New Member - 5 years diagnosed

[AndyL]

Hi All,

I was diagnosed in April 2017. I am not overweight and they initially told me I was type 1. Then after some tests they told that something that should be present in the results, wasn’t and therefore I wasn’t type 1, but didn’t fit the ‘profile’ of a type 2.

I went to a specialist who spent 2 years looking into it only to come back and say, ‘we don’t want to put you in a box, let’s call you an insulin treated diabetic’

So, I have no idea what I am. As I put above, I am treated with insulin and I do my best despite a challenging job where I can lose track of time and glucose tracking.

I have asked about insulin pumps and tracking sensors but I have to say my experience with the healthcare team is pretty poor, both at the hospital and my local GP. Covid has certainly not helped.

Anyway, I have done my own research and I am interested in buying (self funding) my own Technology, but every website says ‘consult your healthcare team’. I have asked, but I get nowhere and they never call me back. Should I go ahead on my own? How would you suggest I move forward from here? Anyone else had the same problems?

Thanks in advance
Andy

 

[trophywench]

From what you have said, it seems you do not live in the UK.

 

[rebrascora]

Hi Andy and welcome.

If you are talking about self funding an insulin pump, then I think it is unwise as from what I have learned from people here you need a lot of support from trained staff particularly in the early days. There is no reason why you couldn't fund a CGM (Constant Glucose Monitor) yourself and many of us did prior to getting it on prescription. Not cheap at just under £100 a month but the information it provides is a game changer. Abbott Laboratories are doing a free 2 week trial of their Freestyle Libre 2 (which is the one most of us get on prescription) for anyone who meets their criteria, which is pretty broad... I believe basically you need to be diabetic, not have used the product before and have a suitable phone to scan it.
There are other companies who produce similar products but none are doing a free trial at the moment as far as I am aware.

Do you know which tests were done to try to establish your diabetes type and what the results were. Sometimes these tests can be inconclusive, but if repeated at a later date, can sometimes become more clear, so it might be worth pushing for a GAD antibody and C-peptide test if it was a few years ago.

Can you tell us a bit about how you came to be diagnosed? Ie was it an emergency admission to hospital with DKA or symptoms sent you to your GP or a routine blood test. If symptomatic, what were your symptoms?

Which insulin(s) do they have you on and how do you find using it/them?

 

[AndyL]

Hi Andy and welcome.

If you are talking about self funding an insulin pump, then I think it is unwise as from what I have learned from people here you need a lot of support from trained staff particularly in the early days. There is no reason why you couldn't fund a CGM (Constant Glucose Monitor) yourself and many of us did prior to getting it on prescription. Not cheap at just under £100 a month but the information it provides is a game changer. Abbott Laboratories are doing a free 2 week trial of their Freestyle Libre 2 (which is the one most of us get on prescription) for anyone who meets their criteria, which is pretty broad... I believe basically you need to be diabetic, not have used the product before and have a suitable phone to scan it.
There are other companies who produce similar products but none are doing a free trial at the moment as far as I am aware.

Do you know which tests were done to try to establish your diabetes type and what the results were. Sometimes these tests can be inconclusive, but if repeated at a later date, can sometimes become more clear, so it might be worth pushing for a GAD antibody and C-peptide test if it was a few years ago.

Can you tell us a bit about how you came to be diagnosed? Ie was it an emergency admission to hospital with DKA or symptoms sent you to your GP or a routine blood test. If symptomatic, what were your symptoms?

Which insulin(s) do they have you on and how do you find using it/them?

Thanks for your reply.
I honestly can’t remember the tests they did, but there were a few. I will press them for further tests as it’s awkward not being able to answer the first question anyone asks when you say your diabetic.

For about a month in Mar/Apr 2017, I began losing weight. I was on average about 11st and I lost just over a stone without trying. I went to the doctors and I said look I don’t know what is wrong but I don’t feel right and I should t be losing this weight.

He was concerned and did all the usual tests and he could not find anything wrong with me as I was a fit 41 year old. Just before I left he said oh hang on a minute and pricked my finger. The result was 28.5. He said ‘ ah I know what the problem is, you’re diabetic’ he went on to say in 25 years he had never seen anyone with a blood sugar that high casually walk into his surgery looking as healthy. My HBA1C was 117.

So do you think I should look at the abbot CGM and that I could get that without consulting my diabetes team?

Thanks again

 

[AndyL]

From what you have said, it seems you do not live in the UK.

I do live in the UK. I am English and have lived here since birth.

 

[Bruce Stephens]

So do you think I should look at the abbot CGM and that I could get that without consulting my diabetes team?

You can ask them for a free one, sure. If you're willing to pay, you can buy them. Your GP can prescribe them, but is much more likely to if you're Type 1 or if your diabetes team says it's appropriate.

FreeStyle Libre 2 | Glucose Monitoring System - Diabetes Care

Discover the FreeStyle Libre 2 flash glucose monitoring system. Advanced and easy to use, it offers an innovative approach to diabetes management.

www.freestylelibre.co.uk

 

[Pumper_Sue]

Hi Andy and welcome to the forum.

So do you think I should look at the abbot CGM and that I could get that without consulting my diabetes team?

NICE guidelines have been made so that you can have the flash meter on prescription.
An insulin pump though is prescription only, so unless you can get a letter from a consultant or a DSN then a pump company would not sell you a pump.

I managed to get hold of a pump many years ago from the USA and self funded the consumables until I secured the funding from the NHS.
This loophole has now been closed so you wont be able to do this now.
Once I got the pump I just read the online manual and set it up myself after all a pump is just another form of delivery system 🙂

Do fight for your needs, go as far as writing a firm but polite letter to your consultant regarding a pump if you want one. Do check the NICE guidelines though to make sure you qualify for one. They are not plug and play though, pumping does involve a lot of hard work.
Also if you are not happy with your hospital/consultant care you are intitled to ask your GP for a referral elsewhere. In this instance do your homework so you don't end up jumping from frying pan into the fire.

 

[rebrascora]

The unexplained weight loss is the one symptom that should red flag Type 1 as Type 2 diabetics don't get that as a diabetes symptom.
Unfortunately the Type 1 tests, the C-peptide and GAD antibody tests are not something that a GP would normally request and the results can be difficult to interpret and the tests are sometimes not done correctly or there are other factors which confuse the results, so it can be inconclusive, especially in more mature adults as the onset of Type 1 is often slower compared to in children.
You should be able to access those historic results either online or on request if you are interested.
Here on the forum we encourage people to take control of their diabetes, ask for their numerical results and learn what those results mean because sometimes the health care professionals miss things or don't have enough knowledge of the condition to fully understand the results or miss a bit of vital information that perhaps wasn't initially documented or passed on to them. The NHS is not renowned for good communication.

I very much doubt you would get a pump without a Type 1 diagnosis, so I would push for further testing to clarify the situation.... both C-peptide (preferably blood not urine.... and this can make a significant difference but the blood test needs to be frozen rapidly and sent off to the lab in that state so it needs to be done at a hospital which has those facilities) and GAD antibody blood test.

Definitely use the Libre free trial from Abbott but push for that on prescription in the mean time..... it won't happen overnight even if a clinician says "yes". It took over 6 months for it to appear on my medication list after the consultant agreed to prescribe it and I self funded in the mean time.

You didn't mention which insulins you are currently using. I am hoping it is a basal/bolus system because that increases your chances of getting Libre on prescription and I very much doubt there is any way that you will get a pump if you are currently on a mixed insulin. You could also push to be given a DAFNE course or whatever your local equivalent is... but again you would need to be on a basal/bolus insulin regime to have a chance of that, so the insulins you are using is a very relevant bit of information.

 

[AndyL]

Hi

The unexplained weight loss is the one symptom that should red flag Type 1 as Type 2 diabetics don't get that as a diabetes symptom.
Unfortunately the Type 1 tests, the C-peptide and GAD antibody tests are not something that a GP would normally request and the results can be difficult to interpret and the tests are sometimes not done correctly or there are other factors which confuse the results, so it can be inconclusive, especially in more mature adults as the onset of Type 1 is often slower compared to in children.
You should be able to access those historic results either online or on request if you are interested.
Here on the forum we encourage people to take control of their diabetes, ask for their numerical results and learn what those results mean because sometimes the health care professionals miss things or don't have enough knowledge of the condition to fully understand the results or miss a bit of vital information that perhaps wasn't initially documented or passed on to them. The NHS is not renowned for good communication.

I very much doubt you would get a pump without a Type 1 diagnosis, so I would push for further testing to clarify the situation.... both C-peptide (preferably blood not urine.... and this can make a significant difference but the blood test needs to be frozen rapidly and sent off to the lab in that state so it needs to be done at a hospital which has those facilities) and GAD antibody blood test.

Definitely use the Libre free trial from Abbott but push for that on prescription in the mean time..... it won't happen overnight even if a clinician says "yes". It took over 6 months for it to appear on my medication list after the consultant agreed to prescribe it and I self funded in the mean time.

You didn't mention which insulins you are currently using. I am hoping it is a basal/bolus system because that increases your chances of getting Libre on prescription and I very much doubt there is any way that you will get a pump if you are currently on a mixed insulin. You could also push to be given a DAFNE course or whatever your local equivalent is... but again you would need to be on a basal/bolus insulin regime to have a chance of that, so the insulins you are using is a very relevant bit of information.

Hi Barbara, thanks for the message. I will indeed push for further testing and see if I can get hold of my old results.
I take 10 units of Abasaglar on a morning as a basal/bolus and then use Novarapid as and when I eat. It varies, but it tends to be 5/6 units 3 times per day on average.
My latest HBA1C was 68. Down from 75.
I think I am going to take the plunge and order/self fund the Abbot CGM. Hopefully this gives me the information I need to help me control things better.
Any other suggestions are welcome.

 

[trophywench]

I'm sorry, it was the way your post was worded, saying you'd accessed a consultant - the only consultants I've ever accessed, whether NHS or privately - have all needed a referral from my NHS GP. Hence I assumed it wasn't NHS.

 

[Pumper_Sue]

I think I am going to take the plunge and order/self fund the Abbot CGM. Hopefully this gives me the information I need to help me control things better.
Any other suggestions are welcome.

You are entitled to have the freestyle Libre funded by the NHS. Do not take no for an answer.

 

[everydayupsanddowns]

Hope you get clarity over your diabetes type @AndyL and that it helps you access the most appropriate treatment options.

Your Dr may have said that they don’t want to ‘put you in a box’, but rightly or wrongly, having a tick in the right box can be exactly what you need in order to access certain treatment options, technologies, education courses etc - and while I wholly support personalised and individualised care, there are times when having the right ‘label’ can be extremely helpful.

 

[SB2015]

Hi @AndyL I was diagnosed with Type 1 as adult aged 53, so in theory I am Type 1.5 LADA. My records say Type 1 which makes life a lot easier, as it gives me access to some of the tech with funding, and as @rebrascora has said the new NiCe guidelines have made the access to this more evenly available (in theory). My weight loss at diagnosis was rapid and I went into DKA so was dealt with quickly at the hospital and have been with them since.

I hope that you are able to get access to the Libre without having to self fund. It is very much a game changer as it gives you access to so much immediate information And the later versions include alarms when going high or low.

let us know how you get on.

 

[AndyL]

Hi @AndyL I was diagnosed with Type 1 as adult aged 53, so in theory I am Type 1.5 LADA. My records say Type 1 which makes life a lot easier, as it gives me access to some of the tech with funding, and as @rebrascora has said the new NiCe guidelines have made the access to this more evenly available (in theory). My weight loss at diagnosis was rapid and I went into DKA so was dealt with quickly at the hospital and have been with them since.

I hope that you are able to get access to the Libre without having to self fund. It is very much a game changer as it gives you access to so much immediate information And the later versions include alarms when going high or low.

let us know how you get on.

Thank you very much. Great reply. I will update you on my progress.

 

[AndyL]

Hope you get clarity over your diabetes type @AndyL and that it helps you access the most appropriate treatment options.

Your Dr may have said that they don’t want to ‘put you in a box’, but rightly or wrongly, having a tick in the right box can be exactly what you need in order to access certain treatment options, technologies, education courses etc - and while I wholly support personalised and individualised care, there are times when having the right ‘label’ can be extremely helpful.

I think you’re right. I have accepted this lack of clarity too easily. I am going to push on this more than anything else. Thank you.

 

[AndyL]

Quick update on this thread.

I purchased the libre 2 sensors at my own expense following this conversation. I started in June and used for 3 months and my estimated HBA1C score is now 55 where it was 75 previously.

I spoke to my consultant and told them I was not happy at my lack of formal diagnosis as. T1 and explained I’d been using the Libre 2 with good results.

He agreed that they should have been more on the ball and has formerly given me T1 diagnosis and written to my GP to add the libre 2 sensors to my prescription.

I feel I am managing much better as a result.

Thanks to all who pushed me to do this. I really appreciate it.

 

[grovesy]

Just to be aware that the Libre estimated HBA1C for some of us can be out by quite a few points to the actual blood test.

 

[rebrascora]

Delighted to hear you have made some progress both with a proper diagnosis and getting Libre on prescription and by the sound of it, that you are feeling more positive and in better control of your diabetes management.

As mentioned by @grovesy above, the Libre HbA1c estimate is often a little below the actual result, but usually just 3-5mmols in my experience so you have still seen a good improvement and that may continue as you learn more from the data it gives you.

 

[everydayupsanddowns]

Thanks for the update @AndyL

Glad you’ve been able to access Libre on prescription, and get your diagnosis / classification clarified 🙂

 

[Nige13]

Hi All,

I was diagnosed in April 2017. I am not overweight and they initially told me I was type 1. Then after some tests they told that something that should be present in the results, wasn’t and therefore I wasn’t type 1, but didn’t fit the ‘profile’ of a type 2.

I went to a specialist who spent 2 years looking into it only to come back and say, ‘we don’t want to put you in a box, let’s call you an insulin treated diabetic’

So, I have no idea what I am. As I put above, I am treated with insulin and I do my best despite a challenging job where I can lose track of time and glucose tracking.

I have asked about insulin pumps and tracking sensors but I have to say my experience with the healthcare team is pretty poor, both at the hospital and my local GP. Covid has certainly not helped.

Anyway, I have done my own research and I am interested in buying (self funding) my own Technology, but every website says ‘consult your healthcare team’. I have asked, but I get nowhere and they never call me back. Should I go ahead on my own? How would you suggest I move forward from here? Anyone else had the same problems?

Thanks in advance
Andy

My first step would be to change Dr's! 😡