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Hi all

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anj

anj

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Relationship to Diabetes
MODY
Hi,

I'm sure I'm not alone but kind of feel as though I am. I have had badly controlled diabetes for 2 years and been messed about by the system. I was told I have MODY but now this is unclear! I was told I was on a waiting list for a pump but now it appears this is not the case! My sugars at best are 14 and go so high they can't be registered. Im struggling to function properly and feel really down. I'm not one for forums usually but I figured that support can be a good thing!

Anj
 
Hi Anj - I'm not surprised you feel down with BG as high as that constantly.

Who is supposed to be ovverseeing treating your diabetes (hospital D clinic, GP, who?), what education have you received to help you and what drugs have you been prescribed ?
 
Hi welcome to the forum @anj I'm sorry to hear you are struggling and that you are being let down by the people who are supposed to help I'm sure someone with more knowledge and or experience will be along to help soon xx
 
Hi ladies

So nice of you both to message me so soon! I am on 36 units Levemir am and 30 pm and take novorapid before meals. I am awaiting DAFNE in July, but until then can not have the pump unless I pay privately but then won't be entitled to help on the NHS. I do do carb:insulin ratio that I have calculated. I feel stupid that I did not chase the specialist nurse but I just believed her! I really think the pump could help me, but it's a lot of money! I am off work at the mo and have 3 children, I just struggle with feeling so rough at the moment!

Xx
 
As you are running so high, are you doing correction doses? I cant help out with anything to do with pumps but @trophywench would be able to advise on pro's and con's, you've come to the right place as we are all a friendly bunch and usually doesn't take long at all to get an answer or advice from someone on here 🙂 xx
 
Hi anj, welcome to the forum 🙂 Sorry to hear about the confusion about your diagnosis and the unhelpful comments you have been given by the healthcare people :( Clearly, you need insulin, but haven't quite been able to crack getting your levels under control. Have you ever been offered a course such as DAFNE, to help you?

I would suggest talking to the people at INPUT, who are very helpful and will be able to give you the true situation regarding your access to a pump. Their website is http://www.inputdiabetes.org.uk/

Have you tried keeping a food diary and sticking to a simple diet for a week or two to try and get a better handle on your tolerance and reaction to different things? Have you done any basal testing (or even had it explained to you?) - have a look at the following to see what it entails:

https://forum.diabetes.org.uk/boards/threads/basal-testing-made-easy.19060/

Although it is written for pumpers, the same principles apply - until you have got your basal (levemir) dose set correctly then it will be very difficult, if not impossible, to get your carb count ratios correct.

Let us know if you have any questions, there is a wealth of knowledge and experience here and we will be happy to help! 🙂
 
Hi,

I saw a consultant privately as a one off appointment and he advised to stop any correction doses. He is confused as to why I haven't been seen sooner as my HBA1C was 93. I do keep a food diary but it makes no sense as to why my sugars are so high. I was neglectful about 3-4 years ago but I am careful with diet and watch my weight. I follow my insulin regime so I just don't know what's going on here!

Currently waiting to hear from INPUT. I meet the criteria for a pump but have not attended DAFNE! I spoke to my GP who did say that I could have an underlying liver problem and maybe that's why my sugars is so high!?! I have had a load of blood tests done and a chest X-ray! It's so frustrating to keep imjecting and see no improvement, I have so much bruising on my stomach and it really hurts!

I'm usually quite an upbeat person, honestly! Just lost my motivation think I have sugar brain!!!! X
 
What was the reason given for stopping correction doses? if your levels are high you need to correct that rather than just run with it IMO, and how long ago was that, also you say your stomach is bruised and hurts, do you change injection sites at all? xx
 
Yeah I do rotate the sites around my stomach, I don't know why this has suddenly happened with the bruising and lumps. He said that I need to follow a clear plan and that these things can't be changed overnight, that's what they all say to me! It seems like they aren't bothered by the sugars being so high. I have taken al my documents and my readings and they can see how much higher my levels are getting. I feel like injecting just doesn't help which I know sounds stupid but I do it and still my sugars run so high. I watch what I eat and weigh myself regularly. My BMI is healthy so I wonder if there maybe an underlying issue which is kind of what the consultant hinted at! It's hard to explain to people who don't have diabetes how hard this is. Recurrent infections and keytones just wipes you out! I'm glad I joined this forum as everyone is so kind and helpful x
 
Kaylz said:
What was the reason given for stopping correction doses? if your levels are high you need to correct that rather than just run with it IMO, and how long ago was that, also you say your stomach is bruised and hurts, do you change injection sites at all? xx
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I saw the consultant last week.
 
anj said:
Yeah I do rotate the sites around my stomach, I don't know why this has suddenly happened with the bruising and lumps. He said that I need to follow a clear plan and that these things can't be changed overnight, that's what they all say to me! It seems like they aren't bothered by the sugars being so high. I have taken al my documents and my readings and they can see how much higher my levels are getting. I feel like injecting just doesn't help which I know sounds stupid but I do it and still my sugars run so high. I watch what I eat and weigh myself regularly. My BMI is healthy so I wonder if there maybe an underlying issue which is kind of what the consultant hinted at! It's hard to explain to people who don't have diabetes how hard this is. Recurrent infections and keytones just wipes you out! I'm glad I joined this forum as everyone is so kind and helpful x
Click to expand...
You could try using your thighs to inject as well, I know what you mean about the injecting not helping but as you are running high and only inject for the carbs you are eating they wont get any lower that's why I don't understand why they told you not to correct, this place is great so feel free to have a general rant too and ask ANY questions you may have xx
 
Ah thanks so much I really appreciate it! I have always injected in my stomach and never had a problem! I have had a load of blood tests and o am hoping that this will get sorted. I think the pump would really help me and I hope that these sugars get under control! I struggle to think these days! X
 
Hi Anj

Firstly welcome to the forum. A good place to simply ask questions as there are a lot Of very knowledgable and helpful people around on here.

It is no surprise that you feel tired if you BG levels are running so high all the time. I am surprised that the private consultant told you to stop correction doses. Did he explain why?

You mention that you have a fixed dose for your quick acting insulin. Does that mean that you eat exactly the same number of carbs at every meal. I know mine change on a daily basis so getting the carb ratio right was very important, and this was not giong Otto be possible until I sorted my basal insulin, as that is dealing with the glucose that my body is releasing, whilst the quick acting is dealing with the carbs that I eat. I certainly find keeping a record of the carbs and insulin given, along with time and BG helps me to spot patterns.

With the pump, it is common for clinics to require people to do the DAFNE course first as it is the skills around carb counting, and adjusting basal rates, carb ratios and correction doses that you will need to understand in order to make effective use of the pump. There are also a lot of areas where they can no longer get access to DAFNE so I am pleased that you have that booked in.

The longer that you have diabetes the more resistant you can become to insulin, so doses and ratios need adjusting throughout. If you have been running high for a while this may also have had an impact.

I hope that you can get things sorted out.
 
I also used my tummy for the first 2 months but DSN had me change sites due to it so now I use one thigh for breakfast, the other for lunch, a side of my stomach for tea and the top of a bum cheek for my basal at bedtime haha, I hope you get to the bottom of things soon and manage to get back on track as it cant be easy at all for you having 3 kids AND dealing with all of this on top xx
 
Ps
When on pens for my insulin, I used to inject left thigh for breakfast left tum for lunch, right tum for evening meal and right leg for bedtime. That way I moved things around and I also made sure that I kept moving the site on each of the places to avoid lumps and bruises.

Another thought is what needle length are using. I started on 8 mm which hurt quite often. I now use 4mm which are much better, and I make sure that they BD microfines (not GlucoX which the GP practice tried to swap me to which were nowhere near as good and smooth)

I hope that helps
 
Kaylz said:
I also used my tummy for the first 2 months but DSN had me change sites due to it so now I use one thigh for breakfast, the other for lunch, a side of my stomach for tea and the top of a bum cheek for my basal at bedtime haha, I hope you get to the bottom of things soon and manage to get back on track as it cant be easy at all for you having 3 kids AND dealing with all of this on top xx
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Snap
 
Hello anj welcome to the forum it can be a overwhelming condition I have suffered from loads of low sugar levels getting bit better now tho I try to hard to get it in the middle so that's why this happens it's like fighting a war
 
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