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Need honest advice

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oops6

Member
Messages
9
Type of diabetes
Type 1
Hi, I'm completely new to this and have no idea what I'm doing I'm in need of some advice. I was diagnosed with type 2 originally in November 2016, my nurse put me straight on metformin. The metformin didn't work at all and my levels went up (my highest reading was 28.7) During an appointment with my nurse she tested me for ketones which were high, she referred me to a specialist who did some blood tests. The results were inconclusive (I have antibodies present but not high enough to be 100% type one) however they started me on insulin, I'm now on 24 units of toujeo in the evenings and using novorapid. To begin with my levels evened out and were almost normal, after a few weeks I started getting hypos so cut out the novorapid. Ive managed 6 months with little to no insulin and have been doubting my type 1 diagnosis (the specialist thinks it's type one due to my age, size, family history and activity levels). almost over night everything changed, I'm now carb counting and using a lot of insulin (it's been just over a month like this). Yesterday and today however something has changed, I don't think I have a bug, but after taking my novorapid, I've developed a really nasty headache and nausea (yesterday was vomiting) despite using enough units for the carbs, my levels have been dropping faster than they used to and I'm back to having hypos. I have no idea what is happening, I don't get hypo symptoms so I'm having to test a lot. Could the diagnosis be wrong and it's actually type 2
I'm really sorry for the long post, just feeling frustrated and lost
 
IT sounds very much like you are LADA or type 1.5. That is type 1 with a long/strong honeymoon period.

You say you have antibodies but not high enough to definitely be type 1. Are those GAD antibodies? Most people tested for GAD return an unrecordable or zero. So if you have any antibodies and diabetes that points to it being type 1 diabetes. No antibodies doesn't mean not type 1, 25% of type 1 diabetics test negative for the antibodies.

Autoimmune type 1 diabetes happens when the immune system kills off the insulin producing beta cells in the pancreas. The kill of doesn't happen all at once. It can take quite some time. While it's taking its time and you still have some residual insulin production is known as the honeymoon period. Once a type 1 starts on insulin it can give the remaining beta cells a bit of a second wind and you can suddenly find you don't need the insulin. But the immune system is still determined to kill off the beta cells, so it's inevitable that you will need insulin again. And the honeymoon period does make insulin requirements unpredictable, endogenous insulin production will just happen in fits and spurts.

Even when not honeymooning, something like an illness or hormones or stress will impact on insulin requirements.
 
@oops6 Vomiting and a bad tummy can cause hypos. Keep,testing frequently, keep hypos treatments near, and don't be afraid to call 111 if you find that your vomiting returns or you're unable to keep your blood sugar up.

I agree with Catapillar. It sound like you're Type 1 with a longish honeymoon period.
 
You will need to keep testing whilst vomiting etc.

Have you been made aware of sick day rules or told what to do for vomiting? Ie suck sugar cubes or glucogel in the mouth??
 
Thank you so much for replying, that does make perfect sense. Yes it was the GAD test, the consultant says its type 1 but my nurse thinks its type 2, she said that the antibodies would have been much higher, she left me feeling so confused. She hasn't explained anything at all.
Thankfully (kind of) I'm not working at the moment, I have 6 kids and I'm a full time carer for my disabled son. That's why I'm so anxious to get on top of this, I need to be 100% for him. Is it normal to not get hypo symptoms? It's really a big problem but my nurse refuses to believe me. The nausea and headache are still there, it only started after taking my insulin, the same happened yesterday :(
Sorry for all the questions
 
oops6 said:
Thank you so much for replying, that does make perfect sense. Yes it was the GAD test, the consultant says its type 1 but my nurse thinks its type 2, she said that the antibodies would have been much higher, she left me feeling so confused. She hasn't explained anything at all.
Thankfully (kind of) I'm not working at the moment, I have 6 kids and I'm a full time carer for my disabled son. That's why I'm so anxious to get on top of this, I need to be 100% for him. Is it normal to not get hypo symptoms? It's really a big problem but my nurse refuses to believe me. The nausea and headache are still there, it only started after taking my insulin, the same happened yesterday :(
Sorry for all the questions
Click to expand...

No, it's not normal to have no hypo symptoms. That's called being hypo unaware. About 25% of type 1 diabetics will have some hypo unawareness to some degree, but it usually takes quite some time after diagnosis for that to happen. It might be that you're just not recognising symptoms of hypos, the symptoms will be different for everyone and you might just not have spotted you're symptom yet.

Is your nurse a diabetic specialist nurse? They should be fairly familiar with hypo unawareness. If not, discuss with a DSN. Or if it is a DSN disbelieving your reports of symptomless hypos then try to get in touch direct with the consultant.

Advice on dealing with symptomless hypos would be to test frequently and to try to avoid going hypo or to run your target a little big higher. You should also consider whether you should be driving, DVLA provides that you must have adequate awareness of hypoglycaemia to drive.
 
Hi There -- really sorry to hear of your symptoms and suffering :(
but welcome to the forum !!:)

a couple of questions

what sort of level of carbs are you eating in a normal day ? under 50 ? 50-100 ? 100- 150 ? over 150 ?
are you getting proper hypos ( by testing your bloods ) even without taking any fast acting insulin ??

hugs young lady {{{hugs}}}
 
Was that insulin for eating?

Could it be eating that making you feel nauseous/vomiting etc?
 
Thank you himtoo :) I try and go as low carb as I can so around 100, maybe sometimes a little over. I'm overly cautious about being diabetic and panic a little as my grandad had type 2 diabetes and didn't look after himself, he lost a leg, lost his sight and died in hospital having his second leg removed. I learnt from him how important it is to stay healthy and take it seriously.
I try to stay around 5.5 to 6, should I aim a little higher? I did have hypo symptoms when I was first diagnosed, but last Sunday 28th I think, I had a hypo, my level was 3.8 I honestly didn't have a clue, it's happened a few times now. I only realised because I checked my levels to do insulin before a BBQ with family.
Donnellysdogs yes it was, I honestly don't know what's causing it. I was wondering could it be a batch of insulin? Would changing my pen make any difference? I only ask as I live by the sea and took kids down there, I left everything in a bag, under a towel, could the heat have damaged it? It's only happened since then (hope that makes sense?) I've accepted the diagnosis, I know I can't change it but I want to understand as much as I can.
Thank you so much to everyone that has replied
 
Can I ask how long the pen was under the blanket in the heat for? I know that heat does affect insulin, hopefully someone with more knowledge on that will be along soon :)

I think with hypo awareness it can be relatively unstable (in certain people - I know some T1's do say they always wake up for hypo's, etc) and depend on a LOT of factors. For example, my T1 felt 'hypo feeling' at about 4.3 the other day, when she'd had a relatively relaxed day inside. Yet she has been at 2.6 before with no notice, but said she felt 'bad' when we had tested. I think a lot depends on how fast the BG has dropped as well - if it has dropped very quickly my T1 tends to feel it a lot more than if it's been a relatively stable/slow drop.
 
Heat damage is possible, but that would make insulin less effective, not more - as the molecules break down - AFAIK - please do confirm this with someone smarter than I.
 
oops6 said:
Ive managed 6 months with little to no insulin and have been doubting my type 1 diagnosis (the specialist thinks it's type one due to my age, size, family history and activity levels). almost over night everything changed, I'm now carb counting and using a lot of insulin (it's been just over a month like this). this could be due to "honeymoon "phase ending -- that is when all of us Type 1's end up needing more insulin


Yesterday and today however something has changed, I don't think I have a bug, but after taking my novorapid, I've developed a really nasty headache and nausea (yesterday was vomiting) despite using enough units for the carbs, my levels have been dropping faster than they used to and I'm back to having hypos. the nasty headache can often be one of the after affects of a hypo , not so sure on the vomiting though.


I'm really sorry for the long post, just feeling frustrated and lost
Click to expand...

I tried to pop a couple of thoughts to a couple of your queries.

You really do need to get in touch with your Diabetic nurse and discuss the amounts of insulin you are taking if you are now getting a lot of hypos -- this suggests either your background insulin could be too high or your I:C ( insulin to carb ) ratio needs adjusting , or both.

I would suggest buying the book Think Like A Pancreas as well.
 
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