A pointless rant

[satindoll]

Hi @Fenn

I was lucky with my Endo Professor Took at the RD&E, who from the off realised I was a non-producing t2, so I was given insulin from the start as I had other health issues that meant I could not take the normal route of tablet medication.
I have met many other diabetics who don't recognise my need for insulin and have had the same treatment from them that you have met with, it took long time to grow a thick skin.......... but now I don't give a fleas armpit what they think and tend to treat them with the contempt they deserve and ignore their nasty comments, its their bad not yours.
You are not to blame for what has happened, nor are you taking medication away from "more deserving" diabetics, your poor pancreas has done its best for a long time but has now run out of steam, it happens..........and they forget it may yet happen to them.
So chin up, look them in the eye and tell them to go to hell........albeit in your mind and not on the forum..........and yes I do LCHF to keep my insulin needs down as much as possible.
PS.....Wear your badge with pride and send the meanies my way, I take no prisoners.......

 

[kitedoc]

I apologise for my rant, I will be more Australian!

Sorry

Please @Fenn, be yourself. Aussies try to be tough on the outside but like a 'forbidden' chocolate eclair we tend to softies on the inside so we still have our moments!! And we have a habit of knocking or criticising people and things in good humour but never wish to have the armour of our politicians who seem to have suits of teflon - nothings sticks !!!
You are doing splendidly. That is what counts. And "if it ain't broke, don't fix it" Your insulin is working well for you, no need to doubt it!!
If you have not already, see what your doctor thinks about continuing your LCHF diet - many on insulin say they manage lchf diets, just being careful to match insulin dose to amount of carbs (and sometimes proteins) so that they do not go hypo.
You are on the right road. Enjoy the view !!!
Best Wishes

 

[Daibell]

Hi. I haven't seen any of the 'bad' posts you mention but I understand as I've been down a similar route. First from what you say I suspect you may well be a LADA and not T2 but still listed as T2 (same as me). There is a lot of mis-understanding by the medical profession (and Diabetes.org.uk) on what defines T1 and T2 and it's good to see NICE gradually changing it's views on this. T2 is where you have excess insulin often thru insulin resistance. Adding more insulin is unlikely to be helpful as you already have too much but can't use it efficiently. If you are a LADA and possibly mis-diagnosed as a T2, you will have low insulin, possibly slim and in a honeymoon period which can last week or years. Insulin will one day become essential as LADA = T1 when at the end of the honeymoon period. There are those who have argued that T1 implies only GAD antibodies and others with low insulin are T2 which I strongly disagree with. There are various causes of beta cell death apart from GAD antibodies including viruses. Don't be angry as you should probably consider yourself a LADA and have every right to insulin. Get GAD and c-peptide tests done if needed to confirm. Note that a negative GAD doesn't mean you aren't LADA but the C-peptide is a good indicator.

 

[kitedoc]

Hi @Fenn

I was lucky with my Endo Professor Took at the RD&E, who from the off realised I was a non-producing t2, so I was given insulin from the start as I had other health issues that meant I could not take the normal route of tablet medication.
I have met many other diabetics who don't recognise my need for insulin and have had the same treatment from them that you have met with, it took long time to grow a thick skin.......... but now I don't give a fleas armpit what they think and tend to treat them with the contempt they deserve and ignore their nasty comments, its their bad not yours.
You are not to blame for what has happened, nor are you taking medication away from "more deserving" diabetics, your poor pancreas has done its best for a long time but has now run out of steam, it happens..........and they forget it may yet happen to them.
So chin up, look them in the eye and tell them to go to hell........albeit in your mind and not on the forum..........and yes I do LCHF to keep my insulin needs down as much as possible.
PS.....Wear you badge with pride and send the meanies my way, I take no prisoners.......

Love your atavar - thought this might apply sometimes !!

 

[Fenn]

I am so grateful for your replies, I feel really bad about writing my rant, sorry for being grumpy, I didnt mean to sound ungrateful. You lovely people are saving my life and sanity.

Thankyou so very much!

 

[Fenn]

Hi. I haven't seen any of the 'bad' posts you mention but I understand as I've been down a similar route. First from what you say I suspect you may well be a LADA and not T2 but still listed as T2 (same as me). There is a lot of mis-understanding by the medical profession (and Diabetes.org.uk) on what defines T1 and T2 and it's good to see NICE gradually changing it's views on this. T2 is where you have excess insulin often thru insulin resistance. Adding more insulin is unlikely to be helpful as you already have too much but can't use it efficiently. If you are a LADA and possibly mis-diagnosed as a T2, you will have low insulin, possibly slim and in a honeymoon period which can last week or years. Insulin will one day become essential as LADA = T1 when at the end of the honeymoon period. There are those who have argued that T1 implies only GAD antibodies and others with low insulin are T2 which I strongly disagree with. There are various causes of beta cell death apart from GAD antibodies including viruses. Don't be angry as you should probably consider yourself a LADA and have every right to insulin. Get GAD and c-peptide tests done if needed to confirm. Note that a negative GAD doesn't mean you aren't LADA but the C-peptide is a good indicator.

Im very confused by my diabetes, I have had a GAD-test that came back with 6 (if i remember) that combined with how long I have been diagnosed, my DSN said ive been controlling things on tablets far too long to be Type 1, I was diagnosed in 2010 with a complete surprise hba1c of 126, but I did so amazingly well eating LCHF, I went extreme and got my hba1c to 36 in 1 year, I was told I would be taken off the register, but very very slowly things have gone bad, its taken a long time to get here. I am not overweight (much) could shift a stone probly at a push, I am very active, 70 hours a week working and busy at home, I have been eating low carb all that time with worsening bgs, its very frustrating, the reason I say confusing, I ate yogurt and berries for brekkie, I Went to 8 at peak with 4 units of novo, then I had 3 chicken breasts with breadcrumb for lunch from the hot counter at Morrisons 6 units because of the breadcrumb, I know this was bad but it called me through the glass and I was starving, Bg went from 5.6 to 15, then 2 hours later walked the dog for an hour, bg went to 6.0, then it went up in a vertical line back to 15, no idea what that means but dont think I could be type 1 as the insulin would have kept me down?

Wow sorry I went off on one

Thankyou

 

[therower]

@Fenn . I’m in no position to give you any form of diagnosis but I will say this.
Insulin is only a tool, it offers no guarantees.
It requires a great deal of practice and knowledge in order to use it to its full potential.
You wouldn’t knock a 6 inch nail in to a piece of wood with a toffee hammer, likewise you can’t do a dovetail with a rip saw.
In both examples you’ve used fundamentally the right tool, a hammer and a saw.
Insulin doses are very difficult for the most experienced of us.
@Daibell is very knowledgeable in the grey area you maybe finding yourself in.

 

[satindoll]

@Fenn ,
I understand your frustration and confusion, you could be LADA as Daibell suggests....... but I suspect your carb to insulin ratio is wrong, so maybe go back to your DSN and ask her advice.........not all t2's are insulin resistant and that can make getting the ratio's right a little more difficult to sort.

 

[Kailee56]

I think I stumbled upon some of those posts. They were in threads dealing with thoughts of insulin shortages.

My thoughts on those threads. You were not reading the thoughts of rational people. You were reading the reactions of people whose rational minds were being controlled by out right, primal fear for their survival. As you know, People on insulin will die without it. They won’t get a little sick, they will die. That is reality. Unfortunately, fear does not bring out the best in most people. Does that mean they are bad or selfish people? Does that mean they do not want to help you? No and No. It means just the thought of not having insulin puts them in panic mode and what you read was THEIR ranting.

Every one reacts differently to fear. Some people lash out, some run away, some just run in circles, some withdraw, some rise above it and become leaders. I wish we could all rise above it, but that is not reality. I am so sorry that you felt people were justifying their own need as more important than yours. Just keep in mind that that was their fear talking.

This is actually a fantastic and supportive group of people. We are not perfect, we are people. We actually are here for you, even if some subjects are scary.

 

[Kailee56]

Im very confused by my diabetes, I have had a GAD-test that came back with 6 (if i remember) that combined with how long I have been diagnosed, my DSN said ive been controlling things on tablets far too long to be Type 1, I was diagnosed in 2010 with a complete surprise hba1c of 126, but I did so amazingly well eating LCHF, I went extreme and got my hba1c to 36 in 1 year, I was told I would be taken off the register, but very very slowly things have gone bad, its taken a long time to get here. I am not overweight (much) could shift a stone probly at a push, I am very active, 70 hours a week working and busy at home, I have been eating low carb all that time with worsening bgs, its very frustrating, the reason I say confusing, I ate yogurt and berries for brekkie, I Went to 8 at peak with 4 units of novo, then I had 3 chicken breasts with breadcrumb for lunch from the hot counter at Morrisons 6 units because of the breadcrumb, I know this was bad but it called me through the glass and I was starving, Bg went from 5.6 to 15, then 2 hours later walked the dog for an hour, bg went to 6.0, then it went up in a vertical line back to 15, no idea what that means but dont think I could be type 1 as the insulin would have kept me down?

Wow sorry I went off on one

Thankyou

Unless the UK is different than the USA, a GAD >5 is considered positive, according to the parameters on my original lab sheet. The length of time since diagnosis should not be a factor, especially since I doubt they tested for antibodies at diagnosis. Mine was 6 and my Endo automatically changed my diagnosis from T2 to T1.5/ latent AUTOIMMUNE diabetes of adulthood. If you will get better care, education, follow up, or benefits by changing your diagnosis, I would push for it. You could be both, not unheard of, but with antibodies you have a case for changing your diagnosis to T1 or T1.5. Just a thought

 

[Daibell]

Im very confused by my diabetes, I have had a GAD-test that came back with 6 (if i remember) that combined with how long I have been diagnosed, my DSN said ive been controlling things on tablets far too long to be Type 1, I was diagnosed in 2010 with a complete surprise hba1c of 126, but I did so amazingly well eating LCHF, I went extreme and got my hba1c to 36 in 1 year, I was told I would be taken off the register, but very very slowly things have gone bad, its taken a long time to get here. I am not overweight (much) could shift a stone probly at a push, I am very active, 70 hours a week working and busy at home, I have been eating low carb all that time with worsening bgs, its very frustrating, the reason I say confusing, I ate yogurt and berries for brekkie, I Went to 8 at peak with 4 units of novo, then I had 3 chicken breasts with breadcrumb for lunch from the hot counter at Morrisons 6 units because of the breadcrumb, I know this was bad but it called me through the glass and I was starving, Bg went from 5.6 to 15, then 2 hours later walked the dog for an hour, bg went to 6.0, then it went up in a vertical line back to 15, no idea what that means but dont think I could be type 1 as the insulin would have kept me down?

Wow sorry I went off on one

Thankyou

Hi again. Your DN is largely wrong with respect to length of time when on tablets being a factor. The honeymoon period can vary greatly. For me it was around 6-7 years (yes!). I was on Metformin, full dose Gliclazide (320mg) and then Sitagliptin for several years struggling to keep BS low enough despite low-carbing. Your DN's view represents the point I made in my earlier post that late onset T1 is mis-understood and as many are classed as 'T2' (perhaps 15% or so are slim) the statistics are messed-up and the long honeymooners don't get researched.

 

[Simha]

T2 is where you have excess insulin often thru insulin resistance. Adding more insulin is unlikely to be helpful as you already have too much but can't use it efficiently.

I didn't know this, but it explains a lot.

When I was put on insulin, I rapidly started to gain weight. Fat spread at an alarming rate. I gained 20 kg in 2 years. Never had weight problems before or excess fat. Practice nurse didn't have an explanation apart from saying it was unusual to gain so much weight in such a short time.

I ended up being sent to the diabetic clinic in hospital. My NovoRapid was lowered significantly and put on Tresiba rather than Levemir. I was told that excess insulin will be stored in fat cells. By then it was too late. I had been using high doses of insulin for over a year. I am stable in weight now, but can't seem to shed the fat. Was told not to have high hopes of ever losing it. I am still coming to terms with my size.

Other health issues prevent me from exercising the way I would like it, but mobilise within my options. It's not enough.

 

[bulkbiker]

I didn't know this, but it explains a lot.

When I was put on insulin, I rapidly started to gain weight. Fat spread at an alarming rate. I gained 20 kg in 2 years. Never had weight problems before or excess fat. Practice nurse didn't have an explanation apart from saying it was unusual to gain so much weight in such a short time.

I ended up being sent to the diabetic clinic in hospital. My NovoRapid was lowered significantly and put on Tresiba rather than Levemir. I was told that excess insulin will be stored in fat cells. By then it was too late. I had been using high doses of insulin for over a year. I am stable in weight now, but can't seem to shed the fat. Was told not to have high hopes of ever losing it. I am still coming to terms with my size.

Other health issues prevent me from exercising the way I would like it, but mobilise within my options. It's not enough.

Have you thought of trying any dietary changes? May help reduce your relaince on insulin and has known to help many of us shed a few extra pounds.
Edit to add try reading or watching some Dr Janson Fung videos or/and reading up on the Virta health therapies (without joining up there)

 

[Simha]

Have you thought of trying any dietary changes? May help reduce your relaince on insulin and has known to help many of us shed a few extra pounds.
Edit to add try reading or watching some Dr Janson Fung videos or/and reading up on the Virta health therapies (without joining up there)

I went to a dietician. Made changes to my diet. Never been a fan of sugary drinks or junk food, but also not a fan of nuts, which doesn't seem to help. I eat small portions and my diet is adapted to having IBS. I'm not a believer in the low-carb lifestyle. Will read up on the Virta...as always open to new options. Thank you.

 

[bulkbiker]

I'm not a believer in the low-carb lifestyle.

That's a shame.. Virta is a ketogenic way of eating so .... and Low Carb has helped so many in your position.

 

[SkinnyAussie2]

I am so grateful for your replies, I feel really bad about writing my rant, sorry for being grumpy, I didnt mean to sound ungrateful. You lovely people are saving my life and sanity.

Thankyou so very much!

Thanks for your post @Fenn. I have learned a lot from it. I’m probably heading the same way. Long term skinny type 2 with rising BGLs.

 

[JAT1]

Ranting about prejudice of any kind is worthwhile. Increases vigilance. And about any kind of insulin shortage . . . could be cost related.

 

[JoKalsbeek]

I am becoming increasingly upset by peoples attitude towards my need? to take insulin, I have just read a thread about us type 2’s using up other types insulin, does anyone think this is fun? Does another type deserve treatment above me? Did I ask for this? You think I havent spent years eating low carb, running marathons? Should I accept ridiculously high blood glucose so as to not use up medicines for the more deserving?

I never asked for this, my DSN (after trying everything thing else) has said I am not producing enough insulin and my pancreas needs help, so here I am. I haven't been eating too much or being lazy, I havent brought this on myself, I was eating lchf and keto years before many people had ever been diagnosed, I have a big pile of the t-shirts, one of them says “you dont really need this, just stop eating bread” I am in ketosis every day.

Perhaps I am being paranoid, I dont know, just feeling sorry for myself? I hope so! But not my way usually.

I dont care what uneducated people think about me but people on diabetes forums surely should know better? I am desperate for help and advice from time to time as im new to this insulin gig but I am feeling alienated by the comments here

Its not everyone of course, I may be getting this very wrong but I dont think I should be made to feel so bad by comments on a “support” forum?

I felt positive about this new way to finally gain some control I was so desperate for, now I just feel like a failure and a waste of insulin, because of what I have read here.

So please please please spare a thought for peoples feelings, especially the less mouthy than me people that come here and read without wanting to post, I (we) have been trying very hard just like you but due to some genetic mess we have been given, we have no choice, I would very much like to be able to control this with diet too.

I dont even think people realise they do it

Sorry for being so needy im sure I deserve everything I get.

Don't apologise for the way you feel. To me, it's pretty simple: if you need insulin to stay alive and/or have good quality of life/health, you should be able to get it. It's a bit of a no-brainer, surely? (Does this have something to do with Brexit or something?)

 

[AloeSvea]

Just thought I would jump in and contribute the findings of the Lund Uni endo folks in Sweden - remember when they came up with new definitions of types of diabetes earlier this year?

https://www.theguardian.com/society...abetes-not-just-type-1-and-type-2-study-shows

https://www.thelancet.com/journals/landia/article/PIIS2213-8587(18)30051-2/fulltext

I think them wonderful, and use their one for me myself (Severe Insulin Resistant Diabetes, or SIRD).

The key to their definitions is they say they are genetically distinct. A very important point.

And - of course - different conditions with a different cause/etiology require different treatments.

And, they have also found a couple of the 'complications' to be hugely associated with the different types. For mine, for instance, it is kidney disease.

According to this labeling system @Fenn, you have SIDD, if I have understood your health situation correctly. I think it makes a lot of sense to talk about our types of diabetes this way, rather than the plain old 'type 1' or 'type 2', or at least - to further define it. I force my two main medical professionals to use the term that applies to me, as I think it keeps them more 'in line' with me on where I am going with my own choices in forms of treatment. I have found it exceedingly practical for that purpose alone, let alone keeps my own understanding of my poor old body to the forefront of my poor old brain. (I am deeply respectful for how good a really good definition or label can be in the scheme of things.)

The two insulin deficient diabetes labels are:

(they say)

SIDD Severe Insulin Deficient Diabetes (insulin resistance has culminated to a worn-out pancreas and severe beta cell dysfunction) - 17% of those with diabetes have SIDD

SAID Severe Auto-Immune Diabetes, includes LADA - 6% of those with diabetes have SAID (figure closer to 6.5%, actually 6.4%)

The other two definitions not already mentioned above are MOD and MARD which form about 60% of those with diabetes.

I hope this may be of some help in this discussion?

 

[JohnEGreen]

Sorry for being so needy im sure I deserve everything I get.

If you mean the insulin then yes if you mean the insulting attitudes then no you don't.