Unclear diagnosis

Hello,

I’m new to this forum. To give some background information, I had a baby in August of this year. At the time, I was diagnosed with gestational diabetes. I also have a diagnosis of PCOS and took clomid to get pregnant. I was 94 lbs pre pregnancy (only 5 ft) and generally kept my blood sugars low with diet alone (my ha1c was 4.8). 12 weeks post pregnancy, I repeated the glucose tolerance test and my fasting was 59, my 1 hour was 150ish, and my 2 hour was 170ish. My post pregnancy weight is 88 lbs and my bmi is 17.4 and I’m eating a lot, but low carb and nursing.

I was referred to an endo who tested me for lada autoantibodies and my thyroid. Thyroid was normal, autoantibodies were all negative. My ha1c is still low (about 5.0). The endo basically said to monitor with diet and take blood sugar a few times a week, but not to worry at this time because there isn’t a major problem. However, I’m concerned because I still spike after eating carbs (about 165 after two pieces of pizza and even 200 once after Chinese food). My fasting has never been abnormal and is occasionally even low. The doctor is concerned about how low my weight is and even says it’s okay to let the blood sugar spike sometimes. He also says I have no symptoms of MODY so it’s not worth testing for. I have no family history of diabetes, but do have a couple family members with thyroid issues. I’m also concerned about weight because I want to get a regular period and get pregnant again eventually, but I’m truly eating a lot!! Does anyone have a similar experience? Or some insight into what this could be. Is it worthwhile to get a second opinion?

Also, my insulin levels and c-peptide were very low, but my blood sugar was also low at the time of testing (72). The Dr says this levels don’t really indicate anything either way.

Hi Holly: I have heard stories similar to yours so many times! Your A1c is good, but the spikes after high carb meals are worrisome. I would really suggest following a low carb diet, and avoiding things like pizza and Chinese food. Dr. Anne Peters, who is the editor of “The Type 1 Diabetes Sourcebook,” has an interesting video/article on new-onset diabetes in lean adults that I hope you will watch and read: http://www.medscape.com/viewarticle/769988

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Thank you for your response, I will watch the video and read the book.

Hi @HollyOrr15,

I’m a type 1 now, I was gestational diabetic with my first 2 pregnancies, then developed T1 and Hashimoto’s hypothyroidism after my 2nd baby was born (4-5 months after delivery). I’m on my 4th and final pregnancy now. I have type 2 and thyroid problems in my family both sides.

From my experiences with hypothyroidism and hyperthyroidism, there is a common condition after pregnancy that can occur whether temporary or permanent its called postpartum thyrioditis. I had it, i had a hyperthyroid bout then a hypothyroid bout. With a hyper stint, you lose a lot of weight but also have lots of other symptoms like high resting heart rate, dizzy spells, exhaustion, etc. Have you had any of these symptoms?
I breastfed with all my babies too. I’m a little stumped if everything is normal though.
You could be defining a new category. :slightly_smiling:
Busybee

I thought about your comments a little more. One thing I think could be potentially helpful is that after my daughter was born (2nd child), all my numbers were normal until they weren’t. Seriously, one morning I remember eating a waffle after breastfeeding my daughter, I tested myself an hour after and I was 90. A month later, my BGs were around 500! During or after you breastfeed, are you having hypoglycemic episodes? I did a lot.

You may not have type 1 but with gestational diabetes in pregnancy comes an increased risk for type 2, with or without family history. It sounds like you have type 2, your BGs seem high for someone not having diabetes at all for your after meal readings. Even with your low weight, its possible that something else is at play. I think the key for you might be to follow up with your endo in 2-3 months or if you have symptoms that start to show otherwise go see your endo. Even if you feel good, go in a 2-3 months just to check everything.
If i were you, I would get a second opinion. I’m not saying your endo is incompetent but something seems off with this doc. My endo is pretty awesome and I can see her saying to me that even though blood tests don’t reveal anything, she would want BG testing more often a day, not just a week to check for patterns at the very least.

If you do choose to get a second opinion, let us know how it all goes. I hope for your sake, its nothing, its just that it sounds more like something than nothing.

Busybee

For a few days before an OGTT, you need to have a min 150g carb a day. This is to get a true reading. On LC your response to carb is off and messes the test. If you are too slim, up your protein and especially fats to replace the lost carb energy.

It’s something I would keep an eye on and as said by others, make sure they did thyroid tests

Ask for a 5 hour not a 2 hr OGTT next time to see the full response curve and when your BG returns to normal

Thanks for all of the insight. I did get my thyroid checked and It was normal. However, would there be any test I could be potentially missing with the post thyroiditis? While nursing, I’ve also heard blood sugar can be lower than average. I do seem to have some lows (not drastic though 69
Or 70 at the lowest), but still mostly high after eating carbs. I’m pretty low after fasting, or if I haven’t eaten for awhile. My blood sugar was just 181 an hour and half after eating two sushi rolls, which I guess I could have expected, but I was testing the waters to see what I could actually eat.

Since I have PCOS, I was hoping that maybe my hormones were causing fluctuations in my blood sugar and that after I’m on birth control again (which regulates the PCOS), they would return to normal. However, from everything that I’ve researched, this is not typically the case. Usually after nursing and going back on birth control, they tend to rise a bit:

It’s possible that no one will ever know whether I have type 1 or 2, and maybe it doesn’t matter, but it’s just hard to believe I have type 2 diabetes at age 31 when I’m less than 90 lbs with barely any family history of diabetes.

Hi Jack,

Thanks for the insights. I will try eating more carbs the next time a take an OGTT. Admittedly, I ate barely any carbs the night before but that still doesn’t explain the highs after eating normal meals. Thanks!

If you start seeing 200+ then I would get concerned. Until then it’s just a bit high and could well settle down. I’d give it another month or 2… get another OGTT and eat carbs 150+ for a week beforehand. If I saw a 200 I’d ring the Dr straight away.

This week, I would eat some carbs for a couple of days and check my 1,2,3 and 4 hr BG, to see where the curve is and how long it takes to get back to premeal

The only test I know of to determine the postpartum thyroiditis is a thyroid panel blood test- TSH, FreeT4, FreeT3, and TT3. If you have postpartum thyroiditis it will show in your thyroid panel. You and your doctor would know. You would feel it and your doctor would see your thyroid numbers as abnormal.
My BGs are the best when i’m nursing just to give you a good idea of how nursing can mask diabetes. 69/70 isn’t really low for a nondiabetic but if you are feeling shaky, hungry, sweaty, etc with that low of a number than you are feeling it and it doesn’t matter, its low enough for you. 181 an hour and half after a meal is too high for a nondiabetic.
Again, I’m not a doctor but this just isn’t right. It doesn’t add up and I could guess that after you stop nursing you might find out your true condition. I recommend nursing for as long as you can for your baby, but keep an eye on your blood sugar and other symptoms as they arise if they do at all.

I have heard a lot of information on birth control and other fertility drugs elevating blood sugar, but this is usually for diabetics.

I hate to tell you this but I did everything right too. I was shocked as heck when I found out. I was 27 and the picture of health, why should I get it? Before and after pregnancy, I ate right, I maintained a healthy weight (BMI) for my height, I exercised a lot, and i saw my doctor every 6 months. I still got gestational diabetes and then type 1, which is rare but happens. It isn’t fair and sadly diabetes, whether type 1 or 2 doesn’t discriminate. There are many type 2’s on the forum here who don’t fit the family history mold and who are very healthy. They asked themselves why too. They shouldn’t have it either.
Its incredibly jarring to come to this reality. Unfortunately, you don’t really have all the answers quite yet.
At this point, just keep tabs on yourself and check your BGs. Follow up with your endo and I would get a second opinion. I have learned that not all endo’s are created equal and there are some real dopey ones out there. I feel very fortunate to have a fantastic one. Mind you, we don’t always agree on courses of treatment for certain things, but 90% of the time we agree and when we don’t agree she really listens to me and hears me out.

I’m really sorry that you are going through this right now. All I can say is be patient, its possible that this will go away but my gut says something is not right.

You are in my thoughts and prayers,
Busybee

Thank you for all the kind words and encouragement. I’m going to get a second opinion and will keep you posted.

I do have a question for you. Did you initially test positive for autoantibodies?

I did test positive for autoanitbodies but at the time I was in the early stages of DKA. I was really very sick. My blood sugar was around 500.
I could be wrong here, but you could still have type2 and test negative for autoantibodies. I’m not really the one you should talk to about that whole debate. There are some that have a cross between type 1 & 2. Even if you have type 2, you are most likely still producing beta cells that produce insulin. So you would show up as negative but some show as positive or are improperly diagnosed. Its that your body doesn’t know how to use the insulin efficiently. Type 1’s have the autoimmune component where the body attacks the beta cells that produce insulin. A little different.
Keep us posted. :slightly_smiling:
Busybee

Gestational diabetes can be a precursor to Type 1 diabetes or Type 2 diabetes, and it is not rare. About 10% of women with gestational diabetes mellitus (GDM) will have the autoantibody markers for Type 1 autoimmune diabetes. From Nillson et al (2007): “The autoimmune process that leads to the development of Type 1 diabetes probably begins several years before the disease. The increased insulin resistance during pregnancy leads to an increased demand on the remaining and affected beta cells. A pregnancy could therefore uncover an early stage of Type 1 diabetes and be interpreted as just GDM.” Women may develop classical type 1 diabetes during and/or after their pregnancy or may develop latent autoimmune diabetes of adulthood (LADA) some years post-pregnancy. Here is a blog that I wrote on autoimmune gestational diabetes

This is a very interesting blog. I did not test positive for the autoantibodies, from what I understand I could someday, or may never even if I have type 1 (vs. 2). Interestingly enough though, I did have maternal complications and never knew why. Despite maintaining good blood sugar with a strict diet, I began having contractions that I did not feel and delivered at 33 1/2 weeks. I did not have preeclampsia or any complications other than GD, so it is unclear why this happened, but I do wonder if this has to do with type 1.

Hi Holly,

Your post sounds identical to what I’m going through. My doctors seem confused and I want some clarity. I know it’s been awhile since you’ve posted this and I’m wondering if you ended up with a more clear diagnosis?

Hello Laine,

I’m sorry to hear you are going through something similar. After giving birth to my first daughter in 2015, I nursed for a year. During this time, my post meal blood sugars remained borderline high. After I stopped nursing, my blood sugars returned to normal.

I got pregnant with my second last summer in 2017. About 8 weeks into the pregnancy, I already had elevated blood sugars again… so gestational diabetes again. I’m nursing right now and continue to have borderline high sugars. Down to about 88 lbs again, despite eating a lot! I’m hoping that my sugars will again return to normal once I stop nursing.

So to answer your question, I have no answers sadly. Doctors are also kinda stumped by me. I plan to return to the doctor if my sugars do not return to normal once nursing is done. From my experience, endos affiliated with academic hospitals take far more time and are better listeners then some in private practice. Good luck!!

Thanks for your reply! Please keep me posted as to how you make out :slight_smile: the doctors are very stumped by me as well. They said they don’t think I have diabetes, despite my post meal levels being well over the cut off for a diabetes diagnosis. I was negative for the antibodies and am also underweight so I think this confuses them and they don’t know what to do with me. I just stopped breastfeeding about 6 weeks ago and my numbers haven’t improved and I still can’t gain weight

If your Dr.s think that just because you do not test positive for antibodies that you do not have LADA then they are unrealistic since we cannot test for all of the possible antibodies. Ask to be put on insulin to see if you gain weight and you will have your answer. If you don’t gain weight on insulin then you probably have some other type of metabolic disorder.

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It’s again been awhile on this post, but HollyOrr15 or LaineLo, did either of you end up with a diagnosis?

I’m working through the same issue current, Gestational Diabetes and high blood sugar postpartum. Negative for Type 1 antibodies and currently being evaluated for Mody.