Looking for some perspective on statins...

[Daemonik]

Hi there,
Long time (30 years) as a T1. First time poster, looking for some perspectives, experiences and advice about statins.
I'm 50, with a pretty healthy lifestyle and good control. I just had my annual cholesterol results back, and the GP wants me to go on statins. I'm hesitant, because of the plethora of side-effects and acclimatisation that comes with starting that.
My results were all within NHS recommended ranges for a non-diabetic, slightly above recommended for a diabetic on Serum Cholesterol Level (4.5 against nominal <5 and diabetic <4) and Serum LDL Cholesterol Level (2.6 against nominal < 3 and diabetic <2). All the others (Triglyceride, HDL, Ratio, non-HD lipids were well within diabetic recommendations).
The GP has been trying to get me on statins for the last 10 years, and this is the first time any of my results have been out of diabetic recommended "zones", so I'm wondering whether I should give up and stop being stubborn. I've just seen people really struggle with fatigue, maintaining glucose levels, concentration, muscle aches and so forth soon after starting statins, so I'm reluctant and nervous about taking that step, wondering whether the potential downsides are worth the benefit.
Any and all advice would be much appreciated.

 

[Woodywoodpecker]

Hi there,
Long time (30 years) as a T1. First time poster, looking for some perspectives, experiences and advice about statins.
I'm 50, with a pretty healthy lifestyle and good control. I just had my annual cholesterol results back, and the GP wants me to go on statins. I'm hesitant, because of the plethora of side-effects and acclimatisation that comes with starting that.
My results were all within NHS recommended ranges for a non-diabetic, slightly above recommended for a diabetic on Serum Cholesterol Level (4.5 against nominal <5 and diabetic <4) and Serum LDL Cholesterol Level (2.6 against nominal < 3 and diabetic <2). All the others (Triglyceride, HDL, Ratio, non-HD lipids were well within diabetic recommendations).
The GP has been trying to get me on statins for the last 10 years, and this is the first time any of my results have been out of diabetic recommended "zones", so I'm wondering whether I should give up and stop being stubborn. I've just seen people really struggle with fatigue, maintaining glucose levels, concentration, muscle aches and so forth soon after starting statins, so I'm reluctant and nervous about taking that step, wondering whether the potential downsides are worth the benefit.
Any and all advice would be much appreciated.

I’ve been on simvistatin for 12 years after having a stroke age 46, only diagnosed type 1 a year ago. Not had any problems with them

 

[Deb_l]

I was stubborn for a long while (2 years or so), mainly because I couldn't face the thought of taking yet another tablet but then, funnily enough, my menopause doctor put things into perspective for me and said:

"Look at it this way, your life wasn't worth living before you started taking a migraine preventative medication. I'm now going to offer you HRT, which will make your life much better than it is currently with the menopause symptoms. What statins will do is not immediately obvious but it will go a long way to prevent major issues developing which will seriously impact your quality of life - why are they any different to the other two medications"

She had a valid point, that I couldn't really argue with, especially with my family history of heart disease and stroke. She also pointed out that (as we age) our cholesterol levels naturally elevate despite best endevours with diet and exercise.

I started on a very low dose (10 mg) and have had no side effects whatsoever

Your choice but you have to way up the pros and cons.

 

[louisew]

I’m on a low dose of statins as I was just only just below the recommended level. I have had absolutely no problems atall with them. My mum however could take them due to side effects. She takes coq10 and benecol. she does have polymyalgia which is an autoimmune condition that causes problems with her joints, and I think it made that worse. We have familial high cholestrol and she has a very healthy diet anyway

 

[Sharron1]

Hi there,
Long time (30 years) as a T1. First time poster, looking for some perspectives, experiences and advice about statins.
I'm 50, with a pretty healthy lifestyle and good control. I just had my annual cholesterol results back, and the GP wants me to go on statins. I'm hesitant, because of the plethora of side-effects and acclimatisation that comes with starting that.
My results were all within NHS recommended ranges for a non-diabetic, slightly above recommended for a diabetic on Serum Cholesterol Level (4.5 against nominal <5 and diabetic <4) and Serum LDL Cholesterol Level (2.6 against nominal < 3 and diabetic <2). All the others (Triglyceride, HDL, Ratio, non-HD lipids were well within diabetic recommendations).
The GP has been trying to get me on statins for the last 10 years, and this is the first time any of my results have been out of diabetic recommended "zones", so I'm wondering whether I should give up and stop being stubborn. I've just seen people really struggle with fatigue, maintaining glucose levels, concentration, muscle aches and so forth soon after starting statins, so I'm reluctant and nervous about taking that step, wondering whether the potential downsides are worth the benefit.
Any and all advice would be much appreciated.

You could give them a go and see how both you and your numbers get on with them. It is probably the only way to find out.

 

[rosalindb]

I started on Atorvastatin in December 2024, no problems at all. Cholesterol down, i take to offset the his to strokes and heart attacks.

 

[Daemonik]

I was stubborn for a long while (2 years or so), mainly because I couldn't face the thought of taking yet another tablet but then, funnily enough, my menopause doctor put things into perspective for me and said:

"Look at it this way, your life wasn't worth living before you started taking a migraine preventative medication. I'm now going to offer you HRT, which will make your life much better than it is currently with the menopause symptoms. What statins will do is not immediately obvious but it will go a long way to prevent major issues developing which will seriously impact your quality of life - why are they any different to the other two medications"

She had a valid point, that I couldn't really argue with, especially with my family history of heart disease and stroke. She also pointed out that (as we age) our cholesterol levels naturally elevate despite best endevours with diet and exercise.

I started on a very low dose (10 mg) and have had no side effects whatsoever

Your choice but you have to way up the pros and cons.

Thanks for the detailed reply 🙂
There's definitely a large element of "I don't wanna take anything I don't absolutely have to". I'm one of those who won't even use paracetamol unless I'm running a 40+ degree fever. I haven't had any conversation like that with the GP - it was very much "Your cholesterol is higher than we'd like so here's a prescription" which I didn't take, saying I wasn't sure and would get back to them. The response to that was a shrug

 

[Daemonik]

You could give them a go and see how both you and your numbers get on with them. It is probably the only way to find out.

Yeah, I think I'll probably end up doing that. It's just I know a few people who struggled for a few years after starting them, where they have to put up with side effects like fatigue / muscle aches / raised glucose levels for 6 months, then swap to a different type, then put up with nausea and headaches for 6 months, then swap to another... I just don't want to be losing quality of life to the degree I saw them lose it until I absolutely have to! I guess maybe seeing these bad reactions and problems has just scared me off it really badly.

 

[rosalindb]

Yeah, I think I'll probably end up doing that. It's just I know a few people who struggled for a few years after starting them, where they have to put up with side effects like fatigue / muscle aches / raised glucose levels for 6 months, then swap to a different type, then put up with nausea and headaches for 6 months, then swap to another... I just don't want to be losing quality of life to the degree I saw them lose it until I absolutely have to! I guess maybe seeing these bad reactions and problems has just scared me off it really badly.

The thing to remember is that was other folks experiences not yours. As was suggested by Sharron1, give them a go, you could be one of those who get on fine with them.

 

[helli]

Like you, I resisted for many years as I am much fitter than others my age, I exercise regularly (and feel antsy if I don'), eat little processed food with lots of fruit and veg and, until very recently, my cholesterol readings were all under the diabetic range. One consultant explained to me that the recommendation was based on the advantage of everyone with diabetes regardless of weight, exercise, etc.
However, recently, two things happened
- my cholesterol increased to just over the diabetes threshold (but lower than the non-diabetic threshold)
- a different consultant explained the BG of those with diabetes fluctuates far more than someone without diabetes and this puts extra stress on our heart.

Therefore, I decided to try statins to see if I experienced any of the potential side effects - my doctor agreed to a 3 month review.
Six months later, on the lowest dose (10mg/day) of atorvastatin, my cholesterol is back under threshold and I have no side effects.

 

[Daemonik]

Like you, I resisted for many years as I am much fitter than others my age, I exercise regularly (and feel antsy if I don'), eat little processed food with lots of fruit and veg and, until very recently, my cholesterol readings were all under the diabetic range. One consultant explained to me that the recommendation was based on the advantage of everyone with diabetes regardless of weight, exercise, etc.
However, recently, two things happened
- my cholesterol increased to just over the diabetes threshold (but lower than the non-diabetic threshold)
- a different consultant explained the BG of those with diabetes fluctuates far more than someone without diabetes and this puts extra stress on our heart.

Therefore, I decided to try statins to see if I experienced any of the potential side effects - my doctor agreed to a 3 month review.
Six months later, on the lowest dose (10mg/day) of atorvastatin, my cholesterol is back under threshold and I have no side effects.

Thank you. You were exactly where I am now - but with a consultant who explained things more than I've had. It's literally been "Yeah your cholesterol is too high, we want you to take these pills" from my GP surgery, without any further context. Figuring out which readings are out of range and by how much, pros, cons, etc has been me & Google + remembered conversations with others - hardly the scientific method I prefer!

 

[Tdm]

No probs with statins here either

 

[Inka]

Welcome @Daemonik 🙂 I started a thread asking about statins for Type 1s and I found the replies very helpful in making my decision about whether to take them. Although we hear about the notorious side effects, we don’t hear enough about the many, many people who have no side effects. I decided to start statins this year - and have had no side effects. They reduced my cholesterol and my LDL, and I’m also pleased they’re helping to stabilise any arterial plaque I have.

Here’s my thread:

Thread 'Type 1s - are you taking statins?'

Nov 6, 2023

I asked a question about the pros and cons of statins on the Statins thread, but I’m wondering if I’m unusual in not taking statins as a Type 1, so this poll is for Type 1s and asks about statins. Any comments or information welcome.

TIA

P.S - I’m only asking Type 1s as I’m Type 1 myself and so want to compare what other Type 1s do. Thanks 🙂

• Inka
• Replies: 55
• Forum: General Message Board

• 

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[John Gray]

I was on the original Simvastatin / Vitamins / Placebo blind "Heart Protection Study" trial ever so many decades ago, and have been taking Simvastatin then Atorvastatin since then, with good effects on my cholesterol figures.
I may have had some side effects, but when you are on as many medications as I am, another side-effect is almost irrelevant!

 

[MikeyBikey]

Hi! I have been Type I for twice as long as you
About thirty years ago my consultant started pushing statins so hard I swapped clinics to one about ,30 in the neighbouring Trust My GP and clinic started pushing statins ten years later. I resisted till 2010 when I had started to have cramp after walking fairly short distances.The referral to vascular services was rejected as all referrals needed to be on statins for three months, I was started on Simvastatin but got aches in the shoulder muscles. These went when I swapped to Atorvastatin that I have been on since. I have none of the other side effects mentioned. I believe part of the problem is people who get side effects post on the internet whilst who have none just carry on taking them. About six years someone claimed the neighbours of a friend knew someone who grew a second head after taking statins!

 

[rebrascora]

I am in a similar position to you. My cholesterol levels are above what they prefer for people with diabetes but below prescribing level for non-diabetics. I am 61 and reasonably fit and I put a lot of effort into managing my diabetes as of course many others here do too. If my levels started to climb higher then I would be prepared to reconsider but currently do not feel my levels warrant medication despite what the QRisk3 says and therefore I am still refusing. Not because I fear side effects, but I just don't want to take more medication and don't feel there is much difference between 4.5 and 3.8 or whatever it would drop me to or believe that 3.8 is necessarily healthier. I think there is a place/need for cholesterol within the body and lower may not be best. If my levels had crept up to 6 I would reconsider but for now I still stand by my decision to decline.

 

[Daemonik]

Hi! I have been Type I for twice as long as you
About thirty years ago my consultant started pushing statins so hard I swapped clinics to one about ,30 in the neighbouring Trust My GP and clinic started pushing statins ten years later. I resisted till 2010 when I had started to have cramp after walking fairly short distances.The referral to vascular services was rejected as all referrals needed to be on statins for three months, I was started on Simvastatin but got aches in the shoulder muscles. These went when I swapped to Atorvastatin that I have been on since. I have none of the other side effects mentioned. I believe part of the problem is people who get side effects post on the internet whilst who have none just carry on taking them. About six years someone claimed the neighbours of a friend knew someone who grew a second head after taking statins!

Thanks 🙂 I know what you mean about complaints getting 10x the visibility of compliments effect, something which applies across the board. I've mainly been ignoring interwebz horror stories, and relying on conversations with people over the years who've gone on them, though I know the same principle applies, people who go on them and have no issue just don't mention it.

 

[Daemonik]

I was on the original Simvastatin / Vitamins / Placebo blind "Heart Protection Study" trial ever so many decades ago, and have been taking Simvastatin then Atorvastatin since then, with good effects on my cholesterol figures.
I may have had some side effects, but when you are on as many medications as I am, another side-effect is almost irrelevant!

I don't take anything aside from my insulin - drives my wife nuts that I won't even take paracetamol for a headache
So side-effects are quite a concern, especially anything which limits my activity levels, as I'm a pretty outdoorsy, active kinda guy. And the dog would go berserk without at least 2 hours a day out!

 

[SimonP]

I'd suggest you go and read the references used by the NICE guidance, and decide whether you think the diabetic cohort included in the data are representative of you (and therefore whether a separate threshold is justified), then look at the CVD event rates with and without statins for those who don't have what would be considered high cholesterol.

There are also questions around whether cholesterol is in fact the issue at all, the jury is still out imo, especially when you look at the CVD rates for those taking statins.

I have similar numbers and am also stubborn fwiw.

 

[MarcR]

Hi there,
Long time (30 years) as a T1. First time poster, looking for some perspectives, experiences and advice about statins.
I'm 50, with a pretty healthy lifestyle and good control. I just had my annual cholesterol results back, and the GP wants me to go on statins. I'm hesitant, because of the plethora of side-effects and acclimatisation that comes with starting that.
My results were all within NHS recommended ranges for a non-diabetic, slightly above recommended for a diabetic on Serum Cholesterol Level (4.5 against nominal <5 and diabetic <4) and Serum LDL Cholesterol Level (2.6 against nominal < 3 and diabetic <2). All the others (Triglyceride, HDL, Ratio, non-HD lipids were well within diabetic recommendations).
The GP has been trying to get me on statins for the last 10 years, and this is the first time any of my results have been out of diabetic recommended "zones", so I'm wondering whether I should give up and stop being stubborn. I've just seen people really struggle with fatigue, maintaining glucose levels, concentration, muscle aches and so forth soon after starting statins, so I'm reluctant and nervous about taking that step, wondering whether the potential downsides are worth the benefit.
Any and all advice would be much appreciated.

NICE guidelines seem to be to offer statins to people with type 1 over the age of 40.

The qrisk3 calculator uses Cholesterol/HDL ratio, it doesn't even ask for total cholesterol level, which agrees with what some experts say that the ratio is more important than the total amount. There is also the Triglyceride to HDL ratio. These ratios seem a better predictor of risk of heart disease than the total levels. The fact that the qrisk3 calculator doesn't even ask for the total level is significant.

I would recommend calculating these two ratios and also calculating your qrisk score.
Total:HDL ratio: 3.5 optimal, <5 desirable, >5 elevated risk
Trygliceride:HDL ratio: 2 optimal, >3 elevated risk, >4 high risk, >6 very high risk