I'm very scared because doctors don't take my high readings seriously!

I was diagnosed with gestational diabetes on 2009. I had the baby, she is almost 2 and I’m still diabetic. I was told that I am now type 2, they ran a few tests on me. My fasting blood sugar is usually between 102-122. My readings 2 hours after eating are usually between 135-170 depending on what I eat. My previous doctor didn’t want to give me any medication because he insisted that my glucose was fine (because my A1c was 5.2). I moved to another state and found a specialist (endocrinologist that specializes in diabetes) and she ran some tests on me again and my A1c is 5.6 now. She told me " you don’t have diabetes"…I told her, “yes I do, my glucose is high after eating a low-carb diet, if I eat a regular diet I feel really sick and my glucose would spike over 200!” She said, “well your A1c is indicates normal blood glucose, so you are fine”. I don’t know what to do at this point. I know I have diabetes but the doctors don’t take me seriously, I am killing myself doing exercise and dieting to barely get the readings I mentioned above! I am very skinny now (119 pounds and I am 5’7") I used to be 130 pounds before my pregnancy and diagnosis. I demanded the doctor to give me some type of medication so I can eat more because I was almost starving! She gave me metformin and that helps me get my glucose under 150 (2 hours after eating), but my fasting readings are still between 102 and 122. Maybe the doctors think that these readings are ok, but I am 33 years old, I would probably accept that if I was on my 70s, but I don’t even think I will make it to that age with these readings. I don’t know what to do, I am very scared and sad. I can imagine what my high readings are doing to my body, and I have kids to take care of, and to live for. Please help me!

P.D. My doctor didn’t even want to prescribe me the test strips because she said is not necessary, since my A1c is only 5.6!! I have to buy them with my own money and they are expensive, as you should know!

Oh wow! I am so mad, on your behalf. Some doctors are, frankly, idiots. That’d be like some dimwit telling me ‘Hey you’re cured! You don’t have Type 1 anymore!’ (…because my last A1c was also 5.6). Of course WE know that A1c isn’t everything - I wish some doctors would figure that out!

Congrats on obtaining a 5.6 given you aren’t getting support from your doctor.

I’m sorry, but I don’t really have any suggestions besides it might be time to, again, look for a new doctor. You are a customer, they are providing a service. If your doctor’s customer service is as bad as it sounds, it’s time you fire her!

Bitter-Sweet, Metformin should also be helping with the fasting.
The endo will have to see readings spiking above 200 before she gets serious. OR change docs.
Does she use your tester’s readings in the office? Does she use your paper record?
It’s hard to prescribe insulin when you’re under 150 at 2 hours post eating. One unit in a sensitive person can drop glucose 90 mg/dL. That’s what she’s thinking.
Take your readings at one hour post prandially & make yourself a record that allows you to see many more times of the day, and eat normally. She needs full info, not info based on low carb. Two weeks of eating regular carb meals won’t put you in jeopardy. It may be needed to show what’s happening.
Yes, you’ll have to buy test strips without a prescription for awhile, but after you show the one hour readings - when you eat normally, not low carb - she’ll be convinced that maybe she should be saving your pancreatic cells.
Do you live in an area where there are more Endos available?
I truly feel for you. Stress is not something you want to allow to grow. It only hurts your glucose.

Your numbers are borderline according to the standards. Since the cut off for fasting is 110 a 102 would be considered normal and a 122 would not. The American College of Endocrinologists say you should strive for 140 2 hours after a meal so you are over the line there, although the ADA says 180 is fine. The best estimate now is that over 140 is damaging but that number is not set in stone and lots of people argue it needs to be higher or even lower.

Perhaps you can fine tune your diet.I am T2 so perhaps my experience can help you. I have found certain carbs spike me even when eaten in small quantities. For me the list of carbs I can’t tolerate, except in very small quantities, includes all grains, potatoes, fruit and beans. I would suggest adopting an “Eat to your Meter Approach” where you eliminate a potentially problematic food from a meal and see if it helps your 2 hr. number. This way you can come up with foods you need to avoid or limit quantities of. If you would like to try this I would recommend the BloodSugar101 website. Pay particular attention to the link in the upper right “How Lower your Blood Sugar” its a very simple system, but does require an investment in strips.

Having said this, my own A1C is 5.9 and my fasting numbers are about like yours. I generally do much better on my 2 hour numbers and hope that that will avoid further deterioration. Starting with an A1C of 13.1 I’m happy with those numbers but I can see why you would want to do much better.

In regards to regaining some weight low carbers who follow Dr. Bernstein s principals say to add protein to your diet. This may seem counter intuitive but 58% of protein eventually converts to carbs. However, they hit your bloodstream at a slower pace and thus your own insulin production is better able to handle them. There have been numerous discussions of this on the Bernstein group here on tuD, as well as lots of useful advice about low carbing and even some great low carb recipes.

Another possibility is that you are really LADA or late onset T1. Many members here eventually found out they were LADA after a T2 diagnosis. One member LiL MaMa had a epic struggle with her doctors before getting a proper diagnosis and treatment. In some ways her story reminds me of you, it might be useful to search the forum for her name and read some of the old threads.

For many people, the fasting numbers and your HbA1c go bad only after a long period of time with bad blood sugars. If you are going high after meals you may have what is called “Impaired Glucose Tolerance.” Until you have “Impaired Fasting Glucose” your fasting numbers and HbA1c may still look good. You could ask your doctor for an Oral Glucose Tolerance Test (OGTT) and if you have a blood sugar of 200 mg/dl 2 hrs after taking a 75g glucose load then you are technically diabetic no matter what you A1c says. You can also give yourself the test at home. For my description of how to do this you can read how I did it in early 2010 during what I can only term as a honeymoon.

ps. If you bring test results to your doctor showing that you are diabetic according to the published guidelines, your doctor will be hard pressed to just pass off your concern.

Bitter-Sweet, I can understand where your doctors are coming from. Clinically speaking, your HbA1C is only borderline D, not full-blown. You are handling your diabetes with diet and exercise, so why the need for a medication? I imagine that’s what your doctors are probably thinking. They probably want you to continue what you’re doing because your numbers are so outstanding.

As for the test-strip issue, I understand your desire to test, but I also understand why your doctors are reluctant to Rx test-strips if your docs are not classifying you as a person with D. Insurers raise hell when doctors Rx meds and supplies that do not seem justified by lab tests.

Anyway, congratulations on maintaining such excellent D management. If there is any consolation to all what you are going through, your improved diet and exercise routines are benefiting your health substantially.

Thanks for your reply. What I mean is that my A1c is 5.6 because I am doing diet and exercise, I have been taking care of my diabetes, and I of course I need test strips to achive tht also. I have been reading all over this website that people worry with lower readings than mine. (I’m talking mostly about Type 2). I also bought the Blood Sugar 101 book and it’s scary to find out that readings over 140 cause organ damage! My friend told me that my readings were fine because her dad’s doctor congratulated him for keeping his glucose under 180 after meals (2 hours), but her dad was 78 years old and had been diabetic only for a few years. I am taking into consideration my age (32). If I continue to have these readings for years, I can have severe complications, for what I have read all over the place! I am not worried about right now, but for the future, and my doctors don’t really worry about that for what I see, of course, is not their body, it’s mine. I will find a different doctor that can at least give an explanation to my concerns because my current doctor doesn’t even want to waste her time with me, due to my A1c being 5.6 (which I have almost killed myself for, it didn’t happen “just because”). Thanks anyway and I’m sorry for sounding too frustrated, but that’s how I feel, my health is in jeopardy,well, whatever is left.

The BGL threshold for causing organ damage differs depending on which health-care professional you consult. A common level often mentioned is anything over 200 causes organ damage. My own view is that the closer we can get to having the BGLs of a person who does not have diabetes, the better for us. However, I would like to see a series of studies that support the notion that breaching a low threshold of 140 causes organ damage. I’m not denying that having 140 as a target is not a worthwhile goal; rather, I just question the scientific basis for listing it as the red line of danger.

My own opinion is that if you can reasonably manage you diabetes without the use of oral meds, you should continue along that path. A lot of the oral meds have unpleasant side effects and cause organ damage of their own. For example, I’ve been a T2 for 11 years, and some of the oral meds I was originally rx’d now have black-box warning labels and have been linked to cancer, stroke, and heart disease. In short, the orals meds have risks of their own.

Anyway, there is no easy short cut for managing diabetes responsibly. It takes work and discipline to get good numbers no matter what the therapy. In one way or another, we all have to pay the piper.

I agree that you should find another endo/PCP if the one you currently consult is disinterested. You need to have a partner, not a condescending or unwilling authoritarian. I hope you find someone who gives you the attention and medical guidance that you desire.

" a lot of the oral meds have unpleasant side effects and cause organ damage of their own"

I took oral meds for three years and the side effects were terrible. I could barely function. Of course, not everyone has this experience. There are some discussions in the Forum under “Treatment” which I wish I had read before I embarked on my journey with oral meds. The first med usually prescribed is Metformin which is considered to be the safest. I was able to reduce the side effects of this drug after reading the tips in the forum. After three years on oral meds I am finally feeling well. Hope you find a doctor who will listen to you.

If you go to the bloodsugar101 website and click on the page “Healthy Blood Sugar Targets” you will find a whole raft of studies much too numerous to quote here supporting the 140 level.These are the same numbers Bitter-Sweet is quoting in her post. As you say others argue for a higher target. I myself have chosen it as a target because it is a conservative goal and I want to give myself the best chance of avoiding complications. It is also the goal promoted by the American College of Endocrinologists.

Let me look at this a little differently, just for the sake of thought. I had gestational diabetes and was never told that I might develop diabetes later in life…just because. Okay, so here’s my thought…I am type II, control by diet, exercise and two meds. I would do some Dr. hunting. If you are in an area where you have docs to choose from, interview them on their basic ideas about diabetes and working with diabetic patients, for now. You seem to be doing all the right things, eating, exercising, taking your sugars. Keep that up. When you have enough information of a higher reading, say over 170 or 150 for a deliberate amount of time, take it to a doc or endo that you chose to work with, and show it it them. NOT just one or two higher numbers…but a chart of your numbers and when they occurred. You are right some are idiots, and we have to teach them…but you are doing things right to take care of you…keep it up until you can find a doc who will work with you.

Just one more question…and forgive me for asking…but do you think at all there could be a possibility that because of the gestational diabetes, you have it on your mind that you are or will be a diabetic? Just a thought…not pointing fingers. More of us should be as concerned as you are.

Bitter-Sweet, bsc’s advice about the glucose tolerance test is probably the best plan. What is happening is that your doctor is not giving you credit for the hard work you are doing. If you fail the test, and I’ll bet you will, given the effort you are investing now, you will have a much better chance of them working with you.

I am surprised how many health care professionals don’t seem to understand the correlation between frequent testing and achieving a good A1C. I don’t believe it can be done on one test a day.

I also agree with you that there is no point in wasting any time with your current doc .Many docs seem to think that deterioration is inevitable, but they should help you if you want to try and beat the odds by keeping tight control. Part of the problem may be that they don’t see that many patients trying to achieve tight control. I have a great doc who supports me, so they are out there.

Given your determination, I know things will eventually work out for you.

With your history and numbers, not prescribing test strips is, in my opinion, grounds to fire a doctor and find another one.

That said, I had a terrible time with metformin: debilitating nausea and diarrhea for TWO YEARS before I threw down the box and told my doctor, “ENOUGH. I want insulin.” A tiny dose of Lantus might be all you need right now in order to get your fasting numbers consistently under 110 and allow you to relax your diet a bit.

Your weight is low enough – with a BMI at 18.6, you are at the very bottom of the normal range, which bottoms out at 18.4 – that your doctors should certainly be sitting up and taking notice of those BG readings. They’re a red flag, along with your gestational diabetes, that you are well on your way to developing full-blown diabetes earlier rather than later.

What you are currently doing is what diabetics did before insulin was available: starve yourself to keep your numbers down. That is obviously only going to work for a relatively short while, and your BMI alone tells me that sooner rather than later you’re going to be on insulin, so why put it off? Why not get a Jr. pen (which has half-unit increments) and get a little more nutritious food into your system?

Your previous BMI of 20.4 was perfectly normal (middle of the normal range) so you are one of the “lucky” ones who has the diabetes genes such that you’ll no doubt need insulin sooner rather than later no matter what you do. This whole allowing you to starve yourself to maintain control makes me angry on your behalf. Find a doctor who actually cares about the whole person. You’re obviously not happy with what’s going on with your body – who would be? – and you need to find a doctor who understands the BIG big picture and who will help you.

If you don’t want to or if she is unwilling to give you a glucose tolerance test…

I would ask for a c peptide test. The level of C-peptide in the blood can show how much insulin is being made by the pancreas.

C-peptide on WebMD.

Have you had an antibody test? GAD? Insulin levels? C-peptide? Get those!

Just what I was thinking wrt to recommending the other screenings!

If it’s any help amazon has strips for cheap…from medical supply companies. You can get a box of 50 for about $25. Don’t obsess tho…a little knowledge is dangerous–a lot can be overwhelming.

Hi Bitter Sweet: I am so sorry for what you are going through! Your story sounds like so many young women who “arrive” here at TuD after having gestational diabetes. I think there is a possibility that you had autoimmune gestational diabetes (see my blog Autoimmune Gestational Diabetes) and now you need exogenous insulin. The way to determine if you have autoimmune diabetes is via antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies). Exogenous insulin would allow you to lead a more normal life. Just my two cents.

Your story sounds a lot like mine. I had gestational diabetes with my son in 2006 and took Metformin the day he was born I was told I no longer have diabetes and I do not need to take the Metformin or check my bg any longer so that’s what I did. I never felt quite right after having my son and always felt sick. Just before his 4th birthday January 2010 I was diagnosed with “type 2” diabetes at 23 years old 105 lbs and very active. I was diagnosed with a fasting bg of 126 and an A1C of 6.0. With each passing month I had to lower my carb intake more and increase my exercise more to acheive the same numbers. I started out eating 100 carbs a day with good numbers and by the next December 2010 I was exercising 2 hours a day and eating only 20-30 carbs per day and still having sky high post prandials. My fasting bg was the last to go. Finally January 2011 I was rediagnosed with type 1.5 LADA and placed on mealtime insulin humalog, two weeks later I was also started on a small dose of 2 units a day or Levemir basal insulin. I had to fight to get my rediagnosis and suffered for a long time. Have you had a c-peptide test done? I’m guessing you have early stages of LADA and it will just continue to worsen as in my situation.

Thanks, BMT2. When I get a large block of time, I plan to read through the articles. I often wonder where the professionals get these target points and why the opinions among the medical professionals differ so greatly. I want to find empirical evidence that supports a published target BGL. I don’t like the idea that patients such as Bitter-Sweet may be needlessly frightened by something they read or are told by their doctors. If Bitter-Sweet is being misinformed, she deserves to know about it. By the same token, if a 140 BGL is truly the threshold of danger, the medical community needs to get on the stick and quit reporting such higher BGL levels. There needs to be a consensus among the medical community. There are too many of us with diabetes for this to be taken lightly.