Insulin change

avi

Well-Known Member
Messages
58
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people who act like they are the diabetic police!!!
Hi
After a couple of months fighting for apointments with the DN, and a round trip of 120 miles to see her for a CGM for three days to try and see what was going on with my fluctuating BG, which didn't work as they gave me a faulty machine, I think I may have convinced her it is my Lantus that is the problem and after an appointment today at the local hospital she was making noises about changing my insulin. I did mention animal insulin which she said was very old fashioned but then added whatever works though. However, I have to wait for another two months to see her in which time she is trying to arrange an appointment for me to see my consultant, supposed to see her every six months but lucky if I see her once a year, saw a locum last time, and the dietician. In the meantime I have to struggle on. I suppose its progress even if it is slow.
 

hanadr

Expert
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8,157
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soaps on telly and people talking about the characters as if they were real.
That's how it goes with some parts of the NHS.
 

kewgirl

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

Sorry to hear you are having a struggle.

Yeah Gods – :evil: not only have you had to endure months of fighting to gain an appointment with the DN (can I assume that is diabetes nurse?), endure a round trip of 120 miles then he/she cannot actually arrange an immediate insulin change you have to wait to see the consultant for this?!

It is not acceptable that you have to struggle on. Do you have a supportive GP who would prescribe animal insulin for you?

Your DN clearly needs some additional knowledge before making such a wide sweeping statement, as “animal insulin is old fashioned”!

The latest figures I have are that there is approximately 237,000 Type 1 Diabetics in the UK of which approximately 30,000 use animal insulin. I am proud to be one of those 30,000 & it was porcine animal insulin that kept me alive in 1970. I don’t care if I am considered old fashioned! For me porcine animal insulin works!

My only regret with changing back to porcine animal insulin from the analogues was that I didn’t make the connection with the Lantus & my deteriorating health earlier.

I have many diabetes emailing me reciting incredulous responses from diabetes team such as “we don’t know how to mange diabetics on animal insulin”!!
I suggest that Diabetes Teams need to learn to support diabetics using animal insulin, human synthetic insulin & GM synthetic analogues.
Also there is plenty of us old f***s out here who would be more than willing & able to impart our knowledge & experiences of using animal insulin with Diabetes Health Professionals.

Avi if you need any additional support with the actual change to animal insulin please do not hesitate to get in touch. Additionally the IDDT (Insulin Dependent Diabetes Trust) are also extremely knowledgeable re animal insulin’s.

Wishing you all the best.

Txx
 

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 Avi
Sorry you're having to wait so long to get things sorted, but stick to your guns and I'm sure you'll be fine.
If you want animal insulin, there is no reason you shouldn't have it, despite your doc thinking it's 'old fashioned'! The medical profession need to recognise that choice is important for us, and just because one insulin works for one patient it may not be suitable for another.

One reason medics may think animal insulin is 'old fashioned' is because the perception may be that it is not as effective. This is far from true. In the 80s when synthetic 'human' insulin was introduced it was also the time when blood glucose testing became available. Before that people relied on not-so-accurate urine testing. Many patients were forced on to synthetic insulins at that time being told it was the best thing since sliced bread! Exactly the same thing is happening now with newer 'analogue' insulins, but with far more aggression.

Results of clinical trials on Lantus were only based on comparing HBA1c results with those of patients taking synthetic 'human' insulins. In my experience, these tests are not worth much,if they do not take fluctuations into consideration. While I was unfortunate enough to be on Lantus, my daily BG levels fluctuated between 2- 15 (sometimes higher), yet when I complained to my clinic, they reassured me that my HBA1c was within normal levels,below 7 most of the time. Justification for not changing my insulin, but no excuse, expecially as I continually reported the problems I was having.

I have recently found out that the problems I was having with my BG control and the debilitating side-effects I suffered while on Lantus, were not mentioned anywhere in my notes. I have since made a formal complaint to the hospital and await their response.

Initial clinical trials of Lantus were only of a very short duration before it was lisenced. In my opinion it is quite concievable that it is in the interest of the insulin manufacturers for patients to remain on these insulins for the benefit of retrospective studies to prove it's worth. However if innacurate notes are being recorded by medical professionals, for whatever reason, as my case, this will severely distort the outcome of these studies.

Anyway Avi, best of luck to you.

Jus
 

avi

Well-Known Member
Messages
58
Dislikes
people who act like they are the diabetic police!!!
Hi

Thanks both, its all a bit "pants" as my thirteen year old daughter would say. My health at the moment is quite bad, but I also got told today I might have to accept the fact that I'm unique, couldn't believe that one! The local GP was the initial person who did suggest that the problem might lie with the Lantus, another visit might be in the offing as I know he doesn't like the consultant that I'm with and did suggest referring me to another, but there again god knows how long I might have to wait for an appointment with him. When I went for the CGM I was changed from the lantus autopen 24 to the solostar one and when put on that I was really ill for about a week, didn't think that should have made a difference though, surely its the same lantus?

Avril
 

iHs

Well-Known Member
Messages
4,595
kewgirl said:
Hi Avi


I have many diabetes emailing me reciting incredulous responses from diabetes team such as “we don’t know how to mange diabetics on animal insulin”!!
I suggest that Diabetes Teams need to learn to support diabetics using animal insulin, human synthetic insulin & GM synthetic analogues.
Also there is plenty of us old f***s out here who would be more than willing & able to impart our knowledge & experiences of using animal insulin with Diabetes Health Professionals.

Txx

Sorry, I'm not trying to be sarcastic, but what special skill is needed by diabetes teams to put people on animal insulin? I've never heard such cr.p :lol: Animal insulin is not really any different to using analogue insulin. The only thing is that its onset might not be quite so fast so for some meals, the injection should be done about 15-20 mins before eating but that's about it.

Also there is a huge mention about pork insulin, but what about bovine?

Exactly how much does animal insulin cost compared to analogue insulins? Also how much c-peptide is there in it along with m cresol etc?
 

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
Avi,
Your story highlights what Lantus is capable of, and medics' reluctance to take patients off it. I've always thought as Lantus made me so chronically ill in such a short time, it must be seriously flawed. I've since found out I'm not alone, there's plenty of us Avi! Get off Lantus, you won't regret it, and I have no doubts that you will feel well again.
I hope you get it sorted soon, be pushy :D
Jus
 

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
I'm with Kewgirl iHS,
Diabetes teams use the excuse that they have no experience of treating patients with animal insulin as a reason not to prescribe it. It's astounding that doctors are quite willing to push people onto medication where the long term safety is completely unknown rather than consider a tried, tested and safe one!
When I was changed to pork insulin last year, at my request, the doctor did not have a clue about dosage. My doses are very different to what I took on Lantus. I presume doses for beef insulin would also vary.

While on Lantus I was a spaced out,exhausted and constantly ill person with lousy diabetes control and I am no longer in that state since coming off it-many people report similar experiences on synthetic insulins, but particularly analogues. My ill state was not caused by anything else,as my health deteriorated within months of going on Lantus. In my experience there is a HUGE difference between animal insulin and analogue wannabe insulins!

While the basic knowledge required for managing patients on these insulins may be similar, the patient's response to either can be completely different. Neither analogue 'insulins',nor synthetic 'human' insulins are actually insulin,although I'm sure some people were misled into thinking human insulin was extracted from humans!

Kewgirl makes a good and valid point -and I believe that diabetes specialists and cinics need re-educating.
It's all welll and good to suggest changing timing of analogues, splitting doses, or changing diet to counteract problem BG control for patients having problems. Doctors also need to recognise that analogue insulins do not work for all patients and start to address it in the same way as if a patient were not responding well to any medication.
There are alternatives, so there is no excuse!
Jus
 

gbtyke

Well-Known Member
Messages
97
Yes don't these people just think that they are gods? I rang the specialist diabetic team 8 weeks ago to ask to be changed from mixed to basal / bolus and was told "Oh that's not urgent we will send an appoinment through". Just got it this week for a further 4 weeks hence. 3 months for an appointment. In the meantime I have booked in to see my GP tonight to see if he will change it and work with me instead of the specialist nurses. So will see how that goes.
 

kewgirl

Well-Known Member
Messages
678
Type of diabetes
Type 1
Treatment type
Insulin
iHS it may be incredulous but that is the response from some & I stress some diabetes teams. In addition some diabetics are being denied access to a DAFNE course because they are not using analogues. :shock:

There is a general reluctance to suggest & offer other types of insulin – be it animal and/or human once an individual is on an analogue. The analogues were sold as being the greatest thing since sliced bread to many users & I don’t deny that for many diabetics using for example Lantus there are no issues with this analogue – it provides good glycaemic control and they are not experiencing side effects.

However a percentage of diabetics using Lantus have significant glycaemic control issues and/or debilitating side effects, which are not being acknowledged either by health professionals or the DOH.
Whether the side effects are due to the “syntheticness" of the analogue, or the composition or something that some bodies react to - who knows?

There are also many complex co-existing factors regarding why diabetics are placed on certain types of insulin & these include cost & special offers from drug companies if PCT’s use a certain product, research monies & grants to entice medical professionals to use a new product, drug companies providing the salary for specialist nursing posts etc – its not a straight forward issue.

My biggest concern remains that individuals who are experiencing difficulties with a particular type of insulin are not given the choice & opportunity to try another type of insulin & this leads to deteriorating health.

To answer cost query:

For the purpose of cost listed is an example of an animal insulin, human synthetic insulin & an analogue – short acting & long acting

The cost illustrated is for 1 box of 5 x 3ml cartridges (15mls of insulin).

Short acting
Porcine Animal Insulin Neutral - £25.20
Bovine Animal Insulin Neutral - £27.72
Humulin S Human Insulin - £28.12
Novorapid Analogue - £29.43

Long acting
Porcine Animal Insulin Isophane - £25.20
Bovine Animal Insulin Isophane - £27.72
Insulatard Human Insulin - £20.40
Lantus Analogue - £39.00

I think the reason why Porcine is mentioned is because we happen to be on Porcine Insulin – my understanding is that fewer diabetics in the UK are actually treated with Bovine Animal Insulin than Porcine.
The amino acid structure of Porcine Insulin is closer to human insulin (not the synthetic human insulin) but the stuff our bodies should be making than Bovine Animal Insulin.
But again it’s all about choice and what works best for each individual.

As regards the exact amount of c-peptide, m cresol, glycagon etc in the animal insulin’s I’m afraid I am not boffiney enough :lol: to have that knowledge.

Avril – not sure how long you have been using Lantus but anecdotal evidence from both the USA, Canada & the UK would indicate that individuals using Lantus can be well on it for an “average” of between 13 – 18 months before either glycaemic control becomes difficult and/or side effects start. The swap to the Solostar may just be incidental to the problems you are experiencing with Lantus in general.

Best wishes

Txx
.
 

x Carol x

Well-Known Member
Messages
70
Type of diabetes
Type 1
Treatment type
Insulin
I've been having trouble for the last few months with bg control and it seems like I have insulin resistance. I went on a low carb diet in April which worked great but it doesn't seem to work anymore. So I cut out the carbs even more and even on a virtually zero carb diet, I'm not getting the readings I would expect and also am injecting more insulin than I used to when I ate more carbs. After reading this thread, I'm wondering if it's to do with the insulin I'm on. I'm on novomix 30 which I've been on for nearly two years. Does anyone have any thoughts on this?
 

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 Carol,
following my experience on synthetic insulin particularly Lantus, whenever I read at posting like yours I get the same instiinct; which is to say if you have any concern or suspicion that your synthetic insulin is causing you bother, then the only option is to try something else. The only problem with that is you will undoubtably be offered another anlaogue synthetic insulin. It is very rare for doctors to offer animal insulin even when a patient suggests it, and it's an outrage. However there is no justification, even financial,for a doctor to refuse it.
You should contact the IDDT for further advice, number is on their website.
More and more people are reporting probs with analogues,I wonder how many end up presumed insulin resistant, because their insulin isn't working, and end up on Metformin or something similar.
Trust your instricts Carol, I wish I'd had even an inkling 4 years ago. Unfortunately I was brainwashed into thinking analogues were the beez kneez, but you live and you learn.
Jus
 

x Carol x

Well-Known Member
Messages
70
Type of diabetes
Type 1
Treatment type
Insulin
Thanks for the reply. I assumed if I wanted to change my insulin I would have to see the diab specialist nurse. Is it just the case that I see my Doctor? If I'm changing to four injections a day, I suppose I should see the diab nurse so she can explain what to do but otherwise can you just see your doctor?

I've just injected some insulin but not had my tea yet so I'm just waiting to see how quickly (if at all) it comes down.

If the diab nurse won't put me on animal insulin, at least I know not to go on lantus. If I go on say Levemir and I don't get on with it, I could then ask my doctor (who's okay actually) to swap me to animal insulin.
 

kewgirl

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

Sorry to hear you are having difficulties with blood glucose levels. :(

One of the difficulties with Novomix is that you have less control over altering the dosages because both the quick acting component and the longer acting component of the insulin is mixed together hence you cannot just alter one part of it. Apologies as you probably already know all that.

A short acting pre meals with basal (background) insulin regime will probably give you more flexibility and thus improve your glycaemic control.

With regard to who changes your insulin be it a GP, diabetic nurse specialist or hospital consultant really doesn’t matter because it is more about what choice of insulin you have & understanding the profile of the particular insulin. Keep testing BG levels frequently and as a very general rule of thumb insulin changes take on average approximately 3 months to be fine tuned and tweaked to suit your particular requirements.

Try Levemir and if that is not successful there is animal insulin’s and human synthetic insulin’s also available to try.

There is a strange phenomenon that happens in that we never consider that the insulin we are on may not be necessarily the correct one for us and I think that possibly over a lifetime some diabetics will need to change the type of insulin they take.

Hope you manage to get BGs sorted.

Best wishes

Txx