Glucose Test - false positive and no re-test?

[Coronet08]

Has anyone had proper glucose testing, and how do you fight incorrect diagnosis? NHS seems pretty Orwellian to me.
Had non-fasting GTT test without warning and remember drinking juice and taking sugary snacks with me to the hospital. Either way the result showed up as over 11 after 1 hour, which is not in line with previous blood tests. I'm pretty sure it's contaminated with the stuff I ate during the test.
I'm eating healthily overall, watch my sugar intake, and exercise every day. I am not overweight and don't have any family history of diabetes.
So I had a call from diabetes team and based on this one reading they have diagnosed me with Gestational Diabetes, told me my baby is more likely to die, I need to change my diet and I will need to be induced early...
I have got the testing kit and all the home test results have been ridiculously low if anything.
I'm pretty sure I dont have GT. Got in touch with the team and no response. Midwives are not able to help and referring to the diabetes team again...
This blanket approach is very bizzare, I should have declined the test but I didn't expect this bullying attitude and jumping to conclusions. How many women don't do the research and just get depressed after speaking to these people?!

Thanks guys, this is very helpful! I am sure it will be an educational journey.
I'm angry because I feel like I'm not being treated as a person/individual but an object to be handled. And I'm sure without seeing me or learning about my history their recommendations are going to be generic.
Xiaohei, I didn't realise I could decline specific appointments. At the moment I'm trying to find out how to get extra appointments to understand what my options are, and the only way to contact diabetic team is email. They don't respond to emails though.
Today is the first full testing day: I'm testing first thing and then once after each meal as instructed. I've had a low fasting reading, a 2.8 reading after eating a sandwich (white bread is meant to be the worst kind but was no time for anything else with work).. and then 6.3 after the machine malfunctioned a few times - that was after no carbs dinner (pork steak and vegetable salad). Perhaps, stress could increase the reading + I ran 3k as well walked quite a bit. during the day snacked on some fruit (an apple and some raspberries).
Maybe jogging could increase the reading as it stresses the body also?
It's definitely a learning curve!

great advice, thanks! Ill try to pin the consultant down after I've tested a few more days. Need to figure out how to get hold of people in the age of Corona! At least my midwife appointments are all going to be F2F.

@Metallicalover great, I'll look up FB group now so many questions

I had the opposite problem believing I had GDM and couldnt get a diagnosis.
The cut off for diagnosis is a random blood sugar of 9. A blood sugar of 11 is high in a healthy person, even after sugary snacks so this is suspicious. A false positive is possible but rare.

The latest guidance for diagnosis can be found here from the RCOG (coronavirus has changed testing) see appendix 3 for more details. It looks as though if your testing sugars are good it will just be remote surveillance.

<a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.rcog.org.uk/globalassets/documents/guidelines/2020-07-10-guidance-for-maternal-medicine.pdf&ved=2ahUKEwjUvbKjwofrAhXBrHEKHfW6BPUQFjABegQIBxAI&usg=AOvVaw0GbsJfDx7588fCiELy7yz1" rel="nofollow" target="_blank">www.google.com/url?sa=t&source=web&rct=j&url=www.rcog.org.uk/globalassets/documents/guidelines/2020-07-10-guidance-for-maternal-medicine.pdf&ved=2ahUKEwjUvbKjwofrAhXBrHEKHfW6BPUQFjABegQIBxAI&usg=AOvVaw0GbsJfDx7588fCiELy7yz1

Why did you have a GD test in the first place if you have none of the risk factors?! It is not a standard test unless you have one or more of the risk factors. The only other reason you would be given one is because you had glucose in your urine sample ( symptom of GD) or your baby is measuring big (again another symptom).

Something must have caused them enough concern for them to test you in the first place. So despite what you may believe as a non trained medical professional, it sounds like they were correct.

@Coronet08

Thanks guys, this is very helpful! I am sure it will be an educational journey. I'm angry because I feel like I'm not being treated as a person/individual but an object to be handled. And I'm sure without seeing me or learning about my history their recommendations are going to be generic. Xiaohei, I didn't realise I could decline specific appointments. At the moment I'm trying to find out how to get extra appointments to understand what my options are, and the only way to contact diabetic team is email. They don't respond to emails though. Today is the first full testing day: I'm testing first thing and then once after each meal as instructed. I've had a low fasting reading, a 2.8 reading after eating a sandwich (white bread is meant to be the worst kind but was no time for anything else with work).. and then 6.3 after the machine malfunctioned a few times - that was after no carbs dinner (pork steak and vegetable salad). Perhaps, stress could increase the reading + I ran 3k as well walked quite a bit. during the day snacked on some fruit (an apple and some raspberries). Maybe jogging could increase the reading as it stresses the body also? It's definitely a learning curve!

Exercise before or just after eating actually decreases your blood sugars and is recommended

You don’t have to do any thing you don’t want to-And that goes for most medical treatment. That said, if I were you I’d seek some advice from as many sources as possible ( hospital, GD forums, do a lot of reading etc) Cos it really does take a while to get your head around things/ risks and those blood sugar readings sound a little odd. it’s best to get things checked out properly and you’ll get loads of support on the GD forums. But mainly, take it easy. I’ve learned about food and also that I can’t control everything ( I still try)- just do ur best ( sounding like an advert for the Scouts!)

@AAkim, thanks for the link, this is gold and I will read this!!
@Fatted, approach differs by trust/hospital, I'm with UCLH in London: this is a routine test - they've confirmed. I was literally sitting amongst a group of women who were given sugary drink and then 1h later a test, and more were coming in to the queue all the time. Maybe someone sued them, so they decided to be extra-vigilant?

@FelicityBob, walking yes but intense exercise also? Maybe depends on the person, I always struggle with the jog and will be stopping soon. It feels fine.. just harder than it used to be pre-preg

@Xiaohei yes, I agree with your motto :) will draw on as many experiences as possible. Hoping not to deviate from my birth plan in the process, haha

Look up diabetes.co.uk they have loads of information sure they will have a section on this .

The scaremongering when it comes to GD was ridiculous in my experience.

I took the test twice with my first, 28 wks I fainted, banging my head on the way down, second time (33 wks) I thought I was going to faint, vomit and my heart felt like it was pounding through my chest. I don’t consume that much sugar in a week so to do so in one sitting was rough and to be told I had GD was shocking. I ate healthy, exercise daily, and a healthy bmi. My blood sugars were in range except for two times during a three week period testing myself six times a day and I could tell you exactly what did it (damn you Naan Bread). They wanted to induce me at 36 weeks because baby looked big to consultants but not to the sonographers. I refused (lack of evidence) and they said they would monitor me until birth, but instead I was constantly told about stillbirths and what not and being told I was killing my baby by not having an induction. They monitored my placenta and found no issues and my bloods were in normal range yet they still kept at it until I gave in. Induce at 39+0, three days only to make it to 3 cm, horrible experience and my son was nowhere near the 7.5 they had him at when they last did the ultrasound at 38 weeks. He also wasn’t breathing (but we weren’t informed about the whole situation until we reported them). He was 6 lb 13oz, normal blood sugars as was mine.

Reported them in the end and the hospital couldn’t explain why I was induced in the first place nor why my care was subpar (I know why but that’s a whole different thread) only that I could try for a vbac.

Second time around, I absolutely refused it and talked to the consultant midwife who was going to be the new head of midwifery about what happened with my last birth and she was appalled because protocol-wise she should have seen me (the consultant team I was under hadn’t and had taken my care over completely without my consent), she stressed consent, wrote a personalised plan in my notes and on the system (still had a consultant ignore it and lecture me on GD and GTT to change my mind), and that if I had any trouble to let her know. I would check my blood sugars with a monitor at 16 weeks. Sugars were fine and then we agreed that as long as baby’s weigh stayed on growth line, I wouldn’t need to go back to monitoring. Baby stayed on line through my entire pregnancy, had a zen-like birth and was born at 40+4, healthy and at 7lb 5 with normal blood sugars.

Don’t be afraid to ask questions or to get a second opinion, and that you can say yes or no, your consent matters.

If your blood sugars are really coming up as 2.8 after you have eaten you need to talk to someone as soon as you can as you could have a hypo your readings should not be that low.

The white bread your blood sugar levels probably spiked and crashed before the hour.
Exercise brings down blood sugars and they do recommend you exercise regularly and this helps to regulate your blood sugars.
I know there is 'scare mongering' but they do have to tell you this risks of GD isn't controlled as a few ladies in the GD group have had still births or very poorly babies due to this.
I had a complication of GD, my baby had IUGR and baby was measuring small. GD doesn't just produce big babies.
I think you will find the group and website helpful.

Lots of info on here already OP. Just to clarify for people who are confused about the test you had - it’s a standard screening test in some parts of the world, called a polycose where I am. Protocol here is HbA1c blood test with your initial booking bloods, then if no risk factors the polycose non fasting 1 hr glucose test around 28 weeks - a 50g glucose load. If risk factors, or the polycose is high, then a GTT is done (fasting, 2hrs, 75g glucose load). If the polycose is above 11 though that’s considered diagnostic.
11 is pretty high regardless of what you’ve eaten, but I’d agree it’s just possible you put your levels up if you ate extra sugar in that hour. I think it’s wise to monitor for now, but I definitely get where you’re coming from being annoyed - it just sounds like you don’t feel listened to. Next time you see them you can ask about retest or GTT to confirm if you want to. I think it is a big deal having to test sugars and worry all pregnancy so I don’t think you’re unreasonable wanting things to be clear.
To add - if baby is growing normally and all your sugars are on track, you don’t necessarily need early induction, more like 40-41 weeks.

I had a similar experience when I was pregnant in 2017.
My reading after the gtt was on the borderline of being diagnosed with gestational diabetes (I can’t remember the correct numbers/scale used, but say for example a score of 7+ meant you had gestational diabetes and I got 7.0 so only just diagnosed)
However I then was given a home finger prick testing kit and I never had one single high or low reading despite testing five times a day for my entire pregnancy, they were perfect scores and couldn’t be any better according to the consultant.
I never followed the specific diet (obviously ate a healthy diet anyway) and never had medication etc.
My consultant said it was obviously a false diagnoses, however he said it could not be removed from my medical record.
He thought that that the initial positive test result must be related the fact that I had hyperemisis gravidarium for my entire pregnancy, so I was sick a few times in the morning before the gtt, I somehow managed with all of my might to not be sick for the 2 hour waiting period but then was sick as I stood up to be called to take the last lot of blood.
The consultant said that this could have easily have raised my blood sugar reading. Obviously I’m not an expert so I have no idea! Despite it being frustrating to be diagnosed with something I blatantly didn’t have and that they wouldn’t remove it from my medical record, ultimately I just thought that I would rather be under extra observation, and jump through all the hoops asked of me - if it meant I could be sure that my baby was healthy. Just in case!
If you really don’t have gestational diabetes you can prove that easily at each appointment by showing your finger prick readings and although it’s frustrating you will be in and out of the appointments quickly and all the extra scans you get mean that your baby is being watched closely- which is a bonus for any expectant mother.

I had it. I was a tiny bit over on my fasting sugars. I was FURIOUS. I had a really complicated pregnancy as it was for various reasons and it was the icing on the cake. I was able to control it well with diet and it was never that bad but I hated hated hated the testing and the extra appointments. I was eventually able to see that my blood sugar was a bit dicky and that it would have been high if I had not been testing(I was able to control it with diet but it wasn't a misdiagnosis and I did need to watch what I ate). But I really understand why you are so angry about it because so was I. And anyone who is going "but why are you so upset" should either have a go at getting a drop of blood out of a finger and onto a testing strip 4x a day, or if they do that already really think about how they felt when they found out they had to.

It is definitely supposed to be a fasting test. I would want a re-test, I think, especially if you don't trust your machine They had me see an endocrinologist fortnightly in clinic. Are they referring you to one? If so talk to him. Mine was really nice and sensible.

*Or her. Bloody hell . I need to go to feminism school.

Readings of 2.8 and 11 do suggest there is something going on though.

I meant to say that you should brace yourself for the possibility that there is something going on. That's why I think speak to the endocrinologist.

@CarterBeatsTheDevil

I had it. I was a tiny bit over on my fasting sugars. I was FURIOUS. I had a really complicated pregnancy as it was for various reasons and it was the icing on the cake. I was able to control it well with diet and it was never that bad but I hated hated hated the testing and the extra appointments. I was eventually able to see that my blood sugar was a bit dicky and that it would have been high if I had not been testing(I was able to control it with diet but it wasn't a misdiagnosis and I did need to watch what I ate). But I really understand why you are so angry about it because so was I. And anyone who is going "but why are you so upset" should either have a go at getting a drop of blood out of a finger and onto a testing strip 4x a day, or if they do that already really think about how they felt when they found out they had to.

It is definitely supposed to be a fasting test. I would want a re-test, I think, especially if you don't trust your machine They had me see an endocrinologist fortnightly in clinic. Are they referring you to one? If so talk to him. Mine was really nice and sensible.

Certainly not furious. Sad, scared for my baby, relieved that it had been picked up, but certainly not furious.

A few drops of blood a day is really nothing. I have a young nephew with diabetes who has a permanent glucose monitor attached which I supposed helped me put my situation into perspective.

Maybe it did. I am glad that you didn't feel the same way as I did but my immediate reaction was what it was.

I dunno I used to sob as a 12 year old about pricking my finger. Mind you the contraptions back then were on a spring and it was bloody painful. These days it doesn't hurt at all.

I had no increased chance of GD (normal BMI), no symptoms and just passed the GTT, right on the line. They treated me For GD anyway and I never had a high reading during monitoring. A few weeks before the premature birth of my son my fasting sugar went crazy and I ended up on high doses of insulin. I’m glad I went along with the treatment, it wasn’t difficult and as a nice side effect I didn’t gain any weight in pregnancy.

Thanks all, this is really helpful info and thanks for all the support. It means a lot!
I had readings around 8 yesterday because I started the day with just over 6. The first day I was super stressed and didn't eat much, which can't be helpful either. The food I eat has lilttle bearing on the results so far and my diet is healthy but it's early days, will keep looking for patterns. Maybe bananas are really bad for me ha.
Had a 3k run this morning: fasting blood sugar 5 (ok I had a few nuts at 4.30am so maybe a bit lower otherwise) but WENT UP to 5.3 after the run. I read somewhere when you push your body it releases extra sugars to keep you going. I guess this is useful info that after the run for sometime I would have raised results.
I'm learning not to prick my finger 3 times to get one test, I was obviously putting the blood on the wrong part of the strip (the right end but not at the tip).
Spoke to the diabetic team diagnostic nurse: they won't do a retest as believe with the original result it's worth monitoring anyway.
I feel great so will be refusing induction unless there are signs of danger for the baby and my readings will come up high regardless of diet.