How to pursue potential misdiagnosis?

[Catkysydney]

@mcdougall86 I am sorry to read about your struggles.
I am sure a confirmation would help both with your treatment and mentally.

I understand what you mean about your erratic readings looking at your HBA1c.
Do you have finger prick tester? Your HBA1c is a good indicator of an average of what has been going on for the last 3 months but not the reaction to different foods and exercise which may help you see patterns that you can take to your doctor.
You may find the free Libre trail useful to spot some trends.

Once you are able to show that your levels are high regardless of the medication you take, following a low carb diet and doing lots of exercise, for example (no ,it is not necessary to do all of these) your doctor of endo may take more notice.


Really? There are still people who struggle to convince their doctors for a C-Peptide test today and I think it is more common now than it was eight years ago.

My previous doctor has never heard of autoantibodies, then told me that I would never have type 1 because I am not a kid !
He was so stubborn and did not listen to me , then finally told me I don’t have diabetes.. he diagnosed me with type 2 diabetes five years ago .
I have found a new doctor …

 

[EsmeWeatherwax]

Thank you so much for posting this, it mirrors my experience very closely. It was useful to find out about the other tests that I’ve never had mentioned to me, so I think I’ll go back to the GP.

 

[Juggod]

Hi, I’m sorry you’re not getting the help you need. I too have a problem getting diagnosed. Back in March my H1abc was 142 when it should be between 48-58 so I’m told. I am 66 with a BMI of 22. Diagnosis was diabetes and prescribed metformin which did nothing to lower blood sugars -still was reading between 15-25 on a finger prick test. Because of our long waiting lists was advised to go privately- consultant immediately prescribed insulin which did bring sugars down . Results of had test were 4.95. Anything less than 5 is considered normal but the consultant suggested type 1. Go did c peptide test- I don’t know results but go was suggestive of type 2. Research that I’ve done is suggesting LADA because of my symptoms but he won’t redo gad test . What do I do?

 

[SHORAN]

I was diagnosed in late 2016 whilst in hospital on very high dose steroids for an autoimmune condition. It was literally one finger prick test (at 17.5!) and they had me on metformin quicker than I could ask any questions!

I was 29 at the time and had a BMI of around 36, so was obese and my own very deep body image/shame issues meant I just took the meds, asked no questions and blamed myself. I also have a very dismissive endocrinologist who calls me once a year to ask “how’s the weight?” and that’s the extent of my care.

I’m now 37, my BMI is around 27 and I’m still having extremely erratic blood sugar readings. My hba1c results have varied over the years all the way from 71 to 42 and everything in-between with what appears to be no correlation to my diet, exercise or medication.

I have a collection of other autoimmune diagnoses, including two other endocrine conditions; autoimmune ovarian failure (diagnosed in 2002) and hashimoto’s (diagnosed last year). I once asked my Endo if I definitely had T2 and he totally dismissed me with “You were obese and the steroids brought on T2. It’s not anything else”.

I’m not grasping at straws here, I’ll be happy with a definitive diagnosis, whatever the diagnosis is. But the unanswered question is really niggling at me. Especially as the hashimoto’s diagnosis is new, and there are studies who show correlations between autoimmune diabetes and autoimmune thyroid conditions - it seems to be to be reason enough to just run the tests.

I’ve also had some worsening symptoms recently like higher than expected blood sugars on a finger prick test, excessive thirst (even more than usual), poor exercise tolerance, a horrible ammonia-like smell coming off my skin at times, and hba1c results that seem “too low” when compared to post-prandial readings which makes me wonder if I’m having lows that I’m not aware of which are balancing out the highs.

I’m looking for some advice really, not medical advice but personal advice from others who have pursued this. I just want to know if I should push for the tests and if it’s really possible for LADA to be misdiagnosed for as long as 7.5 years?

Sounds like youre having a hard time. I can't offer you much advice but yes I do think it is possible to be misdiagnosed . I am sure I was , I am slim and straight after my diagnosis I was told that I was a T2. Fast forward 7 years later- I'm now told I'm a T1 !-I suspect strictly speaking a T1.5 (Lada ) - but my consultant didnt want to touch that "1.5" scenario oddly enough .

Good luck with your endeavours.
Shoran

Edited by mod to remove rule breaches

 

[HSSS]

I was told that I was a T2. Fast forward 7 years later- I'm now told I'm a T1 !-I suspect strictly speaking a T1.5 (Lada ) -

perhaps you could update your profile to reflect your amended diagnosis so that others reading your posts can see this.

 

[SHORAN]

perhaps you could update your profile to reflect your amended diagnosis so that others reading your posts can see this.

Ok I will ! Thanks

 

[SHORAN]

My previous doctor has never heard of autoantibodies, then told me that I would never have type 1 because I am not a kid !
He was so stubborn and did not listen to me , then finally told me I don’t have diabetes.. he diagnosed me with type 2 diabetes five years ago .
I have found a new doctor …

Good on you getting a different doctor ! Some are idiots !....

 

[Billy H]

I totally get you @mcdougall86 on wanting a firm diagnosis. As you rightly point out, it does not matter whether one is T2 or T1. It's about your own peace of mind, and most definitely for the correct treatment and care. As you know your Endo is right, steroids can most definitely cause secondary diabetes, and in some people weight is a contributing factor in high blood sugars due to metabolic syndrome. Importantly, weight gain is the result, not a cause of T2 diabetes, so don't blame your self for your weight. If they will not do the antibody tests, ask your Dr for a C-peptide test. The test is far cheaper. C-peptides mirror your insulin secretion so getting those tests done will give you and your Dr an idea how much insulin your body is producing. If your fasting C-peptides are high normal, then you are very likely T2. Your body has to secrete more insulin to counter insulin resistance. Insulin resistance is a major factor in Type 2 diabetes. If your C-peptides are normal or then it would be inconclusive, a low peptide test, with high blood sugars would indicate decreased insulin reduction. Your Dr would then very likely test you for antibodies.

It makes a massive difference if it's Type 1 or Type 2 - the diseases are very different and need different treatments. And Type 2 treatments can vary depending on the trigger condition - the approach for steroids induced is different from weight triggered.
Failure to identify and properly treat diabetes can, for some, be a matter of life and death.
Find the name of the antibodies blood test and ask your GP to do that test when checking HbA1c (only once) to confirm, or otherwise, Type 1 or LADA. A negative outcome will open the way for treatment for Type 2.
If your GP refuses ask for a referral to the hospital and if that's refused contact Patient Services for your area.

 

[lovinglife]

There are many many reasons for T2, not just steroid induced or weight related, I have PCOS which is also one of, like I say many reasons to develop insulin resistance & T2, also it can be genetic both maternal & paternal side of my family had T2 all of them skinny, except a couple of my mothers siblings who were very overweight but no T2 - it doesn’t pay to generalise

 

[CottonCutiePies]

Steroids affect glucose levels even if you don't have diabetes. Also they affect people differently. I had steroid injections due to Troncantric bursitis, my bg hardly rose yet when I had an injection for tennis elbow they rose quite a bit. So checking for diabetes around steroids would potentially give a misdiagnosis.

 

[Lissia]

I was diagnosed in late 2016 whilst in hospital on very high dose steroids for an autoimmune condition. It was literally one finger prick test (at 17.5!) and they had me on metformin quicker than I could ask any questions!

I was 29 at the time and had a BMI of around 36, so was obese and my own very deep body image/shame issues meant I just took the meds, asked no questions and blamed myself. I also have a very dismissive endocrinologist who calls me once a year to ask “how’s the weight?” and that’s the extent of my care.

I’m now 37, my BMI is around 27 and I’m still having extremely erratic blood sugar readings. My hba1c results have varied over the years all the way from 71 to 42 and everything in-between with what appears to be no correlation to my diet, exercise or medication.

I have a collection of other autoimmune diagnoses, including two other endocrine conditions; autoimmune ovarian failure (diagnosed in 2002) and hashimoto’s (diagnosed last year). I once asked my Endo if I definitely had T2 and he totally dismissed me with “You were obese and the steroids brought on T2. It’s not anything else”.

I’m not grasping at straws here, I’ll be happy with a definitive diagnosis, whatever the diagnosis is. But the unanswered question is really niggling at me. Especially as the hashimoto’s diagnosis is new, and there are studies who show correlations between autoimmune diabetes and autoimmune thyroid conditions - it seems to be to be reason enough to just run the tests.

I’ve also had some worsening symptoms recently like higher than expected blood sugars on a finger prick test, excessive thirst (even more than usual), poor exercise tolerance, a horrible ammonia-like smell coming off my skin at times, and hba1c results that seem “too low” when compared to post-prandial readings which makes me wonder if I’m having lows that I’m not aware of which are balancing out the highs.

I’m looking for some advice really, not medical advice but personal advice from others who have pursued this. I just want to know if I should push for the tests and if it’s really possible for LADA to be misdiagnosed for as long as 7.5 years?

You have just described my diagnosis!
The doctor looked at me and thought fat cow so type 2 diabetes….(he didn’t exactly word it like that but you could see his expression!) despite that i had pernicious anaemia, raynaulds and suspected coeliac disease, despite these also being autoimmune conditions they didn’t even entertain a type 1 or LADA diagnosis And knowing that there was so much of it in my family.
the doctor put me on metformin, then saxagliptin then gliclazide and then my sugar as finally went up to 35, was sent to a specialist who tested me after seeing my history and she said you aren’t type2 she said you’re LADA type 1.5, my body produces virtually no insulin so I am now dependant on insulin, she apologised and said I’m so sorry about the diagnosis you were given and asked who gave it to me, and when I said the GP she shook her head and rolled her eyes!
she said well he should have referred you to the hospital immediately with sugars that high, she said I’m going to get you onto insulin now, 5 days later I felt so so different, I actually had energy!

 

[Billy H]

There are many many reasons for T2, not just steroid induced or weight related, I have PCOS which is also one of, like I say many reasons to develop insulin resistance & T2, also it can be genetic both maternal & paternal side of my family had T2 all of them skinny, except a couple of my mothers siblings who were very overweight but no T2 - it doesn’t pay to generalise

I noted that I didn't say the cause T2 was limited to steroid induced or weight related; I used those two to highlight the need for the correct treatment. There are, as you say, many reasons for developing T2 but when a person doesn't respond to treatment or does not fit the profile for T2 an antibody test should be taken as misdiagnosis is quite common for people with adult onset T1, LADA, and other types of diabetes.

 

[Billy H]

Steroids affect glucose levels even if you don't have diabetes. Also they affect people differently. I had steroid injections due to Troncantric bursitis, my bg hardly rose yet when I had an injection for tennis elbow they rose quite a bit. So checking for diabetes around steroids would potentially give a misdiagnosis.

Which is why a definitive diabetes test is based on a 3 month average (A1c) rather than an immediate finger prick test.

 

[lovinglife]

I noted that I didn't say the cause T2 was limited to steroid induced or weight related; I used those two to highlight the need for the correct treatment. There are, as you say, many reasons for developing T2 but when a person doesn't respond to treatment or does not fit the profile for T2 an antibody test should be taken as misdiagnosis is quite common for people with adult onset T1, LADA, and other types of diabetes.

I agree with what you say here, about a person not responding to treatment then tests should be taken, I think that’s a given

Looking back at your post you say that the treatment for steroid induced diabetes is different from weight induced T2 (though I don’t believe that excess weight alone triggers T2 I’m of the camp that weight gain is a symptom of insulin resistance leading to T2 not a cause of T2) can you expand on that or do you have a link to that information?

The reason I ask is my hubby is on lifetime steroids, started 2 year ago for a condition he has, not diagnosed with diabetes but his BG was running a bit high when he first started them but settled back down within a few months, he eats low carb along with me though he is a bit more flexible with about 50g carb a day I do 20g, he ate like this before the steroids, I’d be interesting to see if there is something different he could be doing to keep the steroid induced diabetes at bay

 

[Melgar]

My personal view is all those people diagnosed with diabetes and pre-diabetes should be routinely tested for their C-peptides Levels. Regardless of weight. It’s a simple test. Useful because it will identify those people who may not be producing enough insulin and those who are producing too much insulin. Low to normal result C-Peptides could then be monitored for late on set Type 1, rather than waiting for blood sugars to go through the roof and risk DKA (like my brother). High C-peptides very likely Type 2 and treated accordingly with meds and diet.
Edited for clarity.

 

[Chris24Main]

Totally agree with that @Melgar - If I'd had a C-Peptide test a year ago, it would have saved me about 8 months of feeling progressively worse, while doing the very opposite of what, with hindsight, I should have been doing.

ironically, it was the consultant that I had the most trouble with who insisted on the test, so despite not getting on with her, I totally have her to thank for that first step on the better path.

 

[Honeyblossom]

This is such a frustratingly grey area. I was first diagnosed type 2 four years ago with relatively healthy lifestyle and BMI 22. After spending a couple of years working hard to reduce my numbers (which helped but never really worked longer term) I asked for a c peptide and GAD antibody test. The GP agreed to GAD but couldn't do c peptide as normally done in hospital. The GAD results were 37 and they changed my diagnosis to type 1 on my record but told me they weren't sure what type of diabetes I was as I only had one antibody. I asked to be referred and consultant has said the same more or less. He thinks lots of GAD positive patients are 'false positive' and "time will tell". So here I am four years later still no c peptide test (apparently not relevant for the first few years) on twice daily Humulin that doesn't control the mealtime spikes and a higher than ideal hba1c at 60. What I'm trying to say is the diagnosis for lada/type 1 seems to be ambiguous and can take a long time. The frustration over no proper answers has been, and continues to be, the worst part of this for me.

 

[Chris24Main]

@Honeyblossom - don't know if this helps directly, but the test I did was a simple urine test. I had to deliberately eat a carb-heavy meal then pee about an hour later. It was the hospital team (ie the consultant) that triggered, but the test itself was done at home, then posted in. You may be able to ask more directly if it's clear it isn't a test that needs doing in a hospital..

Some context from my experience; I was told I was either Type 1 or Type 2. The mechanism as explained was that:
if this was Type 1 (LADA) then it was dependent on the "rate of destruction" of my (Pancreatic, insulin producing) Beta cells, caused by something triggering an autoimmune reaction.
if this was Type 2 then it was dependent on rate of rising insulin resistance, which had tipped into Beta cell failure.

Either mechanism could explain me presenting with low BMI but very high blood glucose with no other symptoms. (no ketones, but clearly showing "thirsty but drinking and peeing a lot" behaviour)

The support team were very ...supportive... but also didn't seem too concerned about the lack of clarity. I had had the antibody test, but the result wasn't shared for months. In case of doubt, treat as Type 1, because it's the safer of either option.

Because nobody seemed to worry, I didn't; and carried on with my medication, in my case Gliclazide followed by insulin.
After about 8 months of injecting insulin I didn't need, I was three stone heavier, and quite definitely insulin resistant, whatever state I had started in.

Looking back, I still struggle to feel that anyone did anything wrong... in both cases there is a suspicion that the Pancreas is in trouble, and my best effort to figure it all out is that maybe the additional insulin for a period gave my pancreas a chance to recover to the point where a C-Peptide test would give a strong enough positive result - ie, there really was some sense in waiting for a while.

But - I was pretty ill by the end of that 8 months. Four years like that, I shudder to think.

The only additional thing I can add is that since I was wearing a CGM, I could see responses that I couldn't make sense of unless there was insulin coming from somewhere (Ie, I was suspecting that I was really Type 2 for a while) - but I couldn't manage to convey that to the consultant - she independently decided that I was likely Type 2 and arranged the test to prove it.

I guess in the end, it's about finding the one right person. I wish you best of luck...

 

[Honeyblossom]

@Honeyblossom - don't know if this helps directly, but the test I did was a simple urine test. I had to deliberately eat a carb-heavy meal then pee about an hour later. It was the hospital team (ie the consultant) that triggered, but the test itself was done at home, then posted in. You may be able to ask more directly if it's clear it isn't a test that needs doing in a hospital..

Some context from my experience; I was told I was either Type 1 or Type 2. The mechanism as explained was that:
if this was Type 1 (LADA) then it was dependent on the "rate of destruction" of my (Pancreatic, insulin producing) Beta cells, caused by something triggering an autoimmune reaction.
if this was Type 2 then it was dependent on rate of rising insulin resistance, which had tipped into Beta cell failure.

Either mechanism could explain me presenting with low BMI but very high blood glucose with no other symptoms. (no ketones, but clearly showing "thirsty but drinking and peeing a lot" behaviour)

The support team were very ...supportive... but also didn't seem too concerned about the lack of clarity. I had had the antibody test, but the result wasn't shared for months. In case of doubt, treat as Type 1, because it's the safer of either option.

Because nobody seemed to worry, I didn't; and carried on with my medication, in my case Gliclazide followed by insulin.
After about 8 months of injecting insulin I didn't need, I was three stone heavier, and quite definitely insulin resistant, whatever state I had started in.

Looking back, I still struggle to feel that anyone did anything wrong... in both cases there is a suspicion that the Pancreas is in trouble, and my best effort to figure it all out is that maybe the additional insulin for a period gave my pancreas a chance to recover to the point where a C-Peptide test would give a strong enough positive result - ie, there really was some sense in waiting for a while.

But - I was pretty ill by the end of that 8 months. Four years like that, I shudder to think.

The only additional thing I can add is that since I was wearing a CGM, I could see responses that I couldn't make sense of unless there was insulin coming from somewhere (Ie, I was suspecting that I was really Type 2 for a while) - but I couldn't manage to convey that to the consultant - she independently decided that I was likely Type 2 and arranged the test to prove it.

I guess in the end, it's about finding the one right person. I wish you best of luck...

Thanks - really helpful as I didn't know there was a urine c peptide test. My next appointment is November so I'll mention then. Seems like there's a lot of us in the same boat. Just got to do best you can at the time I guess

 

[Melgar]

Hi there @Honeyblossom I’m in a holding pattern with my type as well so I get how frustrating it can be. The only thing in common I have with Type 2 diabetes is my age. There is this tendency for confirmation bias, that is, because 90% - 95% of people get a diagnosis of type 2 so you must be too. Thank kind of logic. In my view medicine should not be about assumptions, it’s supposed to be a science.
I have a BMI of 19, I’m very fit,I do weights, I do between 25,000 - 30,000steps a day. I tried the very low diet 30 grams of carbs per day, my blood sugars barely budged so it’s not food that’s the driver of my raised blood sugars. I do watch my carb intake. I’m coeliac so I cannot eat anything with gluten. This puts paid to pastas, breads, puddings and anything fabulously delicious. My blood sugars are very unstable, and I was going hypo numerous times a week, but that has eased off. My C-peptides were done a while back because Of my bad hypos, and they came back low/ normal, so no insulin resistance.

It’s just a wait and see situation. Some of the issues, in my opinion, come down to everyone not diagnosed with Type 1 must be classic Type 2 diabetes, where Insulin resistance is the main driver, but what happens if it’s not insulin resistance or autoimmune? There are many things that can go off with your pancreas and simply lumping you in as Type 2 is a recipe for serious Consequences.

My brother was initially diagnosed Type 2, he was on Metformin for years. They refused him a glucometer and he got the usual flannel that we will look after your blood sugars. They sure did, he ended up losing so much weight he was convinced his cancer had returned. He was showing symptoms of DKA and his blood sugars were in the 40’s . I worry when mine hit 14 , let alone the 40’s. He was diagnosed LADA and on insulin.