I’ve just had a really crappy d-week. Let’s recap:
- Was forced to pull out from diabetes camp at the very last minute due to health. Sadface number 1.
- Had numerous hypos (I mean numerous!) throughout the week. Felt like I was constantly having a hypo hangover all week. Sadface number 2. (At least I never over-corrected! Ashley – 1)
- Went out for dinner and ran out of insulin. My fault for not checking. Sadface number 3. (At least I only had a light dinner and managed to survive with what little insulin I had left. Ashley – 0.5)
- Got an email from my educator saying she doesn’t support what the private endocrinologist said and that I can’t change my diagnosis as I have no antibodies. (Fact: 10% of people with type 1 diabetes don’t have antibodies) My educator also said that they only give pumps to people with poor control and my HbA1c indicated good control. (Which part of swinging from 10 mmol/L to 4mmol/L overnight indicates good control?) Sadface number 4.
This brings me to WHY I want to go on the pump. Yes, my HbA1c may be in good range. I’m more worried about the swings I have. I have random spikes before crashing quickly. This is despite being conscientious about what I eat (low GI/carb) and exercising regularly. My main concern comes when I want to start planning a family, my sugar levels would quickly be unacceptable if I were to be pregnant. How would I deal with this then? I’m already on injections. I believe that having a constant flow of insulin would help somewhat to stabilise my levels. How can I achieve this with injections? Have an injection every hour? Don’t be absurd! Having 4 a day is painful enough (I have a pretty new bruise from choosing a bad site the other day to show for it too).
I know I’m not the only young person with type 2 who is worried about this.
After a lot of talk on doing something about getting pump consumable subsidies for people type 2, I have finally started a petition for it. If you would like to help push this along, you can sign the petition here.
I would like to think that starting this petition will be the result in something life-changing for many people with type 2 diabetes, not just me. And so I duly award myself 5 points, bringing the final tally between me vs diabetes to 6.5 to 4. And so, I proudly pronounce myself the ultimate winner this week! Take that diabetes, you will not get the better of me yet!
Bonus! I shall leave you with this hilarious tumblr site for when you diabetes gets you down – What Diabetes Should Call Me.
HangryPancreas 
Hi Ash,
Have you ever attended a DAFNE or diabetes empowerment course? Do you know what your insulin to carb ratio is? How do you count carbs – guessing, measuring, weighing, checking labels? Did you let your endo know that the diabetes educator disagreed with them??
Sorry about your frustrations – I feel for you!! Have signed your petition, but it sounded like it was only for pump consumables.
Let me know if you want to chat anytime. Best wishes, Sal x
Hey Sally,
I haven’t been able to get into any DAFNE courses as they’re only for people with type 1 diabetes of health professionals. I’ve never really quite fitted into either category. What’s a diabetes empowerment course? Do send me details on this please!
I’m not sure what my I:C is, I’ve been told how many units of insulin to give at each meal and usually stick with it as my meal portions are generally similar. I do a guesstimate or avoid anything that is different.
As for the endo, I don’t know who I’ll be seeing when I get back (joys of a public system), but I’ll discuss this with them again when I see them in Feb.
As far as subsidies go, from what I understand, I am able to get a pump as I have private health insurance. It’s just the ongoing costs that I won’t be able to afford. Much like the issue you guys are facing with the CGM at the moment.
I’m sure we’ll be chatting more soon 🙂 thanks!
Ash
Hey Ashley,
In one of your previous blogs you said that your endo pretty much said you were T1 after looking at your C-peptide results…all your endo has to do is fill out a new NDSS form stating you are type 1 and it doesnt matter what your educator says, because NDSS which just accept the form from your endo. And in terms of getting the pump, I have always been well controlled but ‘let myself go’ for about a month before my HbA1c to qualify – it wasnt the best strategy but I figured 1 month of bad BG vs the benefits of a pump for life….all your HbA1c has to be is over 7 (I was on 7.2!). There is also a whole bunch of other criteria instead of HbA1c that can get you the pump – including nighttime hypoglycamic excursions and other reasons. I never got these hence my sabotaged A1c…
If you can afford, maybe just switch to a private educator just to get the pump…my lady leaves me about $20 out of pocket each time, which isnt all that much. Then you can just switch back and they cant really take your pump off you…
I guess this all depends on what your end diagnosis is, but if your endo is willing to sign you off as T1…go for it. You can still advocate, and perhaps once reaping the benefits of the pump, it will help to advocate more for T2 pump consumables.
Sorry for the long-winded response. I work for an endo and we see a lot of previously GP misdiagnosed Patients that we are always happy to fill out new NDSS paperwork for…I just think your educator may not be up to scratch if she refuses to acknowledge that antibodies aren’t always present, such as in cases of LADA (latent autoimmune diabetes of adulthood, which like yours, can take a few years to require insulin but is still Type 1). Im also honeymooning and therefore making small amounts of my own insulin (have been for 10 months now).
Hey Ashleigh (feels like I’m replying to myself in a way! haha)
The private endo was happy to class me a T1 after taking everything into consideration and he’s sent that recommendation to the hospital I go to. So I haven’t filled out any forms yet and I guess I’m waiting to see what the endos at the hospital have to say about it. I have no clear blood work that will class me as T1. My C-peptide are low but not low enough. I’m in diagnosis limbo.
That sounds like a good idea – take a mini-d-holiday and let the A1c rise! Although at this point, I don’t think I have to try. My average BGL is sitting at about 7 for the last three months. How did you go about looking for your private educator? I’m really considering just going back to the private endo and have a private educator as well.
My GP always thought that I have type 1, which is why now she just refers it to as IDDM, cos she’s confused by the different reports that are coming in. I’m told my diabetes could take a drastic turn too at some point. But it has been fairly static the last three years. So we’ll see. I’m grateful for the insulin I’m producing but frustrated at the grey area in which I currently reside in, in the diabetes world.
Thanks so much for signing and reading! I really appreciate it!
Ash
Sounds like a rough week. I’m sorry. But I’ll co-sign on your score and say that you came out ahead altogether! 🙂
Haha cheers Scott!
just outta interest, have you got a family history of d? i was dx t2 at 16 as i didnt have antibodies, ended up on insulin as wasnt producing enough myself… however, ive got a family history of d and got tested for maturity onset diabetes of the young (mody) which came back positive….
good luck with the petition though, i would love a pump, but no chance of getting one on the nhs in uk unless t1…
Hi Tara,
I’m the same! No anti-bodies but insulin deficient. Except no one here will want to test for MODY because its too expensive. As for for family history – my mum had gestational diabetes with my two younger sisters and my grandfather on my mothers side is T2 but control by tablets. That’s all I know of. Do you have a strong family history?
That’s ridiculous Tara. I think it’s really unfair that just because people have type 1 that they are entitled for these benefits. There are a lot more younger adults out there with T2 who are starting insulin earlier. Really disappointing 😦 keep making some noise and fighting for it!
Ash
hiya,
try getting in touch with some of the places which test for mody, im not sure which ones there are where you are, but you could contact the american ones like kovler and university of chicago, ive heard that they do testing if they feel you fit criteria.
only my dad is diabetic (dx t2 on tabs) but i kicked up a fuss and insisted on being tested… good thing i did really.
i agree, its not fair at all… and i reckon it would help me as, like you, my levels jump around alot (yesterday went from 15mmols to 3mmols in an hour, then shot back up to 12mmols) but my hba1c is 6.5% so they say theres nothing wrong with my control…. grr, will ask about pumps at next clinic app as technically nothing says mody cant have pumps… just not t2’s
Tara
Hi Tara,
I’ve heard of Kovler and university of Chicago. Are you part of the MODY group on Facebook? The private endo I visited said they only do MODY testing for research purposes here in Australia as its fairly expensive and I’m not what the go is with asking Kovler or University of Chicago to test me but I’ll check it out again.
That must be the most frustrating thing! Doctors looking at you weirdly and saying but your HbA1c is fine and discount all the spikes and troughs you have! When will they realise HbA1c isn’t the only indicator for how well managed our diabetes is?!
Haha good pick up on the technicalities 😉 always play with what you’ve got! Good luck 🙂
Ash
It must be so horrible for you as if you haven’t got enough to deal with already!
My C-pep came in ‘normal’, but I found out several months later it was closer to the lower end of the range. I was in the T2 category, and I pushed for the anti body test as my health deteriorated, 6 months later I was positive for antibodies. I seem to have a faster progressing LADAcompared to the other LADA types.
Anti bodies can disappear and reappear in the early days, so you should be getting retested every few months along with the C-pep.
I dont understand your health system am afraid but I do hope you manage to get in the right diabetes category. Some will argue it’s still all diabetes. I disagree. You need the correct diagnosis for the right treatment. Good luck to you x
Thanks Yas,
I hope so too! Being in diabetes limbo is very strange. Some doctors insist it’s T1, some insist it’s MODY and some think it’s LADA. It’s been almost 4 years and doctors are still scratching their heads.
Thanks for reading and all the best for you 🙂
Ash
Oh Ash this sucks! Getting the pump involves so many obstacles omg. In the UK you have to have really good control to get one (wtf what is the point) and here you have to be horribly bad! It’s crazy. Sending you good and stable BGL vibes for the next week 🙂 x