Misdiagnosed with Type 1 Diabetes?

Type 1 and LADA Parents of Children with Type 1 Diabetes
#1

Hello everyone,

My son was diagnosed with Type 1 Diabetes on March 14, 2018. Since my son’s diagnosis we believed that we could overcome this ailment with diet. Our doctors were always pushing more insulin and more fat, but we disagreed and started a low-to-no fat diet. We are now seeing controlled glucose numbers and low insulin dosages… so, we believe that our son is getting better. If we give our son any kind of fat his numbers become uncontrollable again for days. We asked or doctor for antibiotics and were denied. We asked our doctors if there was any chance that our son was misdiagnosed, and they said.”No, your son does have diabetes!”

Finally we got a second opinion from another doctor and submitted our sons medical records for review. Our new doctor found several things that his Diabetic Care Team did wrong and now she won’t contact us back to give us her full synapses.

What should we do?

#2

You can and should ask for second opinions, however you should be open to the possibility that the diagnosis was correct.

As far as medical records are concerned you are entitled to receive a copy of medical records within 30 days of request. Submit the request in writing and send it certified mail return receipt if the practice is giving you issues. It’s generally faster for another doctor to request the records.

Please be mindful that diabetes is a complex disease that presents itself differently in each person. As many of us here can attest to, doctor led education of patients is often in short supply, underwhelming, and inadequate to effectively manage diabetes for the long haul.

Educating yourself about diabetes, diabetes treatment, and diabetes management is a key priority. Another priority is finding good healthcare providers that are accessible and knowledgeable about diabetes treatment and management.

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#3

I would also caution you to not think of T1 diabetes as something that can be controlled by diet alone. Once you get a firm second opinion (assuming it’s still positive), you need to understand that there is something called the “honeymoon” stage, when a T1’s body is still producing some insulin. Eventually that will stop, and he will definitely need artificial insulin.

You especially might want to check and make sure that anti-body tests were done, as they are usually proof of whether or not a person has T1.

It would be wonderful if this turned out to be a mistake and your son is not diabetic, but please, please, be sure to follow this up and make certain of the diagnosis, because if it is, in fact, T1, ignoring it could be fatal to your son.

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#4

I agree with you. Diabetes is nothing to play around with, but neither is Pancreatitis. Both illnesses must be treated differently and misdiagnosis can be fatal. We were told that if we believed that he really had Pancreatitis we could do an at home test involving giving the patient (our son in this case) 23 to 30 grams of fat. If the patient reacts to the fat test then Diabetes Type 1 can be ruled out. We tried the test and sure enough he had all the signs and symptoms of a pancreatic reaction which a diabetic even in the honeymoon phase wouldn’t have.

#5

We asked another doctor to review our sons medical records and now the doctor won’t return our calls, emails or messages, even after telling us that mistakes were made. Is the doctor scared of a lawsuit? What could be the reason not to contact us back, because she is only making our case stronger!

#6

Your post isn’t quite clear on which doctor is withholding medical records and will not respond to your various inquiries. Is it the doctor that provided the initial diagnosis or the doctor providing the second opinion.

At this juncture, I think it’s most important to focus on getting an accurate diagnosis in a clinical setting by qualified specialists. If I were you, I’d request an appointment with the pediatric endocrinology department at your local children’s hospital. Whatever testing was done at the time of diagnosis can easily be repeated. There isn’t time to waste when your child’s wellbeing is at stake.

Only because you keep mentioning fat in your, please understand that fat can and does affect blood glucose levels in many diabetics due to its long absorption time with peak insulin effect and duration not adequately covering the fat absorption time. That being said, this isn’t the proper venue for a diagnosis.

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#7

The second opinion doctor that reviewed his medical records is the one who won’t contact us back. This after she told us that many mistakes were made by the first hospital and his Diabetic Care Team. Concerning his diabetic team, they denied that his Type 1 diagnoses was wrong, pushed more insulin when he didn’t need it, and said that he can eat anything he wants… just mind the carbs.

#8

I have always been intrigued by the idea of a second opinion, what is its purpose. In my mind it has always been a choice. Now I have have two differing opinions which one do I choose to go with. I have never considered a seconds opinion something to be used in discussions with the first doctor.

Since you seem to still be undecided which is the correct diagnosis I suggest that you consider getting a third opinion and settle this question. Your son must have a correct diagnosis.

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#9

I’ve never heard of anyone being incorrectly diagnosed as Type 1. It is usually the other way and a struggle to get some diagnosed as Type 1.

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#10

Always, always, always, get a second or even a third opinion! It seems a little narrow minded to accept an initial diagnosis from any doctor considering that Diabetes is often misdiagnosed as something else and the other way around. Big Pharma is making $245 billion per year just on insulin. And as you may very well know doctors get paid for pushing medications that patients don’t need.

#11

There have been cases where patients were misdiagnosed with Type 1 Diabetes and they were actually found to have Pancreatitis. Our son can’t ingest any fat and if he does his glucose numbers go crazy for days. 30 grams of fat resulted in 7 days of high numbers, and 5 grams of fat resulted in 3 days of high numbers. The problem is that these doctors are unwilling to admit that they may of made a mistake.

#12

If it is T1, the answer is no, you can’t control it with diet. Further, the body needs insulin even between meals, so if the pancreas has totally ceased production withholding it can lead to diabetic keto-acidosis, resulting in coma and death. It’s extremely risky if this diagnosis is on the table.

Early on, in the so-called honeymoon phase, the pancreas may continue to produce insulin and the output can be quite sporadic, which can cause a lot of confusion, but eventually he’ll need insulin. If the dx is correct.

I don’t see anything about GAD antibody or c-peptide test results in your post. If the antibody test came up positive, that would be a strong indication the diagnosis was right. If those tests weren’t done and you’re having doubts, they certainly should be.

Re fat: normally, dietary fat alone doesn’t cause spikes in blood glucose, though it has digestive effects, so I’m not sure what that’s telling you. Fat can slow the digestion of carbs, but carbs are the issue. If removing fat from his diet actually improves his BG levels irrespective of what carbs he’s eating, that would be something else, I guess, but I don’t know what. I suspect something else is at work.

Re antibiotics, again if T1 is a correct diagnosis antibiotics would be useless, so of course Drs aren’t going to prescribe them for it if that’s what they think he has.

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#13

Does he have any other signs of pancreatitis–abdominal pain etc?

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#14

Yes, he has abdominal pain, sweating and nausea when he consumes anything with fat. After his initial diagnosis we as a family became Vegans. As a result of our diet change he became healthier but his numbers were still off the charts. We are now at day 10 of the low-to- no fat Vegan diet… at 6am he 91, breakfast was 108 and we stepped down on insulin to 10&5 of the 70/30 Humilin. Yesterday he was 120, 155, 132, 88, and 110. His weight has not changed during our experiment.

#15

To make it clear, our son was admitted to the emergency room on the 14th March and we were told that he was DKA. We were given a diagnosis of Type 1 Diabetes about 5 to 10 minutes after his admission. He stayed in the ICU for about 5 days and then 3 more days in the pediatric ward. The whole time he was there the hospital gave him foods high in fat, potato chips, mac&cheese, deep fried chicken nuggets and when said anything about his dietary plan the hospital acted like I was trying to change there whole kitchen. As for GAD tests and IAA tests I’m not sure what they did because I don’t see those tests in his records. Even the second opinion doctor said that “It wasn’t his full medical records.”

#16

@Mr_Fox Are you measuring his Ketones? Inexpensive urine test strips are widely available …

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#17

Yes, every time we take his ketones they are 0-5, so no problems there!

#18

Hospitals are notoriously bad for offering diabetic appropriate food choices.

Regarding the second opinion doctor, it’s clear they don’t have an interest in taking your son on as a patient and frankly I’d be a bit put off by the lack of communication or providing records and wouldn’t want them as a care provider. You’re probably better off finding another provider for a second opinion.

You can request the GAD/IAA and other diabetic blood panel testing to be redone through your pediatrician/family doctor. Get them done at a place like Labcorp or Quest so you can have a record of the test results yourself.

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#19

I think it concerns many of us that you may not be able to accept a diabetes diagnosis for your child, what you are suggesting seems rather unlikely but I guess possible.

It does calm my fears that you are treating his condition and monitoring him closely. I believe you are a wise enough man to continue with his diabetes treatment until his condition is proven to have another cause.

I can see that you will not rest easy until your questions are answered and I suggest you resolve this issue as soon as possible. My suggestion is that you consult with a gastroenterologist for a definitive answer on the pancreatitis issue.

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#20

Thank you!