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Misdiagnosis and Type 2

SamMac

Member
Messages
11
Location
London
Type of diabetes
LADA
Treatment type
Insulin
I wonder, does a misdiagnosis in adults of T2 when in fact it's T1 or T1 LADA happen fairly frequently?

I was diagnosed on 27 October as T2 but as my BMI is normal (well, normal-ish; in fact I'm too thin and have been losing weight despite an enormous appetite) I kept being called "atypical". But my diabetic nurse seemed to have no curiosity/desire to interrogate things beyond telling me to cut out fizzy drinks and fruit juice, prescribing Gliclazide and booking me into DESMOND.

I'm 46. At diagnosis my blood sugar was over 20; my HbA1c was 12.2.

A couple of weeks later a truly wonderful clinic nurse, who just happened to overhear at my GP surgery that an appointment with my diabetic nurse had been cancelled without my knowledge due to an administrative error, called me into her room. She was very concerned about me and my diagnosis. She arranged an appointment with a diabetes consultant.

Now I've been to the hospital unit and had all the blood tests (results will take several weeks) but their best guess is T1 LADA. They were utterly brilliant in the diabetes unit. I'm off Gliclazide and on insulin. I suppose in the scheme of things four weeks isn't very long but I think if the nurse hadn't happened to pass as I was having a bit of an argument with a GP receptionist, I'd still be under the assumption I was definitely Type 2, and on medication for that.

Anyway, life is a bit confusing these days but this forum has been extremely helpful, and so far I have managed to control my blood sugar through medication and changes to diet, and I'm beginning to build my knowledge of both types (or three types if you include LADA) in anticipation of eventually knowing for certain which I am.
 
I don't know if it's frequent, but reading these forums I think it's fair to say that misdiagnosis (of all types) is not uncommon. There is a surprising lack of knowledge amongst medical professionals generally.
 
Hi there. How's the piano playing? Fingers not too sore?
SamMac said:
I'm beginning to build my knowledge of both types (or three types if you include LADA) in anticipation of eventually knowing for certain which I am.
Click to expand...
Maybe I should do the same, since my experience echoes yours. Whatever type I am, I plan to carry on with my version of LCHF and try not to lose any more weight.
It's depressing how often we find things out by chance.
Or it's really good synchronicity, if you like.
 

Hi. Thanks for remembering!

Well, I sat an exam last week, so not too bad. If I didn't pass, I don't think I can blame diabetes. It's far from ideal but I rub the fingers with Savlon after each test. I'd still prefer to test elsewhere but all the advice I seem to be getting says the best place is the sides of the fingers.

And yes, finding things out by chance is life I suppose. I'm very thankful to this clinic nurse, who went above and beyond the call of duty, and followed it up with a phone call to me.
 
Hi and welcome. It's actually fairly common and I've been thru it. I'm still listed as a T2 as my GP didn't believe you could become T1 other than as a youngster. Eventually I was put onto insulin 1-2 years later than I should have been. Around 15-20% of 'T2s' are not overweight and I suspect a good chunk are mis-diagnosed LADA. The latest NICE Guidelines now say that if you are thin at diagnosis then T1 should be considered. If you are thin at diagnosis and/or have lost weight, have low-carb diet and don't respond to the 'set' of tablets then you are almost certainly not a T2. In some ways the diagnosis doesn't matter as long as you go onto insulin when needed. Are you on Basal/Bolus? If not do ask for that if your blood sugar still isn't well-controlled.
 
I've often wondered if I'm not very early stage LADA. Thin on diagnosis, absolutely no family history whatsoever & none of the other metabolic markers. Figure I'll just keep doing what I'm doing - low carb/exercise/testing - & if the wheels fall off I'll go back for further investigation.
 

Hi SamMac

Yes I think maybe it more common than we realise
I was taken into hospital in March this year (suspected heart attack at 43!) during my week stay I was told I was Type 2 but put straight onto insulin (based on the fact they were still undecided on heart)

In between march and May metformin was added. I would be considered by GP "text book T2" Over 40, Overweight (BMI 31 on diagnosis, sadly no sign of sudden weight loss pre diagnosis ) and inactive.

Finally diagnosed in May as very definitely T1 through full blood tests and put onto basal/bolus regime so you see its not always as clear cut as it would seem.
Sounds as though you are getting to grips with it far quicker than I did after 4 weeks though so well done to you and keep reading as much as you can on here as it really helps to sort out the confusion. The support is just amazing too.

Rachel
 

Hi @Rachette, sorry I missed this reply from months ago! I still don't have a definitive diagnosis but the diabetes unit thinks I'm Type 1 so have been treating me as that; I'm on insulin. I'll know next week. There is no sign of retinopathy so I'm relieved about that as I've been having troubles with my vision. Hope everything's going well with you and thanks for the "well done". I don't really know if I'm doing anything right to be honest but my levels seem quite good at the moment and I agree about this forum. I don't know what I would have done without it, to be honest!
 
It was the same for me a chance remark from 2 different medical people at different times one said I did not fit with type 2 as not insulin resistant at the moment so more 1.5 or another group not yet identified the other said I was lada or 1.5 I but I don't think any bodies ever changed my official diagnosis I am on basal bolus and finally have good help and support from diabetic nurses at the hospital who help and advise me when I need them I carb count have done the course and feel looked after after a long time floundering with no help at all
 
I was undiagnosed as T1. Put on type 2 meds which made things worse. Sudden severe weight loss. Finally admitted to hospital, got right on insulin and haven't looked back.
My (EX) Dr said my GAD level indicated I was T1 but I was too thin so it wasn't possible! Ridiculous. I was quite close to death before I got insulin and all is well ! Glad someone caught it!!!
 
Hi @SamMac
I was diagnosed as type two, and obviously wasn't.
But no blame could I put on my GPs, as it take tests to actually diagnose what I have.
The lack of knowledge amongst our health care providers is scary, even though they do their best but the system does work against them.
The number of RH ers, that have a similar story is the reason why, our condition is so rare. I'm convinced that there are so many out there, that have been misdiagnosed.
 
It's great to hear you're well and healthy now Sam! I was diagnosed t1 about 9 months ago. It was pointed out by my optician that my prescription was worsening rapidly. He suggested I see the GP. That morning, my blood sugars reached 39.5. I was diagnosed with t2 by a junior doctor whose reasoning was that I wasn't in DKA. I am a 17 year old active and health conscious young girl! Of course this was checked and corrected by her supervisor, but it's always shocked me that that was all she seemed to need to diagnose t2. I did the FEFI course this summer and met loads of t1s, only two of whom had ever experienced DKA. I also have a friend of a similar age who was misdiagnosed for a year before starting insulin!
 
I was finally diagnosed, after 13 years as a type II diabetic, as being type IA in March of this year. I was initially prescribed Gliclazide, to which it was later insisted that I take Metformin. In spite of my complaints that Metformin made me depressed, and the empirical work that I undertook to confirm that it was the drug that affected my mood, my diabetologist poo-pooed my view and wrote an extremely uncomplmentary letter to mr GP about me, a copy of which that GP sent to me. Consequently and unilaterally, I discontinued Metformn and felt much better since then!

In 2011, as a result of another GP's negligence, I required amputation of a little toe and it's attached meta-tarsal. No apology gained for that either. This March, I was admitted to hospital after a week of illness, during which I had been able to neither eat nor drink. My admission diagnosis was diabetic ketosis-acidosis but, on investigation, proved to be starvation ketosis. From a BMI of 22.6 in December 2015, I had dropped to one of 19.5 on admission. My new endocrinologist then remarked that he had never seen a type II diabetic with my body form and investigated the issue, finding me to be type IA. Since then, I have maintained good blood glucose control on 160 mum Gliclazide bd and regular exercise. My BMI is now 23.6 and I feel healthier than I have for years.

My confession? I am a senior medical practitioner and, for 13 years, I have allowed a bunch of mediocre practitioners to ruin my health. I tried to be just an ordinary patient who didn't interfere with my management until the conflict about Metformin. My experience in challenging my medical attendants? Always frustrating and sometimes angering. My advice to others? If it doesn't feel right, it probably isn't! Be involved with your treatment and challenge all that seems wrong or has not been properly explained to you. That's the advice I have always given to my patients and I still puzzle about why I waited so long to exercise the very same advice myself.
 

The thing I most admire about your post is your admitting to be a healthcare provider!
Isn't the realisation that the trust you put into your doctors, nurses and other health care professionals is sometimes misplaced.
The reason why this forum exists is because the advice generally given to new diabetics or those that have similar metabolic conditions, have been given wrong and dangerous dietary advice and the reliance on drugs to treat a condition where lifestyle is so important.
I was lucky, I found an endocrinologist who knew about my condition and did the tests, when, my first endocrinologist and all my GPs and dsns, didn't have a clue!
 
@SamMac
T2 is more a diagnosis of "Diabetes but I don't think it is T1" so wrong diagnosis is possible. If you show the symptoms of T1, then the important thing is to get effective treatment.
 
Hey Sam,
I am 74 yr old and I was Diagnosed at 70yr Wrong until I researched I too am LADA or 1.5 ........BUT......... I found that after 8 months I could NOT control Glucose..I NOW use a Medtronic Pump On it for an Year as of July 1st.....BUT...... I am now have Lows and Sneaky Highs...........BUT....I am now getting the 530CGM Pump with the SENSOR Also.......Realize that I have Pump on one side of stomach and Sensor on the other. But this Will allow me to Lead a more active Life. At Present a trip to Walmart .....Because its like a Huge store (football field) I drop and if I don't feel it before I reach 60 that at 60 (take blood sugar) I sit on the floor and eat my energy bars (18gram) then proceed. When correcting low sugar be careful; as you can zoom to 201 in 45 mins.......BUT.........With new Gear...I can see where My levels are going Up or Down Alarms sounds if I go out of my Radius.....Thank God, Universe, Heaven for this Available Unit!!!! So save this for your future as you age it took me from 70-74 to end up here last stop Please check into Medtronics They are a Fallacious Company World Wide!! At last I am Happy and not flipping out at lows and highs When I am doing Everything Right....Blessings and Good Wishes....
Robyn Renee....Las Vegas, Nevada U.S.A.
 
I was overweight when diagnosed with type 2 diabetes at age 36. However I was rapidly loosing weight. I always maintained that I was type 1 as lipids were fine and statins were not needed. I initially responded to the usual type 2 treatments and a huge effort on the diet front, which made my doctor think he was right. Then control started to slip and my BG averaged about 17-24 and for more than a year I was told to try harder by my doctors. I really tried and was on 3 drug treatments and a very low carb diet. I was at my wits end. I had lost nearly 5 stone and was so ill. I told them I was going to die if they didn't give me insulin and I believed that. They relucantly referred me to the hospital (it took a further 3 months to be seen because of lost referral notes). At the diabetes clinic they tested my GAD antibodies - all my type 1 markers were through the roof. All hell broke loose, paniced phones call 'can you come into the clinci now for insulin as you are type 1'. I said yeah I know and I have been for more than 2 years! Everyone should be checked for GAD antibodies and again a year after diagnosis as type 2 incase they slipped through with a false negative in the early stages of diabetes. Serology testing is not that expensive and how many people would benefit from correct diagnosis.
 
Hi all, I too was misdiagnosed. For 9 years I endured them insisting I was a type 2 who wasnt strict enough with herself and they kept adding more medication. After moving areas, in 2015 my new GP practice' Diabetic Nurse referred me to the hospital and the consultant I saw was adamant I was LADA (Im 40 yrs old now) and did a test to confirm this. Swapped to Insulin and attending DAFNE in two weeks time. In meantime I found out I have retinopathy background damage in both eyes and I do have nerve damage in feet with the right one being worst. I cant help wondering if they had looked into this 9 years ago things may have not been quite so damaged. However, I am determined to complete DAFNE and hope my HBA1C of 11.9 can reduce asap.
 
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