Type 1s - are you taking statins?

[Inka]

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 🙂

 

[Robin]

I started taking a low dose about a year ago. I’d previously resisted, but although my ratios were good, the total figure was creeping up. I’d decided arbitrarily that I'd start them if my total was consistently over 6, which it is now, I guess it rises with age (I'm 67), and I've got to that point.

 

[helli]

I was offered statins some years ago (probably when I passed the 40 year age threshold) but told it was optional and based on research done with people who do no exercise and are overweight which had shown a reduction in CVD with diabetes. At the time, there was no research done in the advantages of exercise and diet over statins. I declined as I exercise regularly and am not overweight.

Fast forward a little over 10 years and I was offered them again.
This time the reason given was that yoyoing blood sugars experienced by people with diabetes put a strain on the heart.
I do not know whether this is based on a different study and, with CGMs whether research has been done on the value of spending more TIR. But, on the basis of limiting my yo-yoing with my CGM, I declined again.

I am now in my mid 50s, had Type 1 for 20 years and, at my last review, everything (HbA1C, kidney function, liver function, cholesterol, white blood cell count, blood pressure, bmi…) are all within the “healthy“ range.

 

[rayray119]

I'm not over 40. I'm 31 going to be 32 in January. But I think if I was offered them when I got to that age or even now i would accept

 

[everydayupsanddowns]

I was a little hesitant too (like @Robin).

But I kept an eye on my QRISK score, and as I got past 50 and it was rising I decided to give them a go.

No downsides for me, and much improved lipid components (at least when they used to suggest guideline values for the various bits).

I believe current thinking is that both potential risk and potential risk reduction are cumulative, so the earlier the better seems to be the approach these days.

 

[Inka]

Thank you to everyone who has replied so far 🙂 I haven’t had my QRisk done for a while - possibly it was pre-Covid. It was low then but, as you say Mike, increasing age is a concern. I can’t quite explain why I’m hesitant. I think it’s mainly the reported liver and muscle problems. Those sound potentially worrying and they do put me off. I’m not a fan of any medication (apart from my life-preserving insulin!) and I umm’ed and ah’ed about HRT for a while before taking it. It’s not that I particularly care how many things I’m taking (I know some people see it as a weakness to take meds), it’s that I’m not convinced the pros outweighs the cons.

I do feel I’m edging towards them because I’m starting to feel it would be remiss not to, but my last LDL result was very good so……I still can’t decide : / Perhaps the QRisk is the best indicator?

I’m due blood tests soon - well, when I can get an appointment! - so perhaps looking at my cholesterol results then and asking about my QRisk might help me decide. I’m a bit like you @helli in that I’m pretty active, slim and all my results are ok (apart from the cholesterol, which was just over 5, but the doctor marked it as ok because my higher HDL pushed the total up).

I really appreciate all the comments because they help me untangle my thoughts a bit, and I find hearing all your experiences and decision processes really useful 🙂

 

[rebrascora]

I have just declined them again.
My QRisk score is actually over13% because I am getting older and female and diabetic and my TC is over 4 which they like us PWDs to be under. My result was 4.5 as of last week's test. My TC was 5.2 at diagnosis nearly 5 years ago so it has come down since I started low carbing and eating more fat. I will be 60 in Feb.
My personal thoughts are that I manage my BG well with over 90% TIR, I don't have big swings in levels, I keep myself fit, I have never smoked and no longer drink and my cholesterol levels are stable at what I consider a healthy level and would be fine if I didn't have diabetes. I personally feel that I am healthier since my diabetes diagnosis and my cholesterol has been stable and consistently lower than it was at diagnosis, so I am not convinced that I personally need them and I don't want to put any chemicals into my body that I don't need. I believe they can have an impact on your gut biome and I don't want to risk that. I personally think my cholesterol levels are healthy and that cholesterol is not intrinsically bad even the LDL. It is all about balance. If my levels suddenly rose and got to 6 or 7 then, like @Robin, I would reassess my situation and might accept statins, but at the moment things are stable in the 4s and have been for nearly 5 years, so I see no reason to change my stance and start taking them at this time.

 

[Flower]

I started taking statins about 20 years back but had to stop soon after as they affected my muscle control badly. My arm & leg muscles went so weak & out of control. I haven’t had a drug affect me like that before so I was told not to take them. I’ve taken Ezetimibe ever since as an alternative. My cholesterol has stayed relatively stable over the years, it wasn’t high when I was advised to start them.

 

[Inka]

I didn’t know they could affect the gut biome @rebrascora Hmmm. Thank you @Flower I just googled Ezetimibe. Sorry to hear you had such bad muscle problems with the statins. That sounds quite extreme.

 

[Bloden]

I’ve tried all 4 available statins but have had 4 sets of unpleasant side effects. Thankfully, not everyone gets them. I’m waiting to be prescribed something else (consultant mentioned fibrates) at my next diabetic review.

 

[rebrascora]

I’ve tried all 4 available statins but have had 4 sets of unpleasant side effects. Thankfully, not everyone gets them. I’m waiting to be prescribed something else (consultant mentioned fibrates) at my next diabetic review.

Do you mind me asking what your total cholesterol level is?

 

[Bloden]

Do you mind me asking what your total cholesterol level is?

I haven’t seen my latest test results, but I think my GP said 5.2 over the phone the other day. I’ve been so busy lately - thanks for reminding me to go down the surgery for a printout!

 

[bujanin]

After years of being told that I should be taking them I started taking atorvostatin two years ago. Statins seem to have been around for so long now, so well studied and if one causes problems like muscle soreness which seems common, there're others that might suit the individual better.

 

[mitchsi]

Diagnosed type 1 after dka and soon after my cholesterol was 6.1, some of it I was told due to on going dka for sometime so don’t know how much it would have been without it. Offered statins but at 46 and fairly active declined to try and reduce with good diet and exercise. Hopefully I can ask for a retest next month after 4 months since diagnosis. I’m hoping it’ll be in a decent range negating the need for statins

 

[JJay]

I’ve been taking them for about 20 years - Simvastatin first (didn’t get on well with it), Rosuvastatin (stopped on grounds of cost when I changed GP due to house move), and now Atorvastatin.

I get no ill effects from them and as I have a family history of heart disease and have persistent AF myself (in remission for 3 years following a cardioversion) I’m happy to take anything that might help provided it does no harm.

 

[trophywench]

My D consultant thought I should be on a protective dose of a statin and explained why even though no probs with my cholesterol level at the time which sounded OK to me so I happily agreed so he asked my GP to start me on one. 10mg (or mcg, can't remember) ie the lowest dose of Atorvastatin and I seemed to do OK generally with them. Then Atorvastatin became too expensive for the NHS for people like me so the 10 of Atorvastatin was changed to 20 (again the lowest dose) of Simvastatin which was cheaper. By this time I'd already been struggling a bit at work with coping with the amount of it and having moved from working in Brum to work in Coventry I no longer had my familiar people I'd known years to help me do my job - and then by this time I really started to struggle with my memory so forgetting whole days of meetings and having to at least double check every single move I made in the office and thus falling further and further behind. Not long before we'd been to Australia on holiday for my niece's wedding and stayed with my sis and bro-in-law. I was chatting to her one evening and mid sentence I suddenly forgot her name as I was literally about to say 'Well (name) what I think is blah blah ....'. Come on, for God's sake, I'd only ever had ONE sister and being as she was 4 years older than me, by then I'd had her over 50 years and her name had always only ever been Gillian. I did a lot of crosswords and would be asking my husband eg River in London, 6 letters, 2nd is H, 4th is M, 5th E - what is it? I know that sounds utterly ridiculous but it is the truth. The only medication I took apart from insulin was a low dose of a BP tablet and ditto the statin. I thought sod it I'm taking this into my own hands and I'll pack in taking one of the tablets this very night - if that doesn't make anything better I'll start taking it again and try packing the other one in.

Stood there with both packets of pills in front of me and I've got to be honest I did think it was unlikely to be the BP tablets, so I didn't take the Simvastatin and by the end of a fortnight I thought I was discerning a change for the better - which continued. I yellow carded the ruddy things. Of course I told my GP but he never believed me. It's still not on my notes to this day - but if you ever hear of me taking them you'll know I've lost my mind anyway.

 

[Inka]

@trophywench Out of interest, would you go back on the Atorvastatin if that was an option for you, or has your experience with Simvastatin put you off statins for good now?

 

[trophywench]

No way would I voluntarily take a statin IF I CAN HELP IT. I did agree at one time to try one of the ones found to be more brain protective, which Pravastatin and Rosuvastatin at that time both were. However when push came to shove - I landed up in tears with the packet of Prava~ in front of me and I chickened out. I did report this to both my GP and the D consultant at that time. As I said - no doctor ever really believed me what caused my brain fade and led to me having to stop working before my normal state retirement age and put my complete mental breakdown entirely to stress. Repeated panic attacks multiple times daily whilst at work with my BG utterly out of control - starting from a decentish say 7-ish when I got up in the morning up to mid 20s by lunchtime and staying that high if not higher all afternoon and only getting back to under 10 by bedtime - no CGM possible back then and only annual hospital visits, when/if they actually happened .....

Would YOU find this with BG stressful? - if not, how the hell, not?

Meanwhile of course my unhelpful employer had decided to ban me having any insulin jabs at my desk because a filing clerk we happened to have didn't like seeing me do it so I said OK I'll go in the kitchen then - oh no, can't do that. Fine I'll use the meeting room - No. Why can't you go in the toilet and do it? (We all know blooming well why not - on here, so I had to explain that, myself.) They had to have a sodding Board meeting to decide I could use 'the archive room' - so I just enquired of the office cleaner one day how often that room for cleaned? - Never! was the answer!

Then they offered me a termination agreement and payout but were insistent I must take independent legal advice before signing it and accepting, which I did because we knew an employment law solicitor and she tried to talk to them with some queries at which point they refused to change the wording and sent someone to ask me why on earth I just wanted to delay things?

So I rang solicitor (in tears) and said for God's sake - tell the barstewards I agree and let me get out!

It WAS B ridiculous and Oh yes, I should definitely have taken them to a tribunal - but by that time in a worse mental state - no way could I face doing that.

There were other things too.

I right this minute have a very nasty more than suspicion the NHS are ganging up to have another go at me to start taking the damn things again because I literally last week had an armful of blood taken for D clinic tomorrow afternoon which included Chol PLUS yesterday afternoon took a phone call from the GP surgery - out of the blue - to inform me they wanted a chol blood test - to which I replied Kindly ask whoever asked you to do this to sign in to the hospital system and look at the test results I literally had the test for last week and see if they truly need yet another one!

Yrs, sick to the back teeth of the NHS not being one system, Bedworth.

 

[Inka]

That sounds a horrible experience @trophywench I’m really sorry you had to go through that. Stress, including work stress, is the absolute pits, and can be totally overwhelming because you feel like you can’t escape. Having to deal with that in addition to the ever-present pain in the arse that is Type 1 must have been awful.

 

[trophywench]

Thanks mate! - it was. Husband worked it out recently about how much ££££ we, as a couple had lost because of it - let alone anything else and that in itself was scary - more than 5 figures.