Hi, help and support needed.

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Lorraine

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Relationship to Diabetes
Type 1
Hi everyone,

My name is Lorraine, I was diagnosed type1 diabetic on 24th November 2006. I shall never forget that date. I went to the dr with a back ache and came out with diabetes. Looking back I had symptoms for over a year but just ignored them. I was 29.1 and tht was late in the afternoon so I dread to think what it had been earlier when I had eaten.

I had to go straight to hospital and was given insulin. To cut a very very long story short the whole thing has been a nightmare. I have no idea about carb counting, my levels range from 2.1 to 20.6 and that was one day. I have become depressed with the whole thing. I am underweight if anything and therefore dieticians don't seem to be able to help me. I want to put on some weight but how can I if I can't eat fat or sugar. Actually I don't know what I can or can't eat.

I inject after every meal in my stomach and at night was injecting in my legs but I got lumps and bruises and was told to inject in my buttocks. Well now the muscle in one of my buttocks has wasted away. I was so distraught I went to the out of hours dr but was told I should go to my own dr. I can't see my own dr until this Friday, nearly 2 weeks after going to the out of ours dr. I have a diabetes check up mid August but last time they told me they don't have a dietician anymore and that the dr didn't need to see me. I have been asking to be referred to the local Hospital but keep being told that the drs surgery has a sufficient diabetes clinic.

Gosh, sorry to waffle so much on my first visit here, just needed to get it all out.
Lorraine
 
Hi lorraine, sorry to hear this story, must be so upsetting for you.
I can't give any advice, i have type 2 and only diagnosed a month ago but rest assured that plenty of people on this forum will help you and have knowledge of type 1

hope that you get sorted.

Take care

Julie x
 
So sorry to hear you are having a bad time with your Diabetes and seem to be getting no help. Hopefully when you go back to your Doctor you should get a referral to your Diabetes Centre at the hospital. In the meantime read as much as you can about the condition it will help you to understand and to cope with hypos etc. Its really hard I know. i have been diagnosed for 18 months now and am still making mistakes. However help is out there. These message boards are a great help. Best wishes.
 
Hi Lorraine,

You have had a terrible time so far but everyone here is very helpful and knowledgeable so remember to keep in touch regularly as things will get better.


It's good that you finally have an appointment at your GPs. Remember to tell him/her how you feel and the problems you are having (write a list and take it in with you so you don?t forget anything).

Does your surgery have a nurse who has an interest in diabetes might be easier to get hold of than your GP? Or does the hospital where you have your appointment in August (or is that at your GPs?) have a DSN (Diabetes Specialist Nurse) who you could be put in touch with? It sounds like whatever happens, you are going to have to push hard to get some results.

With regard to carbohydrate counting, there is a good website which is at a hospital in Bournemouth)I will try to find the link for you which would be worth a look to give you an idea about it but the basic idea is that if you can work out how much carbohydrate you are eating, you can use that to work out how much insulin you need to cover it.

The problem with your injection sites, I can?t really help with ( I had to stop using one of mine for a while but didn?t have any problems with the new one) but that could be why your results are so up and down as if your site is lumpy it can affect the speed that your insulin is absorbed. I would force you GP to see them when your are there as this might push them in to action on your behalf.

Please let us know how you get on. Is it this Friday or next that you have your appointment?
 
Lorraine, first of all let me welcome you to the forum - I'm so glad you have found us!🙂

I am absolutely appalled at the way you have been treated!!! From what you have told us, this must surely constitute negligence on the part of your healthcare team (well, that seems to consist of your GP only, which is wrong for a start, especially for a Type 1, newly diagnosed as you were). What I would suggest is a call to Diabetes UK's careline:

http://www.diabetes.org.uk/How_we_help/Careline/

Tell them about your situation and ask them for advice on how best to seek the help you need, as you are clearly not getting it currently. They may be able to tell you how to go about getting referred to a proper Diabetes Clinic. Once there I would hope that you can start to get things under better control - you may even be a good candidate for a pump with such wildly swinging numbers, but it may simply be down to the fact that you have been given no dietary advice or how to adapt your insulin to your needs.

What insulin are you on? I had problems for months after diagnosis because I was seriously underweight, and had problems finding enough flesh to inject into. What needles are you using? Sorry for all the questions, but these are all things that you should write down and ask your doctor if you are getting the most suitable treatment. You do NOT need to live like this! I have been lucky in getting excellent care from the start, with the result that I have had good control and few problems - hopefully this will be what you will be able to say soon.

There is so much in your post that is wrong I can hardly contain my anger! Please do call DUK, and let us know how things go for you. Anything else you want to ask before seeing your doctor - please do!🙂
 
MCH said:
Hi Lorraine,

You have had a terrible time so far but everyone here is very helpful and knowledgeable so remember to keep in touch regularly as things will get better.


It's good that you finally have an appointment at your GPs. Remember to tell him/her how you feel and the problems you are having (write a list and take it in with you so you don?t forget anything).

Does your surgery have a nurse who has an interest in diabetes might be easier to get hold of than your GP? Or does the hospital where you have your appointment in August (or is that at your GPs?) have a DSN (Diabetes Specialist Nurse) who you could be put in touch with? It sounds like whatever happens, you are going to have to push hard to get some results.

With regard to carbohydrate counting, there is a good website which is at a hospital in Bournemouth)I will try to find the link for you which would be worth a look to give you an idea about it but the basic idea is that if you can work out how much carbohydrate you are eating, you can use that to work out how much insulin you need to cover it.

The problem with your injection sites, I can?t really help with ( I had to stop using one of mine for a while but didn?t have any problems with the new one) but that could be why your results are so up and down as if your site is lumpy it can affect the speed that your insulin is absorbed. I would force you GP to see them when your are there as this might push them in to action on your behalf.

Please let us know how you get on. Is it this Friday or next that you have your appointment?
Click to expand...

Thank you so much for your reply.
My appointment is this Friday but that is just with my GP and really about my depression and whenever I mention anything diabetic in routine appointments i get told to make an appointment at the in surgery diabetic clinic, which is just run by a gp. I do get my feet and eyes looked at though. I don't really have any fat to inject into which doesn't help. I am on novo rapid during the day and levimir at night. If I am running high anything over 10 I don't feel too bad. I check my blood sugar before I eat but quite honestly I have no idea why I am checking it because I then eat and then take my usual dose of insulin. I am fed up of feeling tired and washed out all the time and am currently off work and I know they are getting fed up with me.
I want to go to the diabetic clinic at the hospital where the drs and nurses are dealing with it all day everyday, but uite honestly I have more hope getting an audience with the pope.
 
Northerner said:
Lorraine, first of all let me welcome you to the forum - I'm so glad you have found us!🙂

I am absolutely appalled at the way you have been treated!!! From what you have told us, this must surely constitute negligence on the part of your healthcare team (well, that seems to consist of your GP only, which is wrong for a start, especially for a Type 1, newly diagnosed as you were). What I would suggest is a call to Diabetes UK's careline:

http://www.diabetes.org.uk/How_we_help/Careline/

Tell them about your situation and ask them for advice on how best to seek the help you need, as you are clearly not getting it currently. They may be able to tell you how to go about getting referred to a proper Diabetes Clinic. Once there I would hope that you can start to get things under better control - you may even be a good candidate for a pump with such wildly swinging numbers, but it may simply be down to the fact that you have been given no dietary advice or how to adapt your insulin to your needs.

What insulin are you on? I had problems for months after diagnosis because I was seriously underweight, and had problems finding enough flesh to inject into. What needles are you using? Sorry for all the questions, but these are all things that you should write down and ask your doctor if you are getting the most suitable treatment. You do NOT need to live like this! I have been lucky in getting excellent care from the start, with the result that I have had good control and few problems - hopefully this will be what you will be able to say soon.

There is so much in your post that is wrong I can hardly contain my anger! Please do call DUK, and let us know how things go for you. Anything else you want to ask before seeing your doctor - please do!🙂
Click to expand...

Thank you very much for your reply. I use 3mm needles and novorapid fter meals and levimir at night. I am on the same dose that I was told when i was first diagnosed because I don't know what else to do. I tell my dr that I am having hypos and then the next minute I over compensate and am very high. I live my life swinging up and down. The day i left hospital I was shown just once how to inject, didn't get to see a dietician and just sent home to get on with it. Almost 3yrs later I am still just getting on with it and not getting very far. I am just so glad I found this site. I have joined Diabetes UK and will phone them for advice. I hadn't been getting the magazines for months and found out that my ex husband wasn't forwarding them on (don't even start me off on that one lol).
 
Thank you all very much for making me feel welcome and for replying so promptly to my post.
At times I feel so isolated. My boyfriend is so supportive and knows when I going hypo. I think its because I get ratty with him and argumentative.

I don't think for one moment that my bosses have any idea what I am going through. I cover lessons for teachers who are off sick or on courses etc and that in itself is very stressful. They made me see the occupational Health person who was very nice but really only told me that a digestive is the equivalent to 2 jaffa cakes. Eh up thats me sorted then 🙄
 
Lorraine said:
Thank you very much for your reply. I use 3mm needles and novorapid fter meals and levimir at night. I am on the same dose that I was told when i was first diagnosed because I don't know what else to do. I tell my dr that I am having hypos and then the next minute I over compensate and am very high. I live my life swinging up and down. The day i left hospital I was shown just once how to inject, didn't get to see a dietician and just sent home to get on with it. Almost 3yrs later I am still just getting on with it and not getting very far. I am just so glad I found this site. I have joined Diabetes UK and will phone them for advice. I hadn't been getting the magazines for months and found out that my ex husband wasn't forwarding them on (don't even start me off on that one lol).
Click to expand...

You should look into getting a place on a DAFNE course, or something similar, this will teach you how to 'carb-count' and be more accurate with your insulin doses. I was offered a short 3 morning course at my clinic that taught me carb counting, plus all sorts of other stuff, and it was good to meet other diabetics!

This is an online site that many have found useful in the meantime:

http://www.bdec-e-learning.com/

I found that the area at the top of my hips, round the back, is OK for injecting if you don't have much flesh - it can be a bit of a twist, but good as an alternative site. I inject one side, then the other. Thankfully, I have started to put weight back on so it is less of a problem, although I still can't use my thighs as some do.

Do you know what your 'numbers are? HBA1c, cholesterol, blood pressure etc.? I'm not surprised you are feeling depressed and struggling with energy levels etc., but hopefully with good support this could mark a changing point and you can get back to living a happy, normal life - and sooner rather than later!
 
Lorraine said:
... They made me see the occupational Health person who was very nice but really only told me that a digestive is the equivalent to 2 jaffa cakes. Eh up thats me sorted then 🙄
Click to expand...

Ah! If only it were that simple!😱:D:D
 
Lorraine said:
Thank you all very much for making me feel welcome and for replying so promptly to my post.
At times I feel so isolated. My boyfriend is so supportive and knows when I going hypo. I think its because I get ratty with him and argumentative.

I don't think for one moment that my bosses have any idea what I am going through. I cover lessons for teachers who are off sick or on courses etc and that in itself is very stressful. They made me see the occupational Health person who was very nice but really only told me that a digestive is the equivalent to 2 jaffa cakes. Eh up thats me sorted then 🙄
Click to expand...

Lol........he must be special Lorraine, I thought all woman got ratty and argumentative:D. Welcome to the friendly forum, don't ever feel isolated again.
 
Hi Lorraine
Hope you can get some more help from the NHS. Most type 1 diabetes is handled by hospital clinics, so do keep asking to be referred. Once you're at a hospital, then ask about attending a DAFNE (Dose Adjustment for Normal Eating) course. In the meantime, there is information online at www.dafne.uk.com or www.bdec-e-learning.com
 
Lorraine said:
Thank you so much for your reply.
My appointment is this Friday but that is just with my GP and really about my depression and whenever I mention anything diabetic in routine appointments i get told to make an appointment at the in surgery diabetic clinic, which is just run by a gp. I do get my feet and eyes looked at though. I don't really have any fat to inject into which doesn't help. I am on novo rapid during the day and levimir at night. If I am running high anything over 10 I don't feel too bad. I check my blood sugar before I eat but quite honestly I have no idea why I am checking it because I then eat and then take my usual dose of insulin. I am fed up of feeling tired and washed out all the time and am currently off work and I know they are getting fed up with me.
I want to go to the diabetic clinic at the hospital where the drs and nurses are dealing with it all day everyday, but uite honestly I have more hope getting an audience with the pope.
Click to expand...


Do you feel you could you tell your GP outright on Friday that you want an appointment at the hospital or is that a non-starter? If not, it might be worth making an appointment at the surgery diabetic clinic and telling them. I know it's not satisfactory to have to make a nuisance of yourself to get what you want, but it might be worth a try.

Another possibility might be to ask for an appointment with a different doctor at your surgery who might be more willing to get you referred to the hospital.

Whatever happens, remember you are not alone.

PS The website Northener mentioned is the one I was trying to remember.
 
Lorraine, just wondered how you got on at the GP's today?
Any luck?
 
Hi Lorraine,

Hope today went well. You definately sound like DAFNE will turn your life around. One thing I learnt with my diabetes and the first hospital I was with is "if you dont ask you might not get", so ask for it directly!!

Always go prepared to your appointment with exactly what you want out of it. Writing down your thought before hand is great advice. Some GPs like ot make out like they are doing you a favour by being in the same room, but its your condition and you have a right to be listened too.

There are some great diabetic specialists out there. Dont be afraid to rquest to be moved, id been under the care of 2 other hospital before i found the fab one im at now!

x
 
Hi Lorraine,

Welcome to the forum...you'll find loads of great help, support, advice and chat here...anything you need just shout and you'll get an answer in a few mins...someone is usually online all the time..Oh and a good old rant is always welcome...🙂
If you need a chat anytime..please feel free to pm me

Heidi
🙂
 
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