I need help

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AndBreathe said:
Good luck tomorrow, Emma.

If there's any resistance, or "can't do that", then ask for him/her to explain exactly what the blocker is. For me, it's really important to understand stuff, and that means the why nots as well as the why you shoulds.
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I think he will take one look at me and realise I am a desperate woman and hopefully he can help me, I’m trying to quieten down the part of my brain that is saying.. what if he can’t help? What if I’m stuck like this forever?
 
Thinking of you and hoping it goes well today. XX (((HUGS)))
 
Appointment went well. The endo was great and very knowledgable although he did admit he’s never come a case quite like mine before. I had to resist rolling my eyes! So the long and short of it is I could still be any type of diabetic, although my anemia could have raised my hba1c I am definitely diabetic. So he’s set about getting to the bottom of it. Today I have had blood c peptide and he has redone all my antibody testing. He said on paper His best guess would be a particular type of MODY which usually appears during pregnancy (when my issues started) and the fact that it’s been coming and going for years would also point to this however it is rare (I wanna say glycogenic MODY I think that’s what he said) also I don’t have family with the gene but that didn’t seem to put him off the idea. So he has organised for the MODY team to carry out investigations. He said that MODY would be most likely to for my symptoms, could still be type 2 but not by the normal means but he actually thinks that type 1 is unlikely and is confident I shouldn’t take insulin, but he has asked for me to increase my carb intake to 70g from 30g and If my sugars get uncomfortably high then take a couple of units of fast acting. He also checked me for muscle wastage which is a bit borderline so has advised testing ketones which I don’t usually do. I was surprised he didn’t ask me to increase carbs more (but relieved) he said the human body can function quite well on 70gs so that made me feel a little better . So now I wait, but at least I’m a bit further forward xx
 
if i could spam care more than once I would xxx
 
EmmaL76 said:
Appointment went well. The endo was great and very knowledgable although he did admit he’s never come a case quite like mine before. I had to resist rolling my eyes! So the long and short of it is I could still be any type of diabetic, although my anemia could have raised my hba1c I am definitely diabetic. So he’s set about getting to the bottom of it. Today I have had blood c peptide and he has redone all my antibody testing. He said on paper His best guess would be a particular type of MODY which usually appears during pregnancy (when my issues started) and the fact that it’s been coming and going for years would also point to this however it is rare (I wanna say glycogenic MODY I think that’s what he said) also I don’t have family with the gene but that didn’t seem to put him off the idea. So he has organised for the MODY team to carry out investigations. He said that MODY would be most likely to for my symptoms, could still be type 2 but not by the normal means but he actually thinks that type 1 is unlikely and is confident I shouldn’t take insulin, but he has asked for me to increase my carb intake to 70g from 30g and If my sugars get uncomfortably high then take a couple of units of fast acting. He also checked me for muscle wastage which is a bit borderline so has advised testing ketones which I don’t usually do. I was surprised he didn’t ask me to increase carbs more (but relieved) he said the human body can function quite well on 70gs so that made me feel a little better . So now I wait, but at least I’m a bit further forward xx
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That sound very positive and if he is anything like my daughter an 'unusual' case will challenge him to find a solution for personal satisfaction.
 
Watching from a distance but sending you hugs and hopes for a more promising result this time. I hope his keenness to get to the bottom of this will help put your mind at rest and give you a much needed break. x
 
EmmaL76 said:
Appointment went well. The endo was great and very knowledgable although he did admit he’s never come a case quite like mine before. I had to resist rolling my eyes! So the long and short of it is I could still be any type of diabetic, although my anemia could have raised my hba1c I am definitely diabetic. So he’s set about getting to the bottom of it. Today I have had blood c peptide and he has redone all my antibody testing. He said on paper His best guess would be a particular type of MODY which usually appears during pregnancy (when my issues started) and the fact that it’s been coming and going for years would also point to this however it is rare (I wanna say glycogenic MODY I think that’s what he said) also I don’t have family with the gene but that didn’t seem to put him off the idea. So he has organised for the MODY team to carry out investigations. He said that MODY would be most likely to for my symptoms, could still be type 2 but not by the normal means but he actually thinks that type 1 is unlikely and is confident I shouldn’t take insulin, but he has asked for me to increase my carb intake to 70g from 30g and If my sugars get uncomfortably high then take a couple of units of fast acting. He also checked me for muscle wastage which is a bit borderline so has advised testing ketones which I don’t usually do. I was surprised he didn’t ask me to increase carbs more (but relieved) he said the human body can function quite well on 70gs so that made me feel a little better . So now I wait, but at least I’m a bit further forward xx
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Engaging with someone honest (...."I haven't encountered this before....") AND willing to lift the lid to investigate is a massive step in the right direction.

I'm so pleased for you. Are you scheduled to see him again?
 
AndBreathe said:
Engaging with someone honest (...."I haven't encountered this before....") AND willing to lift the lid to investigate is a massive step in the right direction.

I'm so pleased for you. Are you scheduled to see him again?
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He said he would contact me with my results and take it from there. I was quite happy with my treatment. Although I did pay for the appointment today, I’m not paying for all the testing
 
janw said:
Watching from a distance but sending you hugs and hopes for a more promising result this time. I hope his keenness to get to the bottom of this will help put your mind at rest and give you a much needed break. x
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Ahh Thankyou so much. I am worried that it will come to a dead end again but at least everything that can be done is now being done xx
 
He sounds very thorough @EmmaL76 I’m so pleased the appointment went well. Stay positive - this one sounds like a keen sleuth, so hopefully you’ll have some answers. XX
 
EmmaL76 said:
He said he would contact me with my results and take it from there. I was quite happy with my treatment. Although I did pay for the appointment today, I’m not paying for all the testing
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When I have paid for consultations, I tend to look on them as investments, rather than bills.

My Endo asked my GP to order up about 50 (I kid you not) tests when I first encountered him - mainly due to the very significant number of autoimmune conditions in my immediate family. He was certain I'd have something. Nope.

I feel very fortunate to have him on my side. When I see him, he always asks what else is going on in my life too. Of course, he's not riveted by the frippery of my day to day life, but I feel he's more asking about any stressors, or excitement going on that could impact my health.

I've recently had a letter moving my May review to October. The letter was followed a few days later by a call from his secretary to ensure I had enough medication to last, or organise a script. It feels like that's how it should be.

Hopefully, you've also got a keeper.
 
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