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Misdiagnosis ?

N

nolanjoe92

Member
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12
Morning All ,

Hope everyone is okay wondering if anyone had a similar experience .
I was diagnosed as a type 2 diabetic in august 2019 - when diagnosed i had high levels of ketones that were in my urine for the first few weeks that the doctors thought was strange i had also suffered from dramtic weight loss 96kg down to 78kg in a very short space of time (matter of weeks) leading up to my diagnosis . unfotunately as covid 19 followed very shortly after i felt my support from the doctors went downhill sometimes waiting 2 weeks just for a telephone apointment with my diabetes nurse . I have been on gliclazide 80mg + 40mg each day and metformin slow release tablets . At first this really did to the trick and from a hba1c at diagnosis i got my next two readings down to 56-58 . I noticed about 6 months ago the way i managed my diabetes was starting to have less of an effect and the things i could handle before (small amounts of carbs ie some brown bread toast or even a portion of fruit ) seemed to send my blood sugars higher and higher over time . I am now concerned as for the past 6 months my general blood sugar levels are running between 14-19 mmol every day this seems to be my normal range and even on a week of zero carbs with all medication the lowest number i have seen is in the high 9's . My doctors i felt were not been as proactive as id like and felt it was me forcing them to look into things but always got told to stick to medecine and diet and see if it comes back to me . I have now swapped doctors and they are investigating if i have been mis diagnosed as again i have had a sudden loss of weight for no explained reason from 72kg to 64kg i am now like a skeleton but the new doctor is wondering if maybe i am MODY diabetic , this is the first i have ever heard of it so was wondering if anyone has any experience with it ?
My family has a strong history although it skipped my parents of type 1 diabeties so this is also something they want to check but after two years of been diabetic is it even possible i am type 1 as i was sure this almost an instant decline and i wouldnt of lasted 2 years with been type 1 and not knowing ?

I am due to be married in 8 weeks and just feel generally ill so desperate to get to the bottom of it so i can enjoy this time without been controlled by my diabetes and feeling under the weather all the time .

sorry for the long read
 
Do you know what blood tests have been done to rule out an initial T1 diagnosis? High bgs, ketones, weight loss and even your age are all markers that T1 should be considered so I am hoping that T1 would have been ruled out at the beginning of all this.

My understanding (and I am not a doctor) is that GAD antibody tests and cpeptide (measures amount of insulin you are producing) would probably have been done to determine this.

There are a few MODYs on these forums. I freely admit to not knowing much about it other than it has a genetic component and sufferers often have a number of family members with other types of diabetes, It's also quite a bit rarer than T1, just as T1 is much rarer than T2. If you do a search for MODY quite a few threads come up but we don't have a specific subforum.

nolanjoe92 said:
after two years of been diabetic is it even possible i am type 1 as i was sure this almost an instant decline and i wouldnt of lasted 2 years with been type 1 and not knowing ?
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The instant decline is normal for children but not so much so for adults. @searley spent nearly 9 years as a T2 before he got his T1/LADA diagnosis. LADA is a slower form of T1 where the pancreas only gradually stops working. Sufferers often spend years as a misdiagnosed T2 because their doctors didn't test for T1 when they were first diagnosed. Low carb diets often work for them (for a while) but generally stop working when their insulin production becomes too low.

We are not doctors here and we can't diagnose you on the forums, but I am somewhat glad that you have changed doctors and your new one is considering all the possibilities. Have you been referred to a hospital team/endocrinologist ? Do you know if you are still getting ketones in your urine?

And the T1/5/LADA forum is here.
Type 1.5/LADA Diabetes | Diabetes Forum • The Global Diabetes Community

There are more medications available for T2s than the ones you have mentioned so you are by no means at the end of the road for T2 meds.

Good luck and I hope you get things sorted soon.
 
The instant decline is normal for children but not so much so for adults. @searley spent nearly 9 years as a T2 before he got his T1/LADA diagnosis. .[/QUOTE]
Searley deteriorated onto insulin straight away after diagnosis so the 9 years is misleading.
 
nolanjoe92 said:
but after two years of been diabetic is it even possible i am type 1 as i was sure this almost an instant decline and i wouldnt of lasted 2 years with been type 1 and not knowing ?
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Yes, it most definitely is possible. I was diagnosed as 'pre diabetic' 3 years prior to my type 1 diagnosis and that was as a result of a routine well woman check. I limped on for those 3 years. I was older than you though (mid 50s) so it was a slower onset type 1. After the 3 years I was in a right old state and ended up in hospital on the verge of DKA, they did the C Peptide tests and antibody test and they confirmed type 1. Type 1 is not always an instant decline in adults, more so in children.
 
ert said:
The instant decline is normal for children but not so much so for adults. @searley spent nearly 9 years as a T2 before he got his T1/LADA diagnosis. .
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Searley deteriorated onto insulin straight away after diagnosis so the 9 years is misleading.[/QUOTE]

I was on insulin straightaway due to an intolerance to other meds not due to requirement…. It was my choice to go insulin.. I even spoke on a t2 thread recently how if I could go back in time I would have stayed off insulin for as long as possible

During the first 8 year I would come off insulin sometimes for several months at a time..

During the 8 years I had several cpeptide tests all declining slightly in value but within normal range. It’s only the last 18 months things declined quite fast.. would things have gone faster had I not been in insulin … probably


In my case there is strong family history of T1 /LADA… so I was always aware of the risk

If you are having issues but feel your doctor is not dealing with it right ask for a referral to a diabetic team/consultant discuss the concerns…. A cpeptide test will show how much insulin you are producing but will probably not be accurate due to the use of gliclazide
 
@searley The insulin is likely to have preserved your beta-cell function. I was diagnosed with a c-peptide of less than 0.2 nmol/l, way below the normal range, and still managed to stay off insulin for 2 years. So coming off and on insulin doesn't prove you didn't need it.

A lot of type 2's require insulin by the 10-year mark because their beta cells wear out. They are still type 2's.

C-peptide and type 1 diagnosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5446389/
 
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searley said:
A cpeptide test will show how much insulin you are producing but will probably not be accurate due to the use of gliclazide
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This would be true if measuring insulin directly. C peptide is produced alongside natural production of insulin and measured as a proxy because it is unaffected by injected insulin. Or at least that’s my understanding
 
ert said:
A lot of type 2's require insulin by the 10-year mark because their beta cells wear out.
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And that assumption is based on continued consumption of high carb levels and a medication only approach, and it’s often more than 10 yrs. if you have other evidence I’d like to read it please.

The “assumption” is that their beta cells have worn out due to type 2. It’s likely many of these are caused by the wringing out every possible drop of insulin of the already massively overproducing pancreas by medications such gliclazide. It’s also highly likely that many still overproduce, not under, but have become hugely insulin resistant which mimics underproduction. Few are actually tested for insulin or c peptide production before being moved onto insulin.
 
The beta-cell damage is irreversible in type 2's after 10 years. This is why type 2's can require insulin as soon as ten years. Of course, it's often more than 10 years as some type 2's stay off insulin their entire lives.
https://www.tandfonline.com/doi/full/10.1080/00325481.2020.1771047
 
I'm sorry you have been not given a clear diagnosis. It's been a very stressful time for you not knowing. Make sure you ask for a referral to a specialist to get the correct diagnosis. Here is the referral pathway to discuss with your GP: https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf

Are you testing for blood ketones when your blood sugars are above 13 mmol/l for an extended period of time and you feel unwell. The risk is DKA if you aren't producing enough insulin to clear your ketones.
 
@nolanjoe92 Can you get hold of some ketone testing strips? I have a meter, but I think you can buy urine dipsticks in a chemist.

I wouldn't be at all surprised if you came back as LADA - adult onset type 1 from what you've said. Mainly because your story is very similar to mine, but I ended up in hospital because my BG and ketones got out of control without insulin.

If you have ketones in your urine then personally I'd take a trip to A&E rather than wait for your GP to catch up. I remember when I was on a drip and getting my first insulin shot the diabetic consultant said they wished GPs would refer if there was any doubt at all.
 

Do you have anything that says it is categorically beta cell damage caused specifically by the disease not IR or medications? Or is it just the assumption that gets made - due to lack of testing and suitable lifestyle adjustments? Perhaps we should move this to another thread to avoid derailing. I’ll start one and add the link to this comment soon.

eta this aspect of the conversation can be continued here https://www.diabetes.co.uk/forum/threads/type-2-progression-to-insulin.183218/
 
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I agree. There is very little evidence of what actually happens in practice but the 'wearing out' assumption is often quoted when for many there will still be high insulin production and also high insulin resistance. the BMI will be one indicator.
 
Thank you everyone for the comments so I have found a new doctors who have been amazing the believe I have been misdiagnosed as type 2 and have late onset type 1 . I have been put onto insulin and the results are unbelievable in even only two days ! I have spent two years unable to eat almost anything due to blood sugars rising uncontrollable and now finally feel I can have a bit more normality in terms of my diet . Now just to learn everything all over again to suit type 1 instead of type two
 
I am so glad to read that you finally have the correct diagnosis and treatment and I hope that you will soon be sorted out and looking forward to your wedding - though you might need to get a different size of suit.
 

That's an excellent result (in terms of having a treatment that works). While if you are a T1 you are on insulin for life there are some advantages - in particular you can inject for your food so the diet is far less restrictive. Hopefully you should now be in a position to enjoy your wedding and will have regained a lot of weight by then.
 
This sounds like listening to my story all over again. I was told last March last year I was type 2 put me on metformin and told to watch carb intake. After a while hbc1 was 104 was 106 before taking metformin. So pestered nurse at GPS weight was falling off me, then put me on gliclazide for 2 months. Cut long story short I insisted to see a endricrinologist. I was so ill to say the least. From March to October I lost 5 stone I looked like I had cancer. Finally had app at hosp and Dr went absolutely mad had me on insulin next day. He was ready to admit me to hosp but because of covid had me back next day to be trained how to inject. Don't leave it insist to be seen and sorted good luck to you
 
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