# hello peeps!!



## shelleyboo (Dec 19, 2011)

hey guys..new to site although been diabetic since 1986.you would think id have got to grips with it by now but my control is terrible..its not that im delibratly not trying to look after myself,i try my hardest but just cant control it which has resulted in me now having quite bad diabetic retinopathy and have frequent bleeds behind the eyes...very scary indeed.will be great to have other people to chat to on here.all the best to you all!!!


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## novorapidboi26 (Dec 19, 2011)

Welcome Shelly.................

Even after many years diabetes can still cause problems..........

What insulin's are you on?

Can you identify what your problem areas may be?


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## Robster65 (Dec 19, 2011)

Hi shellyboo. Welcome 

Hopefully you'll pick up enough info from here to get better control. Lots of us have improved since joining, so it can be done.

Rob


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## Mark T (Dec 19, 2011)

Welcome to the forums Shellyboo 

Another Chelmsford area resident on the forums


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## Northerner (Dec 19, 2011)

Hi Shelleyboo, welcome to the forum  Sorry to hear about the retinopathy  We have quite a few long-term diagnosed people here who can empathise with your situation. Hopefully, also you can pick up some good information by sharing your experiences with others here - everyone is really friendly, so don't be afraid to ask anything! Even though you have been diagnosed a long time you're not expected to know everything, and often getting a fresh perspective on things can really help!

What sort of insulin regime are you on?


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## Steff (Dec 19, 2011)

Hi Shelleyboo and a warm welcome to the forum


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## shelleyboo (Dec 19, 2011)

thanks for the replys...its so nice to chat with other with the same problems...iv not known any other diabetics before...even though i know theres lots of us out there!!!!im on humilin m3...but i seem to have to take hidious amounts of it to take care of any food i eat which then results in a having a huge amount of slow acting insulin working through the night and then i end up hypoing...i asked my gp about taking smaller amounts of faster acting insulin whenever i eat but it seems to fall on deaf ears...they were suposed to send me an apointment to see a diabetic specialist but never heard from then either


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## Northerner (Dec 19, 2011)

You MUST ask for a referral to a diabetes consultant-led clinic Shelleyboo - your GP is probably much more used to dealing with Type 2 diabetics and Type 1 can need a whole lot of different knowledge. If you were a Type 1 without problems then maybe you wouldn't need to see a consultant quite so much, but given that you have bad retinopathy and great difficulty controlling your levels then you need the advice of a diabetes team. Do it tomorrow - book an appointment with your GP and get the ball rolling so you can make 2012 a GOOD year for your diabetes control! 

Have you ever done a carb-counting course or ever been on any different insulins?


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## shelleyboo (Dec 19, 2011)

no,neither.been on the same insulin since i was 7....im 32 now!i know its not working for me,just need the pro's to listen to me!what is the carb counting course...?would be very willing to go


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## shelleyboo (Dec 19, 2011)

Mark T said:


> Welcome to the forums Shellyboo
> 
> Another Chelmsford area resident on the forums



theres a few of us then???? iv never met another diabetic in the 25 years iv been one!


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## Northerner (Dec 19, 2011)

shelleyboo said:


> no,neither.been on the same insulin since i was 7....im 32 now!i know its not working for me,just need the pro's to listen to me!what is the carb counting course...?would be very willing to go



Ooh! You definitely need to see a specialist! It sounds like you have been kept on an old regime that hasn't/doesn't work for you, has left you suffering the effects of poor control and been left to get on with it. Every person with diabetes should get access to an education course so that they can learn how to manage their diabetes well. The main ones are DAFNE and BERTIE, but there may be something different in your area. Your knowledge certainly needs updating. Do you know what your last HbA1c blood test was, and do you test your blood regularly with fingerprick tests? If so, how often a day and what are the numbers like?

I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It will explain everything you need to know about living with Type 1. Well, maybe not _everything_, but for those things it doesn't, you have us!


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## trophywench (Dec 19, 2011)

Hi Shelley

To be absolutely honest, love - I'm appalled both that you are on such an 'old fashioned' insulin in this day and age and that your GP is ignoring your attempts to help yourself!

What Northie has said is correct - an awful lot of GP's know just about diddly about Type 1 because they don't see all that many in comparison to T2's.  (and some of em know about the same about T2 but that's another subject in your case LOL) - you really HAVE got to get to see someone who knows what they are doing very soon.

There seems no reason whatever - especially as you seem willing to take more injections - why you are not on a far more modern pair of insulins - a slow one and a fast one separately which would enable you to match your insulin dosages to a) your background 'basal' requirements(slow acting one) and b) fast acting 'bolus' insulin that can be tailored to exactly what you eat.

This is known as 'basal/bolus' or 'MDI' (multiple daily injections).

All administered by pen - either prefilled ones or a sturdier re-usable pen used with 3ml cartridges.

I'm flipping fuming on your behalf!  {{{Hugs}}}


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## Mark T (Dec 19, 2011)

shelleyboo said:


> theres a few of us then???? iv never met another diabetic in the 25 years iv been one!


Well there is enough in the town that there is a local Diabetes UK group - not that I've actually been to a meeting yet.

There is also another in these forums that I know to be in the town.


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## Abi (Dec 19, 2011)

I'd agree that you absolutely must get a change of insulin regimen. I would suggest that leaving you on a regimen which is not working for this amount of time constitutes negligence, And the premixed insulin I fear it not fit for purpose for most people- far too much insulin overnight and not enough at breakfast and evening meal. If you didn't want basal bolus another option would be twice daily intermediate and fast acting insulin but mixed by yourself in  a syringe so you could alter to proportions of each


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## Robster65 (Dec 19, 2011)

It is unforgiveable for a GP to keep you on humulin when he can see you're having problems. They should have their bums kicked for it.

Agree with all that's been said. You're not alone in being alone, as they say. I spent 32 years without seeking out fellow diabetics and have never looked back since joining the forum. I now know pretty much all there is to know for me to tell the doctors what I want rather than just accept what they tell me.

Be empowered !! 

Rob


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## trophywench (Dec 19, 2011)

http://www.meht.nhs.uk/our-services...torates-medical-specialties/diabetes-service/

There you go!


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## daisymoo84 (Dec 19, 2011)

Welcome to the forums Shelleyboo! Sounds like you're getting some great advice


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## shelleyboo (Dec 19, 2011)

trophywench said:


> Hi Shelley
> 
> To be absolutely honest, love - I'm appalled both that you are on such an 'old fashioned' insulin in this day and age and that your GP is ignoring your attempts to help yourself!
> 
> ...



thankyou for your reply!yes thats the kind of insulin i think i should be on,when i teold the doc im running too high all the time he just said up my m3 dose by a couple of units!which just dosnt work as it then drags my sugar levels down in the night.i will have to get a bit more firm with those doctors!!!i dont want to loose my eyesight!! thanks again.


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## shelleyboo (Dec 19, 2011)

Northerner said:


> Ooh! You definitely need to see a specialist! It sounds like you have been kept on an old regime that hasn't/doesn't work for you, has left you suffering the effects of poor control and been left to get on with it. Every person with diabetes should get access to an education course so that they can learn how to manage their diabetes well. The main ones are DAFNE and BERTIE, but there may be something different in your area. Your knowledge certainly needs updating. Do you know what your last HbA1c blood test was, and do you test your blood regularly with fingerprick tests? If so, how often a day and what are the numbers like?
> 
> I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It will explain everything you need to know about living with Type 1. Well, maybe not _everything_, but for those things it doesn't, you have us!



yes i had my hba1c about a month ago,was 9.something.i do test 3-4 times and they are genrally between 8-17,dont seem to matter how much m3 i take it just dosnt seem to touch me.


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## shelleyboo (Dec 19, 2011)

Robster65 said:


> It is unforgiveable for a GP to keep you on humulin when he can see you're having problems. They should have their bums kicked for it.
> 
> Agree with all that's been said. You're not alone in being alone, as they say. I spent 32 years without seeking out fellow diabetics and have never looked back since joining the forum. I now know pretty much all there is to know for me to tell the doctors what I want rather than just accept what they tell me.
> 
> ...



thanks rob,i shall have to start being a bit more forcefull!!!(or change my doctor!lol!)


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## shelleyboo (Dec 19, 2011)

daisymoo84 said:


> Welcome to the forums Shelleyboo! Sounds like you're getting some great advice



thanks daisymoo!yes i certainly am...shame cant get it from my doctor!


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## shelleyboo (Dec 19, 2011)

trophywench said:


> http://www.meht.nhs.uk/our-services...torates-medical-specialties/diabetes-service/
> 
> There you go!



thankyou


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## Robster65 (Dec 19, 2011)

Go for the change your doctor option !! 

Some GPs are just stuck in a rut and can't adapt, so whatever you do he/she's not going to be of much help to you in the future. I'd find one that is a bit more willing to listen and learn if you have the option.

You could even enquire about a pump if you're feeling brave.

Rob


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## shelleyboo (Dec 19, 2011)

Robster65 said:


> Go for the change your doctor option !!
> 
> Some GPs are just stuck in a rut and can't adapt, so whatever you do he/she's not going to be of much help to you in the future. I'd find one that is a bit more willing to listen and learn if you have the option.
> 
> ...



i keep hearing about these....i havnt got a clue what they are!!!???


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## Northerner (Dec 19, 2011)

shelleyboo said:


> thanks rob,i shall have to start being a bit more forcefull!!!(or change my doctor!lol!)



I found out fairly quickly after diagnosis that I need to be firm with the doctors if I am to get what I need. This hasn't happened to you because you were diagnosed as a child, so you've just stayed in the system and not known that there are options. What you need is for a proper consultant to be dealing with your diabetes and your GP should be the person that deals with other, simpler stuff and issuing your prescriptions. So, as soon as you can, make an appointment and ask to be referred to a consultant-led clinic - it will be the best thing you can do for your health right now 

Sorry if we all seem to be pushing you, I think it is just that we are so shocked that you find yourself in this situation when it really shouldn't have happened! We just want to see thing improving for you!


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## Robster65 (Dec 19, 2011)

In the time honoured tradition...a link !

http://www.diabetes.org.uk/Guide-to-diabetes/Treatments/Insulin/Insulin_pumps/

I didn't know much about them until last year. Now I might actually want one after much deliberation.

Rob


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## shelleyboo (Dec 19, 2011)

Northerner said:


> I found out fairly quickly after diagnosis that I need to be firm with the doctors if I am to get what I need. This hasn't happened to you because you were diagnosed as a child, so you've just stayed in the system and not known that there are options. What you need is for a proper consultant to be dealing with your diabetes and your GP should be the person that deals with other, simpler stuff and issuing your prescriptions. So, as soon as you can, make an appointment and ask to be referred to a consultant-led clinic - it will be the best thing you can do for your health right now
> 
> Sorry if we all seem to be pushing you, I think it is just that we are so shocked that you find yourself in this situation when it really shouldn't have happened! We just want to see thing improving for you!



no i agree..i will book an appointment with my gp tomorrow and ask to be referred.your certainly not bein pushy...youve all been a great help and comfort thankyou


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## shelleyboo (Dec 19, 2011)

Robster65 said:


> In the time honoured tradition...a link !
> 
> http://www.diabetes.org.uk/Guide-to-diabetes/Treatments/Insulin/Insulin_pumps/
> 
> ...



thanks..just had a looky at the site...oooo,not sure i like the sound of that one....but never say never!!


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## HOBIE (Dec 19, 2011)

Hi Shellyboo get on diabetes uk web site & type in your local area & talk to some others at meetings ! Its not perfect but its a good thing to start. Good addvice from northerner. Worked in cheltenham in late 80s in The Sarecens Head pub/hotel. refitted. Liked that area !  Good luck !


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## Marc (Dec 20, 2011)

Hi Shelley

You sound like me I was on human mixtard from when I was 9 diagnosed in 1989 till I was 29/30 when I was moved to Apidra and Lantus with Metformin at each meal. My human mixtard use was pretty huge too 85units in the morning and 65 at dinner. May have a high insulin resistance meaning you have some type 2 characteristics if you are like me which was why I was put on metformin it's all working down to a HbA1c of 6.3 atm. Get a consultant or DSN to get you off Mixed insulin and onto MDI youi will notice the difference. I had retinopathy which was bad but no bleeds but since being on MDI it has got so much better.

Marc


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## shelleyboo (Dec 20, 2011)

Marc said:


> Hi Shelley
> 
> You sound like me I was on human mixtard from when I was 9 diagnosed in 1989 till I was 29/30 when I was moved to Apidra and Lantus with Metformin at each meal. My human mixtard use was pretty huge too 85units in the morning and 65 at dinner. May have a high insulin resistance meaning you have some type 2 characteristics if you are like me which was why I was put on metformin it's all working down to a HbA1c of 6.3 atm. Get a consultant or DSN to get you off Mixed insulin and onto MDI youi will notice the difference. I had retinopathy which was bad but no bleeds but since being on MDI it has got so much better.
> 
> Marc



thankyou marc,yes it does sound like im the only person in the world left on mixed insulin!!yes im easy taking the same amount you were per day and im still running high.i defo need the change over,im glad your retinopathy has got better,it also gives me hope that if(or WHEN i should say)the doctor changes my insulin things will improve for me.


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## Mark T (Dec 20, 2011)

trophywench said:


> http://www.meht.nhs.uk/our-services...torates-medical-specialties/diabetes-service/
> 
> There you go!


They are a good team there - although the parking can be a pain (and expensive).

Hopefully you have a good appointment with your Doctor today and they refer you.


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## shelleyboo (Dec 20, 2011)

Mark T said:


> They are a good team there - although the parking can be a pain (and expensive).
> 
> Hopefully you have a good appointment with your Doctor today and they refer you.



thankyou mark,i hope so too


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## Marc (Dec 20, 2011)

shelleyboo said:


> thankyou marc,yes it does sound like im the only person in the world left on mixed insulin!!yes im easy taking the same amount you were per day and im still running high.i defo need the change over,im glad your retinopathy has got better,it also gives me hope that if(or WHEN i should say)the doctor changes my insulin things will improve for me.



Possibly not the only person for some people it works and IMHO saved me a lot of problems while I was doing the rebelious teenage and twenty years. I think you need to be forceful. I also had massively high blood pressure that lead to me being rushed from Opthalmoligy to A&E then to PCC because they were worried I would have either a stroke or heart attack at any time. Not good when you are a month away from 30  

You need to see a diabetes specialist because I think you may be like me a 'type three' which is a type one who as got some type two characteristics and insulin resistance there are a lot of us around who have to hqave Metformin with our meals as well as insulin. Plus since I have lost weight my ratios have come crashing down. But really ask to be refered to a DSN (Diabetic Specialist Nurse) or Diabetic Consultant. A Type 1 diabetic with complications should not be treated alone by a GP.

Marc


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## slipper (Dec 20, 2011)

Good luck with your doctor Shelley, dont take no for an answer, you deserve the best treatment and support.


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