Cut carbs, losing weight, but BGs rising? What's wrong with this picture?

Type 1 and LADA New to Type 1 Diabetes
#1

All -

I've got questions, and I know you've got the answers, or at least can point me in the right direction. I'm still on my low-carb diet, still losing weight (48 lbs total), lost my appetite, still drinking water/traveling to the bathroom at night, and BGs are on the rise (was averaging in the high 80s now in the 140s).

I mostly rise after my meals--pre-meal 110, after meals 145 to 150, sometimes I spike to 250, without starch. Sleepy after every meal. Then before bed I'm dropping between 69 - 79. I'm human Slinky.

When I saw my endo May 1st he said we would discuss the above issues (I had lost 36 lbs) and my A1C was 6.4 at my next visit Aug. 1st--possibility of shots. He has a very grumpy disposition, but do you think I should call him to give him a heads up?

Friday I go for my next round of Remicade infusions (7 vials) {BTW, that's a lot} for my RA (my main beast, Uncle Arthur) and it will definitely spike my BGs--by how much, I don't know.

What's wrong with this picture? I should be doing better as a diagnosed Type 2 PWD--diet and exercise to keep "the beast" under control.

#2

Have you been tested to see if you are, in fact Type 1? The weight loss and the presence of other autoimmune conditions would make that a strong possibility.

#3

Zoe, when I was originally diagnosed my PCP was out of the office and another doctor made the diagnosis. The fill-in doctor was adament that I was Type 2 and his nurse called and told me they ran the tests ruling out Type 1. When I asked for a second opinion to my endo (my mom's doctor) they forward him my test results.

I'm not sure if he ran another test or if he just went with "family history", but I give the endo my medical history. He said it could be a combo of genes, auto-immune, and medications. He still adamently classified me as Type 2 and prescribed the metformin twice, then it made me sick. Then he backtracked alittle with diet/exercise, and lose a little weight (wait and see mode).

Now he's perplexed with the amount of weight loss and the A1C1 is still rising. I thought since I was shedding pounds I would feel better, but I feel so tired and I can barely stay awake, especially after eating--any little meal--protein, salad, veggie, doesn't matter.

I am wondering if 1.5 or 1 may show up gradually later? Do doctors occassionally re-run the tests?

With the rheumatoid factor, the rheumy checks it periodically because he says he can change over time. He had a patient that was negative and after many years, she became positive -- meaning her rheumatoid arthritis was getting more aggressive.

#4

A low-carb diet does not, necessarily, eliminate BG spikes entirely. If you are eating high amounts of protein, a portion of that protein can be converted to glucose and lead to a rise in BG levels. This usually takes longer after a meal to manifest, but with the possibility of converting 30% to 40% of the protein you eat to glucose, that could lead to a pretty big BG rise.

#5

In my opinion, you should find out what tests were done and not just take their word for it. There are 4 antibody tests that should be done, which will show LADA/Type 1 (slow onset in adults) as well. Check Melitta's blogs for the names; GAD is the LADA one, but you should have all 4. You also should have your c-peptide checked. That shows the amount of insulin you are making on your own. Type 2's are normal or high, Type 1's are low. If you are Type 1 your numbers will continue to climb until you get on insulin.

#6

FHS, yeah, you are so right. That's the sermon my mom gave me and I backed off some of the protein, but I'm still creeping; and, with a loss of appetite it's hard to finish a meal. I think my stomach's shrank so I'm eating about 1/2 of what I used to consume.

I bought a 6 oz grilled steak Monday, I ate about 1/4 of it. I was able to get a few of the grilled mushrooms down and about 3/4 of the tossed salad (sparse dressing and a 2 croutons), water and my BGs jumped from 111 to 159.

The only reason I know I'm hungry is because of the time on the clock and I start having "the sweats".

#7

O.k. thanks Zoe. I'll ask the endo. He's like a drill instructor so I have to have all my paperwork in hand and questions on my tongue when he walks in. :-)

At 77, my mom has the "drill" down, me, not so much.

#8

"Now he's perplexed with the amount of weight loss and the A1C1 is still rising"

Personally, I wouldn't have much faith in this endo. I would write all the antibody tests down as well as c-peptide and present it to him. It's amazing how much more authoritative things seem when they're written down! If he brushes you off with a "doctor knows best" I would head elsewhere. I see you live in a large city which must have choices of endos. Find one who will be willing to question and clarify your Type and treat you accordingly. Even if you end up being Type 2 (which would surprise me) insulin is still an option. Diet and exercise are great if your body cooperates but if not it's time to look at other options.

#9

Considering that you ate, ballpark, 50 to 60ish grams of protein, plus a few miscellaneous carbs, let's estimate 20ish grams of total available glucose, give or take. A 49 point jump post-meal really isn't that much of a spike. It's more of an issue with where you started pre-meal. It your pre-meal was a conservative 90, you would have spiked to 139, which is still in the ballpark or the rule of thumb 140 that a lot of uses as a 2 hour post-meal max.

So, yeah, you have some tweaking to do and hopefully you can work with your current endo, or someone else, to smooth things out. It could be a lot worse though. Probably not much consolation, but you have time.

Best!

#10

Thanks Zoe. That makes me feel better. I think he's comfortable working with my thyroid (which is stable) but not my diabetes, especially since now he may think it's more complicated (linked to my RA) thank just my genes.

#11

It's actually very common that people with autoimmune conditions have more than one; that's why I was thinking Type 1 in your case. As for weight loss, I lost 40 pounds at diagnosis. I was 58 and knew I didn't lose weight without even trying! Another clue to my Type that the doctors missed just due to my age.

#12

Hi Kate: With your family history and other autoimmune diseases, I would definitely second what Zoe says and make sure you get a correct diagnosis. IMO it is weird when a doctor is adament that a person must be Type 2. Why not do the appropriate testing, look at family history, and make a correct diagnosis? I have written a number of blogs on the problem of misdiagnosis (adult-onset Type 1s misdiagnosed as Type 2 strictly due to age, not etiology), including this blog on autoantibody testing that you may find useful. Best of luck to you!

#13

FHS, that's something he never went over with me, rather he just gave me a diet plan and told me to look it over. But as far as eyeing a meal for lunch, it is getting harder to control the spikes compared to two-weeks or a month ago (when I was chunkier) my BGs were better.

Today I did a chicken sandwich and only ate one slice of bread and water, pre-meal 122, post-meal 137. A couple of weeks ago, that would have been 87/125. I was already coming down from breakfast (114/145) this morning, which in the past would have been 88/110, same old breakfast.

You are so true, it could definitely be alot worse. Thanks!

#14

I’m antibody negative so far (for all of them) but my endo still thinks it’s slow onset of autoimmune diabetes. My c-peptide is low and he tested my insulin during an OGTT (per my husbands request) and it was low throughout the test. I do have one of the major genes for celiac and diabetes and a family history of adult onset T1 also. Diabetes symptoms and diagnosis is not one size fits all (or 2 sizes I should say!). Educate, educate, educate yourself and get copies of all the tests they do and have done in the past so you know where you stand. Try working with your doctor and if you’re not comfortable with how things go consider finding someone else at some point, easier said than done I know from experience however.

#15

There she is!

#16

Thanks Melitta, Zoe, Lilli, and Eucritta. I got my Remicade w/prednisone today. I asked the infusion nurse if she would ask the doctor (since it wasn't a doctor visit today) to order a lab request for the 4 autoantibody tests. She said she would rather I speak with him at next month's infusion.

Unfortunately, the receptionists (who are guard dogs), wouldn't schedule me for a doctor visit for July with my infusion. Instead, I have a PA (physician assistant's appointment--a new one to boot) appt. with my infusion. So I'll have to go through my entire RA history, my Graves disease history, Allergy diagnosis before I can even ask for the auto-antibody request. And I know he did some bloodwork and 24 urine analysis in Sept 2013 and he will not agree to anything again. In fact when I see him in August he didn't ask for labs prior, but he did for my mom. The last labs I've done or him were in Jan/Feb.

The reason I'm asking my rheumy first is because 1) he's open to running any tests related to autoimmunity and 2) I'll see his office before I see my endo who is very similar to Eucritta's endo--automatic label of T2.

My infusion nurse even commented that I've lost a lot of weight and asked if my RA has improved, unfortunately it hasn't or something is the culprit--still exhausted/fatigued, feverish, thirsty, joints/muscles achy, traveling to the bathroom in the middle of the night (2x or 3x), and not sleeping through the night.

#17

I believe prednisone itself can not only raise blood glucose levels, but can induce or hasten diabetes and your rheumy should be aware of this and be able to help you sort this out to some degree if that is what’s happening.

#18

Yes, Lilli definitely my endo confirmed that my diabetes was probably a combination of the prednisone and genes. He said I would be a tough case with the prednisone but its a necessary evil. You are so right, I think rheumy is my best bet to help me sort it out.

BTW, my RA was diagnosed randomly, even though I was popping Tylenol for pain like crazy. In '96, my PCP sent me to the allergist to do a full work up during a bad allergy attack, and I didn't I know was allergic to so much (food, grass, cats/dogs, trees, flowers, cleaning supplies, mold/mildew). Then then allergist took the initiative and figured out I had RA through blood work. The allergist referred me the rheumy...the rest is history.

All due to an overactive, autoimmune system. My body thinks it's fighting an enemy when it's really fighting itself.

#19

I'm going to send her an e-mail request through their portal and see what her response will be to the request. I've never asked for any lab work from them before. A lot of the doctors here are quite funny about your labs and records and you may have to pay $1/page.

I hope I can get them via e-mail or if they can upload them to my portal page.

#20

I would see if I could get a third opinion.

And I don't see a prejudice against T2s, it's a question of getting the right treatment for the right diagnosis. I was originally diagnosed as T2, because I was 27. The misdiagnosis nearly killed me, because it was 2 years before my GP put me on insulin and declared I was T1D. Made all the difference in the world. In those 2 years I lost 70 pounds and was wearing three layers of clothes in the South in July.

Hope you get this straightened out and get to feeling better.