phalloguy100
Active Member
Going back and reading some of the posts here, I am realizing that my diabetes misdiagnosis experience isn't unique. Perhaps this will help someone else...
I had to overcome systemic racism in healthcare and egocentric doctors at academic centers, and learn an awful lot about diabetes from research and medical association guides, to finally arrive at my correct type of diabetes. It turns out it's a rare genetic type, and I am now on the most appropriate treatment that doesn't send me into hypoglycemia for days at a time.
If my story sounds familiar to you, or you also don't quite seem to fit in the type 1 or type 2 buckets, please consider looking for a correct diagnosis even if it means finding 2 or 3 different doctors. Why? Because a correct diagnosis will guide the most appropriate treatment, before you end up with severe complications. A good place to start is the American Diabetes Association's Standards of Care in Diabetes. It's a publication, updated annually, that summarizes the evidence and strength of evidence for recommendations that include diagnosis, management, technology, education, and more.
This may be come as a surprise to many, but there are over 19 types of diabetes! Although type 1 and type 2 are the most common - and frequently the only ones most doctors know or think they know - there are other types that come with different presentations and symptoms. Even type 2 can be considered more of a spectrum, as research is identifying distinct phenotypes. And types that were thought to occur at certain ages actually occur at any age group.
General classification:
Type 1 - auto-inmune destruction of beta cells in the pancreas (the cells that produce insulin).
Type 2 - progressive loss of beta cell insulin secretion, non auto-inmune, typically alongside insulin resistance and as part of a larger metabolic syndrome.
Specific Types
- Monogenic diabetes - caused by a mutation in a single, specific gene. E.g.: Neonatal diabetes, MODY (with 14+ sub types depending in gene, each with a different first line treatment), etc.
- Diseases of the pancreas (unofficially called type 3c).
- Drug or chemical induced diabetes. E.g.: Steroid-induced diabetes.
Gestational diabetes - occurs during pregnancy and is non auto-inmune.
If you were recently diagnosed: don't fear it. Diabetes is not a life sentence. It's manageable, especially when you get the correct diagnosis and the correct treatment.
Also, diabetes is NOT your fault. Don't let anyone tell you otherwise. You will hear a lot of blaming, and a lot of so-called advice on how to "cure" you. Don't let it get under your skin, and trust your instincts. Do your own research (preferably in medical association sites, academic journals, and PubMed).
If you are dealing with a weird diabetes presentation, like "slim" type 2, lots of hypoglycemia (low blood sugars), large variability (sugar up and down all day), near-normal fasting glucose but high spikes after meals, multi-generation family history of diabetes, etc., that's when you need to start looking for an alternative diagnosis. If your doctor hasn't done that yet, or refuses to, find another doctor.
If you need genetic testing, note that it is very, very difficult to get insurance to pay. It's also very difficult to get a doctor to refer you to genetic testing. Look for genetic counselors nationwide, many of whom charge very nominal fees $100-$200 because they do this to help patients get access to testing. The big labs will have excellent financial assistance programs, and a good genetic counselor will tell you about them.
Finally, as (almost) all types of diabetes eventually need insulin, consider getting on an insulin pump right away. Calculating doses, giving yourself shots many times a day, counting carbohydrates before every meal, and still getting suboptimal values despite all that work gets old really, really fast. Also get on a CGM (continuous glucose monitor) as soon as you get a diagnosis. No doctor should deny access to CGMs to anyone with diabetes. Likewise, no doctor should deny access to - or not offer as an option - insulin pumps to anyone starting on or already using insulin. That's in the ADA recommendations. Again, if you can't get the care you deserve, find a better doctor.
I hope this helps...
I had to overcome systemic racism in healthcare and egocentric doctors at academic centers, and learn an awful lot about diabetes from research and medical association guides, to finally arrive at my correct type of diabetes. It turns out it's a rare genetic type, and I am now on the most appropriate treatment that doesn't send me into hypoglycemia for days at a time.
If my story sounds familiar to you, or you also don't quite seem to fit in the type 1 or type 2 buckets, please consider looking for a correct diagnosis even if it means finding 2 or 3 different doctors. Why? Because a correct diagnosis will guide the most appropriate treatment, before you end up with severe complications. A good place to start is the American Diabetes Association's Standards of Care in Diabetes. It's a publication, updated annually, that summarizes the evidence and strength of evidence for recommendations that include diagnosis, management, technology, education, and more.
This may be come as a surprise to many, but there are over 19 types of diabetes! Although type 1 and type 2 are the most common - and frequently the only ones most doctors know or think they know - there are other types that come with different presentations and symptoms. Even type 2 can be considered more of a spectrum, as research is identifying distinct phenotypes. And types that were thought to occur at certain ages actually occur at any age group.
General classification:
Type 1 - auto-inmune destruction of beta cells in the pancreas (the cells that produce insulin).
Type 2 - progressive loss of beta cell insulin secretion, non auto-inmune, typically alongside insulin resistance and as part of a larger metabolic syndrome.
Specific Types
- Monogenic diabetes - caused by a mutation in a single, specific gene. E.g.: Neonatal diabetes, MODY (with 14+ sub types depending in gene, each with a different first line treatment), etc.
- Diseases of the pancreas (unofficially called type 3c).
- Drug or chemical induced diabetes. E.g.: Steroid-induced diabetes.
Gestational diabetes - occurs during pregnancy and is non auto-inmune.
If you were recently diagnosed: don't fear it. Diabetes is not a life sentence. It's manageable, especially when you get the correct diagnosis and the correct treatment.
Also, diabetes is NOT your fault. Don't let anyone tell you otherwise. You will hear a lot of blaming, and a lot of so-called advice on how to "cure" you. Don't let it get under your skin, and trust your instincts. Do your own research (preferably in medical association sites, academic journals, and PubMed).
If you are dealing with a weird diabetes presentation, like "slim" type 2, lots of hypoglycemia (low blood sugars), large variability (sugar up and down all day), near-normal fasting glucose but high spikes after meals, multi-generation family history of diabetes, etc., that's when you need to start looking for an alternative diagnosis. If your doctor hasn't done that yet, or refuses to, find another doctor.
If you need genetic testing, note that it is very, very difficult to get insurance to pay. It's also very difficult to get a doctor to refer you to genetic testing. Look for genetic counselors nationwide, many of whom charge very nominal fees $100-$200 because they do this to help patients get access to testing. The big labs will have excellent financial assistance programs, and a good genetic counselor will tell you about them.
Finally, as (almost) all types of diabetes eventually need insulin, consider getting on an insulin pump right away. Calculating doses, giving yourself shots many times a day, counting carbohydrates before every meal, and still getting suboptimal values despite all that work gets old really, really fast. Also get on a CGM (continuous glucose monitor) as soon as you get a diagnosis. No doctor should deny access to CGMs to anyone with diabetes. Likewise, no doctor should deny access to - or not offer as an option - insulin pumps to anyone starting on or already using insulin. That's in the ADA recommendations. Again, if you can't get the care you deserve, find a better doctor.
I hope this helps...
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