Very confused (my doctor's confused too)

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KayC

KayC

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First, let me boast about my latest hbA1c, which is down to 4.7% from 5.8%!


BUT

My happy feeling ends here. Now the doctor is not sure about the dx.

I got dx-ed with T1 first. They put me on insulin straightaway. Then the dx changed to T2. I was on Metformin for 3 months. Today. The doctor says she is unsure of the 2nd dx.

Accoding to the doctor, I'm showing atypical presentation. She thinks my case is ....odd.

If I'm not T1 (it's been confirmed by high reading of C-Peptide) or T2, WHAT AM I

I'm temporarily off Metformin from today. I've got another appointment in 3 wks and she will do more tests on me.

I'm now underweight. The doctor says I've overdone low-carb diet wise. She wants me to increase level of carb intake. She and my hub are trying to fatten me up.


Just don't know what to think.:confused:
 
Just wondering how you presented when diagnosed to make them think you had type 1?

whatever it it, your control is great and that is the most important thing. I'm sure it's frustrating not to know though
 
Hi Kay wow 4.7 thats a good hbA there dont think ive seen anyone on here with one that low so i congratulate you on that, it does seem an odd case you have on your hands and if its confusing your doctor then goodness it must be a rare case for her.They are types od diabetes other then 1 and 2 which are MODY(Maturity Onset Diabetes of the Young) and LADA(Latent Autoimmune Diabetes of Adulthood) so maybe that avenue needs to be looked into hun xx

Hopefully you will get some answers soon im sure its very frustrating not knowing so good luck x
 
sofaraway said:
Just wondering how you presented when diagnosed to make them think you had type 1?
Click to expand...

They found keton in my urine. And I wasn't a big person at the time of dx. So they thought I was T1..... Then the keton suddenly disappeared BEFORE insulin treatment, which they thought was impossible. Maybe there was some mistake in tests? We don't know.

I was put on Metformin while I was still injecting insulin, then it seemed that Metformin was working. I came off insulin. Then C-peptide confirmed that my pancreas is still secreting insulin.
 
Hi Kay, diabetes can present a lot of problems when we don't quite fit into the right pigeon holes. They never actually confirmed that I was T1, although that is what is on my records now and I am treated as such. People are so complex and it is quite possible that there are cases that don't fit neatly into the established categories. The main thing is to be getting appropriate treatment that helps to keep your blood sugar levels under good control, which appears to be the case. It's possible that you could be a slow onset Type 1, and have recovered more of your pancreatic function since diagnosis due to improved diet and activity levels.

Look at my case, for example - I had symptoms for two years, got DKA and put on insulin, but since then I have more than halved the amount of insulin I require, indicating that perhaps some of my pancreatic function has returned since diagnosis.

4.7% is very low, but as long as you have been healthy on it and not having hypos all over the place, then it's fine 🙂
 
KayC said:
And I wasn't a big person at the time of dx. So they thought I was T1..... QUOTE]


Sorry i know im being picky but they are some smaller framed type 2s as well.
Click to expand...
 
Hi, 4.7% is a very low HbA1c but as you have lost weight as well could it mean that you need less medication? My HbA1c has been as low as 5.1% since diagnosis and I was never typically diagnosed, didn't present with the usual symptoms or ketones, assumed now that I am Type 1 after looking into MODY and ruling that out, but possibily could still be LADA! I still to this day (10 years after diagnosis) have periods of numerous hypos for no reason my DN thinks my pancreas does still work at times.

I hope you get some answers soon, must be frustrating to not know what's happening!
 
I'm just wondering whether you were on a low carb diet before your first diagnosis? Is it possible I wonder that the ketones were simply because of such a diet? Doesn't the Atkins diet cause ketones? I don't know for sure, just a thought.
 
Thank you all for commenting
Sorry I can't answer to all your questions today.
The real reason why I'm so upset is, the doctor even implied that I MIGHT EVEN NOT BE DIABETIC AT ALL.
So what are you gonna do with my 4 months of emotional rollercoaster (mainly downwards), what have I been doing, what have I been doing for, what is really wrong with me then....Sorry but I can't explain well...
Hope I didn't offend you all, sorry Steffie,
I think I have to have early night.
 
Hi Kay, I'm sure you haven't caused offence. It sounds like your doctor doesn't quite have the level of knowledge necessary to explain your situation satisfactorily so he is speculating. It's silly to imply you are not diabetic, because the tests are pretty failproof if performed properly.

Try not to let things get to you. I hope you have a peaceful and restful night 🙂
 
Steffie said:
Hi Kay wow 4.7 thats a good hbA there dont think ive seen anyone on here with one that low so i congratulate you on that, it does seem an odd case you have on your hands and if its confusing your doctor then goodness it must be a rare case for her.They are types od diabetes other then 1 and 2 which are MODY(Maturity Onset Diabetes of the Young) and LADA(Latent Autoimmune Diabetes of Adulthood) so maybe that avenue needs to be looked into hun xx

Hopefully you will get some answers soon im sure its very frustrating not knowing so good luck x
Click to expand...

Would like to add...well boast...erherm...but when i was pregnant my HBA1C went down to 4.8%. But...i hasten to add...thats where it ends.

Other than that point in my life i have never got it lower than 6 (next aim on the list)! The cheeky DSN said to me when pregnant, why women don't get it that low after pregnancy she will never know...grrrrrr...probably because at that point you are running around with a baby, lacking sleep, eating when you can, trying to juggle and hormones bouncing all over the place 😱

As others have said though KC...hope you had a good nights sleep and we are here at any time. I can understand how frustrated you are with the lack of what seems to be diagnosis and confusion along the way.

Bernie xx 🙂
 
Hi KayC

I understand totally your frustration..you just need to know.
Hope you get a little more clarity soon.
 
Did you have any infections or virus's or stressed etc at the time?

This could raise your blood glucose enough for the body to display diabetic symptoms, as your body can't produce enough insulin to control, once infection/stress has passed you return to normal..

But it could be just your honeymoon period, as insulin therapy was introduced this gave the pancra a rest and it's recoverd enough to maintain control, it's no unkonw for T1's in after the inital stablising of blood glucose not to require insulin for a while or very small amounts until the honeymoon period is over...

Diabetes is so complex and we all react differently to the same situation, no wonder we find hard going at times, and our medics find it harder to give us the answers we looking for..

Keep your chin up
 
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