It didn't help that we started with the 'Statins' conversation I've been expecting for several years but have, so far, been spared. It seems I've tipped over the edge of the 'how old' question even for your fairly relaxed attitude. I'm sorry that I find the whole statins/cholesterol thing such a tangled mess of claim and counter claim. I'm sorry that the research into their effectiveness (or otherwise) generally - and also in relation to type 1 is so clouded, murky and beshadowed by claims of vested interest and bias. I'm sorry that I ever read any of that stuff and couldn't just say, "Yes OK". To be honest I'm still not sure that the whole lipid/heart hypothesis isn't fundementally wrong anyway and that I have begun to suspect that the relative benefits shown in Statin studies over all those years may simply be "accurate measures for the prevailing bias". I'm sorry there is no way to accurately work out whether they would be worthwhile for me as an individual. I'm sorry I didn't, couldn't just take your word for it.
Thank you for agreeing to differ with me. And YES. I genuinely did mean that I would continue to think about this as I grow older.
I'm sorry I don't know what you mean by 'a hypo'. What number or frame of reference you wanted me to use. I'm sorry that by now (while you were still impeccably professional and cheery) you were probably wishing I would just shut up and go away.
I'm glad that you were pleased with the reductions I had seen in hypoglycaemia, particularly overnight with the combination of MM640G and CGM.
I'm sorry that it's not an option that is available to me.
I'm sorry that the CCG has approved no CGM applications on compassionate grounds in the last 2 years.
I feel sure that you would like to help more people with technology like this. I'm sorry that you are not able to.
Next year I will try to just come in, fill in my boxes on the forms, answer your questions, and then go away again.
I'm so sorry Mike.
ReplyDeleteThere's a more individualised diabetes risk calculator, albeit based on Type 2 patients, that takes into account the HbA1c, duration of diabetes, total and HDL cholesterol at:
https://www.dtu.ox.ac.uk/riskengine/
And I remember the notes that you wrote about Prof Miles Fisher's talk on this.
I've moved to a more plant based diet since being diagnosed and have a low LDL and high HDL without going onto statins. There are some great resources on this at:
http://www.pcrm.org/health
If you can achieve the lipid targets with diet and exercise, so much the better.
As for the clinic appointment, please don't forget that you are way ahead of the average patient, and almost certainly more savvy about the use of CGMs and the value of the hypo suspend function on the pump than the clinician that you saw - especially if your CCG hasn't funded any CGMs ... How are they going to get the experience?
It seems a bit of a Catch 22 situation.
In the meantime, you're doing brilliantly. If you need an alarm based CGM, especially to pick up nocturnal hypos, the new Dexcoms are brilliant - they've just launched the G5 which will be able to bypass the receiver and use a smartphone instead - the data is uploaded to the cloud for analysis, and so that loved ones can access it in real time. The sensors are only guaranteed for a week, but usually work well for two to three.
So sorry again,
Best wishes,
Ian
Thanks Ian. The whole Statin thing is just a ball of confusion to me. I have tried to get my head around it many times, but for every pro-statin thing I read there is another compelling article/viewpoint/paper I read next that suggests statins are not only not as effective as claimed, but possibly positively harmful. I did have a look at that T2 calculator out of interest (it didn't work for my OS) but I know from the GDG discussions that T2 data do not apply to T1 and that risk calculators generally cannot be used. There are three pieces of information that currently seem to steer my judgement:
ReplyDelete1) The Cochrane Collaboration re-analysis of statin data for primary prevention (does it help if you have not already had a heart attack) went from 'no benefit' to 'benefit' on the basis of an extra trial and "no evidence of any serious harm caused by statin prescription". From those data treat 1000 'low risk' people for 5 years and you save 11 major vascular events (no benefit for 99% of those taking them). Of course because I have T1D I am automatically at higher risk of CVD, but...
2) All the data about increased risk and/or relative reductions in risk versus various lipid levels in T1D will more than likely be based on an average person with, quite probably an A1c of around 8-9%. I find it very hard to unpick what that actually means for me.
3) I am rather unnerved by the assertion (which I have heard more than once) that there is 'no lower limit' to beneficial reduction in LDL cholesterol. This just seems entirely counter-intuitive to me, given that it is something the body makes and that cholesterol (including LDL) is so fundamentally important to so many processes - brain function/cell repair blah blah blah...
But I AM getting older, and I AM at increased risk... (let's leave aside for the moment the data showing that higher total cholesterol in older people associates with lower heart disease). It's a conundrum, that's for sure.
As for the CGM/sensor augmented pump thing - they were very supportive of the effect that it had (and they have put people on CGM previously and have several self-funders on their books). But also very clear that the harsh reality of the NHS is that CGM (certainly in my CCG) is not an option - however clearly the need can be demonstrated.
The CCG have not yet considered the newest guidance or made a decision on policy so perhaps things will change. But I'm not holding my breath.
I suspect I will probably opt for the MM640G when my pump comes up for renewal and see if I can manage to afford any sensor coverage over its lifetime (I never managed to with the Veo).
Thanks again
M
I agree completely Mike.
DeleteThere's a lot of debate in the medical press about primary prevention and statins at the moment for the general population.
It's a very individual and personal decision to be made in conjunction with your doctor, and as you say, the evidence isn't always that clear cut.
The available risk calculators that include Type 1 DM don't take into account the degree of diabetic control (HbA1c), years since diagnosis, or the degree of physical fitness and diet.
http://www.qrisk.org/index.php
Intuitively if you have excellent BG control with a normal BMI, exercise, and eat a good diet with good HDL/LDL ratios, then the risk/benefit of statins may well be marginal.
This publication is interesting:
http://www.jfponline.com/home/article/consider-this-risk-tool-for-diabetes-patients/542bae2a6b47b15db4f6caa92049b536.html
And the Tovar paper that this references concludes that:
"So how aggressive should you be in helping your diabetes patient to lower his or her LDL? That of course
depends on the patient, but our review demonstrates that there is no strong evidence to support a target of <70
mg/dL for diabetes patients at very high cardiovascular risk, nor is there strong evidence for use of statins in
patients over 40 whose LDL is already <100 mg/dL."
And this paper suggests that going very, very low with the LDL target may be dangerous:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC59646/
Do have a look at the PCRM website - diet is so very important in diabetes, as it is with so many other medical conditions.
Thank you again for the excellent blog - it's really helped clarify my thoughts on the journey with Type 1.
Very best wishes,
Ian