About to give up!

[suziepoo]

I was diagnosed diabetic in Jan 2010 but GP wasn't sure whether type 1 or 2. Went on tablets for 3 months then he said I had to go on insulin as they weren't working. He also stated I was type 1.
Went to see the DSN, who was useless and gave me no support for my needle-phobia. (Not to mention phoning the day before my holiday to say be careful as I might drop dead whilst away!!). Went back to my GP who said go away and just do it! (Really think he should work for Nike!!!). Went to see different DSN two weeks ago who said she would arrange for District Nurse to do my insulin injections - still waiting to hear back from her about that!
Went to see my new GP today who said I was on the wrong tablets and he didn't think I was type 1. So he's given me metformin to take.
I finally get to see the diabetic consultant next week.
Suppose what I want to know is, how do I determine whether I'm type 1 or type 2 and does it matter? But more importantly, how do I find out if I'm on the right meds? At the mo, I feel fed up, abandoned and tempted to just check everything in the bin and have a big cry!
Any guidance, help etc would be much appreciated!

 

[PhoebeC]

Oh suziepoo, i hope your ok.

They are really messing you around and its not fair. Its not something that can be messed around with.

I suppose if you dont know which you are, buy a blood tester and get testing your blood, that why you can try to control it as best as you can with just your diet for now.

Sorry i can be much more help.

Take care xxx

 

[Steff]

Hi suzie firstly it is dreadful when your left in a quandery and of course you need to be given the right diagnosis and your very important like everyone single one of us so it is very important you are given the diagnosis, type 1 and type2 are diffirent and if your taking the wrong meds then it wont be doing any good and cant be helping you , i had the test a while afgo because i was convinced i was type 1 but the test came back and confirmed i was type 2 , i am not to sure as i have forgotten but i think there are 2 tests a glucose tolernace test and a c-peptide test that will determine how much insulin is being produced.Maybe mention this and see what is said by the sounds of it your care is far from what youe entitled to

Good luck xx

 

[Northerner]

Goodness Suziepoo, I'm not surprised you feel like this - what a lot of unnecessary confusion There are a couple of tests they can do which determine what type you are - the C-peptide test and the GAD antibody test. These determine whether your diabetes is autoimmune, suggesting type 1 and whether you are producing any insulin (c-peptide is produced at the same time as insulin - it it is low, then you are not producing much insulin, therefore Type1).

Once you have the proper diagnosis they can prescribe an appropriate treatment regime. It may be that you are a slow-onset Type 1 (aka Type 1.5 or LADA), meaning that your insulin production is declining but hasn't yet ceased completely. I hope that the consultant visit clears all this up at last and that you can get the treatment you need. What the nurse and your doctor have said to you is disgusting - they should be ashamed of themselves!

 

[thedame]

Hi Suziepoo - another ufortunately typical case of the caring NHS If it is of any comfort, your "treatment" seems to be quite common these days.

Can you tell us what your levels have been - there are lot more experienced people on here who might be able to advise you but you will hopefully get a clearer picture when you see the specialist next week - make a note of anything that comes to mind from comments on here and do come back after your consultation if you want any clarification, a moan or hopefully some good news to share.

To start you off, the basic difference between Type 1 and Type 2 diabetes is that with Type 1 your body does not produce insulin and therefore you need to take insulin. The balance can be a little difficult to sort out but you should get help with this and testing. Type 2 diabetics can produce insulin but broadly speaking they don't process it effectivley so need a bit of help - in not so drastic cases, ie where levels are not too high, then diet and exercise can redress the balance, if not medication is used to assist the body and Metformin is often the first choice - if you haven't been sucessful with it, it could not just be because you are not Tpye 2- by the sound of it you haven't had a lot of advice about maximising it's effectiveness with the types of food you should eat and some testing at home to see how things are going.

Take a deep breath and don't upset yourself- there is always someone here who can try to answer your questions and you have take 2 big steps already - you have changed your doctor and been referred for help and you have come on here🙂 You are allowed to be angry and to have a good old cry but not to be scared by thoughtless acts by those who are supposed to be caring for you. Help is out there

 

[smile4loubie]

Hi suziepoo,

I was told I was type 2 after not taking my insulin and not going into a coma, I was passed from type 1 to type 2 and back again (and including every type in between) for 6 years so I know how you feel.
Try not too feel upset but go back fighting. demand to see someone who knows what they are on about. demand the test that determines which type you are (I never had it done because i didnt take my insulin & didn't go into a coma). demand to speak to the district nurse about your insulin injections. Its your health and they should be doing everything they possibly can to help you =)
I hope everything goes well with the consultant, he's the one to ask about the test. Say your not happy with the way you were treated at the GP's either in a letter or actually saying it to them.
Write down a list of questions you want to ask before you go and ask if you can go through them. Most GP's just don't understand the severity of diabetes in the sence of how it affects you mentally. I really struggled when I was diagnosed and infact was still struggling till I joined here in december/january time (almost 6 years after diagnosis).

You will get loads of help and support here. Its been my lifesaver literally.

 

[lucy123]

Hi Suziepoo. I am really sorry you feel low. If you were to look at my thread last night you will see i felt the same. The good news is I have come to the conclusion we kind of get a better service from the folk on here than the NHS.

Does anyone really understand what the issue is with gp's and nurses, because I certainly felt like they thought I was making a fuss over nothing and that it was my fault I had it as i was overweight (and was definitely told that). If when diagnosing someone as T2, the answer is to just send them away and diet - then why do docs make all the fuss to get you in as soon as possible. I had 5 calls to go in to see the gp and when I got there felt she was disappointed in my weight issue and offered no help.

I have come to find through the forums though that so many people are experiencing this.

What can we do other than scream - i feel I will be so angry when attending my next appointment as I really can't see the point in going if I am just going to be made to feel rubbish and will not receive the care I need - i.e strips and eye tests for one.

Suziepoo - don't give up, keep going. Giving up will only disadvantage you. Keep going and show them we can care for ourselves if they wont- sort of. x

 

[AlisonM]

Hi Susie,

When I was first Dxd they said Type 2 but later changed their minds after doing a Glutamic Acid Decarboxylase (GAD) Antibodies test and a C-peptide test. The result was, they decided I'm LADA or 1.5. I get slightly different pills but am not yet on insulin though others with the same dx as me are. There's a whole load of tests they can do which will give them a clear answer. I'm overweight as well, but as it turns out that's irrelevant in my case. But even so it's not your fault you're overweight, if you're Type 2 it's the diabetes that causes the weight gain, not the other way around. Your surgery staff are obviously stuck in the Dark Ages, like so many of the medical profession it seems. Changing their minds may be an uphill task, but stick with it. Complain to the PCT if you must and perhaps contact the Patient Advocates (there's a list of sites here).

And of course we're always here for you when you need us. I hope you get a definitive answer soon.

 

[Caroline Wilson]

I'm sorry you are feeling so bad, it sounds very frustrating for you. I hope you get things sorted out soon

 

[rossi_mac]

Hey suzypoo, hang in there, hope you can, ask this lot anything they're good!
Hope you can monitor your levels at least so you can keep an eye on things.

Not sure how they decide what you are my GP didn't know, but my dsn was clear what I was.

Hope you get somewhere with the needle phobia too that can't help!

Sorry I can't help anymore, take care,

Rossi 🙂

 

[rspence]

unbelievable

I am not surprised you fele like giving up - what a complete nightmare for you, being told different thingd and left not knowing for sure. rubbish. defintely have a good cry, scream and rage then find a way to help yourself find a way forward for the future.

you may have to keep asking and keep on keeping on until they/you get the right support, but its your future thats being messed around with so go for it and let us know how it goes.

rachel

 

[suziepoo]

well, today's visit didn't help! After waiting 75 mins beyond my appointment time, I was pretty cheesed off when she called me in!
Had to repeat, again, the history of being diagnosed (don't they read the notes?!!) then she said I was type 2 (but that was going off 1 hba1c test and nothing else)! then she said i need to go back on pioglit. as well as glicazide. Oh, and i might as well keep on taking the metformin as it cant do any harm! Hate taking drugs at the best of time, let alone when it 'might' help.
got another appoint in 4 months when, hopefully, I'll have seen the psychologist to help with needle phobia. So taking insulin isn't obviously that urgent!
just fed up with being told different things by different docs. How do I know what is right and what I am? I can't educate people at work if I can't say what I am!! Been a bad day and this just made things worse!
So want some chocolate to cheer myself up!!!!