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advice please!

E

Emily2369

Member
Messages
5
Type of diabetes
Type 1
Treatment type
Insulin
I have had type 1 diabetes since I was 9 years old. I have always struggled with my control literally from day 1..for many years I hid my condition,never took it seriously enough so I was classed as an adolescent diabetic by the hospital for years..nothing really seemed to help me..I am now 25 years old and have diabetic neuropathy in both eyes which worries me every time I go for treatment, my hba1c was off the chart reaching over 13%/110 mmol or higher!, so after doing 2 Dafne courses/changing my insulin pattern and finding the man I am happy with I have sorted my self out but hit a wall with it..I take insulin every time I eat by carb counting & a slow acting insulin every night before bed. Currently my hba1c sits at 9.8%/80mmol and has done for about 2 years..I do get dawn phenomenon which I treat every morning but sometimes I manage well all day but not always..resulting in doing correction doses a lot, I refused an insulin pump because you only get 1 shot at it so I'm saving that option for when I really need it e.g pregnancy (when at decent level) in a couple of Years or so... Am I the only person who has had this struggle? What would you do to just bring this hba1c down to at least 53 mmol? Is there anyone who has cracked carb counting or been able to get sugars down from such a high reading? thanks in advance
Emily
 
I am a total novice compared to you having been diagnosed about 6 months ago. I have heard people on the forum talk about a basal insulin test where you eat nothing for the day to check if your basal dose is correct. I also know another type 1 who splits their basal dose in 2 to help with the dawn phenomenon.

What sort of foods are you eating that spike your blood glucose? Does it happen at a particular time of day? Perhaps your carb ratio is varying a bit during the day leading to unexpected highs?

I am sure someone who knows what they are doing will be along soon with some helpful advice. I think we are all a work in progress at managing this condition so don't feel bad if you are finding it difficult.
 
Hi Emily and welcome to the forum.

Craig is right that you need to carry out some basal checks before you can look at your insulin-to-carb ratio's, taking daily correction doses means your basal insulin is too low, your miscalculating the carbs in your food or your I:C ratio's need changing.

The following is for pump users but the advice on fasting and carrying out a basal check in different time frames is still the same for people on MDI:

http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007
 
I agree with the other posts. Do check your Basal levels and you should only rarely need to have a correction dose of rapid. If you don't have hypos then some increase in insulin may be needed? Are you low-carbing. This is essential if you want to keep weight and blood sugar down without excessive insulin. It also reduces insulin swings and the risk of hypos.
 
You don't have to low carb if you prefer not to - each to their own. Find what suits you and your body (and know that low carbing is contraindicated in pregnancy).

I don't low carb and my last HbA1C was 28. I'm currently pregnant so being extra-strict.

As others have said, get your basal insulin right first, then look at your fast-acting. You may need to change your insulin to carbs ratios for some meals, or perhaps inject so many minutes before eating to give the insulin a chance to get working.

How can you get your HbA1C down? What worked for me was sorting my Dawn Phenomen as I found that starting the day high messed things up for hours. Also, and just as important, testing after meals to make sure my sugars were in range. If they aren't I do a correction dose. It's a case of fine-tuning your insulin and testing lots. I'm not perfect by any means, but I always aim to get my sugars within range. Thats my basic target, and it takes work.

I have a pump and I do find it a lot easier. It sorted my Dawn Phenomen very well. I'm not sure what you mean by only having one shot with a pump. Do you mean they'd take it away if your resukts werent improving?
 
Good advice above.
When you say you have dawn phenomenon, do you mean you're high every morning, or is your BG fine when you get up but then rises?

If it's the former, then you need to increase your basal. If you've already tried that but go hypo on a minimal increase then find out if you can get a half unit pen for your basal insulin and try a half unit increase. If that doesn't work, I think the pump would be your best bet.

Are you worried that you wouldn't like to be attached to the pump 24/7? You won't know till you try. You sound as if you're now taking charge of your diabetes. The pump is a lot of hard work but it is worth it in the long run. I know you haven't dismissed it altogether but, if you've tried everything else, go for it!
 
Hi Emily do not worry we have all struggled I think it's fair to say at one point or another. Have you heard of carbs and Cals? It's a book ands or app I find it helps loads with carb counting not that you need it but this book opened my eyes. I did an intense 6 months course as I was the guinea pig group for pumps in the UK. From my experience please do not worry about the threat of only once you can try the pump. Who knows about the future you might move meaning you change pct so they might have more options. Also nhs legally can't refuse treatment even if tried before because you can develop a good argument for it reading why it wasn't for you before and why now etched most not all but most who become pregnant have to go on the pump because the harm it can cause to the baby plus weekly appointments at the hospital. You can get pumps that only the site is attached to you if that is a concern for you. For me I love to use pump and pen. The pens just didn't give me personally enough freedom as the pump does but I'm mindful that although I have gone from 9.5 to 7.5 after a month of being on the pump (been on a year now) it does cure everything. I have been told o have a right eye issue now although controlled I need to get it to 6.0 on habc1 and bare in mind it's technology it can go wrong and only does what it is told (sometimes) if I can help anymore please don't hesitate to message
 
Have a think about what getting a hypo is like. It may be that keeping everything high is a little to do with getting hypos. Some hospital teams are ABSOLUTELY against hypos. Actually, from my experience and chats with other T1s, hypos are a part of life, yup my blood sugar goes below 3.5 a few times a week, just as it goes above 12.
If you think that hypos are a bit of a disaster and you've not had any, I'd try engineering one in a safe place. Don't do it like a mad thing and inject 60g-of-carbs-worth, just try an overcorrection by, say, 2 mmol. Be careful about over-correcting this drop. 3 tsp of sugar should be all it needs and 5 test strips over 4 hours.
It's not as scary as it seems, but possibly knowing more about lows will help you drag the averages down a bit?
 
(Oh btw, with your high HBA1C, you're an ideal candidate for a pump, don't worry about "1 shot". That 1 shot is gonna last 5 years at the shortest, as that's the lifetime of a pump.
 
Hi all, sorry for delay! So to answer ur questions, I have been left to my own devices to work out my background which although it seems to be doing it's job I'm still unsure because I'm level one for a day or 2 then it can just change and be high a lot..in regards to having 1 shot with a pump this is what the hospital said, they told me I would be put on a trial for a year, then if it wasn't improving my levels they would take it away? Harold I have suffered with hypos of 2.3 and highs of H1 more than you could ever know this is why I'd really like to find a happy medium, just feel that the hospital doesn't want to know tbh:(
 
Honestly, Emily, as you really want to get your A1c and blood levels down, my view would be that by far your best and quickest way would be to cut carbs. Zand hasn't needed to, but Zand's path is not a typical one, and you have no time to lose because you want to support your eyes NOW.

Get the Dr Bernstein book. It's a lifesaver. It's turned my dianetes around, and for many, many - look on the forum.

His method is to cut carbs down to 30g total a day, **because low carb intake gives you consistent blood sugars.** It's his Law of Small Numbers. So no more swings high/low, hypo risk much smaller. And if you do it, he argues that many D complications are reversible.

You have to watch your BG levels, of course, and lower insulin doses as necessary.

If you don't have time to lose, I'd not waste time on anything else.

Best of luck, Lucy
 
Hi Emily2369
first a warm welcome from me :)
it really is a tough thing to deal with 24/7 because life somehow seems to get in the way most of the time.

I had an extremely bad hypo back in 2001 in which i was hospitalised and my endocrinologist told me i must not drive while i got myself readjusted. he signed me off work for 8 weeks and during this time i spent all my time just worrying about ME and getting all my numbers realigned and in a safe low range (4.5-10). For the last 14 years this has helped me to get HbA1c's of between 5.7% and 6.2% consistently.

So what I am saying is that using the advice from others above me here I think you should take the time needed for YOU and put the rest of your life on hold for a few weeks. we will all be here every day to assist and to encourage you and keep your spirits up if you have a blip along the way. ( by the way -- this fantastic place did not exist back then or i would have used this help as well )
 
hi Emily,
I fee like your diabetic team are trying to scare you into being very committed to a pump if you took it but they cant take it away as they would have a very big legal case on their hands if they did. Do you mind me asking your area?
Accucheck sell (depending on your finance) a continuous monitor, now you would have to continue doing blood tests but this could sit on you for a week. You then down load it, it then could give you a read out of your readings in a week that might be helpful I wonder? its 100 and 50 per box which each box lasts a week. Expensive I know but you would only use it when you wanted a clear view of monitoring your basal rate so it might be an idea?
 
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