Confused, Why my diabetes team won't take me off of insulin

[KK123]

All I would say is I actually think your Dr sounds like a good one. It sounds that they have thought out their strategy and have your health at the foremost of their mind. Keep on communicating with them, I do agree it is crucial to get a proper diagnosis and even though some say, so what, as long as you're getting the right treatment, I would say the two conditions are so different that if I was type 2 I would want to know so that I could tackle it differently and (possibly) without insulin if I already had it in abundance. x

 

[xfieldok]

The more I read dieticians, the less I want to meet one. T1s inject for carbs. Sensible T2s try to avoid them. 150g would be just over a weeks worth for me.

I would carry on as you want. It will be easier if you can get a definitive diagnosis.

 

[HSSS]

On another note: I had the dietician on the phone today, she wasn't impressed with my new plant based (ex chicken and fish) diet. She says i'm being too aggressive cutting things out and I need focus on my calcium and iron intake since i cut red meat, oils and spreads, fruits high in sugar and dairy out. So guess I need to open my pallet a bit more. I am really enjoying my low carb diet but she says I need to eat carbs at least until they know my type because carbs work differently in T1s as it does in T2s. I don't miss carbs but everything is so conflicting because I'm stuck in limbo not knowing what i'm working with. My diet reflects a T2, but because of that 50/50 chance of T1 she's said I need to have more than 150g.

First question have you gone plant based thinking it’ll help diabetes or for other reasons? If it’s T2 diabetes based decision then it’ll make getting things under control harder and limit good choices, not easier. But regardless of reasoning if you have cut meat and dairy out she has a point. Its easy to miss essential minerals, vitamins and fats without careful planning!

Low carb is beneficial for type 1 and 2. Absolutely no need to eat a lot of carbs for type 1 if you don’t want to. No one needs more than 150g type 1, 2 any other type or non diabetic and she’s misguided/miseducated if she believes that. Seriously I’d ignore her advising that if low carb is your preference. If you can’t do that ask for evidence of why carbs are essential eating- she will fail because they are not!

 

[type2_2020]

First question have you gone plant based thinking it’ll help diabetes or for other reasons? If it’s T2 diabetes based decision then it’ll make getting things under control harder and limit good choices, not easier. But regardless of reasoning if you have cut meat and dairy out she has a point. Its easy to miss essential minerals, vitamins and fats without careful planning!

Low carb is beneficial for type 1 and 2. Absolutely no need to eat a lot of carbs for type 1 if you don’t want to. No one needs more than 150g type 1, 2 any other type or non diabetic and she’s misguided/miseducated if she believes that. Seriously I’d ignore her advising that if low carb is your preference. If you can’t do that ask for evidence of why carbs are essential eating- she will fail because they are not!

I decided on this diet because I still think i'm T2 although i'm in limbo on that. I thought it would be difficult but it turned out to be easy and delicious. She's sent me a list of plant based alternatives this evening so I'm going to try them out. I was also worried about cholesterol so avoided dairy but she's saying eggs aren't bad cholesterol and it's actually now thought of as saturated fat. But I will try the plant based ones first. Maybe I've gone about this too aggressively and my taste bugs have changed and actually enjoy plant based foods.

I think i will stay on low carb regardless, it's working for me and my BG levels reflect that. Tomorrow I start the metformin and 1/2 the dosage of novo insulin so will be interesting to see how my body reacts. I won't exercise so I can get a base BG level for the day to know what i'm working with.

I totally agree with you, really great advice from you.

 

[type2_2020]

I decided on this diet because I still think i'm T2 although i'm in limbo on that. I thought it would be difficult but it turned out to be easy and delicious. She's sent me a list of plant based alternatives this evening so I'm going to try them out. I was also worried about cholesterol so avoided dairy but she's saying eggs aren't bad cholesterol and it's actually now thought of as saturated fat. But I will try the plant based ones first. Maybe I've gone about this too aggressively and my taste bugs have changed and actually enjoy plant based foods.

I think i will stay on low carb regardless, it's working for me and my BG levels reflect that. Tomorrow I start the metformin and 1/2 the dosage of novo insulin so will be interesting to see how my body reacts. I won't exercise so I can get a base BG level for the day to know what i'm working with.

I totally agree with you, really great advice from you.

Oh, I use an app to monitor my food intake, it shows me all the vital nutrients and vitamins via a barcode scanner. So I get fats from things like avocados, iodine from beetroot etc... the only thing that bugs me is the carb intake, why so high.

 

[HSSS]

Ok. So unless you are a following a vegan advocate (eg Michael Geiger), possibly with vested interests, cherry picking studies there’s little that says vegan is specifically beneficial for diabetes or optimal for overall health. If you choose that lifestyle for other reasons fair enough but low carb, of any variation, is the most beneficial way of eating, science wise, at the current state of play. And that typically includes meat and dairy. Perhaps you are benefitting from ditching processed, carby and sugary foods as much if not more than the lack of meat and dairy. Food for thought even if you discard it later. Whatever path you choose make sure you get all the macro and micro nutrients you need.

Eggs and fear of them was debunked years ago. For a masters level cholesterol education head here but have plenty of time or take bite sized chunks https://www.diabetes.co.uk/forum/threads/cholesterol-and-statins.156985/. Fundamentally cholesterol is made by the body if you don’t eat it and excess carbs rather than saturated fats cause issues.

 

[milesrf]

[snip]

So i'm stuck in limbo, could be LADA or T2. I'm stressing out because I thought I was on the way to a full recovery but there's a 50/50 chance I will be injecting forever.

It could even be type 1 and type 2 and once. This combination is often called type 1.5.

 

[HSSS]

[snip]



It could even be type 1 and type 2 and once. This combination is often called type 1.5.

Type 1.5 usually means LADA. I think you mean double diabetes which is fundamentally type 1 that is also insulin resistant. You cannot have simultaneously too much and too little insulin. A type 2 may eventually not produce insulin but that doesn’t make them type 1.

 

[TypeZero.]

I was diagnosed with Diabetes on the 9th May when my BG level was checked and reached 32.8, then after I lost consciousness and blacked out in the Urgent Care Centre. I woke up in hospital 3 days later hooked up by my foot and arms to insulin and glucose and antibiotics. I woke up confused and they had my privates hooked up to a machine to collect my urine. My privates was hurting each time i wanted to discharge so after a day i had enough and requested they take it off so I can discharge normally into the mini bucket they gave me so they can still monitor my wee.

My ketones were high so I had to so I had to stay for another couple of days. They were taking bloods like every 4 hours, and guess what I hate needles. Never have like them but because the doctor told me they almost lost me, once I regained consciousness, those needles were not going to agree with me, and i initially kept saying I can't do the needles, but they persisted and made sure they took my bloods right on time every 4 hours. Along with this was the finger prick tests for ketones and BG every 2 hours like clockwork.

I was discharged from hospital on the 15th May but they didn't want me to go until I could prove to them I can inject and my phobia of needles wouldn't get in the way, I was so happy to be alive, I saw my wife and was truly thankful to the hospital staff for saving my life. When I left hospital my BG was 19 and at that time I didn't understand what the BG numbers meant. So I was told to do some research into diabetes and I read the target range was 4 - 7, so I read everything I could find online on how to lower BG levels.

For the first week I was averaging 17 and I was losing sight with blurred vision, I immediately called the Diabetes team who said to me not to worry and do not go and buy glasses that it happening because I'm still high. At this moment I thought I do not want to go blind and was very scared. I asked them why don't they give me an insulin dose that will get me in range and they explained that they cannot bring me down too soon because they are worried I will have a hypo. So I thought if they aren't going to help me, I'm going to bring it down myself.

I started exercising everyday, I changed my diet to a keto diet and I was doing 10 on the BG meter and after exercise I was like 5. I was so happy because I bought it down on my own but I still didn't feel comfortable being at 10. So I changed my diet again to a low carb diet, removed all the stresses in my life and exercise regularly.

After 3 weeks I was ranging on average between 4 and 5. I asked my team what type of diabetes I have and they said they didn't know. Now after all the bloods they took in hospital, I would have thought they would have some clue but they didn't. So they ordered another blood test. I hate needles but by this time I was accustom to injecting 2 times a day with the mix insulin. I took the test and they decided that it was best for me to go to 3 injections a day of novo and 1 at night with lantus with very low dosages because I was suppose to be doing better than expected. The test came back and showed I had no antibodies which are associated with type 1, so I thought well I must be type 2 then.

A month later, middle of June, I then asked about A1C and was told they don't have a recent one, so yet again, I have to go for more bloods, this time i just wanted it over and done with, so went felt the injection, but braved it and in 1 minute it was done. It took weeks to come back and beginning of July I was told it was 96, I was in shock because I been steady at 4-5 on the meter, she then explained that this is over 3 months and that the cells regenerate every 3 months and if I'm doing so well it will show up on the next one I did. I was annoyed because here we go again with the big needles. I know i shouldn't complain about them but having to inject every day is somewhat helping my confidence with needles. During the call she also told me that a year before my A1C was taken and showed I had diabetes at that point. So I went an entire year not knowing and they knew I was and she apologised that no one had told me.

So this week I had my regular check up in the diary for the 10th but the team / doctor decided without talking with me on what's happening now, cancelling the meeting and just called me to tell me they want to put me on metformin. But I have to continue injecting but at 3 units instead of 6 for the novo and down to 18 units on the lantus at night and I will take metformin one a day. I was hoping to stop injecting insulin as they tests showed I'm producing insulin and my levels are stable. 6 BG is a high for me and I just don't understand why I'm not off insulin. I hate injecting, i really hate the needles, and just as my luck has it, I'm injecting 4 times a day 3 in the tummy and 1 in the leg.

What I don't understand is why the doctors didn't keep the appointment and see my evidence of low BG and see my lifestyle changes like the exercise I do 5 times a week riding up a 1 mile hill and riding for 6 miles, lifting weights and running is doing me good and I think I might be on the way to reversing this. When I spoke to the diabetes team they said they decided this was best for me because they can't be sure I'm type 2. They then started tell me about highs and ordered me a ketone meter, delivered today. I don't think they believe I'm doing so well.

On another note: My uncle also has diabetes type 2 and he's always high the lowest he's been is 8.9 and he exercises quiet a lot to try and get it down, I'm never this high, even when I had my first slice of cake at an event on saturday my high was 6.5.

Does anyone understand why they aren't taking me off insulin? Or is it they are whinding me off of it with the lower dosages? Confused.

The NHS tends to use the anti-GAD antibodies test to verify T1 diagnosis, well they used this test for me anyways because 75% of T1Ds test positive for anti-GAD antibodies. However as someone mentioned earlier you may have other antibodies present in your blood. They should’ve done a C peptide test before giving you insulin, in general terms the level of C peptide is directly equal to amount of insulin in blood, my understanding is that if they do this test after giving you insulin then it would be lower than normal because your body would make less insulin since it’s already receiving some from the outside. Because of your emergency they may have not had time to do this since your situation was critical.

The general characteristics of T1Ds:
-Rapid weight loss so a lower BMI
-Usually younger (less than 30)
-Quicker speed of onset
-Initially T1Ds would have higher blood sugars

However not all people fit these. There is a honeymoon period in T1D where your blood sugars return to normal, near-normal levels after initiating insulin, if you are T1D then you may be experiencing this.

 

[type2_2020]

Started Metformin today one table a day 500mg, reduced novo insulin to 3 units from 6 units, and the results are scaring me. I've tested all day and now i'm dead on 4 all day. Feeling a bit dizzy. I think my body is producing the rest of insulin now i'm on a lower dose. Not sure if this weird feeling is a hypo, not feeling well at all. normally i'm 4.5 to 5 ish, not sure what's going on but have tingling nerves throughout my body, a bit lightheaded, headache coming on and drained, feel tired.

Not sure what's causing this, I changed my breakfast today also to eggs and bacon and not the small amount of porridge oats i normal do with a 1/4 banana to cut more carbs out.

Feeling strange

 

[xfieldok]

Have you had enough water to keep hydrated?

Keep an eye on the readings, don't get too low.

 

[type2_2020]

If you use the mysugr app you will get an estimated hba1c after a few days. It won't be accurate at first but it will show you trending. I found it invaluable when I first started. The app has a free version.

Thanks for the app. I've entered all my results since my last A1C on the 17th June. Took ages good 1hour and a half. It shows an A1C of 5.5% which is 37 so i'll be surprised if when the next one comes i can finally get off of insulin, depending if by then they figure out if i'm T1.5 or T2 but I really believe i'm T2.

 

[xfieldok]

The longer youu use it, the more accurate. I used it for a few months and at my next hba1c it was 2 points out. Hang in there, I found it highly motivating.