Me again… not coping

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EmmaL76

Well-Known Member
Relationship to Diabetes
Type 1.5 LADA
Morning everyone, not been around much. To be honest been too low, had some results back last week, non fasting blood cpeptide 700? Apparently this is fine so no insulin. Antigad still raised but lowered a little from 55 to 46. Had screening for the whole panel of MODY this will take up to 8 weeks although they did say it’s unlikely as my sugars go too high for it to be MODY. I’m still losing weight so have really been trying to eat more ignoring the high numbers, but even if I revert back to low carb my numbers have been creeping up. Energy levels have reached a new low, supposed be be going on holiday on Saturday.. but everything is so much hard work for me. If I could stay in bed all day I would! I’ve been told if my test come back negative my cpeptide will be redone in a year or so and if still ok, that will be that. Type 2 of unusual phenotype . I know there are plenty of people here who seem to thrive on the low carb living but I can’t eat hardly anything and stay in range.. a cup of tea can raise me by 2 to 3 points!! The consultant I have seen actually specialises in unusual breeds and has been for 15 years and said he’s never met anyone quite like me! It leaves me desperate when I hear this. How am I ever going to be treated if the experts don’t know? How much longer will this weak body of mine hold out. I feel bad for my family, they have to look at my miserable face everyday. I used to do so much with the kids… now just making them lunch is way too much effort. I’m sure a lot of this is depression but if I could just find a way to feel better I really would embrace it, but I have tried everything, I really have
 
Ah sorry to hear this @EmmaL76 :(:(:(

Must be so frustrating for you not to have a clear way forward.

What sort of levels have you been seeing? Do the Drs know how hard you have been trying to keep your blood glucose levels in line, and how difficult you are finding it to manage your weight and energy levels?

Have other medications been suggested that might allow you more dietary freedom?

What suggestions are you being offered?

Are you also getting treatment for your low mood and mental health?

Hang in there - we are here for you.
 
everydayupsanddowns said:
Ah sorry to hear this @EmmaL76 :(:(:(

Must be so frustrating for you not to have a clear way forward.

What sort of levels have you been seeing? Do the Drs know how hard you have been trying to keep your blood glucose levels in line, and how difficult you are finding it to manage your weight and energy levels?

Have other medications been suggested that might allow you more dietary freedom?

What suggestions are you being offered?

Are you also getting treatment for your low mood and mental health?

Hang in there - we are here for you.
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Thankyou so much. Well for the last 6 months or so I’ve been able to stay between 5-9 on the low carb diet. Now I’m looking more like 7-11 and if I ate anything carby which doesn’t happen often I would easily be 15s - 20s and by carby I mean maybe half a slice of bread. So I don’t tend to do that. Plus my numbers dont drop like the used to, I could be in 4s all night before now it more like 7. Yes I have told the endo how hard it is and he was very understanding and really determined to help, but until the MODY results are back I don’t think he will suggest any medication. I have been on anti depressants before. I’ve tried a few but one give me insomnia and messed with my monthly’s and the other tinnitus and hyperprolactin. I’m am officially doomed !! I remember you posting a tread a while back, would you swap your type if you could ? Well my answer is a firm yes!! I would swap any type for no type
 
EmmaL76 said:
I remember you posting a tread a while back, would you swap your type if you could ? Well my answer is a firm yes!! I would swap any type for no type
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Yes it’s so difficult for our atypical members :(

Especially when so much healthcare is protocol driven and revolves around ‘evidence based medicine’ which needs you to fit into either box A or box B, rather than being treated as a whole, unique, complex person.
 
everydayupsanddowns said:
Especially when so much healthcare is protocol driven and revolves around ‘evidence based medicine’ which needs you to fit into either box A or box B, rather than being treated as a whole, unique, complex person.
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Yes, seems daft that they can't offer insulin for a while so at least @EmmaL76 can eat sensibly. Finding out exactly what's wrong can surely wait.
 
So sorry you're feeling this way Emma! I hope you get some answers soon.
 
It’s worth remembering that diabetes is not the only cause of hyperglycaemia. Adrenal and pituitary problems can cause it, so if your consultant is baffled, maybe tests for other treatable conditions might be looked at, though my guess is that you are T1 and should be treated as such.

Meanwhile, do what I do and drink tea without milk. It tastes better, and no cabs. Same with coffee.

And lots of (((hugs))), let’s hope common sense prevails. Common sense would have you on insulin.
 
Bruce Stephens said:
Yes, seems daft that they can't offer insulin for a while so at least @EmmaL76 can eat sensibly. Finding out exactly what's wrong can surely wait.
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I do have insulin from before, when I was diagnosed type 1. However the consultant , although didn’t say I couldn’t take it, he was wary about me getting used to it and then having to change back again. My hba1c certainly wouldn’t be high enough if I were type 2 that I would need insulin if you get where I am coming from
 
Sorry to hear that you are finding things so difficult at present @EmmaL76

It sounds like they need to help you manage the levels, and perhaps asking again for insulin, and/or other tests to check for T1, especially as these higher levels are having such a big impact on you both physically and emotionally.
 
Ooops. I was typing at the same time as you Emma.

I hope that you can get things within your targets again, and your team are able to help you with this.
 
mikeyB said:
It’s worth remembering that diabetes is not the only cause of hyperglycaemia. Adrenal and pituitary problems can cause it, so if your consultant is baffled, maybe tests for other treatable conditions might be looked at, though my guess is that you are T1 and should be treated as such.

Meanwhile, do what I do and drink tea without milk. It tastes better, and no cabs. Same with coffee.

And lots of (((hugs))), let’s hope common sense prevails. Common sense would have you on insulin.
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See I have brought this up, i did have some tests that I’m sure are related to pituitary and I think they were ok, but my cortisol was 3x the upper limit of normal. Was suffering with PTSD at the time you see and I always questioned that. Don’t get me wrong I could take insulin if I really needed to, and have done over the last week or so, but my charts get very funky when I do lol xx
 
SB2015 said:
Sorry to hear that you are finding things so difficult at present @EmmaL76

It sounds like they need to help you manage the levels, and perhaps asking again for insulin, and/or other tests to check for T1, especially as these higher levels are having such a big impact on you both physically and emotionally.
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Thankyou for being so lovely… it means so much xx
 
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