No support at breaking point now.

[Key_master_]

Good morning all, I hope you are well. I’m still fighting but close to giving up now.

I posted about this problem sometime ago, another month and a half on and still no support from both my diabetic specialist nurse and now even the consultant who actually laughed at me when I told him the amount of carbs I consume a day. I’ve been following dr Bernstein’s diabetic solution since the end of June. Self funded a libre for 2 and 1/2 months and got a really good handle on it. Reduced my ac1a down from 8.4% to 5.3 and was congratulated by my dsn. After 2 months I realised my novorapid was running short and not covering the protein digestion in my my meals and causing my sugars to rise over 10 frequently. The start of August I contacted my gp with my concerns and explained I needed a regular insulin. He then referred me to my dsn which took 2 months for me to sit down with her. She didn’t even know what regular insulin was yet she has been a diabetes nurse and educator for at least 30 years. A month on and I haven’t heard anything back from her, my sugars got worse from a constant state of worrying. The end of August my dad lost his fight with diabetes at the age of 60. I was waking up in the high 19’s quite a lot of the time, my eyes started to hurt upon waking so I made an urgent appointment with my gp. Last week I finally sat down with a diabetic consultant, only 3 months later. He said he would give me the actrapid I needed but needed to speak with the other consultants first. A week later after being promised I would have a prescription or at least a reply still nothing. I complained about my diabetic nurse and lack of care and responses. To that I received a little bit of a reply from pals at our local hospital. Saying there was no urgency in changing my insulin at this time although it’s not working correctly anymore and I’m now having to stack doses to deal with my low carb/protein meals.

Can you please point me in the direction of a consultant I can see who is supporting you guys on your low carb approach.

Thanks all

 

[Deleted Account]

What is your current insulin regime?

You mention NovoRapid and then explain how you are waking with a high BG. It is normal for an overnight BG to be managed with a basal insulin such as Lantus. If you are waking at 19, it suggests to me you do not have enough basal.

Can you elaborate why you tink your NovoRapid is not working with the protein?

I am just trying to think slightly tangentially to understand if you can use the tools you already have by some re-configuration.

 

[Pipp]

@Key_master_ , I do not have the knowledge to be able to offer advice here, so will tag the moderators @ himtoo, @Juicyj, @Jaylee, @tim2000s , @urbanracer, who may have better chance of helping.
Thanks also to @helensaramay . There may be other members with Type 1, too who can assist, but it would in the first instance be advisable to contact the consultant's secretary regarding the missing prescription, explaining the urgency. If necessary take it back to the hospital PALS .


Edit by Pipp to correct tag to tim2000s

 

[Key_master_]

Hi @helensaramay 8 units of lantus before bed and calculated doses of novorapid to match Carbs and protein in meals.

I follow the 6-12-12 at meal times for my carbs.

The lantus is tuned and is doing its job. higher doses and I go low during the day atleast twice. due to the upset I’m going thru at the moment and the novorapid running short of digesting the protein and fat from my meals I put this down to the high blood sugars during the night. my life has been turned on it’s head since the end of August when my dad passed. I was his full time carer for the last 5 years, his workaid and best mate and have been with him everyday since his accident early 2012. He passed suddenly and very unexpectedly and it has devastated me, with the lack of support from my diabetes team and the knowing and worrying that my novorapid isn’t doing it’s job anymore is making me very poorly.

The novorapid is running out quicker than the protein in my meals. It has a 4 hour profile and peaks at around the 2.5 mark and dies off, I can only assume from closely monitoring the last 3 months that this is the case, hence requesting regular insulin that has a longer profile.

 

[Key_master_]

@Key_master_ , I do not have the knowledge to be able to offer advice here, so will tag the moderators @ himtoo, @Juicyj, @Jaylee, @tim200s, @urbanracer, who may have better chance of helping.
Thanks also to @helensaramay . There may be other members with Type 1, too who can assist, but it would in the first instance be advisable to contact the consultant's secretary regarding the missing prescription, explaining the urgency. If necessary take it back to the hospital PALS .

Thanks pip, I have already left a message with the secretary this morning before I posted as it’s been a week now and nothing. The lack of knowledge from both my nurse and consultant was shocking when I questioned certain things. when I mentioned low carb I may as well of spat in their faces, he just suggested a pump to deal with the protein out running the novorapid, I said that’s not for me thank you.

 

[Juicyj]

Hello @Key_master_ Apart from your type 1 it sounds like you've had a whole lot more to deal with this year, so sorry to hear about your dad, that sounds like a terrible shock.

Your situation can be resolved, so have some faith. Sadly if you choose a low carb diet then the health service isn't generally well equipped to handle this, consultants who acknowledge this is the choice of some type 1's are few and far between, mine is fine with my choice. However don't feel that you have to find one to acknowledge it, it's finding your own path that's more important.

Eating fat with protein is delaying the absorption of glucose, unfortunately fine tuning this is a trial and error process, I can use my pump to deal with a delayed absorption by doing a split bolus over a specified time frame which helps manage this, which can be replicated with a split bolus injection. Any reasons why you're not interested in a pump in particular ?

 

[NoKindOfSusie]

@Key_master_ that sounds like an awful situation unfortunately I can't offer much more than moral support. This is the sort of story that really scares the hell out of me Are there any medical people who actually give a **** about diabetes, anywhere on this planet?

 

[novorapidboi26]

To sort out your basal problem......[going low if you increase anymore overnight]....you should split the dose, as your overnight needs are obviously different from your daytime needs......

how much of an effect have you recorded from the digestion of protein.....?....how did you determine when the novo had ran out...? did you do a basal test during these periods also...?

 

[Pipp]

Thanks to those of you stepping in to help. I think I ought to have mentioned 'other T1s are knowledgeable, and may be able to help', just wasn't sure who else to tag.

 

[Pipp]

@Key_master_
I am sorry for your loss of your Dad. It is so hard when you have been caring for a loved one, who as you say is your best mate.
I hope you can soon remember him with more smiles than sadness, and that you get the right sort of support for your own diabetes management.

 

[Deleted Account]

Apologies @Key_master_ , work went and got in the way of my response.

As others have said, you have certainly had a tough time of it this year which I am very sorry to read about.

I agree with @novorapidboi26 that it would be useful to do a basal test to check your basal is still correct. I know from experience it is possible for our basal needs to drift and need adjustment. For example, it may be possible to split your basal dose.
This may be the cause of your raised BG which you are currently attributing to your NovoRapid running out ... it may not but it is relatively simple to confirm.

If, after the basal testing, you have confirmed your Novorapid is running out, it is possible to split your NovoRapid doses with injections. This is something I always did when I ate something fatty like a pizza.

You mention that you have fixed NovoRapid doses. If you are eating the same every day, this is fine. However, if your meals vary, it is very common to carb count and adjust doses accordingly. This may be something else worth while investigating.

In a perfect world, we would have full on support from the healthcare team for our diabetes. Unfortunately, we often have to work it out for ourselves. I guess as we live with it day to day, maybe it should not be a surprise as we know our body better than anyone else. We may not be able to change our prescription but we can change how much insulin we take and when we take it.

 

[Jaylee]

Hi @Key_master_ ,

My condolences regarding the passing of your dad.

I'm sorry you're feeling disenfranchised from your HCPs too..

How long have you been diagnosed?

I would agree with the suggestions of basal testing. Basal needs can change from time to time. Starting from the ground up & reviewing your personal basal needs is a great start, before factoring in any other variables that cause managment to unintentionally slip...?
https://mysugr.com/basal-rate-testing/

With regards to the working profile of your Novorapid & bolusing for protein. Have you tried timing the dose after the meal?
Some have successfully achieved this with respect of certain foods & the slower digestion process they sometimes command..
Of course it's all trial & error. But with constant blood monitoring you may this helps?

Wishing you all the best!

J>

 

[Key_master_]

Hello @Key_master_ Apart from your type 1 it sounds like you've had a whole lot more to deal with this year, so sorry to hear about your dad, that sounds like a terrible shock.

Your situation can be resolved, so have some faith. Sadly if you choose a low carb diet then the health service isn't generally well equipped to handle this, consultants who acknowledge this is the choice of some type 1's are few and far between, mine is fine with my choice. However don't feel that you have to find one to acknowledge it, it's finding your own path that's more important.

Eating fat with protein is delaying the absorption of glucose, unfortunately fine tuning this is a trial and error process, I can use my pump to deal with a delayed absorption by doing a split bolus over a specified time frame which helps manage this, which can be replicated with a split bolus injection. Any reasons why you're not interested in a pump in particular ?

Hi @Juicyj its the fact and the hassle of splitting my bolus, I’ve been doing this since August and if the timing is off then it’s undoing all the good work the low carb diets does for us. in the evening it’s getting close to bed and at 8 to 830 adding more insulin is not a position I want to be in i go to sleep, sitting there with around 5 is fine then but with insulin on board still it’s risky, so depending on injection site and amount could still be active. With actrapid it should just be one injection 45 minutes prior to my meal. I don’t want to use a pump, I’ve heard dr Bernstein view on them and that is good enough for me. I won’t go into it too much, put scar tissue is one of the issues and having something like connected all the time isn’t for me. I’m old Skool and would rather do my 4/5 injections. ATM it’s around 8 with splitting.

My dads passing has had a major impact, I was very active before, 15000 + steps a day easily, 2 x 2.5 mike bike a day to get to his. Plus pushing him around the hospital where he worked 3 times a week. The sadness and upset also mixed with the stress of being without my dad and loosing my job and income at the same time has made my blood sugars go crazy at times. The frustration knowing that I need a longer profile on my insulin is another factor.

Thanks for your advice and kind words.

 

[Juicyj]

Hi @Key_master_ I am going to try and hopefully make things a bit easier by suggesting you try tresiba as a background instead its profile lasts approx 36 hours and it’s one injection a day but it’s a flat profile and good at holding you steady. My personal thoughts are that your experiencing a lot of stress which would impact on your control and with the reduced exercise too it’s making your control much harder.

A pump is a personal decision and everyone has an opinion about them so it’s really up to you, I cope better with one but that’s only because it’s reduced my anxiety with injecting many times during the day and you do forget your wearing it most of the time.

I will say that if you can get back into exercise it will help you cope better mentally through this difficult time and definitely talk it through with people as that will also help you cope.

 

[Key_master_]

To sort out your basal problem......[going low if you increase anymore overnight]....you should split the dose, as your overnight needs are obviously different from your daytime needs......

how much of an effect have you recorded from the digestion of protein.....?....how did you determine when the novo had ran out...? did you do a basal test during these periods also...?

Hi @novorapidboi26 i’ve got my balas tuned to 8 now from testing and the obvious pattern of lows during certain times of the day. Until I had a cgm on the night time was quite a mystery, obviously I wake for a bad night time hypo luckily, with what I was eating before going low carb I’m not surprised that the shot of lantus at night wasn’t causing any night time lows, it was during the day I had the obvious pattern but only when lunch was later than usual or mid morning if breakfast was very small.

As for the novorapid and protein, From very vigorous testing the last 3 months I can assume 2 1/2 hours before the rapid is spent as blood sugars will be in the 8’s and increase into double figures within the next few hours without another bolus shot. I’m 56kg 5.8.. pretty athletic, now just lean muscle after 3 months of low carbs.

 

[Key_master_]

Hi @Key_master_ ,

My condolences regarding the passing of your dad.

I'm sorry you're feeling disenfranchised from your HCPs too..

How long have you been diagnosed?

I would agree with the suggestions of basal testing. Basal needs can change from time to time. Starting from the ground up & reviewing your personal basal needs is a great start, before factoring in any other variables that cause managment to unintentionally slip...?
https://mysugr.com/basal-rate-testing/

With regards to the working profile of your Novorapid & bolusing for protein. Have you tried timing the dose after the meal?
Some have successfully achieved this with respect of certain foods & the slower digestion process they sometimes command..
Of course it's all trial & error. But with constant blood monitoring you may this helps?

Wishing you all the best!

J>

Thanks @Jaylee, I have been diagnosed for 17 years now, started on 2 injections of mixtard morning and tea time, was only 17 then so you can imagine the challenge that caused, the information was very scarce too, we live in a small county town and everything here seems to be almost light years behind. I’ve had both my dsn and consultant baffled with the stuff i learnt from dr Bernsteins book and it’s mostly common sense and basic diabetes care, obviously we as diabetics will learn all we can to aid us in the daily slog but their level of knowledge was shocking to the point I don’t want them looking after me anymore. Pushing potatoes, rice and bread that have no real nutritional content if any and laughing in my face because I was following low carb and consuming less than 30g a day. Some of the information I was repeating to them has been around for years still no clue, most was logical too. I’ve read dr Bernstein’s book three times and watched all his diabetic university videos, quite a few teleceminars now also. Read a lot of articles and science papers on our condition so have a good background knowledge. I just want to try an insulin with a longer profile and lesser peak.

I will go back to the drawing board with my basal testing now things have changed but the problem is the protein continuing to be digested longer after my bodies used up the novorapid. My food is always weighed out and I prepare meals if I’m going to be out before hand. Become a dab hand since low carbin..

 

[Key_master_]

Hi @Key_master_ I am going to try and hopefully make things a bit easier by suggesting you try tresiba as a background instead its profile lasts approx 36 hours and it’s one injection a day but it’s a flat profile and good at holding you steady. My personal thoughts are that your experiencing a lot of stress which would impact on your control and with the reduced exercise too it’s making your control much harder.

A pump is a personal decision and everyone has an opinion about them so it’s really up to you, I cope better with one but that’s only because it’s reduced my anxiety with injecting many times during the day and you do forget your wearing it most of the time.

I will say that if you can get back into exercise it will help you cope better mentally through this difficult time and definitely talk it through with people as that will also help you cope.

Thanks again @Juicyj I’ve heard dr b talk about tresiba and I know he splits his levemir one in the evening the other upon waking due to dp. My dp has become very potent since my dads passing and is taking a lot more novorapid to get a handle on it. It’s been hard enough to get them to change my lantus to levemir and still haven’t got a prescription change for that yet. I’m not sure I’ll have any luck getting that if it’s even more of an irregular insulin like my team says actrapid is.

 

[Juicyj]

Sorry @Key_master_ i have no experience on actrarapid to speak of but have tried tresiba and this was the best basal i’ve used so that’s why I recommended it, although I would suspect all the stress you’ve been under and decrease in exercise would also contribute to your current issues. It’s when you least need it that you t1 can become more of a head ache so unfortunately you have to put in the extra effort then. The same goes for asking for support too that it’s when you need it most it’s harder to ask for it, try and push them though they should realise that you need support and shouldn’t ignore you particularly when you are already making an incredible effort.

 

[Key_master_]

Sorry @Key_master_ i have no experience on actrarapid to speak of but have tried tresiba and this was the best basal i’ve used so that’s why I recommended it, although I would suspect all the stress you’ve been under and decrease in exercise would also contribute to your current issues. It’s when you least need it that you t1 can become more of a head ache so unfortunately you have to put in the extra effort then. The same goes for asking for support too that it’s when you need it most it’s harder to ask for it, try and push them though they should realise that you need support and shouldn’t ignore you particularly when you are already making an incredible effort.

They have given non and will continue to, it’s not from not asking either, they will not advocate low carb, I spoke to another dsn on the phone earlier from just up the road from me. In fact The stoke on Trent area, I’m from Staffordshire completely different team to my own and got the same reaction to low carb. Some how our hospital switch board put me thru to them instead of our consultants secretary. Which I will address tomorrow to see if there is a prescription like he promised last week but I won’t hold my breath.

Is there anyone here using a regular Insulin like humulin s or actrapid that you know of I can speak to?

Thanks again juicyj

 

[Jaylee]

Hi again @Key_master_ ,

Going to tag in @robert72 . (While I remember it.) Haven't seen him on the forum for a few weeks. But he may pop in to help with his angle..

Personally, I can understand what you mean when the HCPs just don't get what your doing with diabetes managment..
I'm not quite as low as yourself on the carb count. (But this arrangement works for me.)
My new current DSN is pre-D & advocates a banana for breakfast & the baked spud for tea. Lol. Fair enough!
I just don't do em...
Not when I can have a fry up without the "usual suspects" or a spicy pork lettuce wrap..?

Your A1c of five point three is brilliant! Don't lose faith in yourself..