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Can type 1 diabetes be wrongly diagnosed??

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danny6452

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Around 15yrs ago I was diagnosed with Type 1 diabetes (27yrs old). I have never taken full injections throughout the day. Now only using langurs at night not taking nova rapid at all. I have no probs with high bm. Around time of initial diagnoses I was also told and treated for bi polar this diagnoses was changed 10yrs later to complex PTSD as I was in the RAF Police 7yrs Only out 6mths prior to diabetes diagnoses. Could meds stress and maybe problems with other hormones due to massive doses of medication mean that I was wrongly diagnosed? Thanks in advance.
 
danny6452 said:
Around 15yrs ago I was diagnosed with Type 1 diabetes (27yrs old). I have never taken full injections throughout the day. Now only using lantus at night not taking nova rapid at all. I have no probs with high bm. Around time of initial diagnoses I was also told and treated for bi polar this diagnoses was changed 10yrs later to complex PTSD as I was in the RAF Police 7yrs Only out 6mths prior to diabetes diagnoses. Could meds stress and maybe problems with other hormones due to massive doses of medication mean that I was wrongly diagnosed? Thanks in advance.
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Could be that language is enough to cover what you eat, it depends on how many carbs you eat. If I don't eat any carbs I don't take any novo rapid. If my background insulin is high I could eat some carbs without injecting.


Kim x
 
Hi I am 6ft 1 and 16stone! I live of pasta potato rice etc. I wasn't particularly active when it came to exercise although that has changed now. This has been going on for years now tho. I recently asked GP for certain blood tests to be carried out and got back results which showed there were problems which could explain why my insulin levels were so low at one time but I think, maybe not diabetes. I am waiting to see a specialist but was just wondering if anyone else had found them in such a position (where type 1 diagnosis is reversed) or know anyone else who has experienced it. :grin: many thanks

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HI I think, someone else had posted something similar a few months back, from what I remember he just decided to stop taking his injections and then was very puzzled when his blood sugar stayed normal. From the replies that were posted I think there was a type a diabetes not type 1 that was suggested that's quite rare that could be controlled with diet exercise and maybe some type 2 meds or background insulin. I remember something about Halle berry as well. I would definitely try getting referred to a specialist to get some tests done but it just may be that you're LADA and your background insulin is high enough to cover the amount you would need to cover your bolus insulin. How much background do you take? What is the highest reading you would get? how often would you test? Hopefully someone else will be along with a bit more detailed answer.
Laura
 
Hi Laura and thanks for the reply. I have pushed for certain tests that did come back as I expected and have been referred to a specialist in hormones and how they affect each other. Depending on the amount and types of food I have consumed during the day I adjust the amount of insulin I take at night. I am still suffering from hypos though now more than ever so I have started a better diet and exercise so I can take little if any insulin at night. When I was first diagnosed my bg was through the roof! And I have relied on insulin initially. However if more investigations were carried out at the time I believe that they would have found that other things were causing my insulin production and high bg levels for example the tests they are carrying out now. My GP also seemed shocked when he found out that these investigations were not carried out at the time either. Especially as I got the diagnosis at a relatively unusual age and at a time when I was extremely fit and healthy. If I am honest I have never believed I had type 1 diabetes so never learned much about it. I thought I was type 2 at worst. However I put that down to myself being in denial. I did the research myself and looked at how I could find out. My GP has been very supportive and informative. I am waiting to see the specialist now but just looking to see if anyone had experience of his situation thank you once again :grin:

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It makes interesting reading thank you. There are also contact details of specialists in the field as it seems very rare. I have taken contact details and will give them a call. If it's not MODY then they may have some insight as to what it maybe. Thank you once again :smile: x

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If you were fit and healthy at diagnosis that may be why doctors would assume you weren't type 2 because, usually, type 2 diabetics do not present as fit and healthy at diagnosis (notice I say 'usually' and not 'always') hence why they leaned towards type 1 at the time.

Do you know what blood tests have been done? In order to find out whether you are type 1/1.5 diabetic you need a c-peptide and an antibody test carried out. Type 2 diabetics usually present with very high insulin production and test negative for antibodies. Type 1/1.5 is the other way round - low insulin levels and positive for antibodies, particularly GAD antibodies.

It may be that you are LADA/1.5 which is slow-onset type 1 and sometimes going onto insulin immediately can result in increased insulin production. Even if you don't take insulin this can still be the case as my insulin levels were 395 at diagnosis and 6 months later were 750 and I have never injected insulin.

A lot of people on here have been diagnosed as type 1 and put on insulin and then, after a period of time, have hit a 'honeymoon period' where they produce more of their own insulin which diminishes their need to inject it....

Alternatively you could have just been suffering from IGT (impaired glucose tolerance) but your level at diagnosis being 'sky high' would perhaps suggest LADA.... Have you had a hba1c done as this is usually diagnostic of diabetes?


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 
I am sorry I really don't know what most of what you said meant :-( I have recently found out I have problems with other hormones in my body either over or under production. This is what the recent tests are for. I am and have always questioned my type 1 diagnosis due to the lack of insulin I've had to take over the yrs. As hormones tend to have a knock on effect to each other I have raised the question of type 1 with my GP. He has said it needs to be spoken about with the specialist when I see him / her. As for everything you just mentioned. Because diabetes has had such a minimal impact on my life during the 15yrs of diagnosis I ve really not educated myself in it, just going for tests etc when requested! Never chased up results and as they've never come looking for me I am assuming things were ok. Poor attitude I know but I hate diabetes as it had such a massive effect on my prospects once I was initially diagnosed. For example I was out of the RAF On 6mths compassionate leave / discharge and got diagnosed 1 month before re entering which prevented me re enlisting! Gutted. Also any other jobs that interested me back then we're all impossible to do with a type 1 diagnosis. So although it's had no long term effect on my life it damaged the bigger initial part of me and my future massively. So I am totally un educated in tests, results, types of insulin and jargon. Sorry but thanks for attempting to help answer my question :-)

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Apologies for all of the jargon.

In answer to ur question, yes type 1 diabetes can be misdiagnosed but I would imagine ur diabetic review would have picked up on a misdiagnosis by now. Also, autoimmune diabetes(type 1) is known to be linked to other autoimmune/endocrine(hormonal) conditions such as thyroid problems (which sounds like what u described in ur last post) and so from what u hav managed to explain i would still lean towards u being type 1 more than type 2 if diabetic but hopefully the tests and speaking to a specialist will be able to put ur mind at rest soon.



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