The Knowledge Board:
Diabetes Type 1
Welcome to our new ResBlog on Insulin and its role in the treatment of diabetes.
The Patients Voice is running a research blog into the impact of using insulin and whether it affects the quality of life of diabetes patients. It would be really great if you could share your story with us and comment on the experiences of others if you can.
In particular we are interested in the following questions:-
- How long have you been using insulin?
- How is your insulin delivered? For example via injection, insulin pump or pen. Have you always used this method? What is your preferred method? Do you use insulin or an insulin analog such as Lispro, Aspart or Glulisine?
- Do you test regularly your blood sugar level?
- What are the main challenges you face being an insulin user?
Do you suffer from any complications? if so, what are they and how has /have these conditions impacted on your diabetes?How do your peer groups / family react to you having diabetes?In the future what kinds of delivery systems would you like to see become available?
These questions are only a guide and so please feel free to bring up any other issues that you consider are relevant to you. Even if you do not have diabetes yourself but are a caregiver of somebody with diabetes we would be very keen to hear your story.
Thanks very much in advance for your help. Remember, a blog is really like having a conversation with lots of people at the same time and so please check back on the blog to see what others have said so that if you would like to add to their thoughts you can.
To take part, all you need to do is scroll down to the comments area, type in a nickname of your choice and then put your comments into the box.We look forward to reading your comments and, of course, thank you very much for your input. Finally can I ask you to bear in mind when you blog that your comments will not just be read by other bloggers and The Patients' Voice team but also the clients for whom we work.
Jojo
I have had Type 1 diabetes for 37 years. I use ordinary disposable syringes and do 4 injections a day. I once tried a pen but the click dosage thing broke early on and because I was on large doses the capsules ran out so quickly. It was very heavy both to use and carry round and the capsule glass was very fragile. All in all I hated it so went back to syringes which I still use. The only thing is that in the last few years the quality of these has declined so that, while I used to use one for about a week, now they only last for about two injections or are already too blunt before I even start! I use two types of insulin, pork short and long acting. I had some nasty experiences with human insulin so gotr taken off it. Now at least I can see hypos coming whereas I couldn't on the human type. That was back in the early eighties though. I don't test my blood sugar regularly but I was diagnosed in 1972 so had to weigh everything and learn how many carbohydrates were in everything. This was an extremely good lesson so I am very aware all the time of what carbs I am consuming just by looking at it (obviously I don't weigh anything anymore though). I have no complications though had a disabled child in 1996.4 but no-one knows whether it was to do with my diabetes or not. I have had two more children since and they are fine as were the pregnancies.
Irene
17 January 2009, 16:32:38
“Hi I have been using insulin since Dec 2003 when I had my pancreas, duodenum abd spleen removed after suffering for many years with chronic pancreatitus. I use 2 types of insulin Levemir which I take every 12hours and Novo-rapid which I take with meals. My sugar levels are variable sometimes high and then going very low. I also suffer from gastroparesis and am called a brittle diabetic. I have also lost all my hypo warnings so can go very low without knowing about it until my blood sugar is about 2 then I start to get a bit shaky. I have to follow a high g.i. diet because of the gastroparesis, which I know is different to most diabetics. One thing I do find irritating is that my local GP surgery disagree with my hospital consultant about my sugar levels so I am alsways being told to try harder to keep them low. The hospital says my sugar should not go below 5 and not above 10 but GP says 4-7 should be the range - anyone else have this problem? My grandsons think I am very brave injecting myself several times a day, they are James 10 and Joshua 6. Altogether I think I cope quite well with my diabetes and it does not stop me from enjoying my life.
Lars
19 January 2009, 18:30:10
“I have been a type 1 diabetic for over 50 years. I take 3 injections a day. I test 2 or 3 times a week unless I am sick, then I test 5 or 6 times a day. My a1c is usually 5.5 to 6.0 It has never been over 7 since the test was invented. It is the best test ever. You can't cheat on it.
When I got diabetese in 1957 I had to sharpen and boil my needles and syringes. Then in mid 60"s they came out with disposable needles, still glass syringes. Later disposable syringes. That was a great event. It went from 1 hour for shots to just a minute.
I am very pro-active in my diabetese care. I visit my doctor every 3 months. I take classes whenever I can. In 1957 my doctor gave me a bottle of u40 insulin, a diet card, and a syringe and needle. He told me to go home and take care of myself. What a joke. I was 10 years old. By 1962 I was in a coma and near death. The next year I went to the first diabetic camp ever held in Utah. That changed my life. I learned to take care of myself and I have been doing a good job ever since.
James Matthew Weber
15 January 2009, 17:06:16
“I am type II who elected to be treated as a type I long ago.
I've been an insulin user for 13 years.
I use a both Humalog and 80/20 nph/R for basal via insulin pens, and if have used them of those 13 years.
Test 3+ times per day
I have lost sensation in my feet, and have no achilles tendon reflexs anylonger, but that is about the extent of complications.
directroy
15 January 2009, 18:35:24
“I Have suffered from diabetes for 13 years maybe more as early symptoms are not easily recognised,this has caused me great and persistent pain controlled only by morphine slow release capsules, I have neuropathy as a direct result and now have no feeling in feet and legs and feet except painful spasms,I had a heart attack and a minor stroke 2 years ago, I tets my blood 3 times aday and inject using pens and a slow acting insulin called glargine and a quick acting insulin call novarapid. I would point out that up to the time of my diagnosis I was a non smoker and windsurfed most weeks, cycled, and regular swimming I was not overweight in fact my doctor didnt want to consider diabetes at first as I was not a likely candidate . so there you have it a horrendous disease which affects family and friends as no one wants hear how much you suffer for very long and I have learned to hide my condition to keep my family in touch with me
Alan Mackenzie
15 January 2009, 19:52:37
“I'm a T1, I've been on insulin for 43 years. Spent about 20 of those years on gentically engineered (so-called "human") insulin. Wish I hadn't, it wasn't good stuff. Went back to natural insulin about 6 years ago.
How about the analogs? Well, you take a completely artificial protein which works at the cell level, run a 2 year trial on it, then pronounce it "safe", with the assurance that OF COURSE it won't cause cancer after 20 years of use, everybody believes you. Hmm. When you play Russian roulette, at least you know there's only one bullet in the gun.
So, no, I won't touch the analogs unless the alternative is death. However, it's becoming ever more difficult to obtain wholesome insulin, due to the monopolies of the big makers.
Maureen H
15 January 2009, 20:48:13
“I have been insulin dependent for nearly 40 years now (since Nov 1969)and have had my ups and downs, but I always try to look on the bright side.
Abour 2 years ago I went on a DAPHNE course for a week and learnt a lot. I now have 3 injections of short acting insulin (actrapid) a day and 1 injection of long acting (levemir) a day and have to test 4 times a day but I can eat what I want, when I want as long as I give myself the correct insulin to cover this. I am on a ratio on my insulin but always have the same long acting each day. If I do not want to have a meal I can miss my insulin out. Long acting should be given before bedtime but because I always went low in the night it was tried at lunchtime and now I take it at breakfast, which is the only way it works on me. I do try to exercise on a regular basis but at the age of 64 this is not always happening, and I go swimming at least twice a week.
I have had problems over the years as I am epileptic, have high blood pressure, high cholesterol and had breast cancer 5 years ago, but I always try to look on the bright side, I am still alive and reasonably healthy.
I hope this helps other people who have problems to look at it from the bright side.
Nicola Brain
15 January 2009, 22:14:58
“I have bene a type 1 insulin dependant for 19 years now, I have 3 injections a day of novorapid and 1 of lantus which I take at bed time. Life isn't always easy, I had problems getting back to grips with my sugar levels after having my daughter but now I seem to be better again. While having my daughter things went very well, I try to exercise regularly and I'm sure that helps.
I would be happy to chat to anyone
DianeJ
16 January 2009, 00:20:38
“I have had Type 1 diabetes for 38 years and inject 5 times daily (long-acting Levemir split into two doses and 3 of short-acting Novorapid before meals).I have diabetic retinopathy for which I have extensive laser surgry and a vitrectomy and now have cataracts. I also have diabetic neuropathy which makes my hands and feet go numb and also causes severe shooting pains in my legs. High blood pressure, high cholesterol and and an underactive thyroid are some of my other problems.
I test 5 times per day and as a result my fingetips are like leather, and use a pen to deliver the insulin. The diabetic retinopathy means I can no longer drive and have trouble reading and pursuing my hobbiers of photography and painting, which leaves me feeling very frustrated and depressed. After 20 years of marriage my hujsband still does not understand anything about diabetes and regularly sabotages my diet with unsuitable food. He would not know what to do if I went into a coma so I have to keep sugary items all over the house in case of a sudden hypo. I often ask what is the point of living like this and worry a great deal about what the future holds.
I lost my job through diabetes - they decided I was too ill to work and, it being a hospital, I couldn't very well argue with that. However, it would have been difficult to carry on, as I often feel very fatigued and it takes me at least an hour every morning to do all my tests and take all my medication. I have now got my insulin/glucose ratio under control but now I am using all the glucose efficiently I am putting on weight and being told by my doctor to lose some. Not so easy!
carr
16 January 2009, 10:46:55
“i am 50
had gestatinal diabetes
15 years ago and still on humlog
i have brilliant nurse at qa portsmouth
managed to go from very high dose to a smaller dose and got rid of humanlin long acting so in effect take
60 units less of insulin now feel ok hba1c remained unchange 6.4
still cannot eat sweet things even after evening meal
blod test 4/ 5 a day because off not knowing if high or low this is because i keep such tight controll but i want a good quality of life what i eat matters how ifeel matter so by being careful and being educated is the most important part of my care
Peter 16 January 2009, 12:49:43
“Type 2 for past 15 years - insulin for past 3 years ( Levermir and Novorapid ) - also SR Metfomin
Peter:
16 January 2009, 13:03:43
“I am appalled by two things
1. the cost of and profits made by companies for excessive charges made for test strips
2. Cost and waste involved in excessive packaging - eg Metformin Glocophage 56 tablets comes in box and 4 x 14 pills reasonably packaged, but Metformin Bolamyn SR ( 56 ) comes in 2 ( instead of 1 ) boxes, and each strip has only 7 pills.
Louise Green
16 January 2009, 13:08:31
“I have been Type 1 for almost 19 years. I take 5 injections a day, 2 lond acting (morning and night) and 3 of actrapid before meals. I have high blood pressure which is being controlled by drugs and I did have high cholesterol but thank goodness for statins. I also take Metformin which is a drug used to control Type 2 but my consultant thought it would work towards better control which has been successful. I have neuropathy and have been prescribed anti depressants for this which means my feet are very happy. The only time I found it very difficult being diabetic was when I had cancer 12 years ago and was having chemotherapy. This made me feel very sick but I still had to make sure I was eating enough carbohydrates to keep my diabetes under control, which made me feel sicker! I drive and have a normal life as much as possible. My family know what signs to look for if I start going hypo and are very good at feeding me glucose sweets.
Ian McClelland
16 January 2009, 14:04:14
“I have been Insulin Dependant since i was diagnosed 20 years ago.
I now have nova rapid for my fast acting insulin Three times daily
I also use Lanctus (Glargine ) as my nightime Insulin
I check my sugar levels every day and vary the time i do.
I try very hard to control my sugar levels and it is hard i eat the correct food but my sugar levels are always high.
I have just Recovered from having my Gall bladder removed and came off Persantin Retard which i was put on after my Stroke I have had no problems since with my gall bladder and i have healed well.
I did not realise until i came off persantin retard just how ill it was making me i had no energy was always tired and no interest in any thing sexual.
J-bug
16 January 2009, 15:32:32
“I am type LADA - type 1, diagnosed as an adult (age 50!). I began insulin treatment with insulin pens of lantus and novolog (long & rapid-acting insulin analogs). Prescribing doc really discouraged syringes. After a year I went on the pump, using all rapid-acting. The pump was/is a godsend, because with as insulin sensitive as I am, I could not dose in the appropriately small increments with the pens. I either had to eat more than I wanted to match the smallest dose, or I wouldn't eat at all. I usually skipped the eating and lost a fair amount of weight - weight I did not need to lose. After a year on the pump I gained about 1/2 of it back and levelled off. I test at least 5 times a day, usually more like 8-10. One of the hardest things is that so many things affect your levels - stress, illness, etc. - and fat and protien delay or lengthen out the rise so that even with carb counting and more precise dosing its often a crap-shoot as to whether the dose is really as precise as you think. And those things affect each person differently, so its hard to come up with a formula. Maybe if we had an analog with the by-products of insulin production (c-peptides, etc.) that would help?
Then, as someone mentioned above, there is the cost. Test strips at $1 apiece when they give the meter away for free? Come on! And even if you have a meter by the same manufacturer, you may not be able to use the same type of strips. Lets get some consistency here! And all the drugs they push at you - both OTC and costly prescriptions: aspirin, statins, blood pressure meds, etc., etc. when your readings are actually well within the normal range!
so there you have my ranting for now!
Louise Green
17 January 2009, 13:31:55
“Hi J-bug
Don't you get your prescriptions free? your supposed to if you have diabetes. It's really good because if there's anything else I want, not just the strips but high blood pressure pills, statins, etc are all free too
Like this comment? [yes] [no] (Score: 0 by 0)
Community assigned karma score: 0 by 0
Mark as offensive
reply
moderate
J-bug
17 January 2009, 18:26:02
“From reading these posts, it sounds as if most of you are in UK. Im in the US, so if you don't have private insurance or medicare, you pay for it yourself. I do have insurance so only pay a percentage of the cost but I know people who do have to pay out of pocket.
Graham26
17 January 2009, 13:46:37
“I reckon test-meters are a bit like computer printers.
It costs more for ink cartridges than for the machine.
Anonymous17 January 2009, 14:23:04
“Intersting
How much do they normally cost you?
Like this comment? [yes] [no] (Score: 0 by 0)
Graham26
18 January 2009, 14:50:47
“HP numbers 21 and 22 are £12 and £14 each, refills are cheaper
Graham
arlene says:
16 January 2009, 18:00:39
“Hi I have had type 1 diabetes for 10 years.
I did Dafne 4 years ago .
I use an insulin pump with analogue insulin novorapid.
My control is great now but had difficulties pre pump.
No complications.
Richard
16 January 2009, 18:43:53
“I have been using Insulin since being diagnosed as diabetic in 1996. I use three types of Insulin these are Novomix 30 x 3 daily, Insulatard x 1 daily and for emergency use should I be Hyper Humilin S. My delivery system is syringe, as I have a problem with my right hand and find using a pen is painful for me. My control is quite good, inspite of having a Hypo yesterday.
There is 1 complication setting in in my right foot, this is Nueropathy on the little toe side to the heel.
Graham26
17 January 2009, 13:43:45
“I have been treated for typeII for 10 years, first with diet, then metformin and last five years insulin and metformin.
(plus blood pressure & cholesterol meds) I use Nove Mixtard 30 before breakfast and dinner. I had three laser of laser treatment on my left eye on diagnosis but touch wood, have had reasonable sugar control and no problems since. I use 180 units a day and find my BD syringes last me about five days (10 uses)
Brenda Sherratt
18 January 2009, 12:03:58
“I was diagnosed with type 1 diabetes 5 years ago in February. The doctor put it down to my dad dying suddenly a few months beforehand. I had no normal systems except the weight loss which at first the professionals thought was due to me not eating due to my recent loss. For the first 6 months I was on tablets and then went on to Novomix 30 injection pump. I take my blood readings 3 times a day and they are at present very stable. I inject twice a day 5 units at AM and 6 units at PM however, I do adjust the evening dose if going out for a meal etc.
Louise Green
28 January 2009, 17:01:34
“Hi Brenda
Curiously enough, I was diagnosed not long after my father died suddenly bu nobody ever made a connection. all they wanted to know was why he had died
Brenda Sherratt:
29 January 2009, 08:37:36
“Hi Louise
I know quite a few people who in their later lives have been diagnosed with Type 1 diabetes due to them having serious illnesses. Don't know if the treatment they were receiving had anything to do with it or the shock of the illness itself, their doctors have never been able to explain it!
Pattidevans
18 January 2009, 16:53:18
“I was diagnosed diabetic in May 2003. Because of my age 57, I was initially diagnosed as T2, but tablets did not work and I had classic T1 signs (rapid weight loss, dire thirst, numb toes, ketones) so after trying me on gliclazide for 2 weeks I was eventually taken off oral meds and put on Novomix30. I didn't know there was any choice. I was given no education other than being handed a few leaflets and being told to eat "starchy carbs with every meal". In my opinion Novomix is the insulin from hell. I suffered multiple hypos and over fed them with the result that I had wildly swinging BGs. Due to the dietary advice I had received and feeding the hypos I gained 3 stone in 9 months and had an Hba1c of 7.9 - and neuropathy in my feet.
I decided enough was enough and started to research my condition. I came across a newsgroup and met up with some very knowledgeable diabetics who put me straight. I asked to change my insulin regime and within 3 months of moving onto Lantus and Novorapid (pre filled pens) and cutting down on the starchy carbs, together with testing according to "Jennifer's advice"
http://www.diabetes-support.org.uk/joomla/jennifers-advice
I had an Hba1c of 5.4. I also had pains in the previously numb toes, because the nerves were coming back to life. I have not had an Hba1c higher than 5.7 since (over 5 years) and intend to die with my feet on and all organs working! I am now on Levemir and Novorapid and gradually losing the weight I put on.
I test when I wake, before each meal and if I am trying out a new food I test at 1 and 2 hours after the meal. I also test before bed, before driving and if I suspect I may have a hypo. I use an Optium Xceed meter and also have ketone strips for it.Along the way, and because of lack of education in my area I have taken an online carb counting course which is free and can be found at
http://213.105.192.75/bdec2/index.shtml
An excellent tool. In January 2008 in partnership with another T1 (yes, I finally got diagnosed as LADA), I opened a forum for diabetics. We recruited the people we knew from around the web who were knowledgeable about diabetes and just over a year later we have 421 members and over 20,000 messages. The very best part of this is to see people come in confused, get the message, and turn their control around, because knowledge is the key to control. Frankly some of the posts above sadden me because it's so apparent that people have complications which could have been avoided by a little education and better control.
Pattidevans
18 January 2009, 17:03:12
“PS my feet have now completely recovered sensation and I am no longer troubled with any form of neuropathy. Gaining control can reverse this complication!
Like this comment? [yes] [no] (Score: 0 by 0)
Louise Green
28 January 2009, 17:07:04
“Hi Patti
I had neuropathy about 18 months ago but having got my control down to an average of 5 it seemd to disappear. Although saying that, recently it has started to come back. I am due to see my consultant tomorrow so we'll see what the average is this time. I also had to have a blood pressure cuff on for 24 hours a couple of months ago as she seemed to think my blood pressure was high even although I take tablets to control it, she thinks I may have to take an additional tablet.
Pattidevans
28 January 2009, 17:52:48
“Louise
I presume when you say your "average" you mean your Hba1c that you have done every 3 or 6 months rather than the average on your meter. Do you not test yourself regularly to see what your own BGs are on a daily basis? Well, more than daily really, I test between 4 and 7 times per day. If your Hba1c has gone up perhaps we could help you regain better control. http://www.diabetes-support.org.uk there are some very friendly people in the forum who are very knowledgeable too.
Like this comment? [yes] [no] (Score: 0 by 0)
Louise Green
29 January 2009, 11:48:02
“Of course I test several times a day. I said average because I couldn't remember what Hba1c was called. My consultant said there are very few people who have a Hba1c of 5 after having diabetes for years. She seemed especially pleased.
Anonymous
18 January 2009, 20:10:06
“Type 1 for 44 years no complications.
using Bovine neutral in a Cozmo 1800 pump self funding due to the outstandingly lazey/ignorant Consultants in the SW who all maintain you can not use animal insulin's in a pump thus no funding from the NHS but it seems the insulin works just fine if I self fund. No joking this is what one consultant wrote in a letter to my GP.
I used to use bovine neutral and Bovine Isophane using MDI for about 30 years.Switched to a pump due to absorption problems. I would not touch the GM/synthetic/analogues with a barge pole.
I have never had DKA or been admitted to hospital due to diabetes in the 44 years as a type 1.
G8
19 January 2009, 09:03:08
“I have just been to my GP and he tells me that a 10 year study of Diabetic Men aged 50+ has found some rather concerning results. The Group had all Members taking medication for Blood Pressure and Cholestrol and a few with Insulin as well. After 10 years all have been found to be equal in condition, except the Insulin members are fatter. I know Insulin piles on weight, I put on 2 Stone in rapid order. My GP says he is waiting to see what now happens and he said don't worry now about NOT taking my Insluin. Has anyone else been told this???
Pattidevans
22 January 2009, 19:03:48
“Insulin is a growth hormone ergo the more you take the more weight you are inclined to put on. Having said this, Levemir claims to be the insulin which does not increase your weight. I can neither prove nor disprove this claim. There is another aspect to the equation, unless insulin doses are calculated correctly, then it's often the case that the insulin has to be "fed" by snacking. Until all diabetics on insulin have some education in carbohydrate counting this is likely to be the case. Personally I find keeping to a low carb diet ensures dosage is optimal with less room for miscalculation and subsequent need to "feed the insulin" to avoid hypoglycaemia. For more information please visit www.diabetes-support.org.uk
FatLes
25 January 2009, 13:33:27
“Hi, I'm 50 and was disgnosed with Type 2 back in 1997. I've been on insulin for the last 5 years or so. I inject twice daily using a NovoMix 30 pen. Don't mind the injections, though some other people do - but I ignore them. Find that the finger-pick for the blood test usually hurts more than the injection itself. Good support from local GP and PCT up here in the NW. I don't let insulin rule my life and it has never stopped me from doing anything. My control is good, but I think it could be even better though I rarely have a hypo. Put on some weight due to the insulin, but not too much - currently discussing a gastric band whicj hopefully will help me lose a lot a weight and maybe even remove the need for insulin.
Louise Green
28 January 2009, 17:12:35
“Hi Les
I found that I have put loads of weight on over the past years but I don't know how to go about dieting as most diets tell you to stop eating bread, rice etc. One of the doctors I discussed this with told me to join a gym. Have you ever seen a fat person in a gym? It would be far too embarrassing not to mention that I run my own business and work seven days a week most weeks, so have very little time to do anything but work eat and sleep and then get up and do it all again. So the answer seems to be just buy bigger clothes each year.
Pattidevans
28 January 2009, 17:58:33
“I gather you're following the "starchy carbs with every meal" NHS advice. Most of the clued up diabetics with good control who I know find that that diet is disastrous for both their weight and their BG control. Carbohydrates are as bad for diabetics as sugar! Lowering your carbohydrate intake will not only help your control but allow you to lose weight as well. Simply reduce your insulin to avoid hypo attacks.
Please check out http://www.diabetes-support.org.uk and visit the forum. Lots of friendly people who can help you there.
Ivan
Hello again
here goe's
Diabetes
I do what I should
I know it's not good
Too much sugar in my blood
Hyper or Hypo
Which way will I go?
No way to know
If I show a bit less
It's so you'll never guess
How it's made me a mess
For all I've been shown
The way that I've grown
My body's not my own
Sometimes in the night
I know it's not right
My heart feels so tight
The advice sounds quite real
I listen and I deal
Doesn't explain how I feel
It's made me a bit stealthy
Tho' I'd like to be wealthy
I'd settle for healthy
The Patients Voice The Patients Voice is one of the many patient-focused services from Healthcare Landscape. Healthcare Landscape is a medical and healthcare research company, which conducts interviews with all the different kinds of people involved in the healthcare process. They range from patients and their carers, to medical professionals like nurses, pharmacists, physicians and academics. Our mission is to find out what they think and what their experiences have been.
We can interview over the web, at home or at a special research facility; depending on what type of study it is, the choice is often yours. We also run patient diaries and blogs, so you can air your views as honestly and informally as you like. We want to ensure that you have access to the best research experience, and in turn, our clients will learn from your story. Our clients are quite diverse. They range from pharmaceutical or medical device companies, to charities and government bodies. The Patients Voice is open to anyone in the world who wants to give an opinion and would like to try to make a difference. This forum gives you power by allowing you to get YOUR VOICE HEARD.
You should always consult your physician regarding any medical issues. While we attempt to make sure the information on this site is as accurate as possible consulting a medical professional is always to be advised.
Membership of the Patients Voice is Free and open to anyone.
To become a member of the Patients Voice please enter your email below and click Submit.
Bookmark with: