First appointment

Diabetes Advocacy Self Advocacy
#1

Hi everyone,

this is my first post on this forum. I stumbled on this website looking for information on diabetes. I have my first appointment with an endocrinology group on Tuesday and I’m seeing John Walsh, PA. As I’m researching, I found out he wrote many articles and some books on diabetes. I am glad of this.

The reason why I’m posting is I want to know what questions to ask him or things I need to advocate for. Background on myself is I had gestational diabetes last year while pregnant with my second baby. It was somewhat controlled by diet but I ended up on glyburide. I gave birth to a 8 lb 13 oz girl. Right after delivery, my A1c was 5.7 but it went down to 5.3 6 weeks after delivery so I was deemed diabetes free. I still had strips and a meter so I occasionally tested my bs after meals.

In October, I took my blood sugar after eating a bowl of flax flakes and some almond milk. It was 245. Of course I freaked and started doing post prandial blood sugars and fasting. My fasting bs have been running anywhere between 95 and 110. My pp bs have been between 105 and 268 depending on what I eat. So far on my own, I’ve been keeping it below 140 postprandial by eating a SPARTAN diet. In fact I have lost 8 lbs in 1 month. I am naturally a small person and now I weight 108. Almost what I weighed on my wedding day. I normally keep about 5-10 lbs on while I’m nursing.

My family doc wasn’t so concerned when I brought in my glucose log and meter. To her credit, she did order a lipid panel, chemistries, and at my insistance a glucose tolerance test. My A1c was 5.9 but my glucose tolerance test was completely normal. 83 fasting, 143 at the 1 hr mark, and 83 at the 2 hr mark. How does this correlate with the high A1c? She wasn’t overly concerned and said we can retest in 1 year. I insisted on an endocrinology consult and asked her if she thinks I have LADA? She had no idea and just wrote me a consult note to get me out her hair I think.

My cholesterol is fantastic. 125 total, Hdl of 59. Triglycerides were low too. I am a vegan so I expected this. I am going to ask John Walsh to test me for the antibodies but is there anything else I need to discus with him. While I was pregnant, I got the shingles and right after that I was diagnosed with gestational diabetes. My doctor said I don’t even qualify as a prediabetic yet so everything I’m asking for is basically a waste of time. Has anyone caught early stages of LADA? It sounds like some people have a long period of time before they are diagnosed.

Sorry for the long post. I hope someone is able to reassure me and give me some pointers for my appointment.

Thanks,
Gail

#2

you seem to know just what to ask for-antibody tests to see if youre lada. i would be concerned if i were undiagnosed and having numbers in the 260s. good luck at your appointment and good on you for bugging your gp enough to get you a referral for an endo.
and wow, youre going to John walsh, hes like dia-lebrity.

#3

You seem to be doing all the right things - testing, logging, speaking up for yourself, etc. Diabetes manifests itself differently in each of us, so it's hard to guess what your exact diagnosis would end up being. But you certainly don't seem to be a typical (if there is such a thing) type 2, so it's definitely worth asking for the full antibody panel regarding LADA. The knowledge helps with a treatment plan.

As far as early stages of LADA - yes, it can come on slowly with some normal bloodwork during that time. I had symptoms for a couple of years prior to diagnosis but normal fasting labs. And even at diagnosis, my c-peptide showed an ability to still make insulin. But because my antibody test was "off-the charts high" as the doc put it, there was a diagnosis of LADA. Insulin wasn't needed for a couple of years after that.

Whatever the tests show, your focus should be keeping yourself healthy - whether it's diet and exercise, or pills, or insulin. So keep up the good work!

BTW - I was (almost) vegan right before I was diagnosed. Before starting insulin, I had trouble keeping my numbers in check. With the insulin, a vegan/strict vegetarian diet seems to be much more manageable for me. Don't be scared of insulin when/if the time comes; it's just a needed medication.

#4

I agree w/ pancreaswanted and roodgirl that you are on top of your game and seem to be way ahead of the docs! That's neat you are seeing John Walsh! I liked his book a lot when I read it, although I could perhaps stand to read it again?

#5

Ohhh ahhh, you are seeing John Walsh. I think a 5.9 is definitely 'prediabetic' and IMHO should be seen as diabetic. My guess that with the glucose tolerance test, you've been resting your beta cells by changing your diet, and so they were able to produce enough insulin to get you down on that day. You're still in the honeymoon period (if diabetic), so I wouldn't call it conclusive.

#6

Thanks for the support. I got a lot of information right here on tu diabetes! If I hadn’t googled diabetes, I would never have found out about LADA and the antibodies that are associated with it. I really don’t fit the profile of a type 2. No cholesterol problems, no excess weight, and I exercise so the hyperglycemia was a total shock. I was never heavy but after giving birth, I really started taking care of myself.

I am thankful this community exists. If not, I’d probably just listen to my doc and wait until I had numbers that out me firmly in the diabetic range to do something.

#7

Hi Gail,

Sounds like you have done a great job of educating yourself about diabetes and you're doing the right things!

Any doc should be asking you if there is any history of autoimmune diseases in your family. Sometimes we don't know this about family members beyond our most immediate ones. It might be something to investigate prior to your appointment with John Walsh. But it's just additional info to push for the antibody tests, so I don't think that you'll need it with John Walsh!

Good luck and best wishes!

marty1492

#8

Hey there. I can relate a little , though I've never been pregnant and my diabetes was a pure out of the blue/left field diagnosis. I was mistakenly typed as 2 despite not fitting the 2 profile really at all, I mean I could exercise more, but I'm not completely sedentary or something. Like you though I'm a vegetarian, slim (133 lbs and 5'5" at time of diagnosis, lost a bit of weight due to metformin and eating problems so I'm down to 126-128 still and can't gain weight back...?) , and I was 22 when I was diagnosed so pretty young. I was diagnosed with a 249 mg/dL reading 6 hours after eating in the ER at like 3 or 4am when I went in with really bad acid reflux. I saw a bad internal medicine doctor that made it worse for me , and didn't check out what type I had even though the ER doctor sent me to her to get checked out further than they could test me (like an a1c or something) because the ER doctor suspected I was a LADA or type 1. She just smiled and gave me a metformin refill and told me to suck it up (basically) and to only test twice a day (that would of been bad, I knew to test 4 or more it was the best idea) so I kinda don't trust any random internal medicine doctor on this kinda thing lol. My endo is also an internal medicine doctor so I can go to him for everything, yay!

So going to the endo is the best thing to do if you suspect you're a diabetic, endos are amazing at helping you find out that info as it's their specialty . Don't be scared to ask a thousand really dumb sounding questions as I do that every appointment lol. Just ask anything you can think of, and don't feel weird for not agreeing with your main doctor, because if I trusted that internal medicine doctor I had before my endo I'd probably be dead. My endo is awesome (and a type 1 diabetic as well and diagnosed as the same age as me) and I hope yours is as well!

#9

Hi Gail: Your story sounds like quite a few we have heard on TuDiabetes, with the gestational diabetes but looking like LADA not Type 2. I wrote a blog about autoimmune gestational diabetes that you may relate to. Regarding the autoantibody tests, be sure to get the full suite of tests (GAD, ICA, IAA, IA-2, and ZnT8) and not just GAD. I write about the autoantibody testing in this blog. I am glad you found TuDiabetes, and I am glad you are facing things head on and being your own best advocate!

#10

Your story reminds me a little bit of Franziska Spritzler. She didn't have gestational diabetes but she was suspicious about her blood glucose metabolism and being a registered dietitian, she had a scientific bias. She bought a blood glucose meter and found that her post meal blood sugar levels were sometimes high.

Long story, short, she decided to limit her carbohydrate consumption and made some interesting discoveries. It also altered the trajectory of her career.

I admire your sensitivity to your health as well as your aggressive action. I wish you the best of luck!

By the way, I was diagnosed with T1D at the age of 30, now 30 years ago. Looking back, I know that I had incidents of reactive hypoglycemia and slow healing wounds up to two years before my diagnosis. I was never tested for antibodies but I'm certain that I am LADA. I never came down with DKA.

#11

Nearly everything I was going to cover has been said already, but I have one more thing to add.

I've found that if I eat, sat, 60g of carbs (it's an exaggeration, people) in one sitting, I'll hardly spike at all, but if I eat, say, 40 (again, an exaggeration) I'll be high for hours.

It doesn't happen all the time, but I think that when it does, it's because my body knows there's TONS of sugar hitting my bloodstream and it kicks my pancreas into high gear, whereas when I eat less carbs, my pancreas stays lazy.

It's similar to the way I'll stay at or around 160 if I spike there, but I'll drop really fast if I'm 200 (assuming I've been easy on the carbs for a while).

Go figure.

#12

Hmmm… I think I average around 40-50 gr of carbs per meal but found its the type of carbs that spike me. Example, white rice or potatos send me sky high but quinoa doesn’t. While I had a cold, my normal bowl of oatmeal spike me to the 160s. But not sick and its 130. Does anyone know if nondiabetics get these high spikes in blood sugars if they are sick or does this only happen to diabetics?

#13

Update: just saw John Walsh who answered all my questions. I’m going to get my blood work done tomorrow and will follow up with him in 2 weeks. I couldn’t get an appointment with him next week because of work. He sounded like he would be shocked if I wasn’t type 1.

#14

good luck and hope by some miracle you escape D!

#15

Thanks! I hope so too.

#16

I think I'm a type 2. i got my test results back from my MDs office. neg for antibodies.

#17

Gail, without reading any other responses, my first impressions are that you don't seem to have much of a problem to be overly concerned about. Maybe watch out during any other pregnancies. You see, unless I missed something, I didn't see a high A1c. They may have lowered the "high" end number since my last one but I only know that anything below a 7 and many endos are really happy for their patients who have a real challenge. Your pre and post numbers seem to be fairly withing acceptable ranges except for an occasional "piggie" meal. I wish I had your numbers most of the time.

Although I would say that you seem to be pretty healthy, I don't fault you for advocating for tests to tell the story. They not only tell you what's wrong, but what isn't wrong. And that's just as important.

Finally, I would suggest that, while you have a history during pregnancies, you don't need to fret too much. Go to your specialist. But listen to his advice and any reassurances he may have. Be blessed by good news too.

Lois

P.S. Did you know that your picture is laying down on the job? haha ha

#18

You think I could still have LADA? Even after testing neg for GAD, IA2 and Insulin antibodies? My blood sugars are in the 140s to 200s depending on what I eat. 140s if I eat pretty low carb. 200s if I eat white rice. From my understanding most nondiabetics will not have a post meal greater than 120 ever...

Thanks for your response. I'm learing a lot.

#19

GailD, What an interesting discussion you started. I learned a lot too, Thank you.

#20

Hi Gail: Take a look at this article/video from Anne Peters MD. Yes, you can have LADA but be autoantibody negative. In Type 1 Diabetes Sourcebook (Anne Peters MD is co-editor) they state: "being autoantibody negative does not necessarily mean that individuals do not have immune-mediated beta cell destruction. Their immune systems may not have formed antibodies to an islet protein that we currently measure."