Unknown type

[Senada]

Hi everyone,

Last year, after a routine blood test, I was diagnosed with diabetes and posted about it on this forum. Now, a year later, not a single doctor has been able to tell me what type of diabetes I have. I've struggled a lot with my diagnosis and a big part of that was (and still is) not knowing my type and doctors telling me that I'm a "special case". I'm posting my story here to see if anyone has had a similar experience or can help me with finding an answer.

A bit more about me; I am 25 years old, normal weight, active, my HbA1C has been hovering between 58 (7.5%) and 51 (6.8%) without medication, so not extremely high.

I've tested negative for anti-GAD and monogenic diabetes (MODY 1, 2, 3). C-peptide has always been normal. I don't have PCOS or auto-immune diseases. My dad has type 2, his brother LADA, and my granddad also had LADA. All diagnosed above the age of 50.

Doctors have no clue what could be the cause.. when my HbA1C was 58 they first put me on glimepiride because they suspected MODY. When both anti-GAD and MODY were negative they still suspected LADA and took me off glimepiride and put me on long and short acting insulin. I quickly realized how much of an impact that had on my life and, combined with having to move far away for my studies, I stopped using insulin and lost contact with my hospital.

After that, things went downhill mentally. I was in denial and became depressed. Eventually I decided to pick things up again and get a second opinion at another hospital. Sadly they also didn't have a clue and wanted to put me on gliclazide regardless of the type. I have refused any sort of medication until they can actually give me a proper diagnosis, so that I have an idea about what I can expect from the future (diabetes wise).

Normally you don't want to get a label, but it would really give me peace of mind to know my type.

After asking for more tests I will now be tested for IA2 antibodies, but I don't expect them to be positive. I don't know. Maybe time will tell... I've just found it so incredibly frustrating to know I have diabetes, but not being able to identify with anyone or anything for support because I'm not type 2, type 1, MODY or type 1.5. But it has to be one of these!!! Right? It matters to me because all types have different treatment plans that work best for them, and all can affect your life in different ways..

Is there anyone with a similar diagnosis story? I have a hard time finding anything about this on the Internet.

Thank you for reading this wall of text.. I'm glad a forum like this exists!

 

[ButtterflyLady]

Hi and welcome back.

I don't understand the details of diagnosing the different types so I can't help you there I'm afraid. But I "get" how important is is to have a diagnosis and I hope you get one soon.

In addition to the diabetes types you mentioned, there is also reactive hypoglycaemia, which doesn't show up in HbA1c tests but does in OGTTs. Some people have RH and a form of diabetes, others have just RH.

Personally I am not keen on any of the diabetes meds except metformin and insulin. I also think that whatever type of diabetes you have, a low carb full/moderate fat diet can help. Also with whatever type you have, insulin might be a good option for you, and the type of regime you have is all-important.

All of these viewpoints are explained at the website Blood Sugar 101. There is also fairly good info about LADA and MODY there.

In particular, these pages about insulin and drugs may be of interest to you:

http://www.phlaunt.com/diabetes/15478720.php

http://www.phlaunt.com/diabetes/17977284.php

I believe it may be possible for you to get your diabetes under control without knowing which type it is, through diet and maybe also insulin.

Metformin seems to be more appropriate for people carrying extra weight, but it might also help a normal weight person because it has several other benefits:
http://www.phlaunt.com/diabetes/14045911.php

 

[Lamont D]

Hi everyone,

Last year, after a routine blood test, I was diagnosed with diabetes and posted about it on this forum. Now, a year later, not a single doctor has been able to tell me what type of diabetes I have. I've struggled a lot with my diagnosis and a big part of that was (and still is) not knowing my type and doctors telling me that I'm a "special case". I'm posting my story here to see if anyone has had a similar experience or can help me with finding an answer.

A bit more about me; I am 25 years old, normal weight, active, my HbA1C has been hovering between 58 (7.5%) and 51 (6.8%) without medication, so not extremely high.

I've tested negative for anti-GAD and monogenic diabetes (MODY 1, 2, 3). C-peptide has always been normal. I don't have PCOS or auto-immune diseases. My dad has type 2, his brother LADA, and my granddad also had LADA. All diagnosed above the age of 50.

Doctors have no clue what could be the cause.. when my HbA1C was 58 they first put me on glimepiride because they suspected MODY. When both anti-GAD and MODY were negative they still suspected LADA and took me off glimepiride and put me on long and short acting insulin. I quickly realized how much of an impact that had on my life and, combined with having to move far away for my studies, I stopped using insulin and lost contact with my hospital.

After that, things went downhill mentally. I was in denial and became depressed. Eventually I decided to pick things up again and get a second opinion at another hospital. Sadly they also didn't have a clue and wanted to put me on gliclazide regardless of the type. I have refused any sort of medication until they can actually give me a proper diagnosis, so that I have an idea about what I can expect from the future (diabetes wise).

Normally you don't want to get a label, but it would really give me peace of mind to know my type.

After asking for more tests I will now be tested for IA2 antibodies, but I don't expect them to be positive. I don't know. Maybe time will tell... I've just found it so incredibly frustrating to know I have diabetes, but not being able to identify with anyone or anything for support because I'm not type 2, type 1, MODY or type 1.5. But it has to be one of these!!! Right? It matters to me because all types have different treatment plans that work best for them, and all can affect your life in different ways..

Is there anyone with a similar diagnosis story? I have a hard time finding anything about this on the Internet.

Thank you for reading this wall of text.. I'm glad a forum like this exists!

Yes been there wore the etc.
I have reactive hypoglycaemia, but you don't mention hypos in your post.
Some docs and even consultants struggle to diagnose various forms of blood glucose disorders. It might be your thyroid! It could be a metabolic disorder!

The thing that I do know is that no matter which diagnosis you eventually get, low carbing will help with all of them! If you have a problem with a digestion problem, and that covers all the above, then eating what agrees with you is the treatment.

 

[Lazybones]

As Nosher8355 says your problem might well relate to something that isn't within the conventional pattern for us diabetics. Your HbA1c is the critical factor here and a reading of 58 in the new measurement system we are using here in the UK and else where in the world would indicate TOO high a B/G level and that Diabetes is present.
It's possible to be in several categories of diabetes all at the same time, and if you look into the subject further you will find many more types of diabetes that aren't generally even mentioned. There simply aren't any hard defining boundaries and many types are known to even relate to the individuals diet and where in the world they live.
Diabetes can also result from a whole host of medications, generally as a side issue to the medication and as Nosher3855 rightly says, it can even relate to a hormone imbalance resulting from either the Thyroid or Pulpuratry Gland miss-function.
What ever is the cause going on a controlled Low Carb diet should greatly help, but I'm still amazed that as yet no-one in the medical profession seems to have the answer to your fundamental problem.
Please let us know how you get on and what the final outcome is.

 

[AndBreathe]

Hi everyone,

Last year, after a routine blood test, I was diagnosed with diabetes and posted about it on this forum. Now, a year later, not a single doctor has been able to tell me what type of diabetes I have. I've struggled a lot with my diagnosis and a big part of that was (and still is) not knowing my type and doctors telling me that I'm a "special case". I'm posting my story here to see if anyone has had a similar experience or can help me with finding an answer.

A bit more about me; I am 25 years old, normal weight, active, my HbA1C has been hovering between 58 (7.5%) and 51 (6.8%) without medication, so not extremely high.

I've tested negative for anti-GAD and monogenic diabetes (MODY 1, 2, 3). C-peptide has always been normal. I don't have PCOS or auto-immune diseases. My dad has type 2, his brother LADA, and my granddad also had LADA. All diagnosed above the age of 50.

Doctors have no clue what could be the cause.. when my HbA1C was 58 they first put me on glimepiride because they suspected MODY. When both anti-GAD and MODY were negative they still suspected LADA and took me off glimepiride and put me on long and short acting insulin. I quickly realized how much of an impact that had on my life and, combined with having to move far away for my studies, I stopped using insulin and lost contact with my hospital.

After that, things went downhill mentally. I was in denial and became depressed. Eventually I decided to pick things up again and get a second opinion at another hospital. Sadly they also didn't have a clue and wanted to put me on gliclazide regardless of the type. I have refused any sort of medication until they can actually give me a proper diagnosis, so that I have an idea about what I can expect from the future (diabetes wise).

Normally you don't want to get a label, but it would really give me peace of mind to know my type.

After asking for more tests I will now be tested for IA2 antibodies, but I don't expect them to be positive. I don't know. Maybe time will tell... I've just found it so incredibly frustrating to know I have diabetes, but not being able to identify with anyone or anything for support because I'm not type 2, type 1, MODY or type 1.5. But it has to be one of these!!! Right? It matters to me because all types have different treatment plans that work best for them, and all can affect your life in different ways..

Is there anyone with a similar diagnosis story? I have a hard time finding anything about this on the Internet.

Thank you for reading this wall of text.. I'm glad a forum like this exists!

Hello there. Clearly where you are, in terms of a refined diagnosis isn't a comfortable situation, and I do feel for you.

Having declined all medication, can I ask you what you are doing to manage your condition at the moment, because it doesn't make too much sense to just do nothing, when your HbA1c is running higher than the accepted levels for non-diabetics?

Do you carry any weight that could be contributing to your situation, in terms of insulin resistance?