It's a long one.
Any endocrinologists out there?
I’m at a complete loss. I’m hoping if I post here, there may be some women with the same experience or someone who can shed some light.
There's a lot of type two diabetes in my family (father’s side).
My Dad, both aunts, my uncle, my brother (and my cousins on that side both developed gestational diabetes). Oh and my mum is currently pre-diabetic.
I did what I thought was a sensible thing (now not so sure!) when I was 10 weeks pregnant with my son (he’s now 3)- I bought a little glucose meter from boots (you can prick you finger and take glucose readings).
I did this to keep an eye in my glucose levels and to help me see how my body processed/ responded to meals. I wanted to be prepared to make healthy adjustments so that (if I did develop gestational diabetes) I would be able to manage it as well as possible.
I mentioned this to the team during early appointments and they raised their eyebrows at my readings (said they were quite high and immediately booked me in with the diabetes team).
they got me to submit my readings and after two weeks said I had gestational diabetes.
they said they didn’t need to do the oral glucose tolerance test (OGTT) because it was clear I had gestational diabetes so why put me through an unpleasant test.
Now here’s the problem… the only thing that was ever out of range was my morning (fasting) glucose reading.
They don’t want to see it above 5.2
if you get 5.3 or more three days in a row, BOOM intervention central- they prescribe insulin. at least thats what they did in that trust.
However, I made some diet changes and managed to keep my levels at 5.2 until late in the third trimester.
they prescribed me insulin at the very end but with a tweak (I ate protein just before bed) I didn’t need it.
if I needed it then of course I’d take it. It was an ivf pregnancy so I am well used to injecting myself and I just wanted to do (still want to do) whatever is best for my child.
With this diagnosis came a lot of stress and anxiety (“your baby is at higher risk of stillbirth”) and they wanted to induce me because (despite nobody knowing why) babies whose mum's have gestational diabetes are at a slightly greater risk of stillbirth.
Of course, despite my great glucose control, that terrified the shit out of me and I accepted induction just before his due date.
he was back to back. It was awful. I can’t begin to describe the pain. I was nil by mouth. I was pumped full of drugs. It spiralled into an emergency c section. The post labour ward was like hell on earth. It was covid. I haemorrhaged twice. It was the worst experience of my life. I’d rather have ten craniotomy’s than go through that again (I’ve had a craniotomy).
Fast forward a year from the birth, I’m seen by an experienced specialist endocrinologist. She looks at me, declares I’m slim, my blood work is perfect, they never actually did an OGTT so she doesn’t know if I ever actually had gestational diabetes! WTAF! So maybe I never needed to prick my fingers 4 times a day for the whole pregnancy, or be induced??
she does more tests (I get glucose injected into my veins and bloods taken to see how my pancreas reacts…) I pass with flying colours.
She really questions whether I ever had gestational diabetes ESPECIALLY (and this is key) because I never had any problem with my glucose levels after eating or indeed any time at all, except my morning (fasted) glucose readings.
apparently your pancreas regulates your glucose after food intake and it’s your liver that regulates things when you’re waking up after sleeping (fasting).
She recommends that for my next pregnancy I don't test my sugar levels AT ALL in early pregnancy. She says I should just wait for the OGTT. She says it can be done a bit earlier than normal (16-20 weeks) but that I may well pass it and then we’ll go from there.
she says it’s imperative that I get the test done because without this, I can’t be formally diagnosed with gestational diabetes.
I do as I’m told. She liaises with the maternity team. plan in place.
Unfortunately I have two miscarriages. This makes me nervous and so when I get pregnant again (I’m currently 13 weeks), I go ahead and test, just to see.
I simply cannot fathom why the doctors would have prescribed me insulin when my morning readings were just slightly above the threshold and yet now I’m being told that it really doesn’t matter one iota- even if they are consistently high. How does that make logical sense?
When I find out I'm pregnant we relocate and I have a new team at a new hospital. I tell them the history. They tell me to test! I test.
as I expected my levels are consistently high in the morning. All perfect during the day.
As an aside, I have a scan with a very experienced fetal medicine specialist during the move. I ask him about this. And he says it’s only the morning readings that are elevated… And they’re not too high. He’s not concerned about the baby. Stop testing.
I go to my appointment with the new team this morning (consultant endocrinologist) And he says “oh your readings are high in the morning. You’ve got gestational diabetes. No need for an oral glucose tolerance test. You’ll need medicine"
He merrily tells me that my high morning glucose is toxic to my baby and he only booked me in for the OGTT because I said the previous consultant specifically told me to get it done. he wasn't too keen on booking it.
I'm totally confused.
Thinking about it logically…
Thet are happy for your glucose to go up to 7.7 an hour after a meal. But if your glucose goes above 5.2 first thing in the morning then they panic.
why? Does anyone actually know? he can't tell me.
If it’s simply because a rise in glucose is toxic to the baby then why does it matter what time of day?
my glucose might be elevated to 6.5 for a mere 30 minutes once a day in the morning (there are lots of different reasons the morning glucose can be elevated). Why does that matter so much when it can be 7 after meals without anyone raising an eyebrow? and its not (its 5.8 after breakfast this morning!!)
I understand that it signals different things and i know they are different readings showing different processes. but nobody can actually tell me. It's frustrating because these decisions will have a huge impact on the choices I have for birth.
Why is one top endocrinologist telling me to do the OGTT and see if I pass… and to ignore the morning readings…
Yet the one i saw this morning (in charge of my care) is saying that it doesn't matter whether i pass it or not. I still have gestational diabetes and he already wants to induce me?
anyone? :(