My wife’s sugar is uncontrollable

[Hamzach20k]

Hello All,

I am writing this regarding my wife. So my wife during the time she was pregnant with our son (second baby) developed gestational diabetes. After the baby was delivered her sugar went normal but after 3 months her sugar started going really high and she was diagnosed with diabetes (Her dad is a type II diabetic). I took her to an endocrinologist who tested her for type 1 and Lada but all the antibodies were negative. He prescribed Xigduo XR (sglt2) because metformin did not work and xigduo eventually after a month caused her dka. After she was discharged from the hospital I took her to see a different endo (in total I took her to about 3 endocrinologist) and they all couldn’t figure out what exactly she had because her type 1 and 1.5 antibodied would all come negative but her sugar used to be super high like 300+ sometimes 400+. The doctor put her on insulin basalglar and novolog. The doctor also prescribed ozempic which did not work then he put her back on xigduo xr 5-1000mg which helped her a little bit. But if she ate a little her sugar would sky rocket. The doctor tested her again for antibodies they still came out negative but c peptide levels dropped from .9 to .84 to .32. All these has been going on for 3 years. Finally the doctor put my wife in mounjaro she took 2.5 for a month then 5mg for a month but she would feel miserable so she stopped it (even though she did lose weight but her sugars used to be still sky high 300-400). She stopped mounjaro for 3 months and now her doctor insisted she go back on it all this time she also was on insulin, xigduo xr and now last week she started mounjaro which gave her the worst dka she was in icu for 3 days. Now she is only on Insulin basalglar and novolog but her sugar level be all over the place. Sometimes even the insulin does not work. We are so lost because no doctor can figure out whats going on. I am writing here to see if anyone had a similar case with uncontrollable sugar and was able to figure our a plan or something? Btw she is 185 pounds and 28 years old. Sometimes if she only eat salad her sugar be in 130-160 but as soon as she eats even half a toast her sugar would sky rocket about 250. Tia

 

[EllieM]

Hi @Hamzach20k and welcome to the forums.

We aren't doctors here and forum rules mean I can't diagnose, but I may be able to make some comments.

My understanding is that there are a number of different antibodies for LADA testing, so being negative for some doesn't necessarily mean you haven't got it.

Also there are other types of diabetes out there than T1/T2/LADA.

eg there is T3c (lack of insulin caused by damage to the pancreas) and MODY. (MODY is a genetic type and there are a lot of subvariants, which require different treatments).

I feel your frustration as to not having a definite diabetic type but it seems to me that a few people don't fit into neat diabetic boxes, and you have to persevere to find a treatment that works.. The good news is that knowledge about and treatments for diabetes .are improving all the time.

Hopefully some of our other members will be able to make usuful suggestions.

Good luck.

 

[JoKalsbeek]

Hello All,

I am writing this regarding my wife. So my wife during the time she was pregnant with our son (second baby) developed gestational diabetes. After the baby was delivered her sugar went normal but after 3 months her sugar started going really high and she was diagnosed with diabetes (Her dad is a type II diabetic). I took her to an endocrinologist who tested her for type 1 and Lada but all the antibodies were negative. He prescribed Xigduo XR (sglt2) because metformin did not work and xigduo eventually after a month caused her dka. After she was discharged from the hospital I took her to see a different endo (in total I took her to about 3 endocrinologist) and they all couldn’t figure out what exactly she had because her type 1 and 1.5 antibodied would all come negative but her sugar used to be super high like 300+ sometimes 400+. The doctor put her on insulin basalglar and novolog. The doctor also prescribed ozempic which did not work then he put her back on xigduo xr 5-1000mg which helped her a little bit. But if she ate a little her sugar would sky rocket. The doctor tested her again for antibodies they still came out negative but c peptide levels dropped from .9 to .84 to .32. All these has been going on for 3 years. Finally the doctor put my wife in mounjaro she took 2.5 for a month then 5mg for a month but she would feel miserable so she stopped it (even though she did lose weight but her sugars used to be still sky high 300-400). She stopped mounjaro for 3 months and now her doctor insisted she go back on it all this time she also was on insulin, xigduo xr and now last week she started mounjaro which gave her the worst dka she was in icu for 3 days. Now she is only on Insulin basalglar and novolog but her sugar level be all over the place. Sometimes even the insulin does not work. We are so lost because no doctor can figure out whats going on. I am writing here to see if anyone had a similar case with uncontrollable sugar and was able to figure our a plan or something? Btw she is 185 pounds and 28 years old. Sometimes if she only eat salad her sugar be in 130-160 but as soon as she eats even half a toast her sugar would sky rocket about 250. Tia

No idea what's what, but to state the obvious: Maybe ditch the toast? If she responds to carbohydrates the way you say she does, maybe she needs to cut back on those some. If she's rather insensitive to insulin, her own and the injected kind, then quite possibly it's time to try a different tack, and start looking at her diet. Practically all carbs turn to glucose once ingested, so.... Cut the carbs. Just be really, REALLY careful because with everything she's on, cutting cvarbs could mean hypo's, so if you two try anything, try is slowly, carefully, and test a LOT. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might help a little in getting you started.

Good luck, and once more, do be careful. A change in diet can have big effects and with all the medication... It could go wrong fast. Slow and steady changes, carefully executed, could cut down on her need for all that medication too.

Jo

 

[Antje77]

The doctor tested her again for antibodies they still came out negative but c peptide levels dropped from .9 to .84 to .32.

I think the C-peptide is much more important than the antibodies here. It shows that she makes very little insulin, so insulin seems to be the only sensible treatment.

How is she deciding on her doses? Does she carb count and adjust her doses based on that or has she fixed doses? Has she done any basal testing to see if her basal dose is right?

 

[Hamzach20k]

I think the C-peptide is much more important than the antibodies here. It shows that she makes very little insulin, so insulin seems to be the only sensible treatment.

How is she deciding on her doses? Does she carb count and adjust her doses based on that or has she fixed doses? Has she done any basal testing to see if her basal dose is right?

What is basal testing?

 

[Antje77]

What is basal testing?

It's going without foods for part of the day to see if your basal insulin does the job in absence of food.

Basal (long acting or background insulin) is designed to keep you steady when not eating, so you can use the bolus or quick acting insulin to deal with the carbs in your food.
I think @Jaylee has a useful link about basal testing.

Does your wife adjust her mealtime doses depending on the carbs in her meal?