New Here and Would Value Your Opinion

Type 1 and LADA New to Type 1 Diabetes
1

Hi,

I've been doing a lot research on diabetes the past few weeks, and keep coming back here, so I decided to join!

My name is Jennifer, I'm 32 years old. I'm 5'1' 100 lbs. I never had regular "cycles" in my life, was diagnosed with PCOS (self diagnosed my OBGYN couldn't believe it because I don't exhibit any of the tell tale signs until they saw the labs I requested) when trying to get pregnant. I had gestaional diabetes with both my pregnancies, which I controlled with diet only.

Since the birth of my last child 15 months ago, I've tried to stick to my GD diet, and do test occasionally. My fasting is usually high 80's to low 90's and my 2 hr post meal is usually fine (under140) unless I eat something bad like pizza, pasta, rice,etc...then it could be in the 160's 2hrs later. I excercise regularly and in fact will be doing my first (very small) triathalon next month.

I had my OBGYN do my Ha1C last September 2009 just so I could stay on top of things. She was never concerned about me developing Type 2 diabetes. It came back 5.4 and they said that was great.

The past three weeks I just haven't felt right. I'm not sure if it's in my head or not...I can be a bit of a hypochondriac. Anyways, I've just felt run down, my eyes are heavy, and feel like I'm in a fog, and have a weird feeling in my mouth, but still not sure if it's thirst or not.

I decided to get a physical and got my labs back last week, and will be meeting to discuss with my doctor next week. All my labs came back OK, except my Ha1c was 5.7...which is just out of "normal" per the report. My fasting was 79, my thyroid was fine, iron was fine, all my cholesteral levels were perfect. I was secretly hoping my a1C would be better...I wonder what it would be right now if I ate fast food, drank soda, etc...

SOOO...if you've made it this far, I'd really value your opinion. I'm curious to see what my family doctor will have to say. How concerned should I be about a 5.7 a1c given my history? OH...and my dad and my grandma are both Type 2.

I've been reading up on LADA, or Type 1.5...and I'm wondering if I should request the c-peptide and the GAD test? I just don't feel like I fit into the Type 2 category.

I've been stressing about this the past few weeks. My husband thinks I am overreacting, and maybe I am.

Should I go see an endocrinologist? Should I just continue to try a little harder with my lifestyle and get re-tested again in 3 months? I don't want to go overboard but I don't want to blow it off either, if that makes since. Is it possible that my BG has always been off my whole life, but I've just never gotten to be a true diabetic?

If you've read this, thank you. I feel that many of you, with your backgrounds and personal experience with diabetes, would provide greater advice than even a physician or my ob/gyn!

Thanks again for any support and I will try to support you as well.

Jennifer in Texas...

2

Hi Jennifer: I would say you really should go to an endocrinologist as soon as possible, do not delay, and request a c-peptide and full-screen antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies), which is the gold standard for the diagnosis of Type 1 autoimmune diabetes. There is a form of gestational diabetes that is called “autoimmune gestational diabetes”–a recent article in the July 2007 issue of “Diabetes Care” indicated that autoimmune gestational diabetes (new onset Type 1 diabetes) accounts for about 10 percent of all Caucasian women diagnosed with gestational diabetes. In a recent study of Sardinian women (Reproductive Biology and Endocrinology, 2008), 40 percent of women with GDM were antibody positive (GAD, IAA, and/or IA-2) and had autoimmune gestational diabetes. (Sardinia has the second highest prevalence of Type 1 diabetes in the world, after Finland).

It is important that you quickly determine what type of diabetes you have–if you have Type 1 diabetes, you should be on insulin, even at low doses. Quite a few women here on TuD developed Type 1 diabetes during pregnancy. Please reach out to them, including Kelly. Best of luck to you, and TuD is a great place to get support and learn a lot.

3

Welcome, Jennifer.

Sound advice & wonderful info from Melitta. I second her suggestion to get a referral to an endo. You’ve done beautifully controlling your BG, but it is creeping up. No doubt it wouldn’t be as good if you were less dedicated. Thankfully, you’ve done a lot to not stress your beta cells.

The symptoms you mention were similar to mine when my BG was high, though I had no idea at the time what was causing them.

Did your GP just test TSH? If so, this doesn’t give an accurate picture. Free T3 & free T4 are the tests needed to assess thyroid function. Since Vit D3 deficiency is widespread, this another good thing to have tested. The only blood test that can diagnose vitamin D deficiency is a 25-hydroxyvitamin D. It’s recommended that levels be above 50 ng/ml (125 nmol/L) year-round.

Keep us posted.

4

While I really respect Melitta and Gerri, I gues I have to provide some counterpoint to their suggestions to going to the endo right away. You may be “dismissed” by the endo. Your HbA1c is only 5.7, which is just barely a “prediabetes” reading and the HbA1c can have some errors. A number of US labs these days have been currently found to have HbA1c errors of +/- 0.35%.

An alternate strategy would be to start home blood sugar monitoring. Get your current doctor to prescribe 3x a day testing, and start measuring your blood sugar first thing in the morning and 2 hours after a meal. If you are having blood sugar problems, it should be quite evident in those readings.

I commend you for getting on top of things, and Melitta and Gerri have given you prudent advice. But my experience seeing an endo for the first time with an HbA1c of about 6.?% was that I was dismissed as not needing his expertise. He would hear me out, I got no tests and at that first meeting he promptly “fired” me, saying I did not need his services, that there were patients with terrible blood sugar control who needed him more.

I am not saying that you shouldn’t go see an endo, rather it might be good to collect the evidence on your condition first.

5

Do you have an internist you can see? I’d just ask for the tests to see where you stand. GD have a good chance of developing type 2 down the road, and your concern is good. For peace of mind, get some blood tests run and if you can test now and then, do so.

Good luck!!

6

Hi Jennifer…

First off, let me tell you… that PCOS is basically an unrecognized form of Diabetes. If you have PCOS you may as well assume you have Diabetes.

Seriously.

One of the hallmarks of PCOS is hyperinsulinemia, and unfortunately, this only gets worse and worse with time. An a1c in the high 5’s is never normal for one of us. It only means your body is making more and more insulin…

I know a lot of people will come and talk to you about Type 1, and all this stuff… but honestly, PCOS does not give a royal rat’s ■■■ (pardon the French) if you are skinny, or overweight. PCOS will start making you hyperinsulinemic, it will will start with time making you overweight, it will (unless you end up by random chance having an autoimmune attack) end up making you a Type 2 Diabetic, if you don’t seriously watch it. And the ONLY way to watch it is with a low carbohydrate diet, or a low carbohydrate vegetarian or vegan diet… One of the two.

In PCOS, the body’s fat stops working properly. You see, unlike most people believe, fat is not a passive element just sitting there, doing nothing. Fat is an organ; it makes hormones which interact with our body’s other hormones, and help us maintain proper bodily functions. Fat makes a hormone called adinopectin. In us, women with PCOS, fat does not produce enough adinopectin and, therefore, there is no appropriate communication going on with the hormones leptin (which controlls hunger and satiety) and insulin (which metabolizes glucose.)

Because there is this miscommunication with our fat, our body produces MASSIVE amounts of insulin. These massive amounts of insulin bathe the ovaries, and they cause excessive androgen and testosterone production (facial hair, hair loss, infertility problems, enlarged ovaries, cysts in the ovaries, irregular or nonexistent periods, acne, mood swings and fluctuations including anger, pain around the pelvic area sometimes, skin tags, acanthosis nigricans or velveting and darkening of skin areas like the joints and neck, insulin resistance, and weight gain, etc.) The symptoms are endless.

You truly should lead the life of a Diabetic, NOW. Right now. I should know. I’ve had PCOS since I was a child, and NO ONE told me about any of this… and now I have Type 2 Diabetes.

I suggest going to an Endocrinologist who is specialized in both Diabetes, and PCOS, and a GOOD reproductive ob/gyn.

You will need to be, either on birth control pills or Clomid, or Metmorfin. (Yes, even if you were a Type 1, which I seriously doubt – it’s not impossible – but it’s a far shot in the dark – you will still need to take Metmorfin because you will always have insulin resistance, due to the hyperinsulinemia. If you catch it now, you will avoid serious weight gain.)

I want to invite you to join our group, Women with PCOS and Diabetes. It is a private, moderated group in which we can talk about whatever we want, without needing to feel embarrassed about any of the more salient points of PCOS.


Welcome to our community… :slight_smile: I’m gland you found us.

7

Thank you Melitta, I will probably follow your advice and requests these tests.

8

Hi Gerri,

Yes, it was just the TSH…came back 2.8 which was right in the middle of the range.

There was a lab called Vitamin D 25 OH…sounds like the one you’re talking about? Mine came back 32…the range was 30-100…I was going to ask about this since it was pretty low and I thought it could possible be the cause of me not feeling great. Thanks for bringing it up.

9

Thanks bsc, I totally get what you mean about my a1c not being high enough. My in-laws are both Type 2 (and not diligent!) and my sister in law is an RN…and they totally blow me off about a 5.7…

I do test at home, but I tend to be neurotic and doesn’t seem worth it maybe. My fasting is always high 80’s, low 90’s. My 2hr post meals are usually under 140. If I eat very healthy, like salad and meat, it could be in the high 90’s, low 100’s. Last night I had eggplant parm with a little dreamfield pasta (a SMALL amount), and a heap of fresh green beans…and it was 118 2 hours later. I worry I am not eating enough though because I’m scared of a high reading.

I will definitely “make my case” before seeing and endo.

10

Thanks Lizmarie.

I haven’t given the PCOS much thouht except when I was TTC. I guess since I don’t exhibit any or the normal problems associated with it, on the outside. You taught me something I will keep in mind!

And I feel like I pretty much do live a diabetic lifestyle, although probably cheat a little more than if I was officially diagnosed.

Jennifer

11

I have a question for you then. I have a son with type 1 and no other autoimmune diseases in our families. However, my sister was diagnosed with PCOS a couple of years ago when she started trying to have children. She has never conceived despite going through fertility treatments. (That’s not an issue anymore since she’s adopted two kids) but my question for you is this: She is very thin and always has been (although she eats low carb and low calorie from what I can see) - should I try to encourage her to see someone about it? She doesn’t react very well to suggestions from me or my mother - since these are issues we never had and don’t quite understand. But she is my sister and if there’s something she should be doing about it beyond a healthy diet, I want to let her know.

12

Hi Jennifer,

GPs only do TSH. TSH doesn’t give the appropriate info.

Yes, that’s the right D test. 32 isn’t bad at all, but 50 is better. Vit D3 supplements are inexpensive.

bsc is right about endos dismissing us until things are out of control. Hopefully, you can find one who appreciates a proactive, informed patient. I’ve gone through three endos in two years & most people shop around until they find an endo who understands their goals.

13

Well, yes she should see someone… because PCOS can destroy the ovaries, with time… And uncontrolled it can lead to cancers, cardio vascular disease, and the need for a hysterectomy. She should be on some kind of medication for the PCOS… Just a simple pill, once a day. She may not exactly be terribly insulin resistant right now, even though she may have some hyperinsulinemia going on (controlled by diet)… but yes, the anti-androgen medications are a must… Especially if she has any manner of irregular periods. That’s a big red flag that she has cycsts in her ovaries.

It’s difficult to encourage people to seek medical attention… It might be a good idea to contact your local gyn, or even Planned Parenthood, for pamphlets and information, or to even purchase a book. If there’s a moment when she has some symptom that is bugging her, say “Hey, maybe it’s time to see a doctor about your PCOS… I hear that can affect you in soooo many more ways than just your fertility.” That kind of thing. :slight_smile: Or, you can read a lot of this info for yourself, and leave it laying around the house… heh Make her think it was HER idea. :slight_smile: Good luck!

14

Your sister could request an A1c test from her doctor. Would be great if these were a standard part of blood testing & hopefully one day they will be. There are home A1c tests, if this is something she’d do.

Certainly not everyone with PCOS has diabetes, but worth encouraging her to be tested to be sure. Fasting glucose is not always an indicator.

15

I have no insight to add, but just want to say “Welcome to TD.”

Mark

16

Hi Jennifer,

First of all, I just want to say that you should be very proud of yourself for taking the initiative to understand what’s going on and working to do the best that you can. I meet so many people who play that “I won’t ask because I don’t want to know” game and it’s tragic.

I don’t really know what’s going on with you and the fact that you’re not sure does warrant further testing, in my opinion. What I can tell you is that the severity of your blood sugar fluctuations is not an indication of what Type of diabetes you have. Some docs and endos will argue that you’re too “mild” to have T1 because T1 occurs so quickly that it’s evident at the outset.

I’m living proof that that is not the case. I had symptoms of diabetes going back to 2003. Was tested in pregnancy in 2006/7 and my bgs were in the 100-140 range 2hrs post meal back then. In my second pregnancy in 2008-09, I failed the oral glucose tolarence test at 324 and my A1c at 5 months pregnant was 6.8. I’ve been on insulin since then and now if I forget to take my insulin or don’t take enough, I go well in the 400s. My fasting in 2006 was 108, my fasting in 2009 was 142, my fasting this morning with my regular insulin was 183. (I know that’s bad, btw, and working to fix).

I don’t know if you’re in the same boat, but if you are or you aren’t, keep on top of it and keep searching for answers.

17

Jennifer,
Welcome to TuDiabetes, I hope this is all a false alarm.

First realize there is a certain variation involved in the A1c test. Your different readings may in fact not indicate a deterioration in your blood sugar control. As an aside a mental fog was one of my symptoms.

My advice is to educate your self and gather data through testing your blood glucose levels. The website bloodsugar101 at http://www.phlaunt.com/diabetes/ was very helpful to me. I would read the entire site but in your case I would pay particular attention to the links, titled How Blood Sugar Control Works–And How It Stops Working and How to Lower Your Blood Sugar. This will give you the information needed to understand your meter readings.

Forums like this can be really helpful. You will be exposed to a wide variety of opinions on treatment, diet etc. This will shorten the learning curve, and help you formulate your own opinions and plan of action.

The book, The First Year: Type 2 Diabetes by Gretchen Becker is also very good. If you unfortunately find yourself with a blood sugar control problem I would recommend the Diabetes Solution by Dr. Richard Bernstein, this book recommends extreme carb restriction and is not for everyone, but I would still recommend reading it to familiarize yourself with the concepts.

While the onset of diabetes in some is very sudden in others it is a slow slide downhill until the tipping point is reached and then the slide starts picking up pace until the person finds themselves with uncontrolled blood glucose.

In reading lots of posts on various diabetes forums I have acquired a somewhat jaded view of the medical profession. Many of them dispense appalling advice. The earlier in the progress of the disease the intervention happens the less drastic measures need to be taken. Yet many of them assume deterioration is inevitable and won’t intervene until its too late. In defense of the medical establishment they are under tremendous pressure to contain costs, and I am convinced that the vast majority of people want to continue eating the way they have always done and just take a pill. In many cases this just flat out will not work.

So… first Test Test Test. I would initially test first thing in the morning, before each meal and at 1 and 2 hours after eating.
Also note what readings correlate with which foods. This will give you a baseline to compare future results to.

If you feel comfortable using it I would recommend using a meter that has software so you can download your meter readings onto your computer. Then you can produce easy to read reports to take with you when you see a doctor. This will greatly increase the chance your doc will look them over in detail and understand what is happening. It will also make it easier for you to understand what is going on with your readings.

Assuming your readings don’t raise any alarms, you then can cut back on your testing ( the cost of strips can add up real quickly on this program). Then periodically resume an intensified testing schedule so that if your control is deteriorating you can intervene early in the process.

Second educate yourself about the disease so you can recognize if a doc, nurse, dietitian, or CDE is blowing smoke. You can then fire them and look for another. This will also give you the ability to interpret your readings yourself.

Again welcome and I applaud you for your proactive stance.

18

Your story sounds exactly like mine. My father and grandmother have type 2 diabetes. I am 5’4 107 lbs. 23 years old. I had gestational diabetes during pregnancy with my son 4 years ago. I was just diagnosed this past January as a type 2 diabetic (endocrinologist said my only risk factors were my gestational diabetes and my family history: dad,grandma)…I was never tested at my 6 wk checkup after giving birth or anytime there after until I was diagnosed in January so I am not sure what my #'s were before the actual diagnosis but my first fasting was 126 and my first A1C was 6.1. You should eat a high carb meal and see if you are at 200+ 2 hours after, (two readings of 200+ anytime can diagnose diabetes.)
Make sure you educate yourself good job keeping on top of things I was blindsided by the diagnosis and absolutely shocked, I wasn’t even warned about developing diabetes after having gestational.