DAFNE Hypo Awareness Restoration Program - Why treating Hypos fast is important.

[tim2000s]

One of my T1D friends recently completed this program at King's Hospital in London. It is a first of its kind programme aimed at those who have lost hypo awareness, and the person who undertook it has been Hypo unaware for some time. They found the course to be pretty incredible, and I've cut and pasted from Facebook here to share the information.

If you are Hypo unaware and are interested, you can ask your GP to temporarily transfer you to Kings to undertake the program as they are looking for further participants as it is still at an early stage.

The present course is built solely on evidence from working with and scanning the brains of adults, but there are probably some simple things one can do with youngsters to help them focus on what their body feels like when they're under 3.5mmol to help them recognise hypos. One can also instil the need to always treat fast and only with fast acting carbs (not other treats!) so they're not below that number for more than a few minutes. The key message is that it's the prolonged lows that affect and alter the brain & its future responses to hypos - at least in adults, so no harm in trying that simple safety measure. Also it's vital not to instil a fear of highs, which seems to be the main reason unawareness happens and is inappropriately tolerated by many adults with serious consequences.

"The course provided a fascinating insight into hypos, how we live with them - like me for decades - and how we can become better equipped to prevent them and restore early warning signs.

The staff and their leader Prof Stephanie Amiel, were exceptional and I have the utmost respect for them as we were what they called the 'most different group' they'd had, and yes, there were some fireworks at times. It was very challenging but I feel incredibly lucky to have had this opportunity and very positive that it's already had huge beneficial effects and I've noticed my first warning signs for years.

If you believe you're hypo unaware, or even just terrified of hypos, this course would help you for sure but you need to TEMPORARILY transfer to Kings via your GP. (They're not interested in increasing their patient numbers but just in developing the course).

They'll know shortly if they can expand the course (to prove its efficacy in research) in several centres around England. They asked for any anecdotal, anonymised info about people who think they'd benefit, [so PM me (Tim) in confidence if you are interested and I can pass your details on.]

I got the strong impression (one person was absent today so not sure about them) everyone who attended will be recommended for CGM funding, and for those at Kings, that will start automatically as they just do it without asking your CCG, believing that NICE covers this adequately. For those like me, not based at Kings, it's not automatic but merely recommended and I'm not aware of my own CCG funding anyone on CGM (but am about to check that out).

There is concrete evidence from brain studies that a change happens for everyone at 3.5mmol, or 63 for the USA, no ifs or buts! Papers have been written and the Prof will be sending a lay persons summary so will be shared when it arrives in my in box.

Feeling hugely hopeful and optimistic that my long standing hypo challenges are manageable. At last. Feels bloody Good."

 

[catapillar]

Thanks @tim2000s isnthere any further information on the time commitments that the course would require? I'd be interested, but there's no point seeking a referral for a course that I couldn't actually attend...

 

[Juicyj]

There is concrete evidence from brain studies that a change happens for everyone at 3.5mmol, or 63 for the USA, no ifs or buts! Papers have been written and the Prof will be sending a lay persons summary so will be shared when it arrives in my in box.

Hi Tim,

My DSN said about a year that it was important to avoid hypos as much as possible due to the effects on the brain, do you know what these changes are and what the long term prognosis is ?

 

[noblehead]

My DSN said about a year that it was important to avoid hypos as much as possible due to the effects on the brain

@Juicyj, it must be 5 or 6 years ago since I was on the DAFNE course, on the Q&A day with the HCP's the question came up about hypo's and possible long-term damage, the Endo said that research was on-going at the time but he said we should try and avoid them as much as possible until the evidence was conclusive (as if we don't try anyway ).

 

[Juicyj]

as if we don't try anyway

Exactly !!

It was the first time for me since being diagnosed that this information came to light, since then i've been very interested to know how the brain changes, i've found that over the years since being diagnosed that i've become forgetful, only small things like forgetting my phone, to do things, but it's a minor irritation and i've tried to work out whether it's related to hypos or the simple fact that thinking about type 1 takes over the brain so much.

 

[tim2000s]

Hi Tim,

My DSN said about a year that it was important to avoid hypos as much as possible due to the effects on the brain, do you know what these changes are and what the long term prognosis is ?

Based on what I've read from some of the research, I believe it's basically that the brain stops releasing certain chemicals/hormones relating to stress when this level is exceeded too frequently asit becomes acclimatized, but I'd have to wait and see what the paper that she talked about here says.

 

[tim2000s]

Thanks @tim2000s isnthere any further information on the time commitments that the course would require? I'd be interested, but there's no point seeking a referral for a course that I couldn't actually attend...

The timing is:

• One day per week for three weeks
• Two weeks of 1 to 1 hour long discussions with the HCP (which can be done on the phone)
• One full final day
• Email follow up and half day review within two months

 

[catapillar]

Thank you @tim2000s

The changes in the brain are just that right? No normative statement as to whether they are bad changes with a long term adverse impact on cognitive function? My understanding is that any research on the cognitive impact of frequent lows is, at most, equivocal, because they simply aren't starting out with people who have pre-loads-of-hypos baseline cognitive tests in place so you can't know whether there has, in fact, been an impairment in the cognitive function.

I like my cognitive function, it's my best bit. I do also quite like my kidney function though...

 

[tim2000s]

Thank you @tim2000s

The changes in the brain are just that right? No normative statement as to whether they are bad changes with a long term adverse impact on cognitive function? My understanding is that any research on the cognitive impact of frequent lows is, at most, equivocal, because they simply aren't starting out with people who have pre-loads-of-hypos baseline cognitive tests in place so you can't know whether there has, in fact, been an impairment in the cognitive function.

I like my cognitive function, it's my best bit. I do also quite like my kidney function though...

As far as I can tell, the research that is linked with this programme looks solely at the reasons why hypo unawareness occurs and seeks to treat that.

The only research I've seen in relation to cognitive impairment suggests that it's severe hypos that pose the risk, i.e. the definition of severe was when the blood glucose level drops below 2.2mmol/l. At this level brain cell death occurred. There was some work done using monkeys as examples and we've seen on here from anecdotal evidence what prolonged, very severe hypos can do.

 

[noblehead]

but it's a minor irritation and i've tried to work out whether it's related to hypos or the simple fact that thinking about type 1 takes over the brain so much.

Sure it will be the latter of the two.

 

[novorapidboi26]

Does the research indicate that any changes made to the brain can be reversed, training it to start releasing the cocktail of brain juices again for example...?