Options open to me? Lost hypo awareness

[irishrichard]

Hi folks,

Have put a few posts on here about having lost my hypo awareness and whether it may have been due to me being on lantus for too long, as have heard its possible to lose your awareness using this insulin!

I"ve been having problems with hypos pretty frequently for past year, they happen at all different times of days, before during night, now at any time :?
I've been type 1 for over 17 yrs now and always had pretty good control of my levels and have even split my lantus dose from 30 units in evening time to 12 units am and 12 units pm

My Consultant is a nice guy but just keeps saying, just adjust dosage and everything will work out and my hypo awareness will return?

I've suggested changing from Lantus to Levemir and have even suggested that maybe Insulin Pump could be an option but he continues to say its just to find right dosage and everything will return to normal

My problem is that due to all my hypo's, my boss left me go from my work and no one will touch off me as they all know each other in my line of work, i.e. restaurant management! They all know I'm good but i'm no good if i'm unconcious lol, added to that i've good very high blood pressure now too! Got rushed into A&E this morning, due to having hypo and docs where shocked with how high blood pressure was! I've to see my Consultant tues so want to force his hand into doing something different!
My last Hab1c was 6.8mml which they were delighted with but not me!
I reckon i've got maybe 20 hypos per week for the past 3 months, my blood pressure must be high as they said but i've nothing for that and even have got another "man" problem , if you get my drift?

I want to be able to arrive on tues to appoint, say the problems are x,y and z in my eyes, options available are 1,2 and 3 and see if he'll listen too it The last time he told me i'm too interested in my diabetes?

Any suggestions will be appreciated

Richard

 

[ebony321]

Hi,

just reading your title my first thought was 'too many hypos?' which you are currently definately having far too many and that must get very tiring bless you

I've never heard that lantus can cause frequent hypo's and since you spilt your dose i would think that that would be even less the case but someone more experience may correct me if i'm wrong.

From what i know hypo awareness can be from having too many hypo's so eventually your body gets used to being in the 3's and 4's so stops 'warning' you as it thinks this is normal for you! until you collapse or are too low to be able to get yourself back up!

Have you tried running your BG's a little higher than you normally would? then gradually reduce back to normal when/if your hypo awareness returns?

This will probably cause your HBA1c to rise but it think thats nothing if you can get your hypo awareness back

Have you been on a carb counting course such as DAFNE? this takes you back to basics and teaches you how to match your insulin to the cabrs you eat and how to tweak your doses if your in a situation such as yours?

sorry if i couldnt be more help.

i hope you find a way to wort this out and get back to work

 

[janabelle]

Hi Richard,
You could try changing to animal insulin, if you've not tried it yet. I had loads of hypos on analogue insulins, up and down like a yo-yo, and the hypos could be sudden and unpredictable. I've been type-1 for 22 yrs and although I never lost my hypo-awareness completely, I found on Lantus it was difficult to tell whether I was hypo or not as I could feel hypo when my BG was normal or high. I don't know whether that was down to the lousy control I had on lantus and the daily variation of BGs that caused it, but coming off Lantus & Humalog solved the prob for me.
Animal insulin is a viable treatment option and for many people like me, it's more gentle (natural) action makes control and life generally a lot easier, having been on the rollercoaster most of 22 yrs. I don't know if your hypo signs would come back, but many people reported loss of hypo-awareness when changing from animal to synthetic insulns in the 80s, so there is a link-for some people at least.
It might be worth giving it a go, even for a trial period to see if your hypo symptoms return.
Jus
ps know what u mean about the Hba1c, mine was always "within the acceptable range" around 7-ish, and my clinic were very happy with that- even though I told them my sugars were going up to 15 or higher everyday and hypos aplenty :evil:

 

[cugila]

Treatment of hypo-unawareness/frequent hypos
• You will need expert help from your nurse and doctor

• The newer insulin regimes which are based on glargine or detemir are likely to be very helpful, especially in reducing night time hypos.

• Night time hypos..make sure you are using the newer glargine or detemir insulins.

• If your hypo is related to exercise, clearly you have not adjusted your insulin enough..you needed less insulin before the hypo, see

• frequent hypos that you are not aware of, try and reduce your insulin, all doses, for 4-6 weeks (with expert help). Gradually your hypo symptoms should return, and then you can start to very gradually increase your insulin doses, with expert help.

More information here....scroll down the page.

http://medweb.bham.ac.uk/easdec/prevent ... .htm#treat

 

[noblehead]

Richard,

I would say the reason why you have lost your hypo awareness symptom's is due to frequency of your hypo's. Twenty hypo's a week is way too many and most well controlled diabetics will find that no more than 2 is acceptable, I've been on lantus for 8 years now and still have very good hypo awareness as much as I did nearly 30 years back. Since completing the DAFNE course I can go 2-3 a few weeks without a hypo but I do monitor my bloods closely and test around 8-9 times a day. The usual advice is to run your bg slightly higher for 2-3 weeks avoiding hypo's, your diabetes nurse would be the best person to discuss this with but hopefully in time your awareness will return.

What you need to do is look at why you are having 20 hypo's a week, your insulin/carb ratios must be wrong or you are injecting far too much basal insulin, perhaps asking to enroll on a carb counting course such as DAFNE would be beneficial in reducing these hypoglycemic episodes.

Good luck!

Nigel

 

[irishrichard]

Thanks for all the replies

Usually I could find a reason why i'd maybe have had a hypo, eg insulin dose, extra exercise etc but i can't find any reason i can pin point!

my morning blood levels for the past 2 days were over 20 mll when i woke! Not happy about this but have to go with the flow

My problem is for the past year I've left my levels go up a bit, bloods go higher and i feel cr*p, my weight drops, and i'm a thin guy so any weight lose and I look like i was in a concentration camp in world War 2!

I can go a few weeks without hypo's but when they start i get a massive dose of them! I get really bad headaches after them too so avoid getting them like the plague!

I'm getting very impatient now as its nearly 1 year i've been changing dosages, split the dose, my diabetes never interfered with my life but now i'm getting no peace ! everyone asking me all the time, whats your bloods like etc etc, and i'm not a person who likes attention thrown on me!

My blood pressure is high but how come they did"nt notice over the past year at the clinics?
I"m in the Republic of Ireland and have met the dietican to check about carb counting with insulin dosage!

Will speak again tomorrow with consultant and hope he might try something new?
Otherwise, i reckon i'll have to move back to France and get advice from over there because when i lived there before, i'd never have problems with my health!

Thanks again for the advice

 

[iHs]

Hi Richard

Try testing your bg levels more frequently as that will help you take stock before you get to being in severe hypo land.

Not sure why your consultant has not agreed to let you change to Levemir as that is a nicer milder basal insulin and is worthwhile changing even though it works best when used twice daily. Not everyone gets on with it so it's worth looking at the other alternative background type insulins.

Ideally an insulin pump will help you no end especially with your line of work - restaurant manager. You meet the NICE criteria. Probably working in hot kitchen areas is not doing your bg levels a lot of good hence the reason why you've lost some of your hypo awareness.

Do try to work out a correct ratio of insulin that you can use. It's easy to do through trial and error and testing 6 times a day. If you are able to get on a carb counting course that will lay out the basics of working out ratios.

Hope you get yourself ok again as hypos are not nice.

 

[maryodriscoll]

Hi Richard

It sounds to me that you have the same problems i have been having on Lantus. Since starting on Lantus about 10+ years ago my HbA1c has always been around the 7 mark or just over. Doctors always telling me its just fine and don't change anything even though I explained I was having 2 or 3 hypos a day and these of course would lead to highs of around 15. This went on for years. Last year i switched to Levimer for a while but I kept getting really big highs especially in the morning and HbA1c went up to 7.7 so i went back to Lantus. i also went on a carb managment course which helped a bit but still lots of random hypo's. I have switched back to Levimir now for 2 weeks now and things are getting a bit better. I used to take 17 units of Lantus split into 2 but I now take 22 of Levimir split 10 am and 12 pm. Working ok so far. I also find that even if I do not change my routine at all I can get random hypo's for no reason. Or random highs. Might be worth giving Levimir a go to smooth things out. Its early days for me and the next HbA1c will be the test but so far so good (or at least not so bad )
Hope it works out ok for you. If the Levimir does not help there is the option of the battle for the animal insulin as Janabel says. That will be my next port of call if it doesnt.
Mary

 

[irishrichard]

Thanks for the post Mary

Saw the consultants yesterday and they listened to my worries! then told me, i'm looking for extreme changes for a minor problem
now i'm on split dose of lantus 8 units in am, 8 units in pm, topped up with 4 units of apidra for breakfast, lunch and dinner! so 12 units per day!
have to see them again next week but readings since yesterday evening have been , before dinner 6.3, after dinner 22.4, before sleeping 19.5, this morning before breakfast 17.6, before lunch 13.7 :evil:

Explained about my blood pressure too and they checked it and was high, told me it could just be white coat accident taking the reading, nothing to worry about as i'm not old?

I can undersatand why the Irish health minister resigned yesterday lol

 

[maryodriscoll]

Richard sometimes it takes a while for changes to doses to kick in but seems a big drop from 24 to 16 lantus a day but I am no doctor. Looks like your fast acting may need a little raising though? Maybe 5 at breakfast and 6 before dinner to start? Lunch looks ok though.
I will let you know how I go with Levimir and if I do get to switch to animal will let you know that also.
Hope things settle for you over the next few days.

 

[sugar2]

Hi Richard,

I had this problem whilst pregnat..onlevimir at the time. the cause for me, was, without doubt, too many hypos. When I asked my consultant about it, and what to do he said

" well, if you weren't pregnat, we would get you to run high, say at about 10 mmol/l for a bit, and then gradually increase your insulin...but because you are pregnant, and can't afford to run at such levels you are going tohave to live with it"



Now, i did not do this, and got my awareness back, by just slackening off the control a touch...but it is so difficult. My BG swings a lot, and so I got put on a pump. This works well for me, as I can test and adjust regularly throughout the day..

Not sure if that helps, but I wish you luck!

 

[irishrichard]

To be honest, i'm going to go only with the insulin dosage the consultant gave me and stuff them under his face next week to prove a point!
He's totally against insulin pumps and I know his annoyed with me as my french consultant rang him and asked him to change the lantus to levemir, as he'd do that if i was in France!

I know i'll have maybe 6 days of bad results but he may be pig headed but i'm twice as bad lol

I appreciate all the replies and will let you know what happens! If booked flights to go to France in 2 weeks anyway so if he does'nt sort it, I'll go with my french consultants advice!

 

[busibee]

My husband who is a Type 1 and has been for 29years also has lost awareness and is on lanctus. When he was on animal insulin years ago he had much more hypo awareness symtoms. Although he has done a DAPHNE course his control has become very erratic lately, with extreme highs and extreme lows and the diabetic nurse, at long last, has agreed to ask the consultant for a pump. He has terrible mood swings and my grown-up son and I who live with him, with the best will in the world, find the illness very challenging, to put it in a polite way. We are not basically unkind people but we are way past the end of our tether with it all. I repeat that no body else ever says that we are unkind and most people say we are gentle natured but we have long since gone past despair.The consultant and diabetic nurses have no understanding of my husband or us with regard to the hypo unawareness. We are given the impression that we are a nuisance.

 

[janabelle]

HI Bisibee,
Aside from loss of hypo-awareness, it is also known that synthetic insulins can cause behavioural disturbances such as aggressive behaviour in some patients. Of course having his BGs swinging all over the place won't help matters. It's infuriating that diabetes clinics in the main are ignorant of these issues
Has your husband considered changing back to animal insulin?
I strongly suggest you contact the IDDT(insulin dependent diabetes trust),a charity that was initially set up to support people like your husband,who were experiencing problems with synthetic insulins - click on this link for the contact details. http://www.iddt.org/here-to-help/contact-us/
Jus
Here's an article that might interest you healthy.net/scr/article.aspx?Id=2826

 

[janabelle]

Hi again Bisibee,
There's an interesting post by Nilemthakrar on the "headaches" thread; her daughter suffered mood swings on Lantus- Here's the link viewtopic.php?f=15&t=19104
Jus

 

[irishrichard]

Hi folks,

Just a report on how my appointment with the Consultant went!

He was shocked with the high blood sugars for the week but said this must have been down to me catching the flu and not realising it? :shock:
So now has increased all my lantus and apidra doses by 1 extra unit for the first week, then adding an extra unit for the following couple of weeks!
If I"m still not happy, he'll talk about changing to levemir!

He also put me on Micardis 40mg tablets to help with my blood pressure and will look to increase this to 80mg if I"ve no bad reaction to it

Am flying over to France on monday to get the opinion of my french consultant!

My blood levels are ok but thats due to me taking extra apidra which the other consultant does'nt want me to do but 1 week with bloods over 20mml was enough for me!

 

[microfazer]

I would say the reason why you have lost your hypo awareness symptom's is due to frequency of your hypo's. ......

to play devils advocate, with what frequency does one lose one's awareness?



another vote for IDDT/animal insulins, at least as a quick & simple test. all things considered, it cant get too much worse than:
> loss of hypo symptoms, potentially resulting in bigger issues
> being told to both control your sugars & run them high, in an effort to regain symptoms that you'll lose again while regaining 'proper' control :***:
> a rollercoaster ride of blood sugars, which in and of itself can drive one a bit batty



or perhaps it really is all your lack of efforts/controls, theres no way medicines could really ever be at fault *ahem vioxx cough cough thalidomide propecia ahem motrin*