# Hi all



## anj (May 2, 2017)

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


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## trophywench (May 2, 2017)

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 ?


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## Kaylz (May 2, 2017)

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


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## anj (May 2, 2017)

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


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## Kaylz (May 2, 2017)

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


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## Northerner (May 2, 2017)

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!


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## anj (May 2, 2017)

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


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## grovesy (May 2, 2017)

Welcome.


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## Kaylz (May 2, 2017)

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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## anj (May 2, 2017)

grovesy said:


> Welcome.


Thank you!


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## anj (May 2, 2017)

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


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## anj (May 2, 2017)

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


I saw the consultant last week.


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## Kaylz (May 2, 2017)

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


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


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## anj (May 2, 2017)

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


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## Steff (May 2, 2017)

Hi anj. 
A warm welcome to the forum


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## SB2015 (May 2, 2017)

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.


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## Kaylz (May 2, 2017)

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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## SB2015 (May 2, 2017)

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


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## SB2015 (May 2, 2017)

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


Snap


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## sunny sanghera (May 2, 2017)

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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## Kaylz (May 2, 2017)

Like @SB2015 I use BD Microfine 4mm needles and have heard others have problems with other brands and lengths etc x


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## Stitch147 (May 2, 2017)

Hi Anj and welcome to the forum from someone who is possibly MODY too. I have been struggling since diagnosis 20 months ago, I am rarely in single figures, and am normally between 10-15 most days. I am not on insulin. I asked to be referred to the hospital team back in October but they wouldn't do it at the time, they finally agreed to refer me in February and I have my first appointment at the hospital this Friday. I have never been officially diagnosed as MODY so am hoping I will get more answers after Friday.


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## Ingressus (May 2, 2017)

Welcome Anj those figures are high this lot will sort you out


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## anj (May 2, 2017)

Steff said:


> Hi anj.
> A warm welcome to the forum


Thanks Steff!


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## anj (May 2, 2017)

SB2015 said:


> 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.
> 
> ...


Hi, thanks for your message! No he didn't say why just said that I need to stick to a stable regime! I take my fast acting according to my ratio but it seems to make very little difference. I wonder if there maybe an underlying issue with my liver? It's frustrating as I was told I was on a waiting list for the pump and I wasn't. The next course isn't available until July and I am due to start uni in September so really wanted to get everything in place. I just feel exhausted all the time!


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## anj (May 2, 2017)

SB2015 said:


> 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 also use 4mm BD and have had no problems previously so it's strange how this has just started!


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## anj (May 2, 2017)

sunny sanghera said:


> 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


I totally agree it is like a daily battle! I'm so glad I am not alone! Just feels like I'm getting nowhere! Thanks for your message!


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## anj (May 2, 2017)

Stitch147 said:


> Hi Anj and welcome to the forum from someone who is possibly MODY too. I have been struggling since diagnosis 20 months ago, I am rarely in single figures, and am normally between 10-15 most days. I am not on insulin. I asked to be referred to the hospital team back in October but they wouldn't do it at the time, they finally agreed to refer me in February and I have my first appointment at the hospital this Friday. I have never been officially diagnosed as MODY so am hoping I will get more answers after Friday.


Hi, I'm the same they are unclear! I had a lot of blood test done last week, once I get somewhere I will let you know and maybe you can request similar tests! We should know as MODY from what I can understand is very different to other types! I hope you get sorted soon as this is really horrible to go through!


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## anj (May 2, 2017)

Ingressus said:


> Welcome Anj those figures are high this lot will sort you out


I hope so! Thanks Simon!


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## Davo (May 2, 2017)

Welcome Anj to this forum. I have recently joined and received so much great knowledge and encouragement, it is certainly the place to be.


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## anj (May 2, 2017)

Davo said:


> Welcome Anj to this forum. I have recently joined and received so much great knowledge and encouragement, it is certainly the place to be.


I'm really glad I joined everyone is so helpful and supportive!


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## Wirrallass (May 2, 2017)

So sorry to see you are struggling anj - with being T2 I'm unable to help or advise you, I'm sorry  - but you'll receive lots of information from the T1's and MOBY'S on here - I just wanted to wish you a warm welcome to our forum and to hope your diabetes issues are sorted out for you very soon,  take care x
WL


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## anj (May 2, 2017)

wirralass said:


> So sorry to see you are struggling anj - with being T2 I'm unable to help or advise you, I'm sorry  - but you'll receive lots of information from the T1's and MOBY'S on here - I just wanted to wish you a warm welcome to our forum and to hope your diabetes issues are sorted out for you very soon,  take care x
> WL


Ah thank you so much, that's very kind of you x


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## zx10pilot (May 2, 2017)

Hi Anj, with BG levels like that it's not surprising you're feeling rough.
I'm not a MODY so can't comment directly, but...
Your GP seemed surprised by your levels (as he should be - they're very high) but did he follow up with a referral to see your local Diabetes specialists? If not, who is going to review your test results?
I assume your GP is responsible for your prescription and your well being?


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## anj (May 2, 2017)

zx10pilot said:


> Hi Anj, with BG levels like that it's not surprising you're feeling rough.
> I'm not a MODY so can't comment directly, but...
> Your GP seemed surprised by your levels (as he should be - they're very high) but did he follow up with a referral to see your local Diabetes specialists? If not, who is going to review your test results?
> I assume your GP is responsible for your prescription and your well being?


Hey, thanks for your message. I've been messed about by my community diabetic nurse so it's all been done a bit back to front! I've paid to see a consultant privately as a one off and am hoping to get an insulin pump, problem being that I am not booked onto DAFNE until July! I have had a load of blood tests done last week as I get the feeling he thinks something but be underlying. It's a horrible feeling, I see your HBA1C level has come down a lot! Did you also feel awful with the high sugars? At times I feel I am going a little insane!


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## zx10pilot (May 2, 2017)

I felt spectacularly rough - tired all the time, no energy, couldn't concentrate, blurred vision, permathirst and losing weight... all the typical hallmarks of D. Thankfully I've had loads of help and got more stable now but my diet is pretty boring. For me though, boring is predictable 
I don't know the difference between MODY symptoms & what I had except that high levels must give similar effects?


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## Lucy Honeychurch (May 2, 2017)

Welcome to the forum  
Sorry you're having such a rough time, I'm not surprised you feel so awful if your sugar levels are so high, I really hope you get some proper help.


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## anj (May 2, 2017)

zx10pilot said:


> I felt spectacularly rough - tired all the time, no energy, couldn't concentrate, blurred vision, permathirst and losing weight... all the typical hallmarks of D. Thankfully I've had loads of help and got more stable now but my diet is pretty boring. For me though, boring is predictable
> I don't know the difference between MODY symptoms & what I had except that high levels must give similar effects?


That's exactly how I feel, just rotten and really out of sorts! I really need to get my health back on course! I hope in time my levels can reduce as yours have. They only told me last week that MODY has not been confirmed despite telling me for years that's what I have! I'm really trying to stay positive and hope things will get better! Thank you for message.


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## sunny sanghera (May 2, 2017)

anj said:


> I totally agree it is like a daily battle! I'm so glad I am not alone! Just feels like I'm getting nowhere! Thanks for your message!


We all feel like that at times I treat it like a tug of war pulling one side then getting dragged the other side but no side is safe all you can do is try your best


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## anj (May 2, 2017)

sunny sanghera said:


> We all feel like that at times I treat it like a tug of war pulling one side then getting dragged the other side but no side is safe all you can do is try your best


I like that, it's very accurate to what it feels like!


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## sunny sanghera (May 2, 2017)

anj said:


> I like that, it's very accurate to what it feels like!


I agree it's a no win situation even if you win the tug of war the tug is a marathon not a sprint


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## anj (May 2, 2017)

Yeah a life long marathon, it really is hard to understand what life with diabetes is like unless you're living it and running it day to day!


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## Ditto (May 2, 2017)

Hello and welcome to the forum Anj. Sorry for your troubles, it sounds like a nightmare. I don't know why people can't help? They just leave you to it. That's what happened to me but luckily I've only got type 2, no meds and just a spot of fatty liver which can be controlled with low carb eating if I would only stick to it. It must be doubly hard seeing to children as well. I think you're doing great considering.


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## anj (May 2, 2017)

Ditto said:


> Hello and welcome to the forum Anj. Sorry for your troubles, it sounds like a nightmare. I don't know why people can't help? They just leave you to it. That's what happened to me but luckily I've only got type 2, no meds and just a spot of fatty liver which can be controlled with low carb eating if I would only stick to it. It must be doubly hard seeing to children as well. I think you're doing great considering.


Hey, thanks for your message! I really love the fact that people here are down to earth! Trust me I get denial totally! It's a massive thing to get used too and for the rest of our lives! I'm sure I'll get sorted soon. Sounds like you are getting to grips with it and are very honest about the whole thing, it's really good to hear X


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## sunny sanghera (May 2, 2017)

anj said:


> Yeah a life long marathon, it really is hard to understand what life with diabetes is like unless you're living it and running it day to day!


Absouletely it's like a job walking around these days drops my levels so am always on edge what to do when to do it almost like a robot


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## anj (May 2, 2017)

Horrible isn't it! Maybe one day there will be a breakthrough, until then it's so the marathon robot dance!


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## Ljc (May 2, 2017)

Hi Anj. Welcome. Sorry I'm late to your thread. I am another on who is confused about you being told not to do corrections, esp as your levels are so high.   I've only to be approaching double figures to start feeling rough, I can only guess how awful you must be feeling.
I saw you mention a community diabetic nurse in an earlier post, are you under the hospital diabetic clinic as well ?  if not imo you should be referred asap.
I am so sorry as well as annoyed that you're being let down so badly, I hope you get the right help that you so obviously need and deserve soon.
Please let us know how you get on.
Ps
I'm wondering if you phone our helpline if they could assist you
Back in a mo with the number
0345 123 2399. I hope they can help you.


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## anj (May 2, 2017)

Ljc said:


> Hi Anj. Welcome. Sorry I'm late to your thread. I am another on who is confused about you being told not to do corrections, esp as your levels are so high.   I've only to be approaching double figures to start feeling rough, I can only guess how awful you must be feeling.
> I saw you mention a community diabetic nurse in an earlier post, are you under the hospital diabetic clinic as well ?  if not imo you should be referred asap.
> I am so sorry as well as annoyed that you're being let down so badly, I hope you get the right help that you so obviously need and deserve soon.
> Please let us know how you get on.
> ...


Hi, thanks so much for your message! I don't know why they said not to continue with the correction doses. To be honest I struggle to retain basic info these days! I saw a consultant as a one off private appt and he has done a lot of blood work, the results should be back this week, I have been so messed about and just need to start the pump and get better control. My sugars are never in single figures at best the late teens, this has been the case for 2 years my level at last check was over 100. I'm on them now I'm not going to be fobbed off anymore and with all this support I feel like I have the courage to speak up! Thanks you so much for your message. I think this forum is great and I am so glad I joined, there are lovely people out there!


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## New-journey (May 2, 2017)

Welcome to this group, I still feel new as diagnosed 18 months ago but have been learning so much from this forum. You have a right to have good levels and to feel well again. I can't imagine how you are coping feeling ill and being a Mum. I start to feel ill over 8 these days but was over 22 when diagnosed. You deserve the right kind of help and brilliant you have the courage to speak up. I had to fight to get any rapid insulin as they refused to give it to me but I won in the end and so will you. Whilst you are waiting for the results do look at the thread on the food queries forum 'what did you eat yesterday' as many excellent low carb ideas which can help in the meantime. Sending loads of support.


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## Ljc (May 2, 2017)

anj said:


> Hi, thanks so much for your message! I don't know why they said not to continue with the correction doses. To be honest I struggle to retain basic info these days! I saw a consultant as a one off private appt and he has done a lot of blood work, the results should be back this week, I have been so messed about and just need to start the pump and get better control. My sugars are never in single figures at best the late teens, this has been the case for 2 years my level at last check was over 100. I'm on them now I'm not going to be fobbed off anymore and with all this support I feel like I have the courage to speak up! Thanks you so much for your message. I think this forum is great and I am so glad I joined, there are lovely people out there!


Yes it's time to take the gloves off.
The people here have helped me a lot since I joined just over a year ago.


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## Ditto (May 4, 2017)

> Sounds like you are getting to grips with it


Oh no I'm not at all, just got to keep going though. Will get to grips with it sooner or later. Sooner hopefully.


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## Grannylorraine (May 9, 2017)

Welcome to the forum, I am type 2 so can offer any advice, but hope you start to see an improvement in your numbers.


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