Diagnosed 2 months ago, Type 1

[autumn13]

Hi everyone,

I'm just looking for a bit of reassurance really. My husband was diagnosed type 1 on new years eve (Happy new year haha), roughly 2 months ago.

First of all, his blood sugar was always very high, anywhere between 18-25. Over the following weeks, he adjusted both insulin pens to a high dose, and it did seem alot better and came down quite alot.

It started to be a good reading everyday (all 3) so he dropped the insulin amounts down to reflect this. However, he now keeps going hypo, at least once a day. He had 3 in one day last week and I'm not sure what to do or why this is happening. I'm very worried.

We had dinner last night around 8, and by about 10pm he was experiencing a hypo. He was ravenous, slurring his words and quite shakey.

I've read some bits online about it being quite normal for a newly diagnosed type 1 to have blood sugar levels up and down constantly. Is that true? Does it seem like this seems to be the issue?

He does have an appointment with the diabetic team at our doctors surgery next week, but they haven't really been much use. Everything we have learnt about carbs, insulin and pretty much everything to do with type 1 has been down to my cousin's husband who has been type 1 since a young age. At his last appointment the nurse actually said to him "Oh I usually deal with type 2" when he was asking questions!

Any advice will be really, really appreciated.

Thanks

 

[EllieM]

I'll comment. Yes ,hypos are probably inevitable for T1s, but not at that rate. I know we're not allowed to advise on doses here, but I'd say he's almost certainly having too much insulin. I'd expect the surgery to reduce his insulin next week.

Has he been referred to a hospital clinic (gps are often clueless about T1s)?

Does he have someone he can phone about advice on blood sugars/doses?

I'm assuming you're in the UK.

 

[Deleted Account]

We cannot advise on doses and I would second the advice to insist on a referral to a diabetes consultant rather than the team from your GP surgery.

In the meantime, I would start a diary
- time
- what did he eat
- how much insulin did he inject
- what exercise did he do

Hopefully, he will start seeing some patterns which he can bring up with the diabetes team.

Rereading your message, you do not say what is his insulin regime. Is he on a fixed dose or a basal-bolus regime (long acting once or twice a day and fast acting with meals)?
If the former, this is often found to be restrictive (he would have to eat the same amount of carbs at approximate the same time every day) and I would push very hard to get basal - bolus.
If he is already on basal-bolus, he probably needs to lower his basal insulin dose and maybe review his insulin to carb ratio. His diabetes team should be able to advice on this ... if they can'y it is further fuel to insist on being referred to someone who can.

 

[Juicyj]

Hello @autumn13 and welcome

It takes time to work things out but the best thing you can do is learn as much as possible about care and management - so it's natural to ask as many questions as possible, i'd recommend reading 'think like a pancreas' written by a type 1, you can learn more about t 1 management at https://www.bertieonline.org.uk/

Getting insulin adjusted though is important so call up your team today and run through his readings with them, hypos are an inevitable part of controlling type 1 sadly but there is generally a good reason why it's happened, so too much basal/bolus/exercise/not enough carbs etc etc.

 

[KK123]

Hi there, 3 hypos in one day is dangerous and your husband's diabetic team need to pull their fingers out. Your husband was only diagnosed 2 months ago and should still be under scrutiny by a diabetic nurse/consultant. I had the same issue in the first couple of weeks and out of frustration trying to get hold of the DN, I contacted the Diabetic clinic at the hospital. They contacted the Drs surgery and gave them a right telling off. You should have DIRECT access to someone who can discuss doses etc and give advice about changing those doses on any day of the week not 'see you next week at the surgery'. The problem is you really do have to be massively proactive. Hypos are sometimes dismissed as 'one of those things' and yes they can be but when you are having them this often there is a problem and it needs sorting. x

 

[autumn13]

Thanks for your replies everyone;

Yes, he has been seen at the hospital with the diabetes team, but we have lost complete faith in them as they gave him disposable novorapid pens but with insulin cartridges but you can't change the insulin in a disposable pen...and we were away on our honeymoon when we realised, which was not good and they knew we were going away. They just seem like they have no idea what they're talking about; when he was diagnosed at the hospital (He was sent from the doctors because he had ketones), they rushed through the explanation and we went home feeling so, so confused about it all.

He is on basal-bolus, and I do think we need to speak to someone about the insulin to carb ratio- hopefully we can see someone who knows what they're talking about, rather than the nurses I've already mentioned. He already keeps a diary of the blood sugar readings, along with how much insulin he has had, but adding food into the diary will definatley help I think.

You've all been really helpful - Thanks so much, I really appreciate it

 

[autumn13]

Hi there, 3 hypos in one day is dangerous and your husband's diabetic team need to pull their fingers out. Your husband was only diagnosed 2 months ago and should still be under scrutiny by a diabetic nurse/consultant. I had the same issue in the first couple of weeks and out of frustration trying to get hold of the DN, I contacted the Diabetic clinic at the hospital. They contacted the Drs surgery and gave them a right telling off. You should have DIRECT access to someone who can discuss doses etc and give advice about changing those doses on any day of the week not 'see you next week at the surgery'. The problem is you really do have to be massively proactive. Hypos are sometimes dismissed as 'one of those things' and yes they can be but when you are having them this often there is a problem and it needs sorting. x

That's exactly what the attitude has been, "Oh, you're fine, see you at your next appointment" sort of thing, no support whatsoever. They've said to ring them whenever we have any questions, but that's not any good when they don't answer the phone! He's going to phone the DN at the hospital today, and explain what has been going on. Thanks for confirming my suspicions, that the way this has been going is not good and it has to be dealt with. X

 

[KK123]

That's exactly what the attitude has been, "Oh, you're fine, see you at your next appointment" sort of thing, no support whatsoever. They've said to ring them whenever we have any questions, but that's not any good when they don't answer the phone! He's going to phone the DN at the hospital today, and explain what has been going on. Thanks for confirming my suspicions, that the way this has been going is not good and it has to be dealt with. X

Autumn, make sure he emphasises the THREE hypos in one day, they most certainly do have to take notice of that. Please let us know how you get on. x