How to pursue potential misdiagnosis?

[mcdougall86]

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?

 

[Juicyj]

Hello there,

I am surprised that considering your age you were not tested at the time to check the diagnosis, a C Peptide test would of determined how much insulin you were producing and would of given you an idea of what was really going on.

What readings are you getting on your prick test and at what time of day are you checking, ideally checking first thing upon rising would give a fasting glucose reading which gives us a good indication of what is really going on.

Personally I think doctors can be quite lazy and assumptive in making a diabetes diagnosis, but if the signs are leading towards a LADA diagnosis then the sooner you get this the better and get the right treatment too as living with high BG levels is life threatening.

 

[In Response]

@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.

I am surprised that considering your age you were not tested at the time to check the diagnosis, a C Peptide test would of determined how much insulin you were producing and would of given you an idea of what was really going on.

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.

 

[mcdougall86]

Hello there,

I am surprised that considering your age you were not tested at the time to check the diagnosis, a C Peptide test would of determined how much insulin you were producing and would of given you an idea of what was really going on.

What readings are you getting on your prick test and at what time of day are you checking, ideally checking first thing upon rising would give a fasting glucose reading which gives us a good indication of what is really going on.

Personally I think doctors can be quite lazy and assumptive in making a diabetes diagnosis, but if the signs are leading towards a LADA diagnosis then the sooner you get this the better and get the right treatment too as living with high BG levels is life threatening.

They did no further testing at all at the time, the combo of my weight plus steroids meant it was taken as read to be T2 and I didn’t know enough to question it.

I’ve only started testing again very recently because I’ve been a bit worried about symptoms. I didn’t have a meter for a long time because they don’t prescribe them to T2 diabetics in my health board. So the last time I was regularly testing would have been about 2019.

I was given a meter and strips again after a recent bout of high-dose steroids again, so these results are all fairly recent. My morning fasting readings can vary anywhere from 4 to 11, with seemingly little correlation to my last reading the night before. E.g. it’s not a long high from over-indulging on carbs at dinner the night before. After meals I’ve seen spikes of +10 at 2hrs but I’ve also seen some readings where it’s barely moved after food. It’s very erratic. I don’t eat a diet high in carbs, but I’m also not on a super low carb/keto diet either. I’d say my breakfast has 10-15g carbs on average, lunch maybe 20-30g and dinner 40-60g with most of those carbs coming from veggies, legumes and fruit with some small servings of grains like bulgar wheat and rice. I rarely eat pasta or bread.

The highs I’m seeing after food, and even at fasting in the morning, do not correlate with my hba1c results unless I’m having lows at some point. My last hba1c was 48.

The thing I’m worried about is how erratic it is. The last time I was checking regularly (2019) I could quite easily predict post-meal readings, they’d be pretty much in-line with how carb heavy or not the meal had been. Now it’s all over the place. I wake up in the morning and my brain feels like all the liquid has been sucked out it, I have a horrible shaky feeling a lot of the time, and the weird smell of ammonia coming off my skin is a little odd. I know people can get it from
Keto or over-exercise, but neither of those apply to me.

 

[mcdougall86]

@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.

Hi! Yeah, I have a finger prick tester now, and it’s partly why I’m questioning the diagnosis. My morning fasting readings and post-meal readings seem far too high to correlate with my hba1c unless I’m having significant lows somewhere in along the way. Either that, or perhaps the hba1c isn’t accurate for me because of my other health conditions. I have read that hba1c isn’t always accurate for folk with any spleen dysfunction.

I’ve done seriously low carb before, I also put myself on the 800 calorie “Newcastle diet” about 5 years ago. Neither had any impact whatsoever on my hba1c but my doctor didn’t care because I was losing weight, and it’s all he’s ever been interested in. Trialling a CGM might be a good idea though, even if just to see what’s happening across a period of time.

 

[In Response]

Hi! Yeah, I have a finger prick tester now, and it’s partly why I’m questioning the diagnosis. My morning fasting readings and post-meal readings seem far too high to correlate with my hba1c unless I’m having significant lows somewhere in along the way. Either that, or perhaps the hba1c isn’t accurate for me because of my other health conditions. I have read that hba1c isn’t always accurate for folk with any spleen dysfunction.

Unless you are treating your diabetes with insulin, if you have LADA, you are very unlikely to be experiencing significant low readings.
LADA is a variant of Type 1 which is an autoimmune condition where our body has decided to attack the insulin producing cells. No insulin = high BG not low.
However, auto-immune conditions are rather sociable - they tend to group together. So, as you have other autoimmune conditions, it is definitely worthwhile getting it checked out.

 

[Melgar]

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.

 

[Melgar]

I'm not sure why my reply was so delayed. Travelling time from Canada ! So I have repeated what has already been said.

 

[mcdougall86]

Unless you are treating your diabetes with insulin, if you have LADA, you are very unlikely to be experiencing significant low readings.
LADA is a variant of Type 1 which is an autoimmune condition where our body has decided to attack the insulin producing cells. No insulin = high BG not low.
However, auto-immune conditions are rather sociable - they tend to group together. So, as you have other autoimmune conditions, it is definitely worthwhile getting it checked out.

I haven’t ever had a low reading on a finger prick test, and I don’t ever get symptoms that align with a hypo. My assumption is only because my hba1c doesn’t seem to match with the regular readings I’m getting, so my natural guess was “I wonder if there are lows balancing it out”. I think it’s far more likely that my hba1c just isn’t accurate because of my spleen issues. It’s one of the major factors that can impact falsely low hba1c results from my research.

Regardless of what type of diabetes I have, I definitely need to investigate whether my hba1c is accurate because I’ve been accepting that I have “well controlled” diabetes based on those results, but these finger-prick results throw that totally out of the window. I’ve ordered a trial of the Libre, so hopefully that’ll provide some insights.

I do think it’s worth investigating the antibodies, just because of my other autoimmunity, so I’ll try and push again the next time I have an appointment. It’s niggling at me, and I need to know.

 

[HSSS]

They did no further testing at all at the time, the combo of my weight plus steroids meant it was taken as read to be T2 and I didn’t know enough to question it.

I’ve only started testing again very recently because I’ve been a bit worried about symptoms. I didn’t have a meter for a long time because they don’t prescribe them to T2 diabetics in my health board. So the last time I was regularly testing would have been about 2019.

I was given a meter and strips again after a recent bout of high-dose steroids again, so these results are all fairly recent. My morning fasting readings can vary anywhere from 4 to 11, with seemingly little correlation to my last reading the night before. E.g. it’s not a long high from over-indulging on carbs at dinner the night before. After meals I’ve seen spikes of +10 at 2hrs but I’ve also seen some readings where it’s barely moved after food. It’s very erratic. I don’t eat a diet high in carbs, but I’m also not on a super low carb/keto diet either. I’d say my breakfast has 10-15g carbs on average, lunch maybe 20-30g and dinner 40-60g with most of those carbs coming from veggies, legumes and fruit with some small servings of grains like bulgar wheat and rice. I rarely eat pasta or bread.

The highs I’m seeing after food, and even at fasting in the morning, do not correlate with my hba1c results unless I’m having lows at some point. My last hba1c was 48.

The thing I’m worried about is how erratic it is. The last time I was checking regularly (2019) I could quite easily predict post-meal readings, they’d be pretty much in-line with how carb heavy or not the meal had been. Now it’s all over the place. I wake up in the morning and my brain feels like all the liquid has been sucked out it, I have a horrible shaky feeling a lot of the time, and the weird smell of ammonia coming off my skin is a little odd. I know people can get it from
Keto or over-exercise, but neither of those apply to me.

Whilst we can’t rule anything in or out it would be unusual to be going low whatever type of diabetes you may have unless you are on medication that causes lows. Diabetes is a disease of highs. There are some other conditions that might cause lows, including reactive hypoglycaemia and some medications that can do that too.

Have you tested whilst you are feeling shaky? Do you have any ketone testing strips or can you get some from the chemist? Have you had the free libre trial yet as that might give you more information.

Lastly hba1c can be distorted in cases where the red blood cells don’t behave as normal, eg in iron deficiency anemia and some other blood conditions. Could that apply to you? In which case there are other tests that can be done eg fructosamine. Or maybe the rises you see only occupy a small percentage of the day and the rest of the day is good hence the hba1c of 48. That’s where a cgm even for just a few weeks could help.

 

[Melgar]

Hi! Yeah, I have a finger prick tester now, and it’s partly why I’m questioning the diagnosis. My morning fasting readings and post-meal readings seem far too high to correlate with my hba1c unless I’m having significant lows somewhere in along the way. Either that, or perhaps the hba1c isn’t accurate for me because of my other health conditions. I have read that hba1c isn’t always accurate for folk with any spleen dysfunction.

I’ve done seriously low carb before, I also put myself on the 800 calorie “Newcastle diet” about 5 years ago. Neither had any impact whatsoever on my hba1c but my doctor didn’t care because I was losing weight, and it’s all he’s ever been interested in. Trialling a CGM might be a good idea though, even if just to see what’s happening across a period of time.

I also have fluctuating blood sugars, they call it labile or brittle. I'm on medication that increases insulin secretion, plus I do a lot of exercise, about 25,000 - 30,000 steps a day. My blood sugars are rising slowly, even now. I am having trouble keeping my weight on with a BMI of 19, I have an optimum metabolic system along with normal insulin sensitivity. Low normal c-petides. I too have two existing autoimmune conditions and a brother with Typ1 (LADA). No family history of Type 2 diabetes. They are at least considering type 1 for me. My blood sugars jump around a lot.
Ed corrected for clarity.

 

[Melgar]

Whilst we can’t rule anything in or out it would be unusual to be going low whatever type of diabetes you may have unless you are on medication that causes lows. Diabetes is a disease of highs. There are some other conditions that might cause lows, including reactive hypoglycaemia and some medications that can do that too.

Have you tested whilst you are feeling shaky? Do you have any ketone testing strips or can you get some from the chemist? Have you had the free libre trial yet as that might give you more information.

Lastly hba1c can be distorted in cases where the red blood cells don’t behave as normal, eg in iron deficiency anemia and some other blood conditions. Could that apply to you? In which case there are other tests that can be done eg fructosamine. Or maybe the rises you see only occupy a small percentage of the day and the rest of the day is good hence the hba1c of 48. That’s where a cgm even for just a few weeks could help.

@HSSS I have significant lows and the doctors said they cannot rule out Type 1.

 

[mcdougall86]

Whilst we can’t rule anything in or out it would be unusual to be going low whatever type of diabetes you may have unless you are on medication that causes lows. Diabetes is a disease of highs. There are some other conditions that might cause lows, including reactive hypoglycaemia and some medications that can do that too.

Have you tested whilst you are feeling shaky? Do you have any ketone testing strips or can you get some from the chemist? Have you had the free libre trial yet as that might give you more information.

Lastly hba1c can be distorted in cases where the red blood cells don’t behave as normal, eg in iron deficiency anemia and some other blood conditions. Could that apply to you? In which case there are other tests that can be done eg fructosamine. Or maybe the rises you see only occupy a small percentage of the day and the rest of the day is good hence the hba1c of 48. That’s where a cgm even for just a few weeks could help.

I have never tested and had a low result. Like I said, my assumption until recently was that *must* be having lows i don’t know about because there’s no other way my hba1c could be at the level it was, without something balancing the highs. However, I do think it’s more likely that my hba1c isn’t accurate - I hadn’t even considered this as a possibility until last week. I’m going to talk to the Endo at the next appointment about it. I have spleenomegaly and immune thrombocytopenia, these could both impact on the accuracy of the result according to papers I’ve read.

I’ve ordered the CGM so I’ll have that in the next week or so. I’m hoping that will help give me some idea of trends, at least.

 

[HSSS]

@HSSS I have significant lows and the doctors said they cannot rule out Type 1.

You are on medication that produces more insulin therefore hypos are a possible side effect. The op isn’t.

 

[Melgar]

You are on medication that produces more insulin therefore hypos are possible. The op isn’t.

Actually, thinking about it @HSSS , I am very likely depleting my glycogen reserves from all the exercise as I was having hypos before I started on the meds.

 

[AndBreathe]

Whilst we can’t rule anything in or out it would be unusual to be going low whatever type of diabetes you may have unless you are on medication that causes lows. Diabetes is a disease of highs. There are some other conditions that might cause lows, including reactive hypoglycaemia and some medications that can do that too.

Have you tested whilst you are feeling shaky? Do you have any ketone testing strips or can you get some from the chemist? Have you had the free libre trial yet as that might give you more information.

Lastly hba1c can be distorted in cases where the red blood cells don’t behave as normal, eg in iron deficiency anemia and some other blood conditions. Could that apply to you? In which case there are other tests that can be done eg fructosamine. Or maybe the rises you see only occupy a small percentage of the day and the rest of the day is good hence the hba1c of 48. That’s where a cgm even for just a few weeks could help.

With respect, as someone diagnosed T2, and never having taken medication, I regularly have blood sugar readings in the 3s, and very occasionally in the high 2s. When in the 2s I am generally very hungry and waiting for food.

It can happen.

 

[MrsA2]

have spleenomegaly and immune thrombocytopenia,

What other medication are you on? Have a good read of the leaflets and see if there's any contraindications or side effects.

 

[Melgar]

With respect, as someone diagnosed T2, and never having taken medication, I regularly have blood sugar readings in the 3s, and very occasionally in the high 2s. When in the 2s I am generally very hungry and waiting for food.

It can happen.

Low 3's are problematic but high 2's are definitely not normal. When my blood sugars drop into the 2's, I am soaked through with sweat, heart and head are pounding and I'm shaking.

 

[HSSS]

With respect, as someone diagnosed T2, and never having taken medication, I regularly have blood sugar readings in the 3s, and very occasionally in the high 2s. When in the 2s I am generally very hungry and waiting for food.

It can happen.

The limit of 4 was developed to alert those on hypoglycaemic medication early enough to avoid the more dangerous even lower levels. 3’s aren’t that unusual in the mainstream population and usually self resolve with a liver dump even whilst they might produce hunger and shakiness etc. Most often after a fast or a lot of exercise/physical stress (such as @Melgar reports). I would assume a well controlled (ie not consistently high) diabetic is not immune to those effects too regardless of their diabetic status. 2’s do seem quite unusual though.

There’s always an exception to any “rule” but nevertheless true hypos or lows are not inherently part of diabetes itself but in a person with diabetes it’s typically a side effect of diabetes medications - or other conditions/medications as I said originally. As you say that doesn’t rule out a low could happen in a diabetic, but it doesn’t mean it’s because of the diabetes itself.

 

[mcdougall86]

What other medication are you on? Have a good read of the leaflets and see if there's any contraindications or side effects.

No contraindications but the issues with my spleen can apparently cause hba1c to be artificially lower. Something to do with the haemoglobin. So I’ll definitely bring it up with my endo