Is it too early to ask for a CGM?

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JamietDE6

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Evening all
I have my first clinic appointment tomorrow- hoping to receive an actual diagnosis. I have been treating T1D for the past month since emergency day case admission. My levels range from 5.2 to 20. My regime under nurse advice has been changed 3 times so far. I use a combination of Lantus and Novarapid. I also have Semglee as my GP took issue prescribing the more expensive Lantus. Just an observation but I have not seen any Diabetes consultant / doctor so far other than my GP - should I expect to?
I have a list of questions for tomorrow as long as both my arms….. one of them is can I please have a CGM (preferably Dexcom One), as I am already sick of stabbing myself. Yes I know I should be thankful after talking to a veteran that had to boil syringes.
I would like the Dexcom as the forum is rife with Libre problems.
My question to the hive mind is do you think I would get one one only a month in and have you got any tips on how to achieve this.
Many thanks for any help
 
hi. If you are type 1 under new nice guidance you should be prescribed a cgm, so ask them. Bear in mind that as with everything you are more likely to hear about problems that success. Some people get on just fine with libre, for some dex suits them better. Hope you get some better guidance from the clinic soon.
 
As you are Type 1 and especially as you are newly diagnosed you should be under a diabetes specialist nurse based at the hospital. GPs often don’t see many Type 1s and won’t know the right things.

Libre 2 should be approved but Dexcom One, although it is the same cost may be more of a struggle to get on prescription.It can be a bit of an overload of data at first though
 
Lily123 said:
As you are Type 1 and especially as you are newly diagnosed you should be under a diabetes specialist nurse based at the hospital. GPs often don’t see many Type 1s and won’t know the right things.

Libre 2 should be approved but Dexcom One, although it is the same cost may be more of a struggle to get on prescription.It can be a bit of an overload of data at first though
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I got a cgm the day the diagnosis was confirmed ( i hit it lucky as they squeezed me into a libre training session the same afternoon).
So it seems reasonable to put a cgm on your list of question, and a cgm makes things so much easier
 
This forum is great. Thank you guys I feel a lot more optimistic. Was also going to ask about DAFNE whilst there so should hopefully end up with a bit more confidence about managing this condition in the near future.
 
JamietDE6 said:
I would like the Dexcom as the forum is rife with Libre problems.
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I find Libre works fine. I think we may see more reports of problems just because Libre is so much more commonly used, and because Dexcom are better at replacing things quickly (which is important, of course).

(There are two other CGMs which can be prescribed by GPs and so ought to be easily available. GlucoMen Day and GlucoRx AiDEX. I'm sure some people find those work well for them.)
 
I wonder if they may be waiting for confirmation of your diabetes Type before they prescribe Libre or other CGM. Do you know if they have sent off tests for C-peptide and GAD antibodies (Type 1 testing). GAD antibody tests can take 6-8 weeks for the results to come back and since it sounds like you don't yet have a formal diagnosis, even though you are on insulin, it is still possible you might be Type 2, in which case you may find it harder to access CGM.
So I think the first question would need to be are you Type 1 or Type 2 .... or some other Type .... and what tests have been done to determine that?
If you are Type 1 then you are entitled to be offered a CGM, but using/needing insulin doesn't make you Type 1, so it is important to enquire about those tests, especially if they say you are Type 2.

In the meantime, you can apply to Abbott and get a free 14 day trial of Libre if you haven't already done so.
 
Thanks for that Barbara. I have had two GAD antibody tests the first was put in the wrong test tube so rejected. This was only discovered by me when prompting. Before the diabetes clinic did a second test ( which I am waiting on), I enquired about a private GAD test at the Nuffield. £85 and reported in 7 working days was the quote I received in writing which was interesting. Thanks for the free trial tip much appreciated.
 
I found the Libre 2 excellent. No-one bothers to post if everything’s fine, it’s only problems that get mentioned here. I would recommend it 🙂 It won’t completely replace fingerpricking though - no CGM will. For fingerpricking, have a good pricker helps enormously. I like the AccuCheck one - painless, quick and easy and attached to the side of my meter.
 
Like @Inka I had little problem with Libre. I trialled the Second G6. I found it less accurate and the app was very basic. I think it is down to the individual and would definitely not disregard the Libre - there is a silent majority of Libre users who are very happy.
I only moved away from Libre because I had the option of a CGM that talks to my pump.
 
JamietDE6 said:
Thanks for that Barbara. I have had two GAD antibody tests the first was put in the wrong test tube so rejected. This was only discovered by me when prompting. Before the diabetes clinic did a second test ( which I am waiting on), I enquired about a private GAD test at the Nuffield. £85 and reported in 7 working days was the quote I received in writing which was interesting. Thanks for the free trial tip much appreciated.
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When my doctor carried out my antibody test I remember having to wait while they ordered the special tubes. They said it not something that would normally be used in their practise. Just checked over my records and my test was done on 18th November and results 2nd December. Obviously could be different for everybody. With the dexcom, I do know a type 1 lady who has one… she was actually allergic to the glue on a libre so got the dexcom on prescription but it’s not something you hear about often. I’ve used both (free trial with dexcom) I did prefer it if I’m honest, it was way more accurate for me. However im grateful for my libre and I’m used to it’s quirks now
 
I also find Libre really good for me and my body but I use the reader with it and my feeling is that most of the problems with Libre are due to software issues with the phone app or phone updates and the reader is not impacted by those.
 
I've been waiting over a year for daphne - hopefully won't be so long for you. But don't put off trying stuff out etc til you have been on daphne.
Its a shame really cos now i have worked out my own way, which may not be the best wsy
 
I did DAFNE about 8 months after diagnosis. It was really worthwhile and it improved my confidence enormously, but I have since adapted my management techniques away from DAFNE to reflect my needs on a low carb diet and the quirks of my bolus insulin, Fiasp. I still have the DAFNE framework to go back to if I need to and sick day rules etc but for me it was more about gaining confidence in adjusting my basal doses and then picking and choosing what worked for me and what didn't and then breaking the rules o_O to find what does work for me and my life and diet and insulin regime.
 
Hi @JamietDE6

I found the DAFNE course was brilliant, enabling me to get my head round making adjustments to my insulin doses. When I did it we had to wait a year before they registered us for this.

I was amazed at the info the the Libre showed me, and pleased that this is now more readily available on prescription. As @helli said, people tend not to ask questions when things are going well with their tech. I used it for quite a few years, initially self funding before getting on prescription. It is well worth asking about this once you have confirmation of your diagnosis.

Sorry that the first GAD antibody test got rejected, and then things fell between the gaps. I think we have all had moments when we realise that we each need to keep on top of our own care. You should get annual tests for your eyes, (this is different from an optician test and is one that looks at the back of your eyes) so it would be worth checking that you have been registered for this, which should then come through automatic (although I still put it in the diary to follow up if it doesn’t come through)

Keep in touch and let us know what progress you make.
 
Hi Everyone
massive thanks for the replies and encouragement. By way of an update I had my first clinic appointment yesterday with the diabetes nurse. Pleased to say Dexcom is possible once the GAD comes back and they have an MDT to decide all factors and whether that results in T1 diagnosis. They did say I am managing well so far which was good to hear. I am still finding it really confusing when and how much in terms of corrective bolus dose. This is partly why I was keen on doing the DAFNE course, however, that was ruled out until I am at least a year down the line after proper diagnosis. I suppose I may sound a bit impatient but I do feel a bit like being in Limbo till I know how things may pan out. This thing has already radically altered my life and doing anything spontaneous is not an my agenda at the minute
 
There is an on-line BERTIE course which you can self register for which some people have found useful in the interim.
 
Leadinglights said:
There is an on-line BERTIE course which you can self register for which some people have found useful in the interim.
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Which is https://www.bertieonline.org.uk/Login.asp
There's also https://www.mytype1diabetes.nhs.uk/

These and other useful links can be found here:

forum.diabetes.org.uk

Useful links for people new to diabetes

These links provide useful information, particularly to those newly-diagnosed. You can also browse the Recommended Books and Links sections for further information :) Contents: Type 1 Section Insulin Pumps Section Type 2 Section General Help and Information Section Complications and screening...
forum.diabetes.org.uk forum.diabetes.org.uk
 
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