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cRaZy aDvICe

S

Shax72

Active Member
Messages
37
Type of diabetes
Type 1
Treatment type
Pump
After a long time of my 25+ years as a type 1 - my condition is finding a level platform to make me feel a whole lot better. My control over the last 10 years has been wayward. But now I use a Contour USB BM tester, I find things a whole lot easier and less of an embugarence, in terms if it reminding me and I dont have to write everything down i do. !!

Crazy bit tho....... cos I have had numerous hypo's over this time - I have lost most sensations. Hbac! is at an all time low..... BM's are...... fantastic. - pre meals its mostly around 5....and its the same two hours after !!!!

SO WHY THE HELL IS MY SPECIALIST RECOMMENDING THAT I RUN HIGH TO GET SENSATIONS BACK ?..... FOR UP TO 4 MONTHS ?........

I can live with the lack of warning..... I have a great partner who knows me well enough to shove a lucozade and a hob-nob in me if I dont notice.

I cant live with a constant feeling of sickness and headache along with moodswings .....constant thirst.....and lethargy. I like getting up to go to work every day!

Specialists ?......Hmmm..... call me a sceptic ..(will be septic if they have their way !)..but I know a thing or two about this condition : I listen to my body to tell me when it can..... I know that I will be extremely ill if I run high....and just about now I like being settled far too much - I dont want retinopathy again..... going from 12U of Novorapid to 8U per meal and 28U of Lantus to 24U pre-bed.......sky high !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sorry Doc...... I'm ignoring your advice......
 
It's great you've got such an amazing partner, but are they around you all day and night? What happens if you have a hypo in the night and your partner doesn't wake up and give you sugar?

The potential short term consequences of having no hypo sensations appears a vastly greater danger to your health than slightly higher hba1c levels. I can see why your specialists are telling you to do what they are, if you say you have no hypo sensations!

Remember though - that's only my opinion. It's your decision what you do with your health.

Sam.
 
It's just that - advice. YOU should be the expert in managing your diabetes. Sounds like you're doing a grand job. As long as you eat enough/inject accordingly, you shouldn't worry too much.

Sounds like your lucky enough to have a partner that is clever enough to notice when you are going hypo. I'd say keep doing what yo're doing.

How do hypo's affect you? I understand that if your level drops from 10 to 3, you're going to feel some hypo symptoms. BUT - if your levels are steady at around the 4-5 mark, dropping down to just 3 might not give you hypo symptoms. If hypo's are less likely when you are well controlled, is that a reason to run high for a period to get your warnings back? Because if you go back to being well controlled, your signs are gonna disappear again anyway, right?
 
My hypos generally occurr below 4..... i get feeling around 2.8 and below on occasion but not all the time - Yepp I'm lucky to have a good lady looking after me too !! She is brill.....I was hypo-ing in bed the other morning..... she said "you're going low".....I said i was not feeling anything.... but true to form.....!!!

The hypos have been apparent for 10 years......being brittle does not help and overall control is not easy..... but presently i am enjoying looking at my meter thats says >5 on regular occasions !!!!

To compromise control for hypo sensations...... hmmm rock and a hard place......
 
Shaz

Hypo's only ever occure under 4mmol/ml doh!

Accuse me but you are the diabetic NOT your wife, so why are you making her responsable for your failings in control... As you really haven't got good control, just a low HbA1c... Good control is both avoiding hypo's and high's, maintaining hypo awareness etc (yes this can be done, I've been diabetic almost as long has you, I have good control and hypo awareness, and look after my own diabetes, my husband has bene T1 ten years longer than I, and he still's maintains hypo awareness and good control)

I think that relying on your wife to bail you out, is basically disgusting indeed, who's going to comfort her and reasure her when because of your ingorance and stupidity, that she can't pull you out of your hypo, you've gone too low even for the paramedics, A&E, ITU to sort you out, you end up dead or have the brain power of a vegetable... Why she shoulder the blame or in any way think that she failed and caused your plight

Your consultant is being quite sensible with his request and should really be listened too

I hope you don't drive, as your licence will not be vailid, so nor will insurance.. Hypo unawareness means are you are legally bound to surrender your licence
 
Jopar,

whilst you are entitled to an opinion, I neither respect or take anything on board of what you say. Saying that I am irresponsible..??...I consider myself lucky to the fact that she pays as much attention to my needs, when - my body and a condition I have thru' no fault of my own, reacts in the way it does.The fact that she does this without question and is her decision, its certainly not for you to pass comment - I will get her to reply to you later on this evening, she was with me during the consultant's time, and was answering questions and inputting when she wanted. Its not a disgusting act in the slightest. I dont rely on her to do anything for me. I'm a 38 year old man who is responsible for himself, and my partner and the kids.....I'd suggest you get off your soap box and go and enjoy life. My post was merely to point out, that it seems a crazy way of dealing with the current situation.......Am sure it will work for some people, but not for me.

And in your final retort....... I do know the laws of DVLA, am fully aware of my responsibilities and - for the very reason my hypos and control have been apauling over the last decade - I dont drive and dont intend doing so. I would never think of compromising other peoples safety let alone my own.

Ironic as it is, diabetes is a balancing game.......I have the balance at this present time, and I am keeping it that way as it will avoid complications in the future, and it wont leave me with a self opinionated view on things either.!!!!! Happy Days
 
Hi ,
You are on analogue insulins, and people often lose their hypo-awareness on these insulins, and worryingly when they've only been on them for a short time :(
In the 80's when patients were switched to Synthetic Human Insulin from Animal Insulin (for some whether they liked it or not), the most common complaint was lack of hypo-awareness. You should read this http://www.mindfully.org/GE/Diabetics-Not-Told.htm
You seem to have got things balanced correctly and although it would be shame to spoil that, your doc is obviously worried. I'd be concerned too if I had no hypo-awareness, I'd certainly be too nervous to run such lowBG levels. An alternative to letting your sugars run high, might be to try animal insulin for a while and see if you get your hypo-awareness back. Might sound extreme, but seems a better option than deliberately running high, ; personally I wouldn't fancy that option for the same reasons you mentioned. I've always thought it odd advice,especially as we all know the dangers of running at high levels. Well done on your excellent control, but take care.
Best of luck
Jus
 
I don't think you'd have to run particularly high to regain hypo awareness. I think the point is that hypos can kill you and that recognising them is your responsibility, nobody else's. But like you said, it's your choice! :-)
 
Though Jopar expressed herself strongly , I agree with many of her sentiments, having hypo unawareness is not necessarily benign and without risk.
Rather than repeat the risks perhaps you might read this article which gives the evidence for and against the various possible problems
http://www.diabeteshealth.com/read/...a---what-every-person-on-insulin-should-know/
If after reading it you want to consider some ways that may help you in regaining awareness this article has some information.
http://www.diabetesnet.com/diabetes_control_tips/hypoglycemia_unawareness.php#axzz0r1lK5Uwh

I have been there, I had an extremely low Hb A1c of 4.9% and after realising I wasn't recognising hypos until they were at times less than 2mmol I deliberately set about avoiding hypos to regain that awareness . I now recognise them at about 3.8mmol but if I have few hypos in a short time period I notice I'm not catching them until lower levels again. My HbA1c is a bit higher, but still comparatively low.

A couple of things that I find very important. Like you I like to be between 4 and 5 mmol before a meal, unlike you I aim for a post prandial reading of about 7mmol because the rapid acting insulin will still be active and I will drop further. I'm not certain from your post if you just take the same 8u for every meal or vary it according to the carb content,. Certainly I've found learning to do this well and discovering how to account for differing types of carbs and fat content in the timing of doses means I can normally achieve this goal... although like everyone I get it wrong with an horrendous number occasionally :(
Also I know that unless I have been exercising late in the day my glucose levels don't vary by very much overnight. This means that my basal is at the right level for me. I've only found that out by lots of testing (and every now and again retesting) There is lots of info on basal testing available on the internet.

These measures are both possible on MDI but the last thing that has helped me has been having a pump. With that I can lower my basal for activity, it took me a while to get it worked out but I can now exercise at normal blood glucose levels without so great a risk of hypos. In fact I got my pump to help with this (but I'm not in the UK). It is more difficult to obtain one in the UK but it might help you to obtain the lower levels you want without the hypos (though if you decided you wanted one it wouldn't be a good idea to rub your consultant up the wrong way :wink: )
 
Sorry Crazy but I agree with what jopar has written!

Your diabetes is your responsibility not your partners, so it is unreasonable to think or assume that she will be there all the time when you are having a unrecognised hypo, have you stopped to consider that putting this responsibility and burden on her is fair?

No one will argue that the better control the less chances there are of complications in later life, but good control means stable control, which in turn means keeping bg's within range both pre and post meal-times without regular episodes of hypoglycemia, having a low hba1c means nothing if this is a result of frequent hypos.

I certainly wouldn't want to trade off my hypo awareness for the sake of having a hba1c of 5, I value my own safety and those around me, so if it meant increasing my levels by 1%, so be it, no way after 30 years do I want to lose my awareness. As Pheonix has posted, there are many risks associated with hypoglycemia, research is on-going as to the effect it has on long-term brain function, and there are also cases of people dying in their sleep (death in bed syndrome) where people have not woken up from a hypo with tragic consequences, very rare I can assure you, but there are cases of this happening.

The choice is yours and yours only, but I would imagine that, like those that have posted already, most type 1's would have a similar view to what has been expressed already.

Regards

Nigel
 
why not try running your numbers around 7-8 for a while, not a hugh hike upwards but enough to try and get your awareness back to the 3-4 mark? Just for a few weeks, if you take a methodical approach, then perhaps you can get your awareness back and by doing that, give the Mrs a day off from hypo watch every now and then?! I lost my awareness and it was pretty grim and I can honestly say, having my awareness back is much better than not having it. Out of interest, do you know how often you are hypo-ing every week?
 
Hi Shaz
I am having to run high at the moment and yes you are right it is a horrrible feeling I hate doing it, but the decision is yours to tell you the truth i can't wait to return to normal

Tracey167
 
For the record............


I dont tell my other half to keep on watch for me.....she does cos she just loves me. Plain and simple just like if she was an asthmatic I would help in her hour(s) of need..... its what people do for each other......

If only people read things properly and actually saw that my post was tongue-in-cheek in terms of content..... I was POINTING OUT THAT IT DOES NOT SUIT ME TO FOLLOW THEIR ADVICE AT THIS STAGE.........

So........ to all those with a smart assed reply slating me cos my mrs looks out for me..... go take a hike - I could not give two hoots about your view. And for those who DID understand the thread - I thank you for your understanding and constructive advice - it makes sense to be cautious at this moment in time and to see the opinions of like minded people, encourages me to follow my hunch, but to mix and match the status quo.

And before you (negative) responders reply again...... she is sat next to me right now laughing @ you !!!!!! How about you borrow my girls "peter n jane" books before you venture onto the beano ...... the big words like "Yikes" and "go to your room" may scare you.
 
Hi Crazy
I've been Diabetic for 28 years of the 30 I have lived. Like you I am Brittle and like you I have no symptoms until I hit 1.8 (been struggling without them for 9 months now).
I am currently doing a minimum of 12-18 tests a day and I know it is only a matter of time before I have a fit or end up in hospital :cry: . Luckily my night hypos wake me up, unlike you my husband doesn't always notice them and as he works shifts I am alone alot. You are lucky to have such a supportive wife who can see them!!!
Anyway, 4th June 2010 my consultant gave me the same advice let youself run high and then the symtoms will return. He didn't say 4 months he said three weeks I have the follow up appointment on 22 June 2010. And as normal I have do more fastings in between. I hate fasting as I do soooo many of them and they never seem to help me much, if anything they make things worse.
What my consultant did say was that once I was stable on a high level (above 10.0) then we would gradually pull me back down slowly and try to stabalise me there. He said that I had lost my hypo awareness because of the amount of insulin I am taking and by reducing the amount my awareness would return.
Perhaps you could ask about borrowing a CGM for 30 days to try to pick up on a pattern so that you can make adjustments then. I am currently on a waiting list to borrow one for that purpose.
I know my post isn't really helpful but I just wanted to say that I understand where you are coming from and that you are not alone!
Good luck in whatever you decide

Molewitters

Insulin pumper for 3 years
Type 1 28 years
Stable for about 5 minutes...
 
Hello, I have been diabetic for thirteen years now. I have suffered twice with DK. I lowered my Hba1c level to 7.4 which is great for me, but my diabetes nurse gave me the same advice due to not feeling low blood sugars. I couldn't feel that I was going low until it hit about 2. Dangerous for driving. To combat this I kept my blood sugars at around 8-10 for a month. I can now feel if I am going low much sooner. I think that as long as you can keep a close eye on your blood sugar and make sure it does not rocket to unmanagable levels then it should be fine. That might be easy for me to say being on a pump, but it is managable for everyone.
 
Hi Poole2006

It's nice to know that it worked.
Although I am finding it hard to keep my sugars from climbing above 14 as I can't feel highs either and with all of the blood tests I am doing my fingers are getting sore :( But it's worth it! I don't really understand why I lost the awareness as things had been going OK until December last year thank's to old pump Bob. Then poof symtems disappeared and I'm still struggling six months on.
Two weeks into the three that the consultant promised and although I've only had one 2.8 I still can't feel anything. Did you loose all awareness? High and Low? or just low? Did it take a full month i.e. 30 days?
It has been nice knowing that I have only had one hypo in the last two weeks instead of the 4-5 times I would have had. :)
How did you manage to stop going above 10?

Molewitters
Type 1 28 years
Pumper 3 years
Stable for about 5 minutes...
 
Molewitters,

Your post is very encouraging and I thankyou for the response....its a comfort knowing other folks are experiencing the same issues and other views (like Jopar) dont help in any way.!!!!!!!!!!!!!!!!

Some people do far too much talking when they should be listening !!!!
 
Shax72 said:
Molewitters,

Your post is very encouraging and I thankyou for the response....its a comfort knowing other folks are experiencing the same issues and other views (like Jopar) dont help in any way.!!!!!!!!!!!!!!!!

Some people do far too much talking when they should be listening !!!!
Click to expand...

Hi ya, this probably won't be what you want to hear, but the chaps on here who can come across as a bit, well, 'forthright' , have sooooo much experience and a wealth of knowledge. Delivery of some posts is not always at it's best, but if you can, try and remain detached and read the info they are giving you in unemotional way! Easier said than done, I know, I've tried it :mrgreen:

Bottom line, we are all in the same boat but we aren't all the same. It sounds to me like your Mrs is a gem and you are lucky to have her! she should have a coffee with my OH and exchange 'horror stories :wink:
 
Debloubed,


Hi......errmmm theres a difference between "forthright" and damned rude !!!

Telling me I'm disgusting and irresponsible ??......... thats just *&%£$@~ rude !!!!

Yes I am lucky my other 'alf understands AND takes an interest....we have a fantastic relationship - having been in one that has no understanding and no interest to now - we should not compare but we do !!!..........its just refreshing, and I for one feel very lucky.

Diabetes is not easy to live with and to live with a diabetic - hmmm - I give a nurofen a headache !!!.......

As stated my post was tongue in cheek to see other experiences....I'm actually moving toward the fact that the advice isnt so innappropriate - as I have listened to the differing views......I can see the logic and science !!......its about boundaries.....the doc did not outline any.!!!.........and I'm really intrigued with the pumps........if it means i get a chance to try the regime..... i'm open !!!

:wink:
 
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