you can check to see if your endo is a member of the AACE here (mine is)
https://www.aace.com/resources/find-an-endocrinologist
or the endocrine society here
A1C of 13.5 and the endo thinks thatās not super high? Mine was 15+ when I was diagnosed and my BG was 1140. You donāt mention your age, but itās also possible you are LADA or late-onset Type 1. It still requires insulin, but not generally quite as much as an early-onset Type 1. This is sometimes half-jokingly referred to as āType 1.5ā because sometimes meds can help reduce insulin dosage and take advantage of whatever insulin-producing capabilities your body may still have. Iām not sure this new endo is very up on things, but the next few months will tell the story.
I have been diagnosed with type 2 and had an anti GAD test. My results were 38.1 on that! I should be a type 1. It runs in my family too! Iām thin and was 50 yrs old when diagnosed. I want insulin because Iām tired of starving! I am 5ā 6" tall and weigh about 106-110. My A1cās are usually 6.5-6.6 so he thinks Iām doing great. I tell him what I eat and it is good food but I get really high numbers afterwards. I must have some lows at night because they arenāt low after breakfast, thatās for sure! It takes about 4 hours to get down to normal. Anyway, I want insulin so I can eat and Iām tired of being this in-between type nobody understands! Sometimes I feel like just eating normally for 3 months to prove my body needs insulin but I donāt want the problems it could cause to my body! This is so hard.
is there any possibility on changing your endo? this sounds horrible!
I do think it would be nice to deal with doctors by having a conversation. And I wish doctors would listen to patients. There is ample support for anyone with T1 to be treated insulin. If you donāt want to just change doctors you can use the āWrath of Godā approach. You have T1. Here is what the AACE says (see page 11):
3.Q5. How Should Glycemia in T1D be Managed?
R20. Insulin must be used to treat T1D (Grade A; BEL 1).
AACE is the professional society of clinical endocrinologists. Next visit to your doctor, print out these guidelines and write him a short letter asking to be treated consistent with the standards of care. Then state that you hold him liable for a specific decision to deviate from the standards of care. State that you have specific concern about dangers to your health and life should you suffer an adverse event (like hospitalization and DKA) due to such a decision. And you are writing this letter and asking him to enter it into your formal medical record to make your concerns clear and formally recorded. Donāt mention the ācc: My Friggin Attorney,ā he will see that right away.
If he doesnāt immediately start you on an appropriate insulin treatment plan you donāt want him as a doctor. And be aware he may fire you as a patient, but you wouldnāt want an arrogant dangerous doctor anyway.
ps. I used this approach when dealing with a cardiologist and their efforts to statinate me. He immediately caved.
Even the specialists up here all have deep ties to Medtronic and will push them before any other pump, from what Iāve seen, kenrick. Medtronic just had much stronger sales network up here and their reps have been established for decades longer up hereā¦
I agree with JC 14. Trust your gut and get a second or third opinion if necessary.
Remember that itās possible to have both a pancreas no longer producing insulin (type 1) and insulin resistance (type 2) at the same time. Thereās no standard name for this combination, but itās often called double diabetes or type 1.5. Could he be misinterpreting what to do with this combination? If so, go to another endo.
Iāll repeat this, as Iāve posted it several times elsewhere:
There is no such thing as ādouble diabetesā or āhaving Type 1 AND Type 2 at the same time.ā
One may have Type 1 AND have insulin resistance. But it is still Type 1.
One may have Type 2 AND require insulin. But it is still Type 2.
To add to the above, Type 1 refers to autoimmune-acquired diabetes. Type 2 is, for all intents and purposes, ādiabetes of unknown cause / poorly understood etiology.ā Type 2 is essentially āa diagnosis of exclusion,ā which Brian has addressed thoroughly and eloquently elsewhere on this Forum.
And āType 1.5ā most often refers to LADA (Latent Autoimmune Diabetes of Adulthood) which is technically Type 1 because it is an autoimmune disease.
Then there is MODY (Mature Onset Diabetes of the Young) and Monogenic Diabetes and Gestational Diabetes and perhaps other types which I will not now address.
I didnāt invent the diabetes classification system, nor do I always agree with it. But I still cringe whenever someone posts something that is medically incorrect, mainly because it further confuses a very misunderstood/poorly understood disease.
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I may be taking this out of context, but for post honeymooning Type 1s, this is not true.
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No, it isnāt.
For a true Type 1 (busted pancreas, NO endogenous insulin at all), even if you ate the strictest paleo diet imaginable and never consumed one single carbāwhich is pretty near impossible, but letās just stipulate it for the sake of discussionāyour body will still manufacture its own carbs, internally, from the food you eat.
You cannot live without insulin. Period. Full stop. Either the pancreas must make it for you, or you must get it somewhere else.
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In the purest sense thatās true, however many type 1s still produce some insulin, just not enough. Particularly with LADA type 1, this stage of producing detectable and meaningful amounts of insulin (but just not enough to meet the bodyās needs) could go on for years (Iām st 5 years myself). In those cases they could survive without insulin for quite some time but the real question is if itās the smart idea to try or not or to be on insulin as soon as possible. In my opinion the better plan is to be on insulin ASAP to supplement your bodyās diminishing resource even if one could survive without it.
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Quite so. The difficulty arises from the unpredictability of it all. (Gee, thatās diabetes in a nutshell, isnāt it . . .) Some days very little exogenous insulin will be needed, other days more. So there are going to be those occasional highs. The key word there is āoccasionalā. The more occasional, the better.
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If a type one eats nothing he/she needs injected insulin. In theory one could eat nothing take no insulin but take canagliflozen have good blood sugar readings but go into diabetic ketoacidosis.
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I am going to try to find a better one that will recognize me as a type 1. I hope I can find one that will let me test before and after every meal too. I had to really work hard to convince my doctor I have now to allow that. He was only going to have me test 1 time each day!!! What the heck? Right?
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I honestly donāt get this. What skin off of a doctorās nose is it how many times a day we test? It isnāt THEIR fingers being pricked! I have never understood doctors wanting to discourage patients from testing as often as their insurance will allow.
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@tucsonmo, as I posted in another thread, you should either get correctly diagnosed/treated by the medical professional you are seeing, or find someone who will. You have been given some excellent advice here. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (ADA/WHO), as published in American Diabetes Association medical journals, says, āAlthough the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.ā Meaning, if you are autoantibody positive you donāt have Type 2 diabetes. Sadly, we have to be our own best advocates within the medical system, because particularly in the case of adult-onset Type 1 diabetes, doctors tend to not advocate for our best health. Best of luck to you!
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It would be easier if the doctor actually acknowledged me as a type 1 but he doesnāt. A lot of people think Iām a type 2 because it was so late when it started. It is so frustrating and misunderstood! No matter what I say they still say Iām a type 2. They are waiting for some terrible thing to happen then they will probably classify me as a type 1. I donāt want the damage just to prove that. The doctor was only going to let me test once a day at first! I have a father and sister that are type 1 so I know how many times a day I should test to know how to maintain my disease. I talked him into 8 times a day. The insurance was ok with it so why should he care? With out testing I would be a disaster! I donāt feel any different when I have high numbers unless itās REALLY bad then I feel hot. I usually donāt get the usual symptoms of high blood sugar like most people. Anyway, I am going to try to find someone that is more educated and open minded about diabetics. Thank you for responding to my post. Iām new here and I finally feel like people care and understand!
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tucsonmo,
You obviously know what you need to do and how you should be treated. I canāt believe your Drs are so dense about your treatment. Obviously if you were eating normally your sugars would be soaring. You must be skin and bones at your weight and height - and theyāre not worried.
Got to wonder how many other patients they are mistreating, and at what great life quality expense.
Find a new Dr. Make sure you bring your antibody results. Insist on insulin! Worst case, in the meantime (and Iād never advocate self treatment - though Iāve done it myself), you can get generic insulins over the counter I understand.
Please let us know how you go. We are with you on this journey.
If your car wouldnāt steer properly and kept stalling, and the mechanic told you your only problem was misfocused headlights, youād find another mechanic.
The stakes are much higher here. Find another doctor.
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