Misdiagnosis Stories

[bbyyisa]

Hi everyone : ) I want to talk about a huge problem facing diabetics of all kinds, which is being misdiagnosed! I want to bring awareness to this topic because it's so serious yet nobody seems to care Please share your story of misdiagnosis! I don't want anyone else to suffer symptoms of something that can be treated.

Here's mine
For 4 months I was super sick with all the classic symptoms of T1D. Drinking TONS of water, having to pee like 24/7, complete loss of appetite, weight loss and the worst part was the sleeping. I slept all the time even during class cause I had no energy at all! This caused my grades to drop dramatically and I got super stressed out but I would just go to sleep anyway because my brain couldn't process how to do anything. My parents started to notice and took me to the doctor (MULTIPLE TIMES) first saying I have yellow fever??!! Then telling me I had dry mouth, and some even saying they didn't know the problem even after listing off all my symptoms. Eventually one nurse gave me a blood test the day before Christmas but the results would have taken a week to come in : ( The day after Christmas my mom took me to the ER because I started throwing up anything I tried to eat. After a few samples the nurses told me I was diabetic and in Ketoacidosis. I got hooked up to all these tubes and soon I was taken to a children's hospital because I wasn't 18 yet. This is my favorite part of the story to tell people, I was taken into a kids ambulance covered in stickers and cartoon characters and driven pretty far and I was totally passing out the whole time but we kept hitting bumps and I would fly into the air because they didn't strap me down good. Its hard for me not to laugh thinking about it. I spent 3 days in the hospital but it was a really nice one and the food was so good omg its probably because I hadn't eaten in forever though. I'm all better now and super healthy. You really don't understand how sick you are until you're better.

 

[Scott-C]

Hi, @bbyyisa , I see you've just joined recently, so welcome to the forum!

Yep, you're right: misdiagnosis is an issue.

I had all the typical symptoms about 30 yrs ago, no internet then, so couldn't google them, got taken to A&E, got sent home with a dx of "exam stress and thrush in my mouth", got taken back the next day in a nee naw ambulance unconscious in end stage DKA, I heard later that the A&E doc who sent me home got an absolute kicking from the senior diabetes consultant for turning away the most obvious case ever of T1.

But, got out of it alive, and one of the interns doing the rounds came up and thanked me because she'd read about Kussmaul breathing in end stage dka but had never seen it in real life, so it seems I helped her out with that by doing it for real!

One of the things which has surprised me reading about this site is the number of people who have been initially dx'd T2 and then docs have changed their minds and decided it's T1. And there's also the Lada, late onset thing too.

It's easy to say, oh, these docs are idiots, but there seems to be a lot of subtleties involved which makes saying it's T1 or T2 not quite as simple as it first appears: c-peptide and gad testing is really not as diagnostic as some posters here think it is.

Anyway, you're early in your T1 dx days, there'll be a lot of uncertainties for you, plenty of people here who've been doing it for a long time, been there, done that, so pitch in with any questions if you're unsure about anything!

 

[therower]

@bbyyisa . Welcome to the forum.
Sounds like an awful time for you.
I was very fortunate. Went to my local GP one evening with Type1 symptoms and next day was injecting insulin. Looking back I had a great, no nonsense doctor.
It seems these days that the medical profession are far less prepared to use their initiatives and are prepared to come up with every test known to man prior to coming to a diagnosis. Even when they do decide on a diagnosis they want to leave it awhile to be sure.
Eventually you’ll look back on this episode in your life and smile.

 

[Mad76]

I too was misdiagnosed
Had the classic symptoms. Extreme thirst. Weight loss. Wee all night etc
Went to the gp. Barely looked at me. Told me I was type 2. Gave me pills sent me away.
Got very very I'll a few weeks later. In ICUwith DKA. Eventually diagnosed type 1

Very traumatised still as the Dka was so serious I nearly died.

 

[Marie 2]

@bbyyisa Thank you for the thread started! Because it is a huge issue.

I was misdiagnosed for over 9 years. I had decided to get a meter just because I could? I would test every few months and always was normal, until one morning I was high. I went to the doctor, told him I had an uncle who had type 1 and he did an A1C, which was in the low 5's (30's), said I was just having a fluctuation, don't worry about it. Same thing next year, but now in the higher 5's (40's).

Moved, higher stress, sick, dog that died, numbers shot up within a few months to over the 11's. New doctor, they ran tests I'm now in the mid 8 (60's) A1C. I asked the new doctor if I could be a type 1 as my uncle was and I knew it ran in families, no you're a type 2. Several drugs, all made me sick, put me on long acting insulin. Are you sure I'm not a type 1, again I ask the doctor? I have been a vegetarian since I was 11, I've been a vegan, I swim 75 laps a day, 5 days a week, I am overweight but very active at work too. No you're not a type 1, because the drugs wouldn't have worked on you at all. My numbers are still going up so she sent me to an endo. The endo wanted to put me back on the medications that made me sick. I asked him are you sure I'm not a type 1? I had an uncle that died from being a type 1. No you're not. Neither of those doctors ever tested me, I believe because I was overweight, not hugely but because I was, they assumed I must be a type 2. I refused to go back to that endo. I was not going to go back on drugs that made me sick

Next year, I decide to try a new doctor, an internist, who specializes in diabetes, my sugars went up to over an A1C of a 11 (96). I didn't bother asking about being a type 1 anymore because I didn't question both doctors previously not being right. The new doctor added a fast acting insulin, mind you this is now over 5 years later. I thrived, my numbers immediately dropped to the low 7's (50's). As soon as they hired a new endo she sent me to her. That new endo tested me for being a type 1 without me asking or even me knowing she was. The tests came back that I was positive for the antibodies and was not producing any insulin. She thought I would get upset, I didn't. I was happy, finally it answered why? So I like to tell people if they say they are upset by the diagnosis, that none us us want to be a type 1, but be happy you were diagnosed properly. I now knew I couldn't skip insulin like I did sometimes, I knew I had to have it. I was lucky I was put on insulin fairly early.

And anytime I see something a little off in something someone says, sugars going high when someone ate a salad, they have gone strictly low carb, but their sugars keep climbing or they have the symptoms of someone that is a type 1. I like to tell them to keep an eye out for being a misdiagnosed type 1. 30% of type 1's are still misdiagnosed at first, and a lot of times it is caught when you change doctors.

 

[ert]

Wow. You're lucky to be alive. I had a very good GP, who diagnosed diabetes with chronic stomach pains and the flu and ordered blood tests. She said I was likely to be Type 1 after my 11.6% Hb1Ac, age and BMI of 22, and I was referred straight away to a specialist and diagnosed as type 1 who insisted I needed to start insulin immediately. Needless to say, I was a bad patient and couldn't believe the diagnosis and went to great lengths to avoid insulin, convinced I needed more proof. Initially, I was having some control over my blood sugars with an extreme diet and exercise. That all petered out and I couldn't clear my blood ketones or lower my blood sugars at all and I ended up in hospital. Now I have tested positive to antibodies, and have started insulin, I'm behaving myself and am starting to feel like I've got my life back.

 

[Lamont D]

I was misdiagnosed as prediabetic in 2001, misdiagnosed as T2 in 2009!
After lots of GPs, dieticians, dsns and an endocrinologist, another referral a second specialist endocrinologist in 2013 and a true diagnosis!
Don't blame them, because they never had a clue what was going on!

Makes you think, makes you mad, then you get on with life!
It is what it is!

 

[JAT1]

I too suffered misdiagnosis. The doctor said I was Type 2 based on my age and gave me me the standard variety of meds, none of which worked. He had me do blood work and a urine test and wouldn't tell me my results ! He prescribed a statin 'just in case'. He gave me the requisite referral to see an endo who had me do more blood work. My bs was 35, my hba1c was 17%, never mentioned ketones. Endo said I was Type 1, gave me insulin and 3 months later my bs was always under 10, my hba1c was 4.5% and she wanted me to take meds to raise it ! Meanwhile my liver was producing bad results blood wise and the doctor tells me that I have to see a liver specialist asap. The liver specialist said there's nothing wrong with my liver except it is dealing with a raft of meds I don't need and to stop them all (except the insulin) immediately. I'm just on insulin now and my bs is usually around 6, my last hba1c was 4.2 which worries my endo. But I am sure that Dr. Bernstein & followers would say that was good. I was falling apart with the high blood sugar. My gums were receeding and my teeth were loosening, my eyesight was blurry, I slept and peed almost constantly, I became super skinny. I should probably have gone to the hospital but I was too sick to get up and go. I agree wholeheartedly that you don't realize how sick you were until you get better and better I am now, thank Goodness. The endo gave me a diet to follow that was mostly carbs of course, but then I found out about carb reduction and stay around 100/day now and have never looked back. The whole insulin thing is a small price to pay for staying alive.

 

[Seacrow]

I was diagnosed with diabetes on 6th Jan 2003. I still can't get a definite 'you are type X' out of anyone.

2003 - diagnosed t1 due to extremely high bg and ketones
2004 - diagnosed t2 because I came off insulin
2009 - diagnosed tLADA because GAD test came back positive for antibodies
2011 - rediagnosed t2 since my insulin doses indicated high insulin resistance
2018 - retests show negative for GAD, but c-peptide normal for a non-diabetic

So, at some point I was type one, I had an autoimmune reaction, but I appear to have gotten over it before it took out all of my insulin producing cells. On the other hand, while I have extremely high insulin resistance, my pancreas appears to be ignoring the call for more insulin and not overproducing as in a type two. Can't really blame the doctors for not giving me a concrete diagnosis, but, boy am I beginning to dread filling out medical forms.

Diabetic? Type one or two? - No.
One of the rarer forms then. What's it called? - It's not. It's just me.
Are you SURE you're a diabetic?.....

 

[Resurgam]

The best man at my sister's wedding was supposed to be a type one diabetic.
It was some time ago now, they were wearing platform shoes and flared trousers.
He constantly hypoed, lost his license as a HGV driver, lost his job, marriage broke up, lost his house, not allowed to see his children alone in case he collapsed - fast forward to a few years ago when his consultant retired. He went to see the new one - on the bus as he can't drive, but he's got his bus pass now.
A couple of days later he got a phone call telling him to stop taking insulin. He was not diabetic, probably never had been.
He came to see my sister and brother in law to talk to them, stayed all afternoon and into the evening, walked out of their house and has not been heard from since.

 

[DavidGrahamJones]

Please share your story of misdiagnosis! I don't want anyone else to suffer symptoms of something that can be treated.

I was mis-diagnosed in that I wasn't diagnosed at all, despite experiencing some typical symptoms like tremendous thirsts, frequent urination (which I thought were because of the consumption of water), feeling hungry, blurred vision, slow healing of cuts. In my case I think it was to save on the cost of testing further, I expect I'm wrong though. That was 20 plus years ago.
My non diabetic friends inform me that their doctors seem to be more switched on to the possibility of diabetes. Judging by the way they complain about being sent for glucose tolerance blood tests.

In the case of a misdiagnosis can we tell where the error is made and why?

 

[JohnEGreen]

There are a few diseases that present similar symptoms to diabetes.

Such as

Multiple sclerosis. MS has similar symptoms to diabetes. ...
Stroke. A stroke and diabetes can look quite similar. ...
Glaucoma. It could be diabetes, or it could be glaucoma. ...
Glucagonoma. Diabetes and glucagonoma affect the pancreas. ...
Graves' disease.

 

[Porter]

T1 / T2 here. Question did anyone in this situation get a blood test for antigad antibodies to determine if Type 1 condition is present? I was diagnosed as T2 in 2003 after a fasting blood test. 15 years later after great Hba1C levels, my sugars went sky high. After 6 months a blood test for the antibodies was run. The antibodies levels were severe and it was determined I now had T1.