Been discouraged from testing... could use some advice on what I should be doing.

[Goldenhawk]

Hi All, I'm new to testing and to using insulin, so first week this week. I'm hoping to get pregnant, so my consultant recommended that we aim for stricter control as my HBA1C was a bit too high and we feel I can do better. He recommended insulin as it would improve my control as metformin isn't suitable for me (the side effects are horrible). My consultant recommended Libre 2 monitoring in addition to insulin as it would help with the stricter control.

Now the frustrating part: The nurse disagreed with the consultant's plan, and felt the HBA1C was "fine" for getting pregnant even if it is higher than the NHS recommendation as it wasn't dangerously high. He also suggested I not bother with insulin or testing and questioned why I was there. It took two conversations before I finally convinced him to at least get me started on insulin as per the consultant's plan and was given a finger prick device. I was flat-out refused a Libre 2.

On the 2nd consultation with the nurse to set the insulin level I was told off to testing 8 times a day - I figured more data was good, but ok. We've set an initial dose of insulin to start this week, and then I've been told I don't need to test except for 1 day where I do it 4 times a day. That's apparently enough to make a decision about insulin dosage.

I'm concerned and not sure this is right. Is it? Surely it would be better to have multiple days of readings to see what's going on and how food + insulin is affecting me? I actively want to make better choices to manage this.

Any ideas on what I should be doing around testing?

 

[lovinglife]

Hi @Goldenhawk & welcome to the forum

I can’t really help as I have no experience of insulin or gestational diabetes but I’m sure someone will be along who can share their experience with you.

I do think if you are on insulin you should be needing to test multiple times a day as there is a risk of hypos, it not just testing to see how much insulin you need

 

[lovinglife]

Just a thought can you get in touch with consultant that recommended the initial treatment? Not diabetes related but a couple of times in the past I’ve had a GP disagree with some treatments for my son, I contacted the consultant who prescribed the medication and they wrote to the GP insisting that they prescribe the meds that he recommended. Apparently a consultant trumps a GP. It may be worth a try

 

[EllieM]

Hi @Goldenhawk and welcome to the forums.

I have to be careful what I say as I'm T1 and not T2, and my youngest is 28, but I have experienced two successful pregnancies with insulin.

Can I just clarify a few things?

I assume the consultant is at the hospital? Is the nurse also a DN at the hospital, or your surgery? I'm frankly bewildered that a nurse should be overruling the opinion of an endocrinologist.

Can I ask what sort of insulin(s) you have been put on? A big issue with insulin is that it can cause hypoglycemia. Has anyone explained to you about what this is and how you treat and avoid it? I would expect that at a minimum you should be testing before you drive, if you drive.

Are you taking any supplements? In my day diabetics were put on folic acid when they were trying to conceive, though recommendations may have changed.

How long have you been T2 and what was your last hba1c? Have you had non diabetic pregnancies already?

And back to your actual testing question.... Did the nurse suggest when you should be doing this testing? I can see the argument that if you are on a small dose of insulin you don't need a lot of testing results till you're actually pregnant and your insulin needs change, but you do need some, and hypos are a risk for insulin users. (HYpoglycemia, or low blood sugar, happens when your blood sugar goes less than 4. While this is not unusual for non diabetics, the problem happens because insulin can make your blood sugar go much lower than 4, and as blood sugars go down into the low 3s and 2s you can become confused and (if it goes low enough) even pass out.

Sorry for the wall of questions and good luck with the prospective pregnancy.

 

[Jaylee]

Hi All, I'm new to testing and to using insulin, so first week this week. I'm hoping to get pregnant, so my consultant recommended that we aim for stricter control as my HBA1C was a bit too high and we feel I can do better. He recommended insulin as it would improve my control as metformin isn't suitable for me (the side effects are horrible). My consultant recommended Libre 2 monitoring in addition to insulin as it would help with the stricter control.

Now the frustrating part: The nurse disagreed with the consultant's plan, and felt the HBA1C was "fine" for getting pregnant even if it is higher than the NHS recommendation as it wasn't dangerously high. He also suggested I not bother with insulin or testing and questioned why I was there. It took two conversations before I finally convinced him to at least get me started on insulin as per the consultant's plan and was given a finger prick device. I was flat-out refused a Libre 2.

On the 2nd consultation with the nurse to set the insulin level I was told off to testing 8 times a day - I figured more data was good, but ok. We've set an initial dose of insulin to start this week, and then I've been told I don't need to test except for 1 day where I do it 4 times a day. That's apparently enough to make a decision about insulin dosage.

I'm concerned and not sure this is right. Is it? Surely it would be better to have multiple days of readings to see what's going on and how food + insulin is affecting me? I actively want to make better choices to manage this.

Any ideas on what I should be doing around testing?

Hi,

If your consultant has given the go ahead for a prescribed Libre 2. He should instruct your GP to put them on prescription. (Since you use insulin?)
I’m a male T1, & this is how it worked for me.

Fingerprick testing 8 times a day is not unreasonable for an insulin dependant, especially if you also drive.

Overide your nurse. See your consultant. Edit to add legal obligations as a driver in the UK. https://assets.publishing.service.g...e-to-insulin-treated-diabetes-and-driving.pdf

Best wishes.

 

[Goldenhawk]

Hi @Goldenhawk and welcome to the forums.

I have to be careful what I say as I'm T1 and not T2, and my youngest is 28, but I have experienced two successful pregnancies with insulin.

Can I just clarify a few things?

I assume the consultant is at the hospital? Is the nurse also a DN at the hospital, or your surgery? I'm frankly bewildered that a nurse should be overruling the opinion of an endocrinologist.

Can I ask what sort of insulin(s) you have been put on? A big issue with insulin is that it can cause hypoglycemia. Has anyone explained to you about what this is and how you treat and avoid it? I would expect that at a minimum you should be testing before you drive, if you drive.

Are you taking any supplements? In my day diabetics were put on folic acid when they were trying to conceive, though recommendations may have changed.

How long have you been T2 and what was your last hba1c? Have you had non diabetic pregnancies already?

And back to your actual testing question.... Did the nurse suggest when you should be doing this testing? I can see the argument that if you are on a small dose of insulin you don't need a lot of testing results till you're actually pregnant and your insulin needs change, but you do need some, and hypos are a risk for insulin users. (HYpoglycemia, or low blood sugar, happens when your blood sugar goes less than 4. While this is not unusual for non diabetics, the problem happens because insulin can make your blood sugar go much lower than 4, and as blood sugars go down into the low 3s and 2s you can become confused and (if it goes low enough) even pass out.

Sorry for the wall of questions and good luck with the prospective pregnancy.

Hi EllieM,
The consultant is based at the local hospital as is the nurse. I agree, I did find it odd that the nurse would disagree. I do drive, quite a lot actually, so at the very least, I know I need to test before I drive and ideally every 2 hours on long trips, which is fine. I usually like to take a break every two hours anyway if I've got a really long trip planned.

I've started with Lantus which is a long-acting insulin. Hypos do concern me, particularly as we're still trying to titrate the dosage since I've just started on it. Then if i need a top up with something shorter acting we can do that later. But for now we're aiming for tight control and seeing if we can achieve that with just the long acting. And yes, definitely started on supplements, 5mg of Folic acid daily, iron and Vit. D. It would be my first pregnancy so I want to get everything as good as I can get. *fingers crossed*

I've been type 2 for about 7 years, diet controlled for about 6 years and started trying with Metformin to get better control last year but not been successful with it as the side effects were horrible. My latest HBA1C was 51, so not too bad for a T2, but we're aiming for 48 or less. So there is work to do yet!

I'll ring the consultant and my GP and see what we can do then. Thank you for your help!

 

[Goldenhawk]

Hi,

If your consultant has given the go ahead for a prescribed Libre 2. He should instruct your GP to put them on prescription. (Since you use insulin?)
I’m a male T1, & this is how it worked for me.

Fingerprick testing 8 times a day is not unreasonable for an insulin dependant, especially if you also drive.

Overide your nurse. See your consultant. Edit to add legal obligations as a driver in the UK.

Best wishes.

Hi Jaylee,
Thank you! Indeed, I really like the idea of using the Libre 2, less finger pricks are definitely better! My fingers are already sore from testing so often and I've already gone through the initial test strips that I was given by the hospital. I'll follow up with the GP and the consultant ASAP to clarify and see what we can do. Thank you for your help and linking to the guidelines!