Hi everyone. I’m really frustrated. I am a mother to 2 T1 boys and also a wife to a T1. My boys were recently dx, within 2 months of each other. I like most of you, eat and breathe diabetes every stinking day. And on many levels since I have 3 to monitor (yes I have to help my husband bc he is clueless and overwhelms by carb counting/insulin administration ) so I feel like I know something about diabetes. I’m no expert or doctor but I manage my boys very well. Their A1c’s are 6.7 and 7.4. For 2 non-compliant, hormonal, children these are good A1c’s lol.
Anyways…I’ve been feeling like T-total crap lately. I thought it was just my normal mom zombie syndrome. But something kept telling me to check my sugar. So one day after an indulgent carb breakfast I did. My BG was at 212. I was shocked. I was dx with reactive hypoglycemia about 5 years ago so anytime I’ve ever checked myself before I was normal or low. So I decided to borrow one of my son’s Dexcoms to see just what it was my body was doing.
1 hour PPG is ranging from 180-250 for me
2 hour PPG is ranging from 140-180 for me
3-4 hour mark I’m usually well within a normal range
FBG I’m 95-103
Off to my GP I went armed with my info. She ran A1C, thyroid panel and some other labs. I asked her if any antibody labs were being drawn to which she replied no. My A1C is 5.6. Normal or pre-diabetic depending on who you ask. No meds for now was just advised to try and control through diet. 45g of carbs per meal with protein seems to be the most I can go to prevent a BG no higher than 150. I was dx as a T2.
We have no family hx of T1. My husband is the step-father to my two T1 son’s (so no blood line there). In 7 months time, this makes the 3rd diabetic dx in my immediate family. It bothers me…greatly. I want antibody testing done on myself so that I know where I stand. Upon speaking to an endo friend of mine he thinks I’m a potential candidate of LADA verses being T2. I’m 38, not overweight (actually borderline underweight), and no other health issues that most other T2’s typically have. My GP doesn’t feel I need to see an endo. And due to our insurance I have to be referred by her to see a specialist in order for insurance to pay. I’m trying to be as proactive as I can because I have children to care for. I don’t want to let my high PPG’s do any damage. I realize I can try to keep my meals at 45g or less…but how long do I have to do this before getting some intervention? I’ve contemplated even taking a unit of insulin with meals over 45g of carbs to see if that would help. But I’m leary. I just don’t feel like I need to play doctor too much and self medicate. But I also realize I’m not a perfect human being who can promise I will be able to keep every meal at 45g or less bc we have 9 children. My youngest is 1. I typically grab and shove what will fit in my mouth when I can. So what do I need to do to see if I’m being misdiagnosed as a T2 when I’m potentially a T1.5 and I can’t get to an endo to get any extensive testing done?
If you need your GP to refer you to an endo or to order an antibody test and she won’t do it, you might just have to find a new GP. Depending on your insurance that may be easier said than done, but there must be someone out there accepting patients who will allow you to get an answer. Does your endo friend know of any GPs that he/she would recommend? Does your sons’ endo know someone?
I would find a new doctor either a new GP or just go to an endo or get the labs online & pay for it if you can. There is some evidence now that going on insulin earlier if you’re type one can actually help a great deal. A recent discovery at a lab in Switzerland about how 3 proteins which are produced in the pancreas trigger the autoimmune attack also suggest that early insulin treatment for type 1 can perhaps even stop it from going further. Either way you will most likely end up in much better shape than waiting until you end up in an emergency.
I think your dr could be ok, unless you have other hormonal issues too. as said he can run the blood tests.
I wouldn’t think it’s LADA, it sounds a normal prediabetic. your fasting isn’t too bad, neither is your 2 hr. You know to cut the carbs down. I would target 30g so there is a bit of leeway. also if you lose the visceral fat in liver/pancreas, it should return to normal function.
google prof taylor newcastle diet (I wouldn’t do the low cal diet, as I think serious low carb is just as good or better.)
All of the endos in my area require a referral. And in order for my insurance to pay the endos claim, it would have to be submitted with the referring providers name on it. I would switch my GP but that’s going to require alot bc she is the GP for my entire family. We live in a small town and she’s the only doctor we have. My other endo friend lives out of state so he wouldn’t be much help to me on a local level. I think I’m just going to alter my diet and see where that gets me. If little to no change I’ll take the evidence to my GP and see if she will reconsider referring me out at that point. Thanks for your advice!
not that this is an endorsement of any kind…but have you though of ordering your own tests online (GAD, one of the tests for T1 ) at places like direct labs.com and you don’t need a Dr. note and take the slip to Quest or other lab…
I looked into this months back, the hitch is that you can’t order the full set of antibodies, just GAD. So if it came back negative, you’d still be left wondering if maybe you aren’t positive for one of the others.
Hi there.
Somebody mentioned (gonna check after I write this) that you don’t seem like LADA. You seem VERY MUCH like LADA and actually have very similiar progression as I had (only in shorter time).
I try to write this as short as possible but, I had reactive hypos for 10+ years before being diagnosed with “type 2” (while not being overweight and leading generally healthy lifestyle) : I had a1c of 5,7% and OGTT mark at 2h barely above the limit for diabetes (diabetes not pre-diabetes!). It progressed quite some (although I have lower numbers than a “regular” t1 diabetic even after 3,5 years) and am now on insulin. I am grateful to myself and to doctors who listened/believed, otherwise I wouldn’t get the correct diagnosis + proper treatment and would likely end up in hospital with DKA, or worse, same, but many years later+ with some ■■■■■■ diabetic complications.
So I very much URGE YOU to do the full t1d autoantibodies panel: IAA, GAD65, ICA, I2A and ZnT8!
Good luck!
Thank you! I went on trial net earlier and put myself, along with my other non-T1 kids on the list to be tested! Someone mentioned them to me that they can do the antibody testing. This hopefully will give me peace of mind not only about myself but the other kids as well. I’m very scared for 2 of my children bc they now have 2 parents with diabetes (dad T1 since 6 years old and me T2/T1.5 pending more labs), plus 2 half siblings with T1. But thank you so much for your advice. I will push until I get some clear answers!
Yes, that’s great! I’ve heard that they test children with parents who have type 1… I think even more than once (since the antibodies could develop over time), every few years or so…?
I wish you all the best! And hopefuly your children will not develop t1d.
Also, change the GP I mean, it’s very careless of them not to refer you to endo
@momof2T1s2: why not go back to your GP and tell her that:
you are living of fear of this condition
it is critical to your emotional balance to be able to have an established relationship with an endo
you firmly insist on being referred
If she refuses again to refer you to an endo , tell her that you want her notes to reflect that you asked for a referral to an endo because you felt it was important to your physical and emotional health, but that she refused: you want it documented that she refused to do so. She understands that her liability is engaged when that happens, and this may make her change her mind.
It would be mind boggling that, in a situation like yours, you would not be able to see an endo and discuss your options. I have to say that, while I have had GPs refer me to specialists in the past only because I insisted, I have never seen a case of a GP flatly refusing to refer a patient when the patient firmly insisted on a referral.
I would guess your insurance is an HMO, or something similar. I think they have more rigid rules of following the referral path, and may have specific symptoms, numbers, etc that the GP must follow, or they get penalized for “unnecessary” referrals.
Can you talk to your son’s or husband’s endo during one of their appointments, assuming they are under same insurance/network ? If so, maybe their endo can give you advice, or key terms to use that would be in line with the ‘rules’ of your insurance to validate need for a referral.
I don’t know how you came to that conclusion based on the a1c and BG? It sounds the typical insulin resistant, normal/prediabetic to me, but the GAD c-pep blood test will show, either way the BG is well controlled for now and I would think the Dr wouldn’t suggest any medication, oral or injected at this stage. He may even be reluctant to run the T1 tests.
The best thing you can do for now is to aim to have no more than a 40 point rise from your pre meal number, I’m guessing it’s less than your FBG. (or it should be, with the right carbs, FBG is normally the highest before meal number)
I’ve given that alot of thought! I’ve been printing stuff off about LADA, Journaling my carb intake and keeping up with BG’s. Hopefully after she can see the info I can persuade her
I am sorry if my statement came out as arrogant. Please read my other reply in this topic. The thing that stands out to me the most are reactive hypos which are very typical for LADA. C-pep test is not good to determine if it’s lada, it was normal for me and probably still is. If LADA is caught really early on it can be very similiar to “normal” prediabetic stage, although (I’m not quite sure on this one, sorry, it’s been a while since I was reading about all the first phaase, second phase insulin etc.) I think LADA don’t usually have high fasting sugars, but only post meal, at beginning. For most LADA patients it is definitely beneficial to get on insulin early on.
I’ve had lows for quite some time. I’m 38 now but honestly I’ve been dealing with lows since I was 21. When I was 32, after the birth of my 5th child, is when my lows started getting really bad. I chalked it up to the fact that I was breastfeeding. I really never worried about the possibly of being high bc I was always going low.
Hi momof2T1s2: “Pre-diabetic” can also mean pre-Type 1 diabetes. I agree with Krisa, you sound like classic pre-Type 1/LADA, especially with the family history of Type 1 diabetes. I hope that you are able to get autoantibody testing via TrialNet. Sadly, misdiagnosis in adults (adults diagnosed as Type 2 when they actually have Type 1 diabetes) is the rule not the exception, and we need to be our own best advocates within the medical system. Best of luck to you!
) so I feel like I know something about diabetes. I’m no expert or doctor but I manage my boys very well. Their A1c’s are 6.7 and 7.4. For 2 non-compliant, hormonal, children these are good A1c’s lol.
I mean, it’s very careless of them not to refer you to endo
