Hello Sianee,
I don't often post on this site, but find it very interesting to read the postings in general, and in particular those from young Type 1 diabetics asking for help .. just like you. As an aside I used to live in Plympton for 18 years, before moving back to Hampshire, so I attended the diabetes clinic at Derriford Hospital and worked at the silicon chip plant at Roborough, which you may be aware of.
I have spent quite some time reading back through all the 25 threads that you have started, commencing with "please help" on 23-Jan-2010.
http://www.diabetessupport.co.uk/boards/showthread.php?t=5786. And since then you have started many similar threads asking for advice and help on a variety of diabetes issues .. and lots of helpful advise has been offered. But I have to say that there are quite a few "mixed messages" coming across regarding advice on learning courses, like DAFNE, and in particular the qualifying conditions for getting a pump.
I have been a T1 for 43 years now, and have managed to control my blood sugars levels reasonably well and so far have no complications. This was not due to "plain good luck" but down to me deciding from the outset that diabetes is clearly a condition that has to be self-managed, rather than blaming the diabetes consultants and DSNs for not providing the "proper and adequate support that you need" (which has often been mentioned in several posts by other members in their advice to you ... see below).
Since I was diagnosed I have lived in three different locations in the UK, and so had to attend three different diabetes clinics for my annual reviews. And I have to say that, aprt from a couple of visits, I never had anything but good support and advice from them all. But I believe that this was because they could see from my HbA1c results - (my target was set higher than normal due to tendency to hypo unexpectedly) typically < 7.5% / 58, that I was making the effort to control my diabetes, rather than letting the diabetes take control of me. As we all know, but not all grasp the nettle and implement this, getting good control is not that easy to start with. But by moving up the learning curve through reading diabetes books, documents and forums about carb counting, insulin adjustment and doses based on insulin-carb ratios for each meal. ... then good control CAN be achieved.
Then you will gain good control and you will feel much better, have less strange side effects, and most importantly .. prevent those horrendous complications caused by high blood sugars. From some of your postings it sounds that, even though you have only be T1 for just over 4 years, you are already starting to experience problems. Experiencing such issues so soon can only be due to having "very poor (high) blood sugar control" over an extended period. Your three HbA1c results that I just posted are a very strong indications that you are not under control.
Here is a selection of 9 of the postings (including your own), and although all postings are made in an effort to support and help, unfortunately some are just not strictly correct. I have posted my comments after each one .....
1. "i asked a while ago about the pump and was told that until i have better control of my blood sugars the pump isnt an option for me yet. im going on what my dsn and consultant are telling me."
JontyW: A pump isn't an option until you can demonstrate that:- 1)you are doing basal/bolus MDI correctly, and 2) you still cannot achieve "good" HbA1c levels, even though you are really trying
2. "How exactly are they expecting your control to improve without their help in carb counting training, dose adjustment etc?!! And what exactly do they expect you to do in the meanwhile?! Sounds like a Dafne course would be ideal but as that sounds unlikely I think you're going to have to self educate"
JontyW: Many of the postings state that "self educate" is what they have done successfully since no course was available when needed. As already suggested there are many good documents and books that you can learn this from ....
An introduction to carbohydrate counting and insulin dose adjustment
An excellent introductory document from Diabetes UK that covers all aspects of diabetes, and the method of carb counting, insulin adjustment and insulin-carb ratios is covered in Chapter 2 (Carbohydrates) and Chapter 3 (Insulin). Even if you are not doing carb counting, you should definitely read this!
https://shop.diabetes.org.uk/store/literature/information-books/carbs-count-e-book.aspx
Adjusting your Insulin when results are too high or too low:
A detailed guide, with plenty of examples, to assist you in making required insulin adjustments. Download it and print it out so it is readily at hand after blood sugars have been made & recorded.
http://www.diabetes-scotland.org/ggc/documents/pdf files/Insulin Dose Change.pdf
Carbs & Cals: A Visual Guide to Carbohydrate & Calorie Counting for People with Diabetes
Buy this excellently illustrated book that provides clear pictures, portion sizes & weights plus carbohydrate values of nearly every food you might need.
http://www.amazon.co.uk/gp/product/0956443052/ref=oh_details_o01_s00_i01
3. "Well that is appalling isn't it. If MDI is failing then a pump is the next thing to use as that can help make control better. You don't wait till you are doing ok and then get a pump, you will not fit the criteria then !!!! Me thinks they are pulling a fast one "
JontyW: In your case MDI is indeed failing, but you know the reason for this .. see earlier re self educate on carb counting etc..
4. "The book is Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas - well worth getting hold of."
JontyW: I totally agree and even being a T1 for 40+ years, I have only recently bought this book, and learnt so much more. Until last year i never knew anything about basal/bolus regime, basal fasting testing, accurate carb counting and in particular .. calculating and using insulin-carb ratios for each meal.
5. "I wouldnt wait for a carb counting course - it is so easy to teach yourself. It really isnt complicated at all - the more difficult bit is working out your ratio's - and is down to trial and error until you get it right. Can we help on carb counting - what is it that you dont understand?"
JontyW: this member is spot on .. but you never replied to the questions aimed at helping you :-(
6. "R62 Continuous subcutaneous insulin infusion (insulin pump therapy) is recommended NICE
as an option for people with Type 1 diabetes provided that:
● multiple-dose insulin therapy (including, where appropriate, the use of insulin
glargine) has failed;* and .....
Am sure there is lots more, this is the link to the full NICE guidance. Most consultants will back down once you start quoting NICE at them."
JontyW: "Most consultants will back down once you start quoting NICE at them" - This is bad advice. You obviously do not meet the NICE criteria due to the statement at the end re using MDI and "despite a high level of care" ....
HbA1c levels have remained high (that is, at 8.5% or above) on MDI therapy (including, if appropriate, the use of long-acting insulin analogues) despite a high level of care.
7. "All parents are self taught unless they have a fantastic dietician which is highly unusual. There are no courses for us parents so we teach ourselves and start from a certain point and tweak from there. Get yourself Carbs and Cals (on your phone as an app or the book) and some digital scales with a flat part where you can put your plate on"
JontyW: more good advice regarding teach yourself. Have you got that phone app yet?
8. "the outrageous thing is that they are not giving you the skills to use MDI effectively in your case. To say that a course has a long waiting list and do nothing in the meantime just won't wash I'm afraid. Half the people here could talk you through the basics of carb counting in a 10 minute conversation.
Get hold of those books and/or follow the link to the free BDEC course. It might seem a bit of a faff to start with, but counting carbs and adjusting doses will become second nature in no time. "
JontyW: yet more suggestions about how easy carb counting is to pick up! There is no reason at all that your DSN should be expected to do this when there is no much information easily available .. see my list of links above.
9. "27-07-2010 right the 'PASTIE' course, its 'Plymouth Adjustment System Through Insulin & Eating' . its all about counting carbs etc. its a 4 week course (1 day a week) i assume there are similar courses everywhere ?? i chose to attend the 'type 1 update' course a few months ago, our group was on of the first to take it and no matter how long you have had this condition i strongly recommend, if you are offered this course, to take it! i hope that helps everyone."
JontyW: So in July 2010 you said you went on the Plymouth PASTIE course, which appears like a local version of DAFNE for doing carb counting. Did you attend and if so what are you finding difficult about implementing carb counting?
Sianee .. please read this carefully and get your boyfriend to read it also so that he can help you where needed. Also please reply to the questions that members have asked you .. they want to help but can't without your feedback.
And .. don't forget to download the links and buy at least two of the recommended books. Then you have the tools to improve your life forever .. you know it makes sense. And many congrats on your engagement
🙂
JontyW
The fact that you have asked for help shows that you clearly have come to a crossroads in your diabetes management. So - what your doing isnt working - so change it - only YOU can do that. If you were my daughter I would be horrified with your HBA1C - not in a blaming kind of way - more as a concerned parent who doesnt want their child to suffer complications (which you are already) and very worried about how this must all be making you feel - both mentally and physically. I think its wonderful that you have got engaged - and presumably you will want children - but you NEED to get on top of this before you even start to think about that because your body needs to be healthy in order to become pregnant and sustain that pregnancy.