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Diagnosis confusion!

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RobertaMol

New Member
Hi all,

Never posted in a forum before but thought it would be interesting to know if anyone else has had a similar experience to me!

I'm in my twenties, exercise regularly and prior to diagnosis I didn't have any symptoms apart from hair loss and recurrent thrush. 6 months ago I found myself in hospital with high ketones after a routine blood test found a high hba1c (131) and a new diagnosis of type 1 (or so I thought). I started humalog and levemir with carb counting. However after months of testing and investigation for type 1, mody, general endocrine functions etc. I have recently been told they can't find anything wrong within my bloods and I have good levels of insulin so I am now going to be treated as type 2. I have been on Metformin for a while and have been started on sitagliptin but have been told to stop my humalog completely (no weaning) and see what happens to my sugar levels.

Has anyone else type 2 been misdiagnosed as type 1 first?? After 6 months of trying to carb count and adjusting to bring down my hba1c it's definitely making me nervous to now stop the insulin and hope for the best so was wondering if anyone else has been in this position and has any tips or just some encouragement!

Thanks 🙂
 
Hi @RobertaMol I haven't personally, but I'm aware that there's at least a few people who post regularly on here who haven't had a definitive diagnosis whether it's T1 or T2 as their antibody test were inconclusive. Hopefully one of them will get back to you later with their experiences.
But in the meantime, welcome to the forum, it's a friendly place and I've found it supportive.
Regards, Sarah
 
Hi, great you got all the test particularly the be for MODY as these are not commonly done. This must mean that you doctor was just as convinced that you do not fit the mould for type 2. Yes I have experience of similar, although 43 at diagnosis very fit, very slim no evidence of metabolic disorder etc. initially diagnosed as T2 then changed a couple of times type 1 back to 2 now classed as type unknown. I did have a slightly raised anti gad but not enough for concrete diagnosis. I was on insulin now I manage with diet. Its hard but it gets easier. It must be very unsettling for you to start on insulin then be taken off, I chose to come off as it was extremely slow acting for me. A couple of questions if you don’t mind:
Any history of either type in the family?
Did you have a c peptide test done ?
Do you have access to your antibody results ?
Any related type 2 markers? High blood pressure, cholesterol etc?
Do you sleep ok and how are your stress levels?


Sorry for all the questions, I know it’s confusing and worrying. I’ve been going through this myself since diagnosis. There is plenty of help on here and you are certainly not alone, there are quite a few of us in your situation. Xx

Edit… just noticed you said you had good levels of insulin so that will be your c peptide so ignore that question. I have good levels also
 
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EmmaL76 said:
Hi, great you got all the test particularly the be for MODY as these are not commonly done. This must mean that you doctor was just as convinced that you do not fit the mould for type 2. Yes I have experience of similar, although 43 at diagnosis very fit, very slim no evidence of metabolic disorder etc. initially diagnosed as T2 then changed a couple of times type 1 back to 2 now classed as type unknown. I did have a slightly raised anti gad but not enough for concrete diagnosis. I was on insulin now I manage with diet. Its hard but it gets easier. It must be very unsettling for you to start on insulin then be taken off, I chose to come off as it was extremely slow acting for me. A couple of questions if you don’t mind:
Any history of either type in the family?
Did you have a c peptide test done ?
Do you have access to your antibody results ?
Any related type 2 markers? High blood pressure, cholesterol etc?
Do you sleep ok and how are your stress levels?


Sorry for all the questions, I know it’s confusing and worrying. I’ve been going through this myself since diagnosis. There is plenty of help on here and you are certainly not alone, there are quite a few of us in your situation. Xx

Edit… just noticed you said you had good levels of insulin so that will be your c peptide so ignore that question. I have good levels also
Click to expand...
Thanks for the support! Such a weird time when everyone was convinced I had type 1! I have both types running through my family which is why there was also a strong suspicion for MODY I guess.

Cholesterol is fine and BP is higher side of normal but not enough to be on any medications. And stress (apart from dealing with this haha) is well managed. Bizarrely I felt at my healthiest I've ever been when I was diagnosed!

How do you find managing it with diet? I've been told not to make any changes or restrictions to mine for now.
X
 
Similar to me, I was feeling great like you said. I did have night sweats and continual lady infections tho.
I’m wondering if they have asked you not to make any adjustments to your diet to see what happens next. However many type 2 are just told to eat a normal healthy diet. If your BG numbers are high then you will not be able to bring those down without cutting back on the main culprits, the high carb foods. I’m not suggesting you ignore doctors advise. I just know it doesn’t work.
My diet it tough, not because of the food, ive always enjoyed the type of food I’m eating now, more the weight loss when I was already quite skinny. Lots of good fats are needed !
Do you have any more appointments planned or have they kinda just left you to it now? Xx
 
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Hi and welcome

Kinda in your situation also. Was firstly diagnosed with type 2 with Hba1c of 115 then changed to type 1 on the basis of anti bodies test. C peptide normal. When referred to hospital they didn't diagnose as I have symptoms of both t1 and t2 and both are in the family. Not on any medication and Hba1c dropped to 55 in about 9 weeks with just diet and a bit of exercise so just being monitored for now. You seem to have got to grips with the medication really well and can understand your concerns about stopping you must be nervous in case bs levels rise again.

Anything I can help with please let me know. I am just finding my feet with it all but this forum is great and lots of more experienced people to share their story and advice really is invaluable.
 
EmmaL76 said:
Similar to me, I was feeling great like you said. I did have night sweats and continual lady infections tho.
I’m wondering if they have asked you not to make any adjustments to your diet to see what happens next. However many type 2 are just told to eat a normal healthy diet. If your BG numbers are high then you will not be able to bring those down without cutting back on the main culprits, the high carb foods. I’m not suggesting you ignore doctors advise. I just know it doesn’t work.
My diet it tough, not because of the food, ive always enjoyed the type of food I’m eating now, more the weight loss when I was already quite skinny. Lots of good fats are needed !
Do you have any more appointments planned or have they kinda just left you to it now? Xx
Click to expand...
I was thinking the same, I might keep a food diary so if I have any big spikes I can cut down on the things that cause them. I've gained weight while on the insulin so a little bit of weight loss to begin with wouldn't be a problem!

They've given me a phone appt in 2 weeks and a face to face in 6 weeks to recheck my hba1c and see the effects.
 
richardmillar11 said:
Hi and welcome

Kinda in your situation also. Was firstly diagnosed with type 2 with Hba1c of 115 then changed to type 1 on the basis of anti bodies test. C peptide normal. When referred to hospital they didn't diagnose as I have symptoms of both t1 and t2 and both are in the family. Not on any medication and Hba1c dropped to 55 in about 9 weeks with just diet and a bit of exercise so just being monitored for now. You seem to have got to grips with the medication really well and can understand your concerns about stopping you must be nervous in case bs levels rise again.

Anything I can help with please let me know. I am just finding my feet with it all but this forum is great and lots of more experienced people to share their story and advice really is invaluable.
Click to expand...
Thanks! I hope your good progress continues 🙂
 
RobertaMol said:
I was thinking the same, I might keep a food diary so if I have any big spikes I can cut down on the things that cause them. I've gained weight while on the insulin so a little bit of weight loss to begin with wouldn't be a problem!

They've given me a phone appt in 2 weeks and a face to face in 6 weeks to recheck my hba1c and see the effects.
Click to expand...
I’m glad you got a follow up, to be honest my team have been shocking. There are many members on here who will be able to help more than me with diet suggestions. Mine is a little drastic not for the faint hearted ! One thing is to take it steady, I’m assuming that as you have been on insulin already that your BGs have reduced quite a bit, but we always say on here to be careful reducing carbs. Big drops in blood sugar can make you feel dreadful, best to reduce bit by bit. Keep posting it will help you no end, even if only to feel like your not the only diabetic to break the mould ! Xx
 
Welcome to the forum @RobertaMol

Sorry to hear that your diabetes is being especially slippery to tie down. Not all that uncommon for there to be some question marks if forum experiences are typical.

Hopefully your levels will adjust as you switch from insulin to the metfartin/gliptin combo.

Would be good to keep an open mind going forward, in case your diabetes changes tack again. Some people’s diabetes can be more fickle than others! And in some cases it can take years before it settles 😱
 
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