HIGH Bood sugars - whatever I do, desperate and fed up.

doogyrev

Newbie
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3
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diabetes
Hi, I am new to the forum so hope I am writing in the right area. I have been insulin dependant for about 12 years, female and age 36, but I have never had so much problems as now controlling my bloods. I am regularly seen at the hospital, given different things to try and to be honest nothing seems to make a difference - for instance, I now split my lantus as dr's said not lasting 24 hours. I can wake up with blood sugars of 7, two pieces of toast I would inject 6 for as I am using a 1.5 units to 10g of carb so this is still over my bm's will then be 19, they will go down to about 14 before lunch - maybe. I inject 12 units of lantus am and 6 pm. I can go to bed with blood sugars of 19 and wake up with 8 - the doctors said splitting my lantus would stop this drop, bearing in mind I have gone from 14 units at pm to 6! Tea time - now they are 21 probably my fauly as I stupidly ate 7 raspberries whilst out raspberry picking - I cannot eat anything without my sugars going sky high. Fruit is really a bit of a no for me even though I love it. I am just having a nightmare two months ago had a scare had two bad hypos within 3/4 hour and ended up in hospital and subsequently started panicing after injecting insulin for fear of going low and not being able to get sugars up. I just feel whatever I do does not work, I dont feel that great on a daily basis - tired etc, bit spaced out - I have two children 9 and 5 and my life is being controlled by diabetes. I test about 20 times a day :cry: - as my sugars are so eractic and in addition to this before my monthly cycle i get really bad ketones until my period starts which then throws everythign up in the air even more, sometimes I dont get a cycle so the ketones can go on for two months until it comes, the ketones then seem to disappear!! HELP!!!! I do not know which way to turn and the doctors/nurses just say well done you have kept yourself out of hospital - I just dont know what to do anymore and need help to keep my sanity! thanks for reading, would welcome any suggestions with love from a very fed up person who hates diabetes kx
 

covman

Member
Messages
10
This is my first post after quite a bit of lurking! Not sure on what advise we are meant to give on here seeing as im not a doctor, but i can tell you what i would do. If my blood sugar was 19 before bed there is no way i would go to sleep with it. I would have about 6 units of novo rapid to get it back down, however everyone is different as you know. Im just considering splitting my levermir too as it seems to tail off in the evenings (Seems to be the new craze!)
Without wanting to get you in a mess, so go carefully, but i've never been worried about experimenting. Just dont go too extreme either way and regularly test yourself and you will work your way through it. My body constantly changes and every year or so and i seem to have to change everything completely. Dont be to strict with your injections. If you mess up and are running a bit high just have a little more. Just keep your eye on the clock. My novo rapid usually lasts just after 2 hours. I'll test myself and make any corrections. This is obviously not the ideal way to control your diabetes but when your all over the place needs must! Keep your chin up above all.
 

Sweet3x

Well-Known Member
Messages
166
hey :) sounds like me a while back :)

Firstly, what quick acting are you using? Just out of interest, more than any other reason ;)

In my case, it was most definitely the Lantus that was causing the problems. I was taking too much. The French doctor I am now seeing took me into hospital for a week, and that helped enormously (and here I have to say, the hospital was awful - felt like a third world place compared to the UK places I was used to, but the medical staff were great!). They reduced my Lantus from 28 per day (prescribed by UK docs) to 16. So almost halved it. At just over 9st, they said I was taking far too much, and relying on that to reduce my sugar levels. I only take it once a day, and it seems to work fine for me.
They also looked at the Humalog doses, and altered those drastically.

From what they have told me, I can only give you my impression, and please bear in mind, I'm not a doctor.

If your blood sugar is dropping overnight, it is possible that your daytime dose is still working slightly over night - it is meant to be a '24 hour' insulin after all - just because they suggest splitting it, doesn't mean each dose will only last 12 hours. Have you tried reducing your daytime dosage as well? There is nothing in the rule book that says you can't experiment with your own dose. Doctors should know their stuff, but can sometimes make mistakes ;)

If you do a blood test and you have a high level, try using the guide my doctor gave me. So far, it's not let me down - you may have to experiment a tad. It's basically 1ui Humalog for every 2.3 you want to bring it down - so between 7.7 - 9.9=1ui, 10 - 12.3 = 2ui, 12.4 - 14.7 = 3ui etc etc.

If you take insulin to bring down your high bs, do you just take the amount to bring it down, or do you take that plus the regular amount you need to take with a meal? ie, do you do a single injection to reduce your sugars, or just wait until you are due to eat?

When you have a high blood sugar before you sleep, do you take any quick acting to bring it down? Or is it coming down solely with the Lantus? This does indicate you are taking too much - Lantus shouldn't reduce your sugar levels. It maintains them at a steady level only.

As far as I am aware, raspberries contain so little sugar, you really do not have to count them in your diet. 7 certainly shouldn't affect your control.

And lastly, I'd seriously consider whether you wish to remain under your current doctor. EIther you aren't doing as badly as you think you are, or he is not a good doctor.
 

janabelle

Well-Known Member
Messages
816
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Lack of choice of insulin for newly diagnosed patients.
Dog owners who let their dogs poop in the street-a hazard for most, but worse if you're visually impaired!
Having RP
Hi,
You are describing what myself and a lot of people on Lantus experience. Being tired, feeling 'spaced out'- and inconsistent unpredictable blood sugar control. You blame yourself for eating the wrong things, your menstrual cycle, the weather but there is no pattern:( . For some people Lantus just does not work.
I got off Lantus May 2008, after over 4 years on it, and changed to Hypurin Porcine Isophane (long-acting), and Hypurin Neutral(short-acting) insulin. I now have good BS control and feel 'normal' again. I was so ill while on Lantus, with a host of symptoms that, when I looked back, I realised only came on when I was put on Lantus. Anxiety, severe exhaustion; sometimes sudden in onset, muscle, & joint pains, generally not feeling like myself;like being poisoned, and dreadful blood sugar control. I had days when it would be high all the time, and others when it was dangerously low for no apparent reason. The other days is was just up, down and all over the place; I received no help from my diabetes clinic or GP, and was misdiagnosed with Fibromyalgia.
You are certainly not alone, many people are suffering the same probs on analogue insulins, paricularly Lantus. For further advice and info you may with to contact the IDDT (insulin dependent diabetes trust). They are a great source of info, and are very helpful if you are considering changing insulins, about how to approach your doctor.
Both porcine and bovine insulins types are available in vials or pen-cartridges. For more info you can contact Wockhardt.
Best of luck
Jus
 

kewgirl

Well-Known Member
Messages
678
Type of diabetes
Type 1
Treatment type
Insulin
Hello

I know we have had some correspondence via personal email regarding your current difficulties. Please be reassured you are not alone.

Some users of Lantus are experiencing various symptoms which are having a devastating impact on their general health and life & making blood glucose control very dificult, these include extreme lethargy and tiredness often described as like being a drop zone where you just cannot keep your eyes open and its not related to high or low blood glucose levels, memory loss, significant change in hypo symptoms making it difficult to recognise a hypo, muscle & joint problems including pain, anaemia, mood changes, period problems, depression, a feeling of not being well or not quite right, a feeling of being poisoned, erratic blood glucose levels to name a few of the more commonly reported difficulties.

In addition for some reason and it is not yet understood why, in some individuals with diabetes taking Lantus the Lantus does not act like it should!

After injecting into subcutaneous tissue, Lantus forms a depot of insulin, of which small amounts are meant to slowly move into the bloodstream. I have made this extremely simple as actually its a tad more complicated than that!
Sometimes it appears that Lantus remains in this depot state almost like its taking a sleep,this is why people have reported that it feels on some days as if the Lantus is not working or they haven’t taken any. You inject your next dose of Lantus as per your individual requirements and the Lantus stored appears to wake up and deposits itself in your blood stream and wayhey blood glucose levels plummet into oblivion.
Anecdotal evidence suggests Lantus is causing females more problems than males - this could be in part due to hormonal influences. In addition in some females Lantus is affecting Progesterone Levels and again it is unclear why this should be.

Until you are able to get good basal (background insulin) control it is going to be nigh on impossible to get your short acting dosages correct thus making DAFNE very challenging.

You need to be offered alternative insulin to try. Some diabetics do better with the other long acting analogue Levemir whilst others change to animal insulin and yes contrary to what GP’s and diabetic teams think/say animal insulin’s are still available both Porcine (Pig) & Bovine (Beef).

best wishes

Tracey xx
 

moggy

Member
Messages
14
i have had type 1 diabetes for 12yrs and on llantus 4 times a day 3 fast one and 1 slow before i go to bed i went to see my diabetic nurse last wk she is not nhs and she has advised me to keep taking the same doses and it will take 2 wks before you see the the results. i take 3 mml morning 7 at dinner time and tea time and 20mmls slow before i go to bed, i am all ready seeing results for the last 5 days my bs have been in single numbers and that is the first time in 12yrs, it feels like i have won a gold medal. so like me you need to have a really good diabetic nurse who has your interest at heart and you can talk to and understands your fears and frustration over this terrable condition.do not give up it has taken me this long to find someone who understands me and not every body is texe book we are all different. :D
 

janabelle

Well-Known Member
Messages
816
Dislikes
Lack of choice of insulin for newly diagnosed patients.
Dog owners who let their dogs poop in the street-a hazard for most, but worse if you're visually impaired!
Having RP
Hi Tracey,
thanks for that. I had also read about a high percentage of Lantus sitting at the injection site for up to 36 hours, and it does explain why it didn't work for me. It doesn't however explain how it made me, you and many others so very ill, and have the side-effects you describe. It seems that women report more probs, but that might be because more women come on this forum. I know there's some male forum members who've had similar complaints about Lantus. A lot of young people, who've only ever been on Lantus, may think being ill and tired is just part of being a diabetic. I doubt their doctors will tell them any different!
If I were on Lantus now, the recent studies showing a possible link with cancer would be enough to put me off it, even if I was not suffering probs with it. It's long-term safety is completely unknown and there are plenty of alternative insulins.
Jus
 

doogyrev

Newbie
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3
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diabetes
hi - wow what a lot of response - so nice to know I am not on my own with all of this- I have thought it was me and that Iwas doing something wrong which in turn just made things more difficult. I have spoken to a diabetic nurse who has suggested I try levimir and has put a pen out for me to pick up tomorrow. Because of all my problems I am worried as I understand I will have to probably use more levimir than lantus but too be honest my bm's are so high anyway. From all your comments I am wondering about porcine or bovine insulin this has never been offered as I am sure i was told that lots of people had side effects to it - sounds funny really seeing as what the side effects are for lantus. is that available as a long lasting insulin too? As I am on novorapid does the porcine or bovine short acting all work in same way and surely it must be better to do one at a time. My diabetic nurse told me today to just wait until my pump date comes along then I will be off long lasting insulin anyway - but in the meantime to try levimir.

i wish i had found this site such a long time ago just knowing other people have troubles too helps!! I dont like it that other people have problems but at least I am not an isolated case.

all this help and advice is so gratefully received, many thanks

lol xxx
 

doogyrev

Newbie
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diabetes
farmerfudge said:
Could be that you're run down and have a bug thats giving you insulin resistance?


I actually think I am run down but I think i'm constantly run down!! Probably swine flu knowing my luck!!!
 

dipsticky

Well-Known Member
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171
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Hypocrites and two faced people.
Hey doogyrev. Your luck's changed for the better now you've found this place.

D.
 

janabelle

Well-Known Member
Messages
816
Dislikes
Lack of choice of insulin for newly diagnosed patients.
Dog owners who let their dogs poop in the street-a hazard for most, but worse if you're visually impaired!
Having RP
Hi Doogyrev,
I have not heard of anyone having side effects with animal insulin,only with synthetic. Animal insulin is highly purified and reactions are unheard of these days. The reason people were taken off it was because synthetic 'human nsulins' became availaible and people were pushed on to it by their docs and told it was the best thing since slice bread! Many people had bad reactions to the synthetic insulin. it's the same story these days, unfortunately nowadays very few doctors know or admit the existance of animal insulins, and are reluctant to change patients on to it. I'm going to have to get back to you on why.
Animal insulin in my experienced view as someone who's tried all varieties, gives the best BS control and quality of life. It also contains c-peptide which performs many functions, but, as recent press has shown, perhaps there is more to worry about with analogues than just a lack of c-peptide. It does not surprise me ;any mediaction that can make people so chronically ill in such a short time, must be seriously flawed.
Animal insulin is produced by Wockhardt, and is available in both long and short-acting bovine (beef) and porcine (pork) varieties.
In response to Moggy's comment that we are not text book, we are all different; That is true, and when I was diagnosed there were many different types of insluin available and offered. Why now do doctors only offer 2 similar long-acting analogue insulins for ALL new type-1s????
Good luck with whatever you decide to do.
Jus
 

latecomer

Member
Messages
16
Dislikes
lucozade or anything sweet when having a HYPO.
having type 1 diabetes.
ignorant specialist.
I have been diagnosed type 1 for 2.5 years and the systems that have been described sound so familiar . Tiredness and feeling poisoned I cannot wait to try porcine insulin after reading what you guys say I have great hops to getting my life and energy back also my sugars staple as they have now given me high cholesterol levels. Can a doctor change your Insulin or do you have to wait for the specialist?
 

janabelle

Well-Known Member
Messages
816
Dislikes
Lack of choice of insulin for newly diagnosed patients.
Dog owners who let their dogs poop in the street-a hazard for most, but worse if you're visually impaired!
Having RP
Hi Latecomer
The amount of people reporting these probs and symptoms is astounding, and increasing every week, as this forum shows. Did you report your symptoms and ill health to your doctor, be interested to know what their response was.
You should be able to obtain animal insulin, porcine(pork) or bovine(beef) , from your GP,another forum member did exactly that last week! Both varieties of insulin are available in Long-acting and short-acting; You can contact Wockhardt for more info. Don't be surprised if your doc tries to fob you off with Levemir, another long-acting synthetic analogue. If you want animal insulin stick to your guns; you should have a say in what medication your are on. You can contact the IDDT (insulin dependent diabetes trust) helpline for advice and support.

Feel free to PM me, and best of luck. Hope your health improves soon.
Jus