Confused and without much support

Type 1 and LADA New to Type 1 Diabetes
1

I’m new to this site and I’d like to thank Mr. Peachy for the kind invitation to join. I posted a question on AnswersYahoo and he was gracious enough to offer his words of wisdom and support.

First of all, I have not been diagnosed as being diabetic. In fact, my physician seems to think I’m blowing things out of proportion and hasn’t been too terribly pro-active in pursuing things. Last summer I was exhausted, extremely irritable, slept 12-14 hours a day and never felt rested, was having balance issues, intermittently blurry vision, urinating frequently and had tingling in my hands and feet to the point that I was having trouble holding smaller objects or even walking “right”.

I went to the doc, explained what was going on and before I could even finish he interrupted and declared that I was “depressed and need an anti-depressant”. He didn’t even want to do any testing to see if there was a medical reason for my symptoms…something I thought a doctor was supposed to do. I mean, when have you heard of depression causing tingling in your hands and feet?

Anyway…it was like pulling teeth, but I argued my way into getting a Thyroid panel, a Metabolic panel and a B12/Folate level. The thyroid came back within normal limits, as did the Folate. My B12 was on the lower edge of normal but “still within normal range, so it doesn’t need treated”. My FBS that particular day was 98, a number that seemed strangely “high” since I’d had some trouble in college with it going very low…like 37 kinda low.

A cousin in another state told me about how her doc had treated her borderline low B12/fatigue symptoms with B12 injections and how much better she felt. I returned to my doc with this info and some research I found from the National Institute of Health recommending treatment for borderline low B12. Again, he was reticent to go along but did so in order to get me out of the office.

The B12 shots have helped with the fatigue and tingling…as long as I take them FAR more frequently than usually prescribed. I returned to the doc and asked to have more testing for DM, such as an A1C and/or OGTT. He refused because my 98 fasting sugar 4 months before was “still within the norms”. Seeing a pattern here??? He refuses to think outside the box as long as lab values fit somewhere into the so-called normals. I argued loud and long and he finally agreed to my suggestion of getting a home meter. Again, I think he just wanted me out of his hair and figured the best…and fastest way…was just to agree with me.

I’ve never been pregnant so I’ve not had any OGTT’s in the past and can’t speak to my likelihood of having had Gestational Diabetes. I decided to buy an A1C kit through a medical supply company and it was 6.0. That “normal” A1C coupled with the FBS of 98 have given my doc even more ammunition to say “everything’s fine”. He can’t, of course, explain why the home 75 gm OGTT tests I did show 1-hour sugars of 185 & 119 and 2-hour sugars of 141 & 148, but he IS quick to say that I’m just making a big deal out of numbers that “just aren’t that significant”.

Seven months ago I was seeing AM fasting sugars that were 105ish- 115ish, usually only during the 2 weeks leading up to (sorry, guys) ‘that time of the month’. Now I’m finding sugars like that almost every AM, regardless of what time of the month it is. I checked my sugar this AM (after fasting for 10.5 hours) and it was 105. I ate a breakfast at 8:30 AM that consisted of a bowl of Rice Chex cereal with 6 or 8 fresh strawberries cut up and tossed over top then drizzled with maybe as much as 2 Tbsp. of heavy cream - not even enough to pool on the bottom of the bowl. Yeah, yeah, I know…lots of fat but I hate the taste of milk and soy milk, too. Anyway, I barely got that last bite in and I was feeling RAVENOUSLY hungry already. At 9:45 AM I started feeling really weak and shaky and my heart was pounding really hard and a mile a minute. I checked my sugar again and it was 169. I checked again at 11 AM and it was 130.

I struggled for 20 or so years with what my idiot doctor refused to investigate and,instead, just called IBS (Irritable Bowel Syndrome). I’d have horrible boughts of stomach pain, diarrhea and/or constipation. I was never convinced of his diagnosis and eventually went gluten-free on my own. My symptoms disappeared completely. It’s pretty obvious, at least to me, that my dumba$$ doctor gives pretty bad care and now I’m left to wonder if I have a brewing diabetes problem that he’s going to let go until the sugars are so bad he can’t deny it anymore. By that time, of course, a good deal of damage could have been done. I’d like to find someone else but I live in a VERY rural area where the choice of doctors is severely limited.

That’s why I’ve started seeking out “real” diabetics to see if the people who deal with the problem every day agree with my doctor, that I’m over-reacting and worrying over something that’s a non-issue. If not, and you all agree with me, I’m hoping that you can give me some guidance on what I can do for myself in spite of a doctor who seems bent on ignoring things.

2

I’ve only been a type 1 for 53 years, so I don’t even know what all the initials stand for. I don’t know what your insurance or financial situation is but at the very least, I would get another opinion, if possible from an endocrinogist.

By the way, WELCOME to TuDiabetes. More than likely you will hear from more people than you want. ;^)

3

Hi Maureen,

Welcome to our community.

Get a new doctor immediately, even if it means traveling a distance. Your well-being is more important than the inconvenience of having to drive. This man knows nothing, is completely unresponsive to your concerns & medical needs. Agree that he’s a dumba**.

You are not overacting. Good for you for taking your health seriously & for testing your BG. Normal fasting is under 100, a normal A1c is around 4.6-4.8. Your numbers are significant to warrant attention.

Until you can get to a competent doctor, lower the carbs you eat to help keep your BG more level. Since you’re testing, you’ll know how food is effecting you. Jenny’s wonderful site & book http://www.bloodsugar101.com are a great place to start. Avoid the high carb foods like grains, juices, fruits, beans, starchy vegetables & see if that gets you into a more normal range. Many people don’t handle milk well because of all the lactose. Cream doesn’t have near as many carbs or lactose.

There are people whose fasting numbers are normal, but who experience huge spikes after eating, so fasting BG is not adequate to make a diagnosis anyway.

When you find a new doctor, insist on a C-peptide test (to see how much insulin your pancreas is producing) & a GAD antibody test (this measures if & how much your pancreas may be under attack). Some doctors will base a diagnosis of Type 1/Type 2 merely on glucose readings & this isn’t enough.

Keep us posted!

4

Hard to get proper treatment which in my opinion is insulin until it is too late although some ares of the US have forward looking Doctors but it sure looks like you don’t.

It was a great idea to get a meter and keep an eye on this. You can do your own glucose uptake test once in a while buy about 75 grams of glucose pills and eat them in one go and measure 1 ,2, 3 and 4 hours and see how the results compare to what wiki says they should be. If I did that mine would be in the 300’s or more. In your case they should be very close to normal.

Otherwise go on a low carb diet no patatoes, rice, bread cereals and anything that you find with your meter that elevated the BG. The zone, Atkins, Southbeach anything but the ADA diet which is much too much carbs. Get as much exercise as possible. A mail in A1c test once a year too.

No you are not exaggeration getting diabetes is like terminal cancer you die but still are allowed an unpleassant stay on earth.

Keep a log of all this and you can do a lot with diet and exercise. You should be ok for very long sine you have taken action and at least identified the beginning of a serious problem and take action to keep it a minor problem instead of your worst nightmare. Best of luck and god be with you even though your doctor is not. You deserve to be well taking things into your own hands and Mr. Peachy’s healthing eating could also be and excellant approach since your pancreas is not damaged much yet.

5

You really need to find a new doctor. One that will really listen to you and help figure out whats wrong

6

Hi, Gordie…

I’m sorry if all of the initials confused you. I knew it was going to be a long post, as it was, so I tried to abbreviate where I could. Here’s what I meant by all of it:

FBS - fasting blood sugar
OGTT - oral glucose tolerance test
DM - my way of abbrev. Diabetes Mellitus…(I think I spelled that right)

I’m going to try to find another doc for a second opinion like you suggested but I don’t know anything about any of the doctors from surrounding communities. I guess I’m just a little “gun shy” after the way my doc has been treating me and I’m afraid of getting another jerk who basically just wants to write me off as some neurotic hypochondriac.

7

Thank you, Maureen. You’re too kind. I applaud your fortitude in taking this task on yourself. Anyone here can tell you that I’m no big fan of modern medicine and am continuously looking into alternative ideas. One thing that I think should be done before crafting a plan of action is to get a C-peptide test so that we can rule out LADA. In the mean time, keep the refined carbs to a minimum, avoid convenience drinks with HFCS, and stick to primarily raw, natural foods. Once we’ve positively narrowed it down to insulin resistance, we can start working on a strategy. Manny (the tudiabetes founder) can tell you more about LADA, or you can poke around the site and learn more about it that way. The odds are that it will be insulin resistance (type two). Since most of us have T2DM, you’ll probably be overwhelmed with ideas very soon.

Warm regards,
Craig

8

Great advice, Gerri

9

Dear Maureen,
I am very new to this as well - having been dxed with Prediabetes in January (based on FBS) and then just since April 1st it was officially changed to diabetes. But I was seeing first a cardiologist and then an endocrinologist and both of them were very sensitive to the issues. It does seem like your blood glucoses are climbing and I would recommend calling an endocrinologist, explain your situation and I am sure they’d see you even without a referral.
Best of luck with it. You seem to be right on top of your situation which is excellent.

10

Hi Maureen and Welcome to our little nest of nesters!..First of all you are in good hands with Mr. Peachy… listen to what he says…second of all you are in good hands with just about everyone on here especially Gerri and Anthony! All have helped me tremendously! I think you are already going in the right direction with your care,but it is very important to find a good doctor even if you have to travel aways! Your health and your life is worth those few miles! I know because I live in rural america,but thank goodness I have a good GP and travel aways to a good Endo.Take care of this before you start having repercussions because most of them are not pleasant.I have been absent from here for a few weeks now because of major dental surgeries and work all due to the big D. It effects everything! Good luck and keep us posted on your findings and let us know how things are!
God Bless,Deb

11

While fasting BG should normally be under 100 mg/dl, normal fasting for PWD is considered to be anything under 110 mg/dl… so it’s a concern but not enough to get one’s knickers in a knot about. Similarly, A1C of 6.0 is at the borderline edge of normal – so again, not enough to get one’s knickers in a knot.

There are varying schools of thought regarding whether or not a one-hour (or 72-minute) postprandial glucose check is of diagnostic use; however, a two-hour postprandial check should be under 120 for someone without diabetes, and under 140 for someone with diabetes.

So based on your measurements, you may be borderline – perhaps having impaired fasting glucose and/or impaired glucose tolerance, two different types of glucose metabolism issues that can sometimes progress into the levels associated with diabetic tissue damage.

From what I’ve been told by doctors who work with diabetes, obesity, and similar issues, neither a c-peptide test nor a GADA test is likely to be a useful diagnostic at this time – the results will not be descriptive unless and until there is significant autoimmune damage and/or significantly-reduced insulin production.

The descriptive tests at this stage are likely to be (1) serum insulin levels (if they are high, you may have some sort of insulin resistance; if they are normal, the test is nonprescriptive; if they are low, then you may have some glucose-metabolic dysfunction), (2) gene testing for both T1 and T2 alleles which would determine whether or not you have the potential to develop diabetes, and (3) OGTT.

12

You really need to seek an encrinologist, they have more knowledge to diagnois you. You will have alot of support here no matter what. Keep in touch with us, we would like to know how you are doin. Good luck, patti

13

Hi Maureen,

Sorry–I know how frustrating it can be to not have a caring, responsive and well-informed doctor. I essentially diagnosed myself with PCOS (polycystic ovary syndrome) after years of having frustrating ‘female’ problems, but did finally find an endocrinologist who is on top of current medical research. I do urge you to look for a specialist, even if it requires going somewhere that requires an overnight stay. Even if you can only go once a year, at least you might be able to get a correct diagnosis and on the right track with treatment you can do on your own.

Doing the self-monitoring with the meter is a really good idea … although I once had a big argument with my insurance company because they refused to pay for “preventive” medicine, and I wasn’t actually diabetic. (Apparently they’d prefer to wait until someone becomes catastrophically sick and then requires costly medical care rather than paying for a relatively cheap method of self-monitoring. Sounds like corporate logic to me!)

I also have the cyclical highs that you experienced. My endo says this is normal for some women and there’s not much you can do about it–although it still bothers me. It’s not uncommon on those days for me to have a high morning reading (105-115-ish), eat breakfast (say, fruit and an English muffin) and then had it go back down into the 80s 2 hours after eating.

I’m also seeing a nutritionist–which, again, might be hard for you if you live in an area without a great variety of medical services. But basically, she’s not telling me anything that you couldn’t find by doing some reading. I’ve found that what’s most effective for me is common sense: portion control, avoiding fast/processed foods as much as possible and trying to get at least some activity every day, even if it’s just lifting some weights at home or walking (in place, if the weather outside isn’t inviting for an outdoor walk). But you might also need some medicine to help with insulin resistance, which it sounds like you may have.

So, no, it’s NOT all in your head, and you’re not hysterical or a hypochondriac. You are being proactive about your own health, and that’s a good thing. Good luck finding a doctor who will respect and support you!

14

Yeah, my insurance company isn’t into paying for much of anything since my doc won’t even call me pre-diabetic. Any further testing, endo visits (if I can find one - our community hospital doesn’t even have one), second opinions, testing strips, etc. are all coming out of my pocket and, in this economy, I’m finding my search for answers is having to take whatever course and speed that the money flow allows.

I heard on Good Morning America this morning that the economy and job losses are causing some diabetics to skimp on doctor’s visits, medications, testing supplies, etc. I had to chuckle to myself since I can relate to some degree and I’m supposedly not even diabetic.

15

Extremely frustrating for you to be so proactive & to have such an incompetent doctor. Want to scream. Possible to browbeat this doctor to give you a referral to an endo anywhere, or demand that he do C-peptide & GAD tests? Your best bet is finding another doctor who will take your 6.0 A1c & high readings seriously. Non-diabetics don’t have BG of 185 & the others you listed.

Am so sorry for what you’re going through.

16

I told Craig (Mr. Peachy) earlier today that I’m sure it sounds insane, but I almost wish that I would just get full-blown diabetes because at least I would have a more clear-cut path to how to care for myself and the satisfaction of being able to go back to my doctor and say, “See? I wasn’t the stupid fool you thought I was after all!”

It’s just been so frustrating to me to have my body acting like a diabetic one day and then being perfectly normal the next. There are times I second-guess myself and wonder if maybe my doc is right, that I’m just being paranoid over nothing. Then I get an off-the-wall sugar and I get angry that I’m not being taken seriously. It’s hard to believe that with all of the technological advances we’ve seen in medicine, many of them within my own lifetime, that there are still doctors out there spewing the “it’s all in your head” schtick.

17

I can certainly understand feeling that way. Though given your doctor’s attitude & ignorance, you’d have to be DKA to get him to pay attention.

Hey, I’m Type 1 & some days my body doesn’t act like one with diabetes either.

A friend of mine went to her doctor repeatedly because she jumping out of her skin with anxiety. She lost weight, felt horrible & was snapping at everyone. She went to bed in tears every night because she thought she was losing her mind. Doc gave her anti-anxiety meds, tranquilizers & told her it was in head crap. When the meds didn’t help, he said it was menopause & all the other sexist things men say. She kept asking if it was menopause why was she losing weight? He told her she needed to lose weight anyway & it was good for her. Then, he wanted her to see a therapist. Idiot!

She finally became fed up & went to another doctor. From her symptoms, he knew what was going on. She had a tumor on her parathyroid gland that was causing her body to excrete massive amounts of calcium. (Had the first doctor done so much as a urine test, he would have seen this.) Without sufficient calcium levels, her every nerve was on edge just as she had described. So much for it’s PMS, menopause & all in her head.

18

Nothing like a little metabolic acidosis to wake him up. Then again, he’d probably tell me it was nothing…then try to bleed me or apply leeches. LOL. I seriously think the man is still in the Dark Ages when it comes to medical practice.

19

Know the feeling. 10 years ago when I asked my Endo about insulin. He said you don’t want to touch that s==t with a ten foot pole. Well now I need 100 units or more to survive and I have a miserable life. A little insulin then may of kept the disease in a manageable range. And I agree an A1c of 6.0% is definetely diabetic.

I really don’t understand why the Doctor’s don’t take the disease seriously when it is possible to do a lot to keep it happy for a long time. When it becomes unmanageable then they blame you for not trying hard enough. I think it is because most of them have way too big ego’s being the creme de la creme of our students.

20

My PCP says the local hospital’s lab says an A1C of 6.1% is the upper limit of normal, therefore so am I. He claims that A1C’s in the middle-4’s like many diabetes-related sites recommend are “completely unattainable” even in known non-diabetics.

To me, it appears that the man goes entirely by lab ranges and nothing else. He doesn’t look at any other factors. With the exception of the A1C, lab results are only a snapshot of ONE day. Since he’s not willing to look beyond “official” labs and their ranges, if it happens to be a good day for someone then they don’t get diagnosed in a timely manner. It’s sad.