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Why Test Negative For Dt2 But Have Symptoms?

J

J_T3

Member
Messages
5
Type of diabetes
Type 3
Treatment type
Diet only
I apologise for yhe long Q; I'm hoping to interest a clinician w a really unusual case that's a mystery. Help please!
I have the symptoms of T3D yet test negative on blood tests (eg. A1c score repeatedly ~5.5, similar for blood sugar). How is this possible?
- hypoglycemic events after meals since 1990;
- excessive urination (until diet partially reversed symptoms);
- peripheral neuropathy: bilateral, hands & feet, progressed from tingling 2006 to complete loss of feeling in feet 2012; neurologist ruled out non-metabolic causes with repeat MRIs 2013-14; diagnosed type as small-fiber neuropathy 2013;
- diagnosed w Mild Cognitive Impairment 2013, 5 years after dementia had ended job & career.

I've been pretty sure I had a metabolic problem since 1995. Kept asking for diabetes tests. Scored negative every time. MDs ignored symptoms because I score fine ("You don't have a problem") despite repeated falls (couldn't feel w feet to maintain balance in the dark), routine passing out after meals, & progressive dementia (especially loss of episodic memory) resulting in inability to work (or make meals, or remember what I'm doing...).
I decided it was likely T3D. Was unable to find an MD or specialist to treat (rejected by 6 endocrinologists so far), & unable to find an encrinologist anywhere in Ontario who has heard of T3D.
Don't know how you would treat T3D. Decided to treat as if it was T2D:
- started low carb diet (modified Atkins), lost 20 lbs. Progressed to ketogenic diet 2016: down 30 lbs. from max weight (205 > 175);
- vetted TX plan w neurologist, suggested a dopamine receptor-agonist (rx given is Amantadine), been on it since 2014;
- researched supplements, settled on curcumin & R-alpha lipoic acid.
Considerable success with treating symptoms: partially reversed both PN (regained most feeling in feet, recovered fully in hands) & dementia. Both very slow, but I'm mostly functional. Got my brain back: episodic memory better (5 out of 10?), bandwidth improved, long term memory coming back in bits & pieces. Maddeningly slow but perceptable; I consistent, & hard to calibrate. Neurologist pleased but stunned ("Not possible").
Which simply means he hasn't read his own field's literature for 15 years. Amantadine, curcumin & r-ALA are all neuro-protective; curcumin shown to remove plaque & reverse dementia; r-ALA shows efficacy for MCI, T2D, mitochondrial disorders.
Problem: Recovery continues but I can't completely treat the root of the problem: I'm just limiting damage. PN is still significant, & if it's small-fiber type there'll be organ damage too: toss-up whether I lose feet, heart or kidneys first.
Treatment success suggests my theory (T3D) is likely correct, & imaging (MRI & SPECT) has ruled out other possible causes. Neurologist agrees etiology almost certainly metabolic, but can't help further: he doesn't do endocrinology. Endocrinologists all appear ignorant of T3D & see tests as a binary (pass/fail). Med journals report the tests all have a false-neg rate 10-28%! But its only been noticed & documented in gestational diabetes; they're not looking for it elsewhere so haven't found it. Clinicians assume the tests are infallable.
1. Does anyone have any idea why I can test negative on all diabetes tests? I even passed glucose tolerance test: 10 min. after drinking the fluid I passed out for 90 min.; woke up in time to have them draw blood, scored 5.5 (normal). And on the keto diet, my blood sugar levels never exceed 4 MM, so blood & A1c won't work any more anyhow.
2. How do you treat T3D? I've found suggestion in journal articles that metformin doesn't work on neurons: is this true? Is there an analogue that does?
3. Is there any other possible etiology that explains symptoms & partial treatment success so far?

Again, forgive the long post. It's a very unusual case, I think. I hope I've intrigued a clinician who has ideas or has seen this before. Thank you.
 
Hello and welcome to the forum.

I am sorry to hear about your experiences but we are not doctors, though there are one or two Health Care Professionals among us. Hopefully, your symptoms will ring bells with some of our members who will no doubt make some suggestions for further investigations.

As to Metformin, it is a drug that is not fully understood, as yet.
 
You may have a normal HbA1c but that just gives you an approximate average. You may have high and low swinging blood glucose (most likely caused by your body being unable to handle your current level of carb intake).

High low swinging blood glucose can give you the symptoms you list, and the wider the fluctuations the more risk of damage (such as the cognitive impairment and neuropathy). If you have moved to keto you may have reversed some of the damage, or at least halted it.

Have have you read any of Dr Bernstein’s work? And do you know what level of carb intake you have? Keto means different things to different people.

Have a look through the reactive hypoglycaemia section of forum (helpfully linked above), and maybe try getting your own home blood glucose meter to see what is happening to your blood glucose.

Oh, and welcome to the forum! :D
 
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It must be so frustrating when you don't know what is wrong with you and yet are experiencing symptoms, would it be worth trying out a pump for a few weeks?, at least you would know when your levels rise and fall? I would love a pump because testing randomly 4 times or more a day doesn't tell me much. When I read comments from people with pumps it seems that they are vital for proper management.
 
KK123 said:
It must be so frustrating when you don't know what is wrong with you and yet are experiencing symptoms, would it be worth trying out a pump for a few weeks?, at least you would know when your levels rise and fall? I would love a pump because testing randomly 4 times or more a day doesn't tell me much. When I read comments from people with pumps it seems that they are vital for proper management.
Click to expand...

Pumps? Do you mean a Libre sensor?
 
Sorry, yes, I think so, I thought they were pretty much the same, I don't know the difference. :)
 
KK123 said:
Sorry, yes, I think so, I thought they were pretty much the same, I don't know the difference. :)
Click to expand...

A pump is a method of delivering insulin to your body, like injecting. A Libre is a monitoring sensor that tells you what your blood glucose is doing.
 
Brunneria said:
You may have a normal HbA1c but that just gives you an approximate average. You may have high and low swinging blood glucose (most likely caused by your body being unable to handle your current level of carb intake).

High low swinging blood glucose can give you the symptoms you list, and the wider the fluctuations the more risk of damage (such as the cognitive impairment and neuropathy). If you have moved to keto you may have reversed some of the damage, or at least halted it.

Have have you read any of Dr Bernstein’s work? And do you know what level of carb intake you have? Keto means different things to different people.

Have a look through the reactive hypoglycaemia section of forum (helpfully linked above), and maybe try getting your own home blood glucose meter to see what is happening to your blood glucose.

Oh, and welcome to the forum! :D
Click to expand...
Thank you all for your interest & kind responses. What a great community!

I have read Dr. Bernstein, but came to keto 3-4 yrs. ago before that. I initially ran into it in medical journals, following the theme of dietary responses to neurological problems. Someone first identified the ketogenic diet as a way to treat epilepsy about 1915, I think, & probably in the UK. MDs at McMaster U in Hamilton Ontario here in Canada have used it to treat drug-resistant epilepsy in kids since 1955. A nurse who worked there commented to me dismissively that "it doesn't work of course," - not because it wasn't medically effective (it very much can be) but because they had such difficulty keeping kids on the diet: they're surrounded by candy at school, their friends, on the TV, every processed food & drink is chock full of sugar, their body mass is low & metabolism high: even brushing their teeth can throw them out of ketosis (most toothpastes have traditionally contained that much sugar).

I then read Tim Ferriss on diet manipulation (The 4 -Hour Body), one of the many body hacks he's found. He notes the diet has long been used effectively by body builders to push past the 12% body fat threshold. That practice isn't safe, but body builders are idiots & will do whatever works, safety be damned. [Worth noting, though, that coaches for these guys are keeping detailed notes on nutritional experiments & adjustments, monitoring & measuring results & sharing their findings throughout their field (bodybuilding, track, gymnastics, etc.) With other coaches: in other words, something resembling science. Dietitians in medicine OTOH, like the rest of medicine, are not practicing science much. Medicine is a pedagogical discipline, not a scientific one. Most dietitians & nutritionists I've read warn about the risks of the keto diet & the necessity of maintaining a healthy level of carbs because your body & brain run on glucose. They're spouting orthodoxy, not science, & they're absolutely wrong.]

Then in his podcast Ferriss has several really informative conversations with Dom D'Agostino, a PhD in biochem who has pursued a career in nutritional research, especially focused on the keto diet for medical purposes [N.B. doing actual science, folks]. Helpful to me in deciding that the diet was almost certainly safe for long-term use done intelligently (ie. watch your nutritional intake & monitor your body's responses). I give the diet credit for perhaps 50% of my success thus far in rolling back cognitive decline very significantly & neuropathy a little less so (or perhaps if not credit for the reversal, which may have been driven by several therapeutic aids, at least addressing somewhat the underlying cause: a metabolic disorder). Improvement in both is frustratingly slow, hard to calibrate precisely but absolutely life-altering. I'm getting my brain back!

Re. reactive hypoglycaemia: I confess I'd never heard of that. Thanks, but the symptomology isnt actually a very good fit at all, so I think that diagnosis is highly unlikely.

The best fit so far as a diagnosis appears to be T3D, essentially an analogue for T2D but where neural tissue becomes insulin-resistant, rather than muscle tissue (T2D).

I think I may get a monitor, & the Libre someone else suggested looks like the best option. My glucose levels likely don't fluctuate much (intake is almost nil & I'm pretty ruthless on fast carbs too) but it would be useful to check that anyhow. And the Libre is apparently the only monitor that does ketone levels too. I'd like to see how much they fluctuate & what drives them up best. Used to use test strips you pee on, but they become inaccurate & pretty useless once you're keto-adjusted. I can feel when I'm in the zone anyhow, but accurate measurements could be useful.

So: what I need now I think is to find ideas about how you can treat T3D, beyond diet. It doesn't appear that anyone has done research trials for any kind of treatment: I haven't found a trace of it in the medical journals yet. I did find a comment that metformin doesn't work on neurons, but I dont think that was a discussion of any kind of experimental observations or results; I think it was more an assertion not actually based on evidence (geeze there's a lot of that in medical literature, still!). Any ideas, anyone? We're looking for an analogue for metformin, that works to boost insulin receptivity in neurons the way metformin does in muscle tissue.

I have identified therapeutic agents that have been helpful in rolling back the outcomes of a metabolic disorder (still the best hypothesis). But the disorder remains, & neuropathy remains a worry. If it's still attacking my feet, its attacking organs too.
 
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