Has anybody else had a similar story? Waiting for diagnosis

[francescakate]

Hi everyone. I've just joined the community and will be posting a thread in the new members board but I really need help so was hoping to post about my situation here too in case anybody has advice.

I'm 28 years old and am currently waiting on test results to tell me what form of diabetes I have. I was pregnant last year and developed gestational diabetes which had to be treated by metformin and insulin but this went away when I gave birth in January 2021. In April 2021, I had my HBAC1 which was 40 so not great but not prediabetic. My weight was slightly in the overweight range but not obese and my diet could have been better but not too bad so I wasn't too worried.

In October my son got hand foot and mouth and passed this on to me. One morning I felt really unwell so checked my blood sugar and my result was 16. I tested a few times throughout the day and had a high of 25 at one point. I had a repeat HBAC1 and my result was 69 so it had gone up by 29 in 6 months despite me losing weight and eating a pretty standard diet.

My doctor was confused because at this point I was a pound away from being in the healthy BMI range, I've got a baby that I'm always running around after and she said I don't fit the normal criteria for Type 2 especially given that my HBAC1 jumped so quickly. She said I'm not typical Type 1 either because I don't have any ketones in my urine and feel mostly well. She wrote to the hospitals endocrine specialist who ordered some antibody tests to determine whether it's Type 1, 1.5 or 2.

They did this blood test on 4th November and I've still not received my result (I've called several times and have been told to wait). I'm on one metformin with breakfast and one with my evening meal and have been told to take my blood before each of these meals. It normally is anywhere between 6.0 and 6.8 for both these meals and sometimes can be a bit lower if I've been particularly active that day.

Mentally this whole thing has really taken it out of me. I have anxiety and depression as it is and when I was first getting these high readings, I starved myself and lost half a stone in a week. I wasn't eating enough at all and had to stop breastfeeding because my milk supply disappeared. I'm doing a bit better now but I'm getting to the point where because I'm in limbo I feel like just eating whatever I want because I'm undiagnosed and untreated.

I'm sorry this got so long but has anybody had a similar experience? Does anybody know how long I can expect to wait for my antibody results? Has anybody had their HBAC1 increase so sharply and if so, what type of diabetes did you end up having?

 

[Inka]

Welcome @bvnshee 🙂

“I starved myself and lost half a stone in a week. I wasn't eating enough at all and had to stop breastfeeding because my milk supply disappeared”

That’s very upsetting - please don’t blame yourself or starve yourself. You’ve done nothing wrong. xx

To answer your questions, if they’ve done a C Peptide test and a Type 1 antibodies tests, they can take weeks to come back so bear that in mind. I know at least three women with a similar story to yours - told they had Gestational Diabetes (GD), then seemed to deteriorate. All of those three actually had Type 1 and had been in the early stages of it during pregnancy - ie they did not have GD. Once they got the right treatment (insulin) all was well.

Now, that might not be you. Perhaps you did have GD and now have Type 2, but I would think it’s possible that you too have Type 1. It develops more slowly in adults. So - keep an open mind, make no assumptions about diabetes type, and look after yourself. If you suddenly become unwell and/or have high blood sugars, phone your doctor.

 

[trophywench]

Exactly what Inka said ! Have you still got your blood glucose meter, to keep an eye on it in the interim, cos I definitely think that wouldn't be a bad idea?

 

[DaveB]

Hi. It's important to have a C-Peptide test as well as antibody tests and the latter can still be negative despite having low insulin. There are causes of T1 beyond antibodies such as viruses and the C-Peptide measure your insulin level. Also checking ketones is not necessarily a good measure. I sometimes use a ketone stick when my BS is in the 20s and it shows none. The test can warn of impending DKA but is not a good test for T1/T1.5. At the moment just keep the carbs way down and do ask for a C-Peptide test if the antibody (GAD etc) test is negative.