Me again… not coping

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EmmaL76 said:
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
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My understand was that you had to be eating a really extreme and unsustainable diet in order to achieve that, though, one that doesn't allow you to maintain your weight.

That just seems silly: I'd have thought a sensible approach would be to encourage you to go back on insulin while they do further investigations.
 
EmmaL76 said:
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
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There would be no need to stop insulin if you are decided to be type 2 and achieve a good hba1c whilst taking insulin. I’d just start taking it again in small doses
 
If taking insulin would allow you to eat a more normal diet and help to stop you loosing weight and have more normal blood glucose levels then surely that would be a sensible regime for you if it works regardless of what label is put on your diabetes type. It is not just folk who are Type 1 who have an insulin requirement to manage blood glucose levels.
 
This is so hard to hear. I do hope things can get sorted for you. The doctors need to see you as a whole person and not just as a 'difficult' ( to fit into a box) patient. Individual analysis serms to be pretty scarce nowadays and yet is essential when treating anyone sensibly and effectively.
 
EmmaL76 said:
Thankyou !! I hope you are feeling a little better these days, noticed you have had struggles too xx
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Getting there thanks, it's all a bit of a rollercoaster eh?🙄
 
EmmaL76 said:
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
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I know I keep saying this, but this sounds more like Type 1 to me. What you’re describing is very similar to what I had early in diagnosis. I honestly think you’re a slow-progressing Type 1. Yes, I appreciate I’ve said that loads of times, but I really do think so.

More than that, you can’t live on air, and if you’re starving yourself to maintain ok-ish blood sugars that’s no answer at all. It’s impacting on every area of your life, and it makes me so sad to read about your struggles. I don’t understand why you haven’t been given a supervised more normal diet with moderate carbs and then have your meds adjusted to keep your blood sugar in range. Then you’d be able to eat properly and feel stronger. Whether that means insulin or not doesn’t matter as long as you can eat and are safe. Your diabetes type doesn’t matter either - both Type 1s and Type 2s use insulin. Perhaps you’d only need a bolus insulin; perhaps you’d only need tiny doses; perhaps you wouldn’t need the insulin for every meal or every day - plenty of possibilities.

I’m an “atypical Type 1” but I’d have been lost without insulin and would have struggled. Nobody tested my C Pep then but I was making enough of my own insulin to bring my blood sugar down (slowly). However, the additional insulin injections provided the support I needed to eat well and live well.

You will find the answer - I know you will. Keep on going and know you have us behind you and beside you. XX
 
Inka said:
I know I keep saying this, but this sounds more like Type 1 to me. What you’re describing is very similar to what I had early in diagnosis. I honestly think you’re a slow-progressing Type 1. Yes, I appreciate I’ve said that loads of times, but I really do think so.

More than that, you can’t live on air, and if you’re starving yourself to maintain ok-ish blood sugars that’s no answer at all. It’s impacting on every area of your life, and it makes me so sad to read about your struggles. I don’t understand why you haven’t been given a supervised more normal diet with moderate carbs and then have your meds adjusted to keep your blood sugar in range. Then you’d be able to eat properly and feel stronger. Whether that means insulin or not doesn’t matter as long as you can eat and are safe. Your diabetes type doesn’t matter either - both Type 1s and Type 2s use insulin. Perhaps you’d only need a bolus insulin; perhaps you’d only need tiny doses; perhaps you wouldn’t need the insulin for every meal or every day - plenty of possibilities.

I’m an “atypical Type 1” but I’d have been lost without insulin and would have struggled. Nobody tested my C Pep then but I was making enough of my own insulin to bring my blood sugar down (slowly). However, the additional insulin injections provided the support I needed to eat well and live well.

You will find the answer - I know you will. Keep on going and know you have us behind you and beside you. XX
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Thanks inka, hope you are doing ok these days? I’m feeling a lot better, problem is I get very anxious in the mornings for some reason and I send these long desperate messages and then regret it… thing is you can’t delete them when you have started a tread and I always want to lol.
I am getting a bit more perspective, I looked over my old medical records and realised I’ve been 1 point off pre diabetic since 2006! And had suspected gestational in 1999, so not sure if type 1 could be building since then, possibly LADA ?? That can take decades I hear. Also the MODY lady said that with MODY it’s like the body’s thermostat for sugar is set high, but not usually too high but in periods of great stress the thermostat kinda cranks up so that also sounds a bit like me. So we will see. Also took out my libre as I’ve realised its reading very high for me which adds to the anxiety. I haven’t been under 7/8 on waking for weeks on libre but finger stick this morning was 4.3 ! Thing is this rise on the libre times exactly when I started my iron and vit c supplements about 6 weeks ago?? Anyhow, thanks for the message it mean a lot to know I haven’t put people off talking to me, I know I’m not the easiest person to reason with, but right now I’m feeling a bit more upbeat and trying to keep my big girl pants on! Also actually looking forward to my holiday which is progress … I even have £360 worth of clothes in my online house of Frazer basket, probably won’t buy them, but just looking which is something I don’t ever do anymore, and I used to love my fashion but it’s all progress for me and I will take that xx
 
EmmaL76 said:
Thanks inka, hope you are doing ok these days? I’m feeling a lot better, problem is I get very anxious in the mornings for some reason and I send these long desperate messages and then regret it… thing is you can’t delete them when you have started a tread and I always want to lol.
I am getting a bit more perspective, I looked over my old medical records and realised I’ve been 1 point off pre diabetic since 2006! And had suspected gestational in 1999, so not sure if type 1 could be building since then, possibly LADA ?? That can take decades I hear. Also the MODY lady said that with MODY it’s like the body’s thermostat for sugar is set high, but not usually too high but in periods of great stress the thermostat kinda cranks up so that also sounds a bit like me. So we will see. Also took out my libre as I’ve realised its reading very high for me which adds to the anxiety. I haven’t been under 7/8 on waking for weeks on libre but finger stick this morning was 4.3 ! Thing is this rise on the libre times exactly when I started my iron and vit c supplements about 6 weeks ago?? Anyhow, thanks for the message it mean a lot to know I haven’t put people off talking to me, I know I’m not the easiest person to reason with, but right now I’m feeling a bit more upbeat and trying to keep my big girl pants on! Also actually looking forward to my holiday which is progress … I even have £360 worth of clothes in my online house of Frazer basket, probably won’t buy them, but just looking which is something I don’t ever do anymore, and I used to love my fashion but it’s all progress for me and I will take that xx
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Update … I bought the clothes. Also got some Birkenstocks, they are hideous but I love them !!! Had my nails done. Just hoping for this lovely weather we have been promised for my hols. Thanks everybody. Xx
 
It sounds like you are feeling a bit better today, Emma. Glad to read that and hope you enjoy your holidays! xx
 
sorry to hear you are feeling this way, just remember you are a strong person and know you are not alone. we are always here to help 🙂🙂
 
EmmaL76 said:
Update … I bought the clothes. Also got some Birkenstocks, they are hideous but I love them !!! Had my nails done. Just hoping for this lovely weather we have been promised for my hols. Thanks everybody. Xx
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I love my Birkenstocks too, but have to agree they are not pretty!
 
EmmaL76 said:
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
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Hang In There Momma! I hear you, I’m a T1 brittle and my charts and numbers are all over the place, especially since I had Covid (Doctor said it’s not uncommon). I’ve read that with LADA it’s usually not long before that diabetic will require insulin therapy, usually within a few years. Regardping what you eat,I wonder if ”grazing”(multiple small meals/snacks) might work for you? I do eat mostly veggies n meat, very little carb. I also use my Libre2 a lot to help me gauge my body’s reaction to the foods I eat, plus I keep a log of what, how much, and when I eat, to try and help me figure out what’s affecting my blood sugars. As does studying the graphs for patterns of highs and lows. Having said that, I know exercise like walking my dog can help, as does getting enough sleep. What about a good physical? Been tested for maybe hypothyroidism and anaemia/B12/ferritin/TIBC levels? These can affect your energy and mood levels, believe me. Been there. Anyone having a chronic condition such as diabetes, heart, lungs, endometriosis etc is likely going to struggle with mood and coping with daily challenges. How are your stressors? Finances, marriage, kids, work? Spending time on yourself is also good for you and can help decrease stress- have coffee with a friend, read, knit, whatever works for you. There are also oral medications a T2 can take that can help with glucose levels, so maybe talk to your doctor about those as well. Sometimes a small dose of insulin may be needed, but that’s not the end of the world if it makes you feel more human in body and mind. I was on oral meds when I was first diagnosed ( at 42), but it didn’t help my glucose levels that much. Wasn’t until I switched to insulin I stopped losing weight and got energy and better sugars. Stay courageous.
 
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EmmaL76 said:
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
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Wishing you all the best Emma.
 
Schoolmom said:
Hang In There Momma! I hear you, I’m a T1 brittle and my charts and numbers are all over the place, especially since I had Covid (Doctor said it’s not uncommon). I’ve read that with LADA it’s usually not long before that diabetic will require insulin therapy, usually within a few years. Regardping what you eat,I wonder if ”grazing”(multiple small meals/snacks) might work for you? I do eat mostly veggies n meat, very little carb. I also use my Libre2 a lot to help me gauge my body’s reaction to the foods I eat, plus I keep a log of what, how much, and when I eat, to try and help me figure out what’s affecting my blood sugars. As does studying the graphs for patterns of highs and lows. Having said that, I know exercise like walking my dog can help, as does getting enough sleep. What about a good physical? Been tested for maybe hypothyroidism and anaemia/B12/ferritin/TIBC levels? These can affect your energy and mood levels, believe me. Been there. Anyone having a chronic condition such as diabetes, heart, lungs, endometriosis etc is likely going to struggle with mood and coping with daily challenges. How are your stressors? Finances, marriage, kids, work? Spending time on yourself is also good for you and can help decrease stress- have coffee with a friend, read, knit, whatever works for you. There are also oral medications a T2 can take that can help with glucose levels, so maybe talk to your doctor about those as well. Sometimes a small dose of insulin may be needed, but that’s not the end of the world if it makes you feel more human in body and mind. I was on oral meds when I was first diagnosed ( at 42), but it didn’t help my glucose levels that much. Wasn’t until I switched to insulin I stopped losing weight and got energy and better sugars. Stay courageous.
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Hi Thankyou for your lovely reply. How many carb do you eat per day would you say? It sounds like it’s super tricky for you to manage your diabetes. I do mainly bit and bob during the day with food. Thing is I don’t really seem to get that hungry anymore.. accept when I look at all these Easter eggs !!
Well I was a keen runner before diagnosis but now really struggle to just do chores! This is one of the reasons I want to get this sorted so I can have the energy to run again. I miss it. I’ve had insomnia most my life, but touch wood not too bad recently (apart from last night with hormonal night sweats )
I’ve had many test in the past, I’ve had hyper ferritin for 20 odd years. TIBC and all the other iron markers are usually all messed up too but and total iron is usually just over 6 then it doesn’t warrant tablets so they say, but I have been taking them because it makes me feel lousy. Thyroid been tested at least 3 times in the last 2 years… all good so I’m told.
My stressors … well currently not too bad, but I will admit I’ve had many challenges with my home life. Traumatic would be the best way to describe it. Finances really good, blessed in that department. Work, just in the process of liquidating a company then I’m hoping for a new career but not sure what yet and hoping for the energy for that soon.
I really thank you for the time you took to post. Things were difficult for you too. What does brittle diabetes actually mean for you? I’ve heard it before but don’t quite understand what it means xx
 
Gwynn said:
This is so hard to hear. I do hope things can get sorted for you. The doctors need to see you as a whole person and not just as a 'difficult' ( to fit into a box) patient. Individual analysis serms to be pretty scarce nowadays and yet is essential when treating anyone sensibly and effectively.
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Thankyou.. I do think I am seeing the right guy at the minute. I picked him because he’s close to me, I didn’t actually know he specialises in strange types. When I went for the genetic testing the doctor knew my consultant very well and said I couldn’t be in better hands do I am hopeful xx
 
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