Statins and type 1

[Zinadane]

So what about Ace inhibitors?

 

[Juicyj]

Despite being a mod I don’t feel I have enough knowledge about statins hence a question to a more knowledgeable audience @Seacrow its not something I’ve ever given much deep thought to.

This thread has been really useful in particular to hear from those who take it and why they have done. Also because I am not taking a medication because of a recommendation but because there may be a real health benefit in doing so. I haven’t yet read anything that changes my opinion though, but thanks all for your contributions this has been really helpful

 

[Rusty_Sweetbread]

Lots of good reading on the topic of statins, but it's an ever-changing world.
https://bpac.org.nz/BPJ/2010/August/statins.aspx

My endocrinologist recommended statins when I was diagnosed, but I declined.

I waited a year or so before starting them, as I am now happier taking preventative medicine to reduce the risk of cardiovascular disease.

P.S. They've recently reviewed the risk equations for CVD (as they were based on Americans living in 1948), and seen that diabetes is as bad a smoking if you're a middle-aged (or older) man.
See graph - smoking on the left, diabetes on the right: https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.108.835470 . Basically the same picture.

Graph was taken from here: https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.108.835470

And there's more where that came from:
https://www.nzma.org.nz/journal/rea...2019/2017/vol-130-no-1463-6-october-2017/7378

It's easy enough to ask your doctor to stop taking them.
But I'd get started on them, do some reading and then decide.

 

[DCUKMod]

@Juicyj - have you run your numbers through Qrisk3, or any other lipid calculator? There is another xxellent one, but I don't have a link on my iPad, and can't for the life of me recall the name of it.

 

[NicoleC1971]

Thanks both, I haven’t really tuned into the reasoning behind whether they are beneficial for my health yet, not sure if I am just a number to my practise or if there is a real health benefit there so will need to do some research but don’t feel happy about being told I have to take them because of my diabetes.

I am a statin refusenik but the rationale is that because I have increased risk due to higher than normal bgs (most type 1s), I should mitigate my risk by lowering my LDL; the narrative is that your arterial wall is damaged by glycation and the body sends a sticking plaster/scab along to repair it (LDL) however too many scabs result in a risk of a clot forming and breaking away resulting in a blocked artery and a heart attack.
The doctor will be encouraged to prescribe statins to all type 1s and gets a tick in the box for doing so.
From what I have read the damage from glycation is real but the hypothesis of the repair process may be just that.
My focus is therefore on keeping my triglycerides/hdl ratio good and to aim for as normal a blood sugar as possible (I find this nearly impossible but keep fighting the good fight.)
See BulkBiker's sticky thread on all the research before you decide and be prepared to Just Say No as the docs can be pushy on the topic! If you do decide to follow the conventional advice they may not do you any harm though and most people don't get side effects.

 

[tom58]

Same thing with aspirin. "You must take daily aspirin because you're a diabetic". I haven't the will to argue. I accept the prescription but never take the pills. Fortunately my doctor never asks.

 

[Marie 2]

@tom58 There is some controversy brewing over aspirin now too.
https://www.heart.org/en/news/2019/...ur-doctor-prescribes-it-new-guidelines-advise

 

[Paul520785]

I was told to take statins and did so for a couple of years until I started to get terrible cramp on both sides of both legs every night. Gp said this was not caused by the statins but after 3 months of agony I decided to stop the statins and 5 weeks later the cramps stopped. Now my consultant usually asks if I would take statins and then says "your cholesterol is OK so I will not push it as I can remember your answer!"
Medical professionals have a little knowledge on most things but appear to lack a full understanding of all aspects. (based on 70 years experience)
You need to make up your own mind because every one is different but it's really 6 of one v's half a dozen of the other

T1 for 60+years

 

[Cap'n M]

I'm a former GP. I've had type 1.5 for 10 years. I was very statin sensitive and 10mg of Simvastatin reduced my total cholesterol to 3.91, at one point. After 18mths on statins, I began getting side-effects. As the onset was insidious, it took some time for the penny to drop. The most profound effect was on muscles and tendons. I lost muscle bulk, I lost weight down to 71 kilos and very troubling for me as a jogger were calf muscle and ankle tendon tears, provoked by running.
I was also getting weird neurological symptoms, widespread paraesthesiae and loss of joint positioning. In retrospect I'm sure that my mood and cognitive functions were depressed. There were other symptoms too, which I'll not go into now.
I did some homework, especially around Spacedoc.com and realised that I was being poisoned! My experience is towards the extreme end as I suspect my genetics mean that I do not tolerate Mevalonate blockade at all well.
Stopping statins IMMEDIATELY stopped my calf muscle tears. I've not suffered ONE since, despite running 2 x 5km each week.
I've taken CoEnzyme Q10 and PQQ, which I suspect has enabled my recovery. The neurological symptoms were the slowest to recover.
It could be that statins can trigger Dementia and progressive neurological disorders, quicker in susceptible individuals and slower in others?
Medical Professionals should listen to stories such as mine. Take note and keep your mind open.

 

[Daibell]

To me, one of the biggest dangers of statins is that GPs only know they may cause muscle/joint aches and pains. I reported a string of what I am now aware of as 'known' side-effects over a couple of years. Nobody took me seriously. No GP and no doctor at the hospital diabetic clinic I attend ever realised that acute loss of appetite, depression, memory problems and a resultant complete loss of confidence added up to statin intolerance. If you suffer any side-effects, they will not be recognised as such and you will be offered a string of other drugs to deal with the symptoms you report. It took me years of arguing before I got my hospital records marked 'Intolerant of Statins'. They destroyed my life, lost me my job - which I loved - and almost lost me my husband. He said they changed my personality and only admitted this when I stopped them. After about a fortnight he said the woman he married was back.

Please think seriously and if you take them, keep a log of any changes in your health/well-being that occur. Review it regularly and record which drug you take, at what strength. If you develop any new symptoms be suspicious.

My Wife's GP prescribed full dose statins to start with without checking her records which showed she had had Hep A. Within a day or so she had bad liver pain and had to stop the statins. These pills can be dangerous in the hands of ignorant GPs.

 

[Mike d]

And we keep tip toeing around this subject .... and I keep asking for a poll of members. Pointless exercise really

 

[Goonergal]

@Juicyj - have you run your numbers through Qrisk3, or any other lipid calculator? There is another xxellent one, but I don't have a link on my iPad, and can't for the life of me recall the name of it.

Is it this one @DCUKMod ? Tagging @Juicyj too:

https://cholesterolcode.com/report/

 

[Glucobabu]

My GP started me on statins last week I have a months-worth to see how I get on with them and so far, no problems, but in all honesty I don't know how I feel about taking them. The reasoning behind me starting them was because I have had diabetes for more than 10 years and apparently am nearing middle-age (I've just turned 32)

Nearing middle-age at 32? I thought I was just getting on a ‘bit’ at 66 with type1 for 44 years!

 

[DCUKMod]

Is it this one @DCUKMod ? Tagging @Juicyj too:

https://cholesterolcode.com/report/

Thank you Goonergal. That's the one.

 

[sleepster]

Nearing middle-age at 32? I thought I was just getting on a ‘bit’ at 66 with type1 for 44 years!

Apparently so

 

[CearaRed1073]

Nearing middle-age at 32? I thought I was just getting on a ‘bit’ at 66 with type1 for 44 years!

sleepster
Apparently so

yes, i was thinking something similar, as i'm 49 and was diagnosed in October 1978. but while the medical community in the US is recommending statins for us Type-1s, personally my endocrinologist never mentioned them to me, although it is in every after-visit report i received for the past two years. he also took me off ACE inhibitors more than two years ago, because my blood pressure was too low and he had no idea what my reading actually were.

in 2020, i have to go to a NEW endocrinologist, because new insurance and all the chaos that goes along with it (new pharmacy, new rules, and new headaches...i hate this silly country and its stupidity when it comes to ZERO national healthcare plan, save greed, graft, and not considering the needs of all people. but it is what we have, such as it is, stupid and useless though it may be.) so i may get the recommendation next month, and i will refuse it, as i already have enough aches and pains already and don't need any more.

 

[Damtov8]

I’ve received a letter and prescription for statins from my local GP stating that because I have diabetes the current recommendation is that I should start taking a statin - question is should I and what are people’s thoughts on this ?

This article really shocked me and it is just one more reason why I would not touch a statin with a bargepole:

https://www.bbc.com/future/article/20200108-the-medications-that-change-who-we-are

 

[Damtov8]

My GP started me on statins last week I have a months-worth to see how I get on with them and so far, no problems, but in all honesty I don't know how I feel about taking them. The reasoning behind me starting them was because I have had diabetes for more than 10 years and apparently am nearing middle-age (I've just turned 32)

https://www.bbc.com/future/article/20200108-the-medications-that-change-who-we-are

 

[Damtov8]

It seems to me that many doctors are not following the latest information on statins and in fact there seems to be a lot of information about people living longer with higher cholesterol levels. The most worrying piece of information that I have a read about statins is that they affect your personality.
Statins are also linked to higher blood sugar levels, possible dementia or Alzheimer’s and in some people muscle problems leading to disability.
Please do your own research but I will post this so that you can see it for yourself
The cholesterol hypothesis is dead!
https://www.pharmaceutical-journal....sistance/20203046.fullarticle?firstPass=false

 

[Juicyj]

This article really shocked me and it is just one more reason why I would not touch a statin with a bargepole:

https://www.bbc.com/future/article/20200108-the-medications-that-change-who-we-are

That's a pretty powerful read right there, the studies seem so to focus purely on the cholesterol lowering ability of the drug, not on the impact of the potential side effects which would have more of a life changing effect on the individual.