, What do you know that makes you believe they are a dangerous drug? I am interested in learning as much as I can about this.
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I have taken statins for over 10 years now and I have never had any side effects but that is just me so I have no reason not to take them but some people do have side effects from them as can happen with any drug. It has to be your personal choice to take them or not. I do not buy into the idea that doctors would prescribe a drug to thousands of people world wide that is dangerous and not effective it would not be allowed
 
Hi @Pinkorchid, I admire your trust in Big Pharma. But if you wish to explore further please consider subscribing to zoeharcombe.com - there is someone independent of Big Pharma, Big Food, Govt who is qualified to evaluate all the literature on cholestrol. Also read 'Jennifer Elliott vs DAA, in order to obtain Jennifer's report on the early studies on cholesterol plus see the reevaluate by Rumsden et al in BMJ of the Sydney Diet Heart Study (2016) and of the Minnesotta Study (2013).
We have all been conned !!!
 

Just to clarify this 100% as there seems to be some confusion going on and the thread is getting a little messy.

The type of advice I am looking for is what has been offered here, i.e direction to information sources etc and not direct advice from people as to whether I should or shouldn't take them. I, and I hope others, wouldn't just take something based on these kinds of thread, but just use it as an overview, as well as outside information resources in order to come to a decision.

My point about my job is relevant, the advice I give on my field of expertise will have all the pros and cons, and it would be up to the individual to take that advice, go away and make their own mind up. Just what the point of the thread was about really.
 
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