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What if I'm not a Type 1 Diabetic???

S

slayer

Well-Known Member
Messages
132
Type of diabetes
Type 1
Treatment type
Insulin
Guys, this question has been troubling me all week. Let me give you some context: I was diagnosed with Type 1 Diabetes at the age of 12. My diabetes was caused by a steroid I was given by the children's hospital - Ive always felt my parents should have sued.

I am now in my late 30s and have been on an insulin pump. I made the decision to come off it last week as I am gaining too much weight. I have been taking apidra as my bolus insulin and have gone low carb so my sugars have been okay. However, my basal insulin is Lantus and I used to take 22 units of it a day. I have now been taking 7 units in the evening and my blood sugars are dropping at night! I also take two glucophage mainly for PCOS.

Now my concern is I have heard it is dangerous to stop basal insulin but if I am dropping what choice do I have? Also, what if they got it wrong in 1996 and I am actually a Type 2 diabetic as I feel my pancreas is making insulin and my aunt injected herself for 17 years and then the doctors said oh sorry, we made a mistake, you are actually Type 2.

Please give me some advice as my healthcare provider is useless and I am self medicating.
 
I'm not the person to ask, but if you want verification maybe you can get blood tests done privately? Some people on here do and it would be better if they chimed in along with other type 1's. I'd imagine your drop in insulin use is largely due to going low carb.
 

Ouch, what can i say about using Lantus.. It's a little bit unstable at night, (for me around 2to3am & 5to6am injecting twix 10/11pm the night before.) & in the afternoon 12 hours later from the first run of lows with the hypofest during the night. (When it happens, with me..) did I think the experts got it wrong & may not be diabetic? Wishful thinking..
Pushing for a change of basal with a less Iratic profile may help you. (I'm changing to Tresiba soon.)

I don't know "glucophage." But it It increases insulin sensitivity? From a Google.

Hmmmm. Hypos. Could they be happening after 4 hours of injecting for a meal? Could be offset insulin timing with the bolus. & type of carbs consumed?

Hey! I'm no doctor. But i do have experience with lantus & Novorapid..
 

I did previously ask my consultant if I could change my background insulin to something else but he said Lantus is the best choice as I was planning to become pregnant. I am not overly impressed with Lantus to be honest...

I believe glucophage is a slower releasing version of metaformin.
 
glucophage.? From what read. Possibly.? They do prescribe met for PCOS. So I hear.... (I'm the guy on the left hand side of my profile pic, by the way.)

I recently got the green light for Tresiba. (As a basal.) can't comment yet. But the feed back elsewhere is reasonable..
Lol, even my GP agrees lantus is dated... Hence my referral.. & a thumbs up from a DSN for Tresiba.. I also self fund a Freesyle Libre sensor which has helped my case.. Angling to get the Libre on the prescription too?

Slayer, you're not a fan of the band by any chance are you?
 
Hello, I would hold onto your horses before saying you don’t have type 1. I know from a few others like @Jaylee are or had problems with lantus hypos. You are on medication for PCOS and I know insulin sensitivity changes throughout our days and lives, maybe it’s time for basal testing or pester your consultant to try other basal insulins. Also possibly another review with your team to look at carbs and carb counting to play around with different ratios. I moved from levemir to Tresiba due to hypos and it has helped. Tresiba served me well.

If anything, you can get private blood tests for GAD and cpeptide to double check your type, it’s not 100% conclusive though.
 
MeiChanski said:
If anything, you can get private blood tests for GAD and cpeptide to double check your type, it’s not 100% conclusive though.
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I don't think that GAD tests would show up antibodies after more than 20 years of T1? But c-peptide should be conclusive, as it'll be 0 after 20 years of T1.... In your position I'd get the c-peptide test as soon as possible.
 
EllieM said:
I don't think that GAD tests would show up antibodies after more than 20 years of T1? But c-peptide should be conclusive, as it'll be 0 after 20 years of T1.... In your position I'd get the c-peptide test as soon as possible.
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My dsn said a similar thing about if I were to get tests done. Apparently it’ll be pointless because my symptoms were pretty dead on.
 
I don't know enough about the biological changes to be able to advise much. It sounds like you're suddenly becoming a lot less insulin resistant, and there are T1s who go through phases of taking barely any basal at all. I think needing 22units of basal originally would mean that you were diagnosed correctly.
After a little google on glucophage, it's basically another name for metformin, which is another medication that Type 2 diabetics and some T1s take. Could be the reason your readings are dropping.
I used to be on Lantus up to being about 21 (24 now, diabetic since 1999). I switched over to Tresiba, as Lantus only lasts up to 22 hours in the body whereas Tresiba is up to 42hours. It's so much more stable. But if you are happy with Lantus, don't listen to this ha!
LADA (or Type 1.5) is diabetes which shares some characteristics between T1 and T2. Might be worth a bit of research into it?
So my advice would be - go get some tests (privately if you can)! Ask about LADA. Reduce your basal in the meantime to avoid them hypos.
Good luck (and definitely sue for the bad steroids!)
 
Hope you tell us what happens if you do get the C peptide checked. If the metformin is helping you by slowing your liver's production of glucose then that is all good news and particularly with regards to pregnancy.
It is possible to have 'double diabetes' (an insulin resistant type 1) and it would seem that going low carb and taking metformin is working for you regardless of your final 'type'.
Keeping low insulin levels at the same time as low glucose levels is every diabetic's 'holy grail'!
 
Depending on many many variables, if you are low carbing and now getting the balance of fuel from fat, either dietary or already stored, your basal insulin needs could be expected to tumble by virtue of the fact that your liver will be much less inclined to keep drip feeding manufactured glucose into the bloodstream. Even more likely if your protein intake has not changed. This might be verifiable by measuring low-level blood ketones.
 
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Thanks everybody! Reading all of your comments has been really interesting. In my mind, I am not a diabetic and I have always felt that way!

Do you think I have a case if I was to sue the hospital for their negligence considering I was only a child at the time?

I was diagnosed in 1996 and chances are they did no checks at that time to see whether there was a possibility of me being Type 2. I see a reflexologist and she asked me, do you know your pancreas is working and still producing insulin?' How amazing is that after being diabetic for 24 years of my life?!

I genuinely believe every person out there should be offered the tests to see what type they are...

Also, I have only lost half a stone and am shocked that I can go from 22 units of Lantus to not being able to cope with 6 or 7 units! It makes me question everything.

Also wondering if any pregnant women have been on Tresiba or a different background insulin.
 
slayer said:
I see a reflexologist and she asked me, do you know your pancreas is working and still producing insulin?' .
Click to expand...

She must be some reflexologist if she knows your pancreas is working and producing insulin!

Couple of questions for you.....How long was you on the pump? Have you changed your diet since taking your 22 units of Lantus
 
slayer said:
Also wondering if any pregnant women have been on Tresiba or a different background insulin.
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I'd also be interested to hear about this, i'm hoping for my first within the next 2 years, currently on Tresiba but if there is a better basal for pregnant women, i'm all ears!
 
porl69 said:
She must be some reflexologist if she knows your pancreas is working and producing insulin!

Couple of questions for you.....How long was you on the pump? Have you changed your diet since taking your 22 units of Lantus
Click to expand...
Not sure about that, but there is some kind of link between reflexology and the pancreas. Have a google, it's mad!
 
Shannon27 said:
Not sure about that, but there is some kind of link between reflexology and the pancreas. Have a google, it's mad!
Click to expand...

Hmmm, then would it not be more cost effective for the NHS to cut the test we get for diabetes and just send us to a reflexologist instead?
 
I can understand why reflexologists are viewed sceptically but she has changed my life!
 
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