@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.
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?
perhaps you could update your profile to reflect your amended diagnosis so that others reading your posts can see this.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 ) -
Ok I will ! Thanksperhaps you could update your profile to reflect your amended diagnosis so that others reading your posts can see this.
Good on you getting a different doctor ! Some are idiots !....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 …
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.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.
You have just described my diagnosis!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?
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.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
Which is why a definitive diabetes test is based on a 3 month average (A1c) rather than an immediate finger prick test.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.
I agree with what you say here, about a person not responding to treatment then tests should be taken, I think that’s a givenI 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.
@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...
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