hypo awareness gone

chrisf-1

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21
Type of diabetes
Type 1
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Insulin
Hi everyone I am reposting this as I originally put it in introductions as I am new to the forum, I am a 58 year old man and have had type 1 diabetes for 38 years and have got through them without it having any great impact on my life until recently, I have lost the warning symptoms of low blood sugar (hypo) and saw my consultant today who firstly told me not to drive (I had already stopped), he also told me the symptoms can be regained by running with high blood sugar in fact his words were double figures and after this regime I could regain the warning symptoms can anyone give me some idea what sort of time frame he is talking about as I live in a remote village with very poor transport links so I am pretty much stranded or is my license gone for good ? Thanks Chris
 

iHs

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4,595
Hello Chris

Like yourself I too have been type 1 for a long time.

If you test your bg levels 5 or 6 times a day (mid morning and mid afternoon) that should help you to avoid going hypo by eating a snack if you need to.

Also try to aim for a bg level of 6 or 7mmol before you eat a main meal instead of being on 4mmol or below. It's difficult to know if your awareness will be greatly improved (it should do) but you should be ok if you test frequently and don't try to be too tight with your levels.

Always have some form of sweets to eat on the dashboard of your car while you drive and eat one or two while you drive (assuming that your journey will be no more than 30mins) It's far better to be safe than sorry.
 

chrisf-1

Member
Messages
21
Type of diabetes
Type 1
Treatment type
Insulin
Thanks for your reply but I am not driving at all at the moment which causes me no small hardship, I am responsible enough to know while I am in this situation it would be dangerous for myself and others for me to do so, I believe my consultant has to inform the DVLA and my next medical is in January next year so I am pretty sure that will be refused can anyone tell me what the criteria is to get my license reinstated as I will suffer great hardship without it many thanks Chris
 

iHs

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4,595
Hi Chris

You need to find out firstly if your consultant has informed the DVLA. He has asked you not to drive while your bg levels are low but that might be all.

If you test more frequently and always make sure that your bg levels are 5 or above and always have something to eat on dashboard then I can't see any reason really why you shouldn't drive and be safe.
I hope that come next appt with consultant you will have slightly higher bg levels.
 

Snodger

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787
Chris - how frustrating - hope you get it sorted soon.

As I understand it everyone's speed of response is different, but it should be possible to regain your symptoms pretty fast - it's not about getting your bg very high but about AVOIDING hypos as much as possible.
Direct your consultant to this article (just one example): http://www.sciencedirect.com/science/ar ... 3694913366
...it explains that you DON'T need to run incredibly high, and if you can avoid hypoing for 4 months you can regain all your symptoms, however long you've had diabetes. The people in this study didn't even have to increase their HbA1c, they just had to avoid hypos.
The experts on this are at King's College Hospital in London - if you want to do your own research on google scholar, search for stuff by Prof Amiel, who is one of the world experts on this.

PM me if you want more article links or info... I'm doing a lot of reading around this at the moment. (I'm a student)
 

chrisf-1

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Type of diabetes
Type 1
Treatment type
Insulin
Hi snodger and thanks for your reply I am unable to PM you at the moment as I am new to the forum and have not used it enough to get the PM privilege but I would like to see more links thanks Chris
 

Snodger

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I've tried PM'ing you - maybe you'll be able to reply directly.
Anyway in the meantime here are some links, but unless you (or your doc) can get access to the full articles via a university library these will be of limited use.
http://www.annals.org/content/134/9_Part_1/729.short
http://www.nejm.org/doi/full/10.1056/NE ... 9163291211
http://onlinelibrary.wiley.com/doi/10.1 ... 11/summary

also if you can get it and you can wade through the medical language, this is a very interesting book: FRIER, B. & FISHER, M. (eds.) 2007. Hypoglycaemia in clinical diabetes, Chichester: Wiley.
The chapter by Amiel in that is really good and also includes lots of interesting detail on what constitutes a 'good' HbA1c.

Also see if you can find this article: Heller, S., (2011) ‘Hypoglycaemia: Its pathophysiology in insulin treated diabetes and hypoglycaemia unawareness’ The British Journal of Diabetes & Vascular Disease 11:1 6-9
it suggests that you can regain your symptoms in as little as 3 weeks.
 

chrisf-1

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Messages
21
Type of diabetes
Type 1
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Insulin
Hi again everyone and Snodger I got your forum notification that I had a PM but it would not let me see it thinking on what you said in an earlier post about talking to my consultant I only get to see him once a year and then it is normally one of his minions so it will be quite difficult to point him in any direction but such is life I may be able to make some use of it myself in fact anything at all is a step in the right direction thanks again Chris
 

lucyunited89

Active Member
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hi chris, i too have lost most of my hypo awareness and my doctor has suggested me trying an insulin pump instead of injecting (dont know if you already have one) so maybe this could be an option for u as well? If this isnt something you would be interested in islet cell transplantation is also available now depending on personal things such as how much insulin your taking. Im going on a trial period for the pump and then hoping to go on the waiting list for a transplant soon after. feel free to ask if u have any questions. lucy
 

microfazer

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i got all my symptoms back -- and en masse -- after one shot of porcine insulin (after 18yrs of symptomless hypos while on synthetics). was unable to recreate symptomless hypos using porcine, hard as i tried. may be worth a try.
 

microfazer

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Snodger said:
Chris - how frustrating - hope you get it sorted soon.......and if you can avoid hypoing for 4 months you can regain all your symptoms, however long you've had diabetes. .....



brings a couple questions to mind:

> is this even possible? i mean, in real life. from what ive read here, even DAFNE-trained still expect one/some hypos every now and then.

> after a return to having hypo symptoms, they will remain for how long?
 

Snodger

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yep, good point - but surely it's possible if you shift your targets up a bit? I don't mean running above 10 all the time, but maybe not aiming for DAFNE targets.

I'm not speaking from experience at this point so please forgive that, but from what I've read, the thing that makes many people on synthetics lose symptoms is repeated hypoing. So you would keep your symptoms as long as you returned to only hypoing about 2x a week. I think.

HOWEVER - as far as I understand this is comparing analogue vs analogue insulins, ie no change of insulin involved. I'm really interested in the fact that returning to porcine got you your symptoms back. Are you back on porcine for all injections now? Have you/your doctor reported the info anywhere? I'm fascinated by the fact that there is all this data about how good animal insulins are, but it's only held by diabetics, and is consistently ignored (as far as I can see) by medics and epidemiologists. Is anyone 'in power' listening to your story?
 

microfazer

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Snodger said:
yep, good point - but surely it's possible if you shift your targets up a bit? I don't mean running above 10 all the time, but maybe not aiming for DAFNE targets.

I'm not speaking from experience at this point so please forgive that, but from what I've read, the thing that makes many people on synthetics lose symptoms is repeated hypoing. So you would keep your symptoms as long as you returned to only hypoing about 2x a week. I think.

twice a wk hypos sounds fairly possible, if one was shooting for higher-but-not-by-much readings. i guess just the idea of life sans hypos -- at first glance anyways -- strikes me as crazy talk :)

as for the reason(s) behind loss/serious diminishing of symptoms, i certainly dont have the expertise to say its definitely only this, that or the other thing, all i've really got to draw on is my own experience, which tells an extremely different story (more on that later on).



Snodger said:
HOWEVER - as far as I understand this is comparing analogue vs analogue insulins, ie no change of insulin involved. I'm really interested in the fact that returning to porcine got you your symptoms back. Are you back on porcine for all injections now? Have you/your doctor reported the info anywhere? I'm fascinated by the fact that there is all this data about how good animal insulins are, but it's only held by diabetics, and is consistently ignored (as far as I can see) by medics and epidemiologists. Is anyone 'in power' listening to your story?

no, theyve got (very poor) excuses for every one of my insulin-related probs and even poorer excuses for the coinciding of decade-old probs suddenly disappearing with a return to porcine. so theres no reporting, or even acknowledgement, because the problem, & thus the solution, does not exist. the insulin, according to every single one of them, can not be a problem, can not be related to problems, can not be anything but perfect. Lilly/Merck/etc said so.

until the next flavor comes out, which is invariably even perfecter.


in the US, Pharma owns the entire game, very plain and very simple. incredibly unfortunate for some of us, but i guess shareholders make out ok.



edit: just to help put into context --- 14yrs bovine/porcine, then 8yrs porcine & fake human in$ulin, couple yrs of just fake human, then 5yrs ananalogue in$ulin, then 4ish years switching amongst porcines and synthetics in diff combinations or as "solo" insulins (ie: nothing but fake human for 6mos, nothing but porcine for 3 mos, then back to some other combo).
 

Snodger

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that's really interesting. It does seem that there's a selective deafness among many HCPs when it comes to the idea that insulins which are sold as interchangeable might work differently in different people, and particularly that the 'old' insulins might actually be better. I need to find a tame HCP now and ask them why they can't hear it.
 

Fallenstar

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Chris, don't know if this might help at all, but I had a lot stronger Hypo warnings on Lantus than any other insulins I've been on, I still get them at the same numbers now on Levemir, but they are a lot milder, which suits me to be honest...as Lantus ones were like :shock: :evil:
Good luck with it all anyway.
 

chrisf-1

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Chris, don't know if this might help at all, but I had a lot stronger Hypo warnings on Lantus than any other insulins I've been on, I still get them at the same numbers now on Levemir, but they are a lot milder, which suits me to be honest...as Lantus ones were like
Good luck with it all anyway.Fallenstar

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Thanks for reply but I am on lantus I think the answer might be bovine or porcine but I have doubts about being able to be prescribed natural insulin
 

Fallenstar

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ahh right, I hope you do get the change you need, it is so frustating when we know what would benefit us but it is impossible to get it on the NHS, even when cost is no issue :( I would benefit from Armour but NO chance ,unless I go private.
There are a few peeps on here on bovine and porcine, I hope you are in touch with them ,as obviously, well hopefully, there is a way to get on it.
Good luck, I hope it works out for you.
 

noblehead

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chrisf,

Thankfully never lost my warning signs but have read that running higher than normal bg over a 8-12 week period helps restore the warning signs, we have had members in the past who have changed insulin and found this to be also beneficial.

Hope you get them back! :)

Nigel
 

jopar

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Chris what is your control like in general and at what point were you swapped from animal to human insulin? And what sort of medication are you taking?

If you think back to when you were swapped from animal to human insulin, did you experience any hypo symptoms changes, since being swapped have you at all found that your BG would dramatically drop without any reason one minute you'll high the next you rushing to get your hypo kit..

Classic symptoms for an individual not getting on with human insulin, is major fluctuations for no apparent reason in BG's high one minute then in their boots the next a very very quick drop in BG, aches and pains, feeling foggy headed and/or depressed or generally lethargic and out of sorts all the time.

I know that when peoples started to change to human insulin's there was uproar, as some people experienced a change in their hypo symptoms from one to the other so had to relearn them again, my husband was one with animal insulin first sign of an hypo was sweating, but with human insulin sweating doesn't happen until his BG's are dangerously low and I didn't notice any real difference

Another thing that is often forgotten is medication such as BP tablets can mask hypo symptoms, so perhaps if you are on these a change to another type might improve thing a bit,,,


You can get hypo unawareness on what every insulin you use and one of the est methods of kicking hypo awareness back in is as your consultant says, run your BG higher for a couple of months..