Type 1s - are you taking statins?

Type 1s - are you taking statins?

  • a) Yes, I’m Type 1 and take statins currently

    Votes: 16 41.0%

  • b) I’m Type 1, over 40 yrs old and No, I’ve never taken statins

    Votes: 13 33.3%

  • c) I’m Type 1, over 40, I’ve taken statins previously but stopped (please give reason if possible)

    Votes: 8 20.5%

  • d) Other - please explain

    Votes: 2 5.1%
  • Total voters
    39
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Oh and PS - I'm not at all certain whether they've since disproved the theory that certain ones do not cross the blood/brain barrier ....... used to rely on eg Malcolm Kenrick for such info but am right out of touch with such things.
 
Hi. I was diagnosed Feb 2022 (age 59) with Type 2 changed to type 1 LADA after antibody tests (strongly positive apparently). Prescribed statins straight away as family history of CVD and diagnosed with hyperfamilialcholesterolaemia. Chol was 9 on initial diagnosis, hbA1c 112. Slim active.
I take 20mg of Atorvastatin daily (so relatively low dose) and combined with dietary changes Chol dropped to 3.8 initially then settled at 4. I don’t like taking statins and my muscles can be quite achy.
Spoke to my GP about muscle pain and stopped the dreaded pills for 3 months but Chol increased to 5. Now back on them and will see what next test results are like. My BG levels are good and TIR over 90% although aware this can change quickly. HbA1c currently 42.
Having proved to myself that the statins are effective now see them as a necessary evil to hopefully decrease risk of CVD as am genetically predisposed towards that. ‍♀️
If this were not the case I’d be holding out too and wouldn’t be taking them.
 
I have taken them for 15 years and experienced no side effects, and I am b
very pleased with the reduction in my cholesterol.
 
Bloden said:
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!
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If you are in England, since 31/10, your GP is obliged to give you access to your records. Honestly, it cuts out the middle man for results etc.
 
AndBreathe said:
If you are in England, since 31/10, your GP is obliged to give you access to your records. Honestly, it cuts out the middle man for results etc.
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I live in Wales. :D
 
This is an interesting topic.
Even more so that it conducts a poll? (I did cast my vote.) 🙂

Limiting T1s to only respond regarding a universally prescribed & recommended drug to lower cholesterol has no bearing on the overall experience of those (anyone.) taking a certain type or brand of statin into account?
I really don’t see how diabetes comes into this. Apart from, “well you have hit a certain age & although your markers don’t suggest a potential issue. You happen to be diabetic.”
It seems to me “personal choice” (and precautionary.) under the circumstances judged on the markers that come back from the lab by the patient. Not “Ask the audience.”
 
As I have an adverse reaction to almost everything I've ever tried taking, I'm not trying statins! Thankfully no-one from NHS has tried to push them on me yet, apparently one diabetes nurse mentioned it as a vague possibility (when on the phone to R about me, as I can't use phone) and he said he thought it unlikely I'd be interested.
 
helli said:
People with diabetes are more likely to experience Cardio Vascular Disease. Therefore, more is available as a precaution and the cholesterol targets are lower.
That is what diabetes he as to do with taking statins - we are more likely to be prescribed them.
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So I have been “reliably” informed. I personally have no makers for this. The OP is clearly at a “crossroads.”
My advice on personal decision making that you have taken out of context with your quote on my last comment, is simply widen the scope?
 
I limited it to Type 1s @Satan’s little helper because I’m Type 1 and also because Type 1s are at a surprisingly increased risk for CV problems. This was discussed a while ago on the forum. Knowing that (shockingly) increased risk, do most Type 1s take statins? Do slim, healthy Type 1s with no other CV risks take statins? That’s what I’m interested in, not statin use in general. I want to know how other Type 1s balance and process the increased risk in their heads.

Try doing one of those heart health/heart age quizzes. First of all, do it and put all your info in but not the Type 1. You’ll see your risk is pretty much what you’d expect. Then do it again with the Type 1. The increased risk is shocking. So yes, you do have a marker - a damn big marker like all Type 1s. Dealing with that risk, both practically and emotionally is what I’m interested in. It’s my question and my poll. I wasn’t aware I had to run my polls past you for approval first.

Personal experience is what this forum is about. That doesn’t mean we all have no agency and copy what someone else does without any thought, but, in this matter. I’ve found every person’s response here very helpful and am grateful for those who are taking the time to answer and to post comments.
 
I was put on Atorvastatin within a year of T1 diagnosis in my mid 20's. Horrendous headache, muscle pains, and weakness within 24 hours. Tried again a week later with the same results so stopped taking them and reported back to the GP. Had several conversations with other medical professionals over the years along the lines of 'Your cholesterol isn't bad but could be improved. Let's put you on a statin', with the response 'read my notes'.
Total serum cho 5.2 mmol/l, HDL 1.81 at the last test, which is typical.
 
Inka said:
I limited it to Type 1s @Satan’s little helper ....

Try doing one of those heart health/heart age quizzes. First of all, do it and put all your info in but not the Type 1. You’ll see your risk is pretty much what you’d expect. Then do it again with the Type 1. The increased risk is shocking. So yes, you do have a marker - a damn big marker like all Type 1s. ....
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But, isn't this where "those heart/health quizes" can fall down - few, if any (certainly not the must usual in UK QRisk) make any reference to diabetes management, and smoker status is blanket, Yes, No, Less than 10 or Ex-smoker.

Surely, as is often argued here on various topics, personal management and wider lifestyles have a huge impact.

Apologies, I appreciate I am not T1, but couldn't resist on this point.

Link to Qrisk3: https://qrisk.org/
 
I asked my consultant at the diabetes clinic a few years ago (I declined statins at the time, as my cholesterol wasn’t raised) and he basically said then, we know it raises the risk for Type 1s, we don’t know why, we need to do more research. He also couldn’t answer whether they had any research on the risk in people with Type 1 who had good control.
I don’t know if any Type 1 specific research has since has been done.
 
I would like to point out that in addition to lowering cholesterol they have other properties worth bringing into the equation. One important property is that they reduce irritation often a precursor to plaque formation. Variable BGs, in particular, above target range, can cause irritation of the blood vessel walls. This is thought to be a factor in the highish rate of Type IIs with heart problems. They also stabilise any existing plaque. Not yet proven but reported is that they reduce gum disease. Things are not always as simple as they seem.

Type I on statins.
 
Robin said:
I asked my consultant at the diabetes clinic a few years ago (I declined statins at the time, as my cholesterol wasn’t raised) and he basically said then, we know it raises the risk for Type 1s, we don’t know why, we need to do more research. He also couldn’t answer whether they had any research on the risk in people with Type 1 who had good control.
I don’t know if any Type 1 specific research has since has been done.
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I did a lot of research on statins after experiencing similar "brain fog" to @trophywench - not long after it happened to her - we knew each other elsewhere back then. So I took myself off them at the time. As I understand it cholesterol is the building block of every cell in your body, most especially brain cells. So, in fact, cholesterol can be TOO low! I know they want T1Ds to be at a level of 3. I personally think that is too low. After all, cholesterol is a natural substance in the body, not a poison.

Also, as @MikeyBikey says, heart disease is caused by inflammation of the arteries rather than cholesterol which is just doing it's job covering the inflammation over. T1Ds - or in fact any diabetic person - has scratchy glucose molecules sticking to their blood cells that can cause inflammation of the artery walls. That's what the Hba1c measures - the number of glucose molecules sticking to the cells. So the higher your Hba1c the more risk you are at.

In addition, several studies have shown that post-menopausal women have less all-cause mortality than those with a slightly higher cholesterol level. My own is 5.8 and I am very happy with that as I have low LDL, high HDL and very low trigs with a ratio of less than 3 to HDL.

There's a lot to it, more than just cholesterol. If anyone wants further information I suggest you try googling Dr Malcolm Kendrick, Zoe Harcombe and Uffe Ravenskoff (this link is a good start )

I hasten to point out that I'm not trying to suggest anyone on statins comes off them. I'm merely trying to say it's good to become informed and make your own decisions accordingly - so please don't shoot me!
 
Inka said:
I limited it to Type 1s @Satan’s little helper because I’m Type 1 and also because Type 1s are at a surprisingly increased risk for CV problems. This was discussed a while ago on the forum. Knowing that (shockingly) increased risk, do most Type 1s take statins? Do slim, healthy Type 1s with no other CV risks take statins? That’s what I’m interested in, not statin use in general. I want to know how other Type 1s balance and process the increased risk in their heads.

Try doing one of those heart health/heart age quizzes. First of all, do it and put all your info in but not the Type 1. You’ll see your risk is pretty much what you’d expect. Then do it again with the Type 1. The increased risk is shocking. So yes, you do have a marker - a damn big marker like all Type 1s. Dealing with that risk, both practically and emotionally is what I’m interested in. It’s my question and my poll. I wasn’t aware I had to run my polls past you for approval first.

Personal experience is what this forum is about. That doesn’t mean we all have no agency and copy what someone else does without any thought, but, in this matter. I’ve found every person’s response here very helpful and am grateful for those who are taking the time to answer and to post comments.
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Hello, practically? I don’t do the quizzes because emotionally, they are set out to undermine just that with the vulnerable. I view them like online “influencers.” But grifting with an algorithm.
I look at what comes back from the lab with my blood works & focus like yourself on my personal managment on a daily basis. I may have been a little unclear on my initial point. Which was offering support on a topic which is seemingly causing you anxiety. My intention was never to further this.

Topics like this and the valued input from other members to my mind is like “talking to FRANK.” (that wasn’t a shouty. The link to clarify is here. https://www.talktofrank.com/ )
Based on the negative (in one case harrowing.) accounts posted regarding the side effects with statins. (Of which there are 5 different types prescribed in the UK.)
It’s tricky enough making sure my basal is correct to handle a busy day at work without incident?
I’m on prescribed insulin like yourself that have the potential to affect cognitive.

I’ve never been one to bow to peer pressure just for the sake of “fitting in.”

Statins.
Currently. I “just say no.”
 
Historically always had good cholesterol levels, but have always been aware of link between diabetes & heightened cvd, probably something I've paid more attention in recent years as time moves ever forward.

Couple of years back diabetes consultant brought up issue of cvd & decided that low dose statin would have protective effect, started on them & suffered no side effects whatsoever, didn't think I would as few people do given how wide spread they are used, it was suggested to take them in evening but happened to miss couple of doses & never took them again, gp was fine with this given my cholesterol levels & fact that I exercise daily, so we agreed that taking a statin again could be something to discuss at a later date.

Certainly don't have any concerns about statins as they are one of the most researched drugs around & considered safe & very effective at reducing cardiovascular events.

Great topic @Inka , really pleased that you started it with views from members with type 1.
 
I’m undecided not anxious @Satan’s little helper While I was pondering whether to now take statins, having refused them previously, I wondered how many Type 1s actually took them. Hence the poll and the request for comments. My decisions are always my own (my consultant will very much verify that :rofl: ) but in making those decisions, I’m always interested in the thoughts of others in the same situation. I’ve also found it interesting seeing the figures in the poll, although it is, of course, a limited sample.

Perhaps “quiz” was the wrong word, but there are assessments online that you can do, putting in things like your age, weight, cholesterol figures, etc, etc, and you get a ‘heart age’ back. My ‘heart age’ was great - pleasingly years under my chronological age - but ticking Type 1 made a huge difference. I think @everydayupsanddowns linked to or referred to a study about Type 1 and heart health a while back. It seems they’re not totally sure what causes the increased risk, but it’s a definite thing. Inflammation? HbA1C? Kidneys? Hypos? Hypers? Swinging sugars? The immune system? One or maybe more of those things or others - they don’t yet know.
 
Non-diabetic hubby had terrible muscular side effects from Simvastatin. Spent a fortune on acupuncture and physio beforehe stopped taking them and the side effects stopped. However he has high familial cholesterol and is now reluctantly on Atorvastatin and that doesn't seem to have the same nasty affects.
 
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