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Labs look great, so what's wrong?

Glink

Well-Known Member
Messages
252
Type of diabetes
Prediabetes
Treatment type
Tablets (oral)
I just got a new health care provider who ordered a bunch of blood tests. Long story short, everything came back looking great! And, I'm not really sure what that means.

I've been told for the past few years, since my Pre-D diagnosis, that as I was youngish (30's) thin, fit, w/ no family history, I'm probably very early LADA. But 3.5 years in, on LC diet and metformin 2-3x/day, my fasting and HbA1c are great (like *normal* great at this last test, even my nemesis IFG was normal by a hair, after moving metformin up from 1000 to 1500 and switching to a job with less travel!), my cholesterol is still great, I still have low-but-still-within-normal-range c-peptide, and now I just found out I'm antibody negative for GAD/IA-2/insulin antibodies.

Everything looks so good in fact that my HCP had to give me a false diagnosis of PCOS to renew my metformin. I guess that's okay (?) because I don't want to go off my medication/diet and get sick again to potentially get a T2 diagnosis. But, I'm not really sure where this leaves me.

My whole situation started directly following a case of mono. I know there's an association between EBV and diabetes onset, but not how that works. Is there a "prediabetes" that is just due to beta cell damage (low insulin production), but which isn't progressive? Pancreatic prediabetes? Is there any hope that I could recover from this someday, since I don't seem to have insulin resistance or autoantibodies--or at least stop worrying about things progressing?
 
Well, this must be a first on this forum - someone with totally normal lab tests like yours who is worrying about it!

I cannot answer your questions in your last paragraph. They are outside my experience. However, I am mortified that your HCP has given you a false diagnosis of PCOS simply so you can continue with Metformin. I'm not sure that is very ethical. There are plenty of people on this forum that continue to be prescribed Metformin long after they have had normal HbA1cs for ages. It is also a bit odd that you were on Metformin in the first place without a T2 diagnosis, although it has been known. I hope this false diagnosis doesn't lead future doctors down the wrong path now it is on your records.

Anyway, well done @Glink You should be over the moon, not worried. You are a winner.
 
Ha, thanks. I've moved to the USA for a job and have been told that this kind of thing (false diagnosis for insurance coverage) is common here. I'm not really comfortable with it, but don't plan to live here forever so hopefully I can lose it when I return somewhere with an actual health care system! (I got metformin b/c sugars kept rising despite a very LC diet and lots of exercise; not sure how my GP dealt with diagnostic codes to get it covered, b/c I don't have labs on record that are technically T2 qualifying.)

I guess I'm just afraid to celebrate too soon. But it *is* great news that things are working well (especially as I had some hyperglycaemia symptoms flare up at the end of the summer, hence the increased metformin). I feel very lucky that my case has responded so well to diet and medication. It's just weird to be in uncharted territory, and now that I'm probably not-really-LADA, I'm not really sure what I am. However, you're right. I should count my blessings and try not to worry so much.
 
I’d be celebrating and reducing the metformin with a view to coming off it if levels remained normal. I’ve not heard of many prediabetics being given it let alone continuing it once levels are normal Perhaps your insulin sensitivity has improved with the diet.
 
Yeah, this does make me wonder about reducing/going off metformin someday too. I would love that; it's my only daily med.

The confusing part is that it doesn't seem that I was ever insulin resistant, just low insulin production. High blood sugars but no other metabolic syndrome indicators. So I'm not sure what got better/stopped getting worse!
 
Sounds to me that there may have never been anything wrong with you other than the mono which may have temporarily raised your blood glucose level.
 
Wow - know it's not any fault of yours or in any way am I blaming you - but the fake diagnosis of PCOS just to keep you on a med has made me see red. As a sufferer of this god awful condition it's seems very dismissive and belittling of the HCP to do this.

PCOS is a cruel condition I have had years of very excessive hairiness, hormone imbalances that gave me a MASSIVE appetite, stomach issues, insulin resistance, unexplained weight gain, T2 diabetes and even after years of infertility treatment and heart ache and miscarriages I was unable to have children of my own - oh and I was never prescribed metformin for my PCOS
 

Glink - Fabulous news on your lab results. You must be delighted, although I can appreciuate your discomfiture with the faux diagnosis. I'd find that very difficult to swallow too.

In terms of LADA, I was (quite rightly, with an A1c of 73), and went on to better things, meaning that single A1c is the only one I have had in the diabetes or pre-diabetes ranges. My records now show my diabetes as Resolved.

Around a year ago, I was seeing an Endo, about something unrelated to the big D, but during my consultations he took a very in-depth medical history and family medical history. Until then, I hadn't realised quite how littered my family is and was with auto-immune conditions - all of which I have so far swerved.

When I was being informally discharged into a "come back and see me if you need to" state, his parting shot, as I left the room, was along the lines of "Keep your eyes open for LADA. It's a very sneaky condition that can play hide and seek."

Well, that brought a sunbeam into my life, or not!

For now, I have filed that statement under the category of, "it's not in my life now, but I guess I'd just have to deal with it", but if my bloods start creeping up, I'll be asking for some additional tests..

In your shoes? I'd roll with the punches for now, but remain very vigilant.
 
In which case if you are right metformin which is for insulin resistance is even more pointless
 

Hi Glink, I was diagnosed as pre diabetes 5 years ago, like you I was fairly thin, did exercise, 'good' diet (albeit higher in carbs than now). Left the Drs with them saying see how you go and had no follow ups or anything. 3 years later I was back at the Drs and after the C peptide (lower end of normal) and a positive GAD, I was diagnosed as type 1. I reckon I was lada back then rather than 'pre diabetic'. I soldiered on for that 3 years with no medication so it is possible for lada to go without medication for quite a while, especially if you do follow a low carb diet. Just be aware, that with lada you may suddenly require insulin sooner or later. x
 
HSSS said:
In which case if you are right metformin which is for insulin resistance is even more pointless
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My understanding is that one of the things metformin does is reduce liver dumping of glucose into the blood--which I definitely do have an issue with, based on my history of high IFG and exercise causing my sugars to go up instead of down.
 
lovinglife said:
Wow - know it's not any fault of yours or in any way am I blaming you - but the fake diagnosis of PCOS just to keep you on a med has made me see red.
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LovingLife, I am really sorry you've had this experience, and lack of care from your HCP. We really do need better care for so many "women's" conditions, including PCOS as well as endometriosis.

What makes me the most uncomfortable with my false diagnosis is knowing my data (along with who knows how may others' false diagnoses) may be used in research, thus holding back actual progress on treatment for PCOS.
 
NoCrbs4Me said:
Sounds to me that there may have never been anything wrong with you other than the mono which may have temporarily raised your blood glucose level.
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I mean, it's been "temporarily" high for 3.5 years (mono was in 2014-5; high bloods were discovered when I was still feeling bad after it was better), but since I was diagnosed it's been pretty well controlled with a low carb diet & increasing doses of metformin. I'm not sure whether it will be reversible, or if there was damage done by the mono that may be irreversible but stop at this, but either of those options sounds better than waiting for the LADA Type 1 shoe to drop, which is what I have been doing the past 3 yrs!
 
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Sobering, but a good reminder not to chuck all caution to the wind with one round of great bloods.
 

Thanks. My family history also contains autoimmune in first and second degree relatives, just no one before me was diabetic of any type that we know of. I had a similar endo consult--although it was for diabetes--in that he searched for any other reason for my hyperglycemia, ruled out a bunch of other conditions and sort of left me with, "Well, come back if/when things get a lot worse." I will try to stay on top of things even though I'd like to put my head back in the sand.
 
Also, just thanks to everyone in this forum for being so helpful and supportive. I know so many people have much worse situations than I do, but hearing your perspectives and experiences is helpful. Being in the small group of people who don't seem to fit the prediabetes norm, it's hard to know how to treat it or what to expect. I appreciate your time and effort.
 

Thank you - but I think you've misunderstood my post - I had exemplary care from the NHS and the consultants and HCP - they did everything they could to help me conceive and to improve my PCOS symptoms- my beef was with your HCP trivialising PCOS by giving you a diagnosis of a condition you haven't got to give you medication- Like I said you are blameless in this - but if you are uncomfortable with the diagnosis you can always raise it with your HCP - if you go ahead with it like you say it may always be on your medical records

The reason I wasn't given metformin for PCOS is, contrary to popular belief, metformin isnt licensed to treat PCOS in UK, though it is prescribed for it if your consultant thinks it will help the symptoms you have.
 
lovinglife said:
Thank you - but I think you've misunderstood my post
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Oh, I sure did. Well, I'm glad you got *good* care, even with an awful syndrome to grapple with.

I did raise this diagnosis issue with my HCP--I had assumed it was an error on my record (there's an onilne "patient portal" and that's where I saw it), but my HCP said it was necessary to get my metformin prescription approved since I don't have an actual diabetes diagnosis, just pre. So many things in the health care system seem quite dysfunctional here in the US; I'm sure this is just a drop in the bucket. My new test kit that uses mg/dl cost me a $150 copay though my insurance (w 100 strips) even though apparently I could have bought similar over the counter for about $50! This is all taking some getting used to.
 
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