Should I ask f or Insulin?

[tomcamish]

Evening all.

I am currently on the maximum dose of Metformin and also 100mg of Sitagliptin. I'm apparently Type 2.

Over the past few weeks I have been getting lots of headaches and feeling tired, and a blood tests I've done myself have given readings dancing between 12 and 24.

An example of one of these is a 17 after porridge for breakfast and a salad for lunch. Barely any carbs that can cause a 17. I'm finding I'm constantly hungry, always tired and miserable with the fact that it seems there's not much I can eat without getting high.

At my last diabetic review (when I was put on the Sitagliptin) my nurse told me as I'm only 29 I'll "definitely be put on insulin at some point".

I've been talking to my father in law who has been Type 1 for 45 years. He thinks I should be put on insulin now as the tablets clearly aren't working enough for me to be able to actually eat. Some days I wake up on 15 so end up skipping breakfast so I don't make myself higher.

So, at my next review which is in 2 weeks, should I ask to be put on insulin so I can actually eat? My father in law uses the DAFNE method where he adjusts his insulin based on what he's about to eat - his blood sugars rarely go above 9.

I was diagnosed nearly 18 months ago and at each review have simply been told "take another tablet". I'm now on 5 tablets a day and am fed up. I've been out for meals with family and really struggled to find something I can eat that won't send my sky high. Obviously I'm not saying I'd have a jab to eat cake, but it would be great to be able to have something like roast potatoes at a carvery without the adverse effect.

Its worth pointing out that when I've mentioned my symptoms on here before, lots of people have said they had the same and it turned out they were type 1 all along.

Thanks in advance for any advice.

 

[DaveB]

Hi. The key question is what your weight is? If you are slim then you are likely to be Late onset T1. If overweight then perhaps the carbs are still too high. If you are slim I'm surprised you aren't already on Gliclazide as Metformin won't be doing much; Sitagliptin will be helping. If your next Hba1C is noticeably above 7% then I would discuss having insulin as a LADA.

 

[tomcamish]

Hi. The key question is what your weight is? If you are slim then you are likely to be Late onset T1. If overweight then perhaps the carbs are still too high. If you are slim I'm surprised you aren't already on Gliclazide as Metformin won't be doing much; Sitagliptin will be helping. If your next Hba1C is noticeably above 7% then I would discuss having insulin as a LADA.

Hi,

When I was diagnosed I was 19 stone 12. I am now 15 stone 2 and my nurse has said I am slim (I'm 6ft 1).

She also said she didn't want me to go onto Gliclazide yet as it gradually reduces the natural insulin the body already creates. She just shrugs off type 1 as the metformin worked at first.

My last Hba1C was 97 (up from 67) which was 4 months ago. Should know what it is this week as I had bloods taken last week.

 

[Mini-Vicki]

Hiya,
Sorry to hear you're having a bad one. I'm another of the late onset type 1s, I was misdiagnosed as type two, and put on metformin, gliclazide and stitagliptin until I was referred for insulin treatment.
It might be worth requesting a referral to a Diabetic Specialist Nurse or a a diabetes consultant to discuss insulin therapy.
Good luck!

 

[tomcamish]

Hiya,
Sorry to hear you're having a bad one. I'm another of the late onset type 1s, I was misdiagnosed as type two, and put on metformin, gliclazide and stitagliptin until I was referred for insulin treatment.
It might be worth requesting a referral to a Diabetic Specialist Nurse or a a diabetes consultant to discuss insulin therapy.
Good luck!

I've lost count of the number of people who have told me there's no such thing as early onset type 1. There clearly is!

I think I'll ask for a new review at local hospital's diabetes clinic, never been there.

 

[Rosiecarmel]

Hi There!

I'm also a LADA or late onset type 1. I was diagnosed type 2 initially and was on a lot of medications. I ended up on max dose metformin, max dose sitagliptin and max dose gliclazide yet my blood sugars were still going up to 25ish. On top of 4 metformin, 1 sitagliptin and 4 gliclazide a day, they put me on Victoza. I ended up in hospital with an allergic reaction. They then put me on basal insulin (Humalin I which is the most common they give to type 2s initially.) it still wasn't working. I saw the consultant who immediately said I was LADA and put ms on basal bolus. My control isn't amazing but it's getting there. This all happened in 12 months.

We do exist! A lot of doctors just don't really understand it. There are, however, plenty of type 2s on basal bolus as well as for some people, oral medications become ineffective.

Have you ever had a GAD antibody test done? If it comes back positive, it's very likely you are LADA. Although myself AND @Mini-Vicki (if I remember correctly) both were GAD negative so it's not conclusive.

Your rising hba1c is a cause for concern so whether you are type 1 or type 2, insulin may be necessary. The fact it's rising still only 18 months after diagnosis is also worrying.

How do you feel about insulin? Do you have a consultant?

 

[tomcamish]

Hi There!

I'm also a LADA or late onset type 1. I was diagnosed type 2 initially and was on a lot of medications. I ended up on max dose metformin, max dose sitagliptin and max dose gliclazide yet my blood sugars were still going up to 25ish. On top of 4 metformin, 1 sitagliptin and 4 gliclazide a day, they put me on Victoza. I ended up in hospital with an allergic reaction. They then put me on basal insulin (Humalin I which is the most common they give to type 2s initially.) it still wasn't working. I saw the consultant who immediately said I was LADA and put ms on basal bolus. My control isn't amazing but it's getting there.

We do exist! A lot of doctors just don't really understand it. There are, however, plenty of type 2s on basal bolus as well as for some people, oral medications become ineffective.

Have you ever had a GAD antibody test done? If it comes back positive, it's very likely you are LADA. Although myself AND @Mini-Vicki (if I remember correctly) both were GAD negative so it's not conclusive.

Your rising hba1c is a cause for concern so whether you are type 1 or type 2, insulin may be necessary. How do you feel about insulin?

Hi,

As far as I'm aware I've not had that test done. If I remember correctly my nurse said there was a test that would show if I was type 1 but there wouldn't be any point doing it as I'm "definitely not type 1".

To be honest after talking to my father in law i think I'd rather be on insulin. It sounds easier to manage and if it means I'm not constantly sky high anymore then so be it. I've had enough of headaches and trying not to fall asleep at work. And I'm so damn hungry all the time.

I noticed your Hba1C when they misdiagnosed you - when I was diagnosed mine was 142!!

 

[Sally71]

I think the key point here is that you are sky high all the time and you don't want to be. What type you are is irrelevant, clearly the medication you are already on isn't working. And so what if it worked at first, it ain't working any more! This is what you need to point out to your nurse and ask her what she's going to do about it - "nothing" isn't an option!

In fact I think it is the case with misdiagnosed T2s that T2 medications do work initially but not for long. Perhaps you could also ask your nurse how she can be so sure that you aren't T1 when she's refusing to test you for it - if it's just that you are over 18 then she's wrong - plenty of people have been diagnosed T1 in their 40s and even older.

 

[Alba37]

Anyone can be diagnosed with Type 1, there are more adults than children diagnosed.

'Recently research has shown half of all Type 1 Diabetes develops after 30 Years of Age, (Ref) Almost 10% of all adults with diabetes have type 1, but it’s the most common type of diabetes diagnosed in children, type 2 diabetes is very rare in young people.'

http://www.type1d.info/

You could be Type 1 and Type 2, Like Type 1 with insulin resistance. With Type 1 already in your family it seems they have only taken your weight into account to give a T2 diagnosis. I think I'd want more tests and insulin if you can't get control on oral meds/Victoza Tom. Good luck.

 

[Mini-Vicki]

Hi,

As far as I'm aware I've not had that test done. If I remember correctly my nurse said there was a test that would show if I was type 1 but there wouldn't be any point doing it as I'm "definitely not type 1".

Yep, I've had this exact thing said to me by the GP that diagnosed me as T2. GPs and GP nurses are fantastic, however, they are not specialists in a particular area, and medicine moves on faster than they can keep up, this is why I think it's vital for anyone with an illness like diabetes should be referred to someone with more specialist knowledge. So definitely ask for a referral.
I'm currently attending an NHS diabetes education course, there are 12 of us there, all type 1, but 3 of us are type 1.5, or late onset as it's called. So late onset type 1 is clearly more prevalent than the GPs would like to think.

Yep, you're completely correct @Rosiecarmel my GAD was negative. So the GP is still insisting I'm 'T2 that needs insulin' 🙄

 

[grovesy]

One of the members, sorry I can't remember who, was speaking earlier in the year to a researcher, who said they are starting to see evidence that rather than defined types many Diabetics are part of a wide spectrum!

 

[mikeyB]

With an HbA1c like that, the sooner you get on insulin the better. I think you are one of the growing gang of the wrongly diagnosed, and the sooner you see a consultant the better.

 

[Redkite]

I would insist on an islet cell antibody test to see if you are actually type 1. Whatever the situation, you can't go on with blood glucose levels as high as that, and since you're on max doses of meds, they are clearly ineffective. Definitely ask for insulin, and a referral to a consultant.

 

[Owen]

I would insist on an islet cell antibody test to see if you are actually type 1. Whatever the situation, you can't go on with blood glucose levels as high as that, and since you're on max doses of meds, they are clearly ineffective. Definitely ask for insulin, and a referral to a consultant.

Either way, it does not matter as much as getting the right treatment, in this case. Tom wants insulin, insulin will solve his problem. Getting the right label will then open up some training but the insulin therapy is the priority.

 

[AndBreathe]

OK, I'm going to ask a couple of questions here. Not one of us here can diagnose whether you're T1, T2 or anything else. Of course, it's true that there are erroneous diagnosis out there; quite possibly due to age, individual appearance, other lifestyle factors, and ignorance that actually T1 can occur at any time.

I agree your numbers are uncomfortably high, but infuriatingly, a number of T2s find they have one or two nemesis factors driving their numbers. Their overall diets may look good, but through testing they sometimes find that certain foodstuffs; often wheat, and for some dairy, cause irrationally high numbers. As we are often particularly keen on the things we're intolerant to, these are often things the person likes to eat. Sometimes our bodies play cruel tricks on us.

So, from that I might firstly enquire if you've done an exercise recording your food diary, matched up with finger prick readings, to see if any patterns or trend show up, or if any personal food foes stand out?

Secondly, whilst your nurse calls you a slim person, applying, from the information you have given, the NHS BMI calculator, your BMI comes out at 27.9, which is a bit into the overweight band.



So, from that I would ask if you carry any weight around your mid-section? Research is showing more and more that the mid-section is the important area to trim up, if at all possible. Secondly, I acknowledge the BMI scale is a relatively frail measure for the very tall and very short, so secondary to that, many health care professionals are putting more emphasis on the height/waist proportions. Ideally, our waist measurement should be no more than half our height. So, at 6' 1", your waist should ideally be 36.5" or less.

Of course, none of that is a substitue for lab blood tests in solving the puzzle.

It's my belief that in the absence of additional tests, there is a fairly strict progression pathway for the management of T2. In the link below is quite a comprehensive document you may find interesting (although a somewhat dry read!), which goes through all the drugs, pros and cons, costs and contraindications (relating to other conditions). The document is from Surrey, but all CCGs tend to have something very similar, but this was the first that came up when I asked Dr Google.

Based on that document, it would seem, if your GP wants to keep your care with him for the moment, you may have a way to go.

I'm not writing any of this to be a killjoy, but just to counter-balance the thread content, to encourage thought and discussion.

I hope you can bring things under a bit better control soon.

 

[Owen]

The problem is that the interpretation by some GP's is too rigid and they stay blinkered in seeing pass guidelines. Guidelines are there to steer, not shackle. If oral medication is not helping, no one should have to endure years of frustration and complications when there is an instant help available.

 

[AndBreathe]

I take no issue with what you say Owen, but the counter of that is, in my personal opinion, that insulin is a life-long commitment, so personally, I would need to ensure I had covered all bases prior to accepting something that tethered me to a pharmacy.

Of course my views will be influenced by personal experience and observations, the same as everyone else's. Surely in any discussion welcoming opinion should air all sides, not just s single view? (Rhetorical)

 

[Owen]

I take no issue with what you say Owen, but the counter of that is, in my personal opinion, that insulin is a life-long commitment, so personally, I would need to ensure I had covered all bases prior to accepting something that tethered me to a pharmacy.

Of course my views will be influenced by personal experience and observations, the same as everyone else's. Surely in any discussion welcoming opinion should air all sides, not just s single view? (Rhetorical)

No insulin therapy has been advised as an interim therapy as well. It does not have to be a lifelong thing. Insulin applies less stress than some oral meds and the usage can be reduced or ceased after better control is achieved. The problem is that this view although contemporary, is not cascaded enough to be of greater benefit. Why do people have to suffer unnecessarily?

 

[Mini-Vicki]

Just as an aside, I think we should be careful when looking at BMIs I have a friend who would be considered overweight by his BMI, however he is into weight lifting, and therefore his weight is muscle, not fat!

 

[Owen]

Again the BMI is a guide that should only be just that. General appearance etc, are often not taken into account by some HCP's as they have to stick to guidelines. You cannot run healthcare like a MacDonalds franchise.