Confused about my treatment - help please

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ch1ps

ch1ps

Well-Known Member
Relationship to Diabetes
Type 1
Hello

I was/am T2 was on Metformin, had good control for 2 years, last year I got ill and went in to hospital as had ketones in blood. Had to stay in for 3 days and was put on insulin, that was last November.

My dilema is that I don't think my GP is taking my situation seriously.

I currently take levemir once a day (evening), he has told me to go up to 46 units a night, but taking 44 I hypo anytime between 3:00 & 7:00 am.

I have gone down to 42 to see if this helps.

I don't think the answer is upping the levemir, I think I need a rapid insulin also, when I asked him he said I don't need it yet. I am worried as I don't think I am being treated correctly and it's getting me down.

Any ideas of what my next move should be?

Many thanks
Pauline
 
Hi Pauline, welcome to the forum 🙂 I'm sorry to hear of the problems you are having. Do you test your blood before and after meals to find out the effect of the food? If your levels are going very high then you may need a rapid insulin also. What are your waking and pre meal levels like? It might be worth considering splitting your levemir into two injections so that you can increase it overall, but take less at the time when you need it less e,g. by taking a smaller proportion of the total dose at night might help prevent those night hypos, but you could then have more during the day to help keep your levels down generally.

If you are really not confident in your doctor's knowledge of the use of insulin then I would either see a different GP or ask to be referred to a consultant.
 
Hi Pauline

Northerner said:
If you are really not confident in your doctor's knowledge of the use of insulin then I would either see a different GP or ask to be referred to a consultant.
Click to expand...

Agreed. You should be able to ask for another GP at your surgery. If not, see if there's a walk-in doctors in your local area that you can visit if you don't want to change GP to see if you can get a second opinion. I've had to to do this a few times myself because of never seeing the same person twice (locums). :(
 
I'd ask for referral to hospital Diabetes service - no un-Type 1 should have ketones unless they have been on very low cals - eg strict diet.

What was the reason given for your ketones?
 
Welcome to the forum Pauline 🙂

Are you self testing as well? Because maybe you can show a before and after meals BG level to help show that meal time insulin would be useful.
 
Hi everyone,


Thanks for the messages. More info below

1) I test when I wake, then pre lunch & pre dinner. I did test after meals and got told not to by Dr.

2) Only had ketones once & that was when I was hospitalised, they believe my pancreas stopped working - although no testing has been done to check.

3) My GP is the diabetes specalist for my surgery 😱

I have an appointment next Friday & am going to ask to split the levemir in to two as most mornings I am hypo.
 
Hi Pauline, well, what can I say?

1. How do you know how food affects you if you don't test post-meal? 🙄🙄 You should only not test when you have established how a particular meal affects you - this may also inform your decisions about insulin doses.

2. Your history is interesting. I developed symptoms of diabetes about two years prior to diagnosis, although I didn't recognise them as such except with hindsight. I was always thirsty, peing a lot, tired, lethargic, frequently depressed and losing weight. Then I caught a virus that triggered DKA and I ended up in hospital with levels of 37 mmol/l and very high ketones. I was diagnosed as Type 1 and have been on insulin ever since (4 years). Your experience does sound very similar to mine - had I gone to the doctors in those two years I'm pretty sure I would have been diagnosed Type 2 (although not typical - I have been running marathons for 30 years!). However, my consultant thinks that my running probably allowed me to keep my levels reasonable as I was using my declining insulin very efficiently. What is interesting about my case is that, 4 years after diagnosis, I have stopped using lantus and only need insulin for my meals - I have been like this for about 4 months now so it is evident that my pancreas is still working, although it's a bit feeble!

3. There are some cases of Type 1 and Type 2 that are very clear cut, but there seems to be a significant number of people who do not fit the conventional diagnosis and most GPs are not likely to recognise the subtleties. Although your GP is the practice 'specialist', this actually means very little in terms of his experience with unusual (or even straightforward Type 1s) cases - most of his experience and training will be with 'classic' Type 2s. For this reason I would definitely ask for a referral to a consultant. You need to be talking to someone who has more experience with unusual cases. It will be interesting to hear your GPs response to your suggestion of splitting levemir, it should reveal how clued up he/she is 🙂

I hope the appointment goes well 🙂
 
Well I'm not impressed with what the hospital did with you, stick her on Levemir and send her home doesn't sound like much of a holistic long-term solution for the rest of your life to me.

Is this a small hospital or a big un? - do we know (eg by someone else on this Forum living in the same area) what sort of diabetes service they run? ie is it any good, or do people travel to further hospitals to get a decent service?

Where?
 
Hi Pauline does the Dr know that you hypo between 3 and 6.

If the decision is being made on your waking levels then they could be telling you all the wrong things due to treating the hypo - and/or you body trying to recover from the hypo by releasing glucose into the blood stream.

There is another option that you could look into - ask to be referred to a DSN. Some hospitals have DSN run clinics and some areas of the country have community DSNs.

I agree with Northerner though that you need some information on what is happening after meals - if you need a fast acting insulin then just increasing a basal is going to leave you with periods were you are too high - and other periods were you risk hypos.
 
Thanks for the further replies.

I was sent to the Royal Free in Hampstead - a pretty big hospital!

I will speak to my GP about referral to a consultant or DSN, I doubt he'll do either.

I was testing after meals but as I said my GP told me not too. I did ask if I was possibly a T1 but GP says no.

I'm so confused, I just want to get the right treatment for my diabetes. I will push the GP on Friday.
 
ch1ps said:
Thanks for the further replies.

I was sent to the Royal Free in Hampstead - a pretty big hospital!

I will speak to my GP about referral to a consultant or DSN, I doubt he'll do either.

I was testing after meals but as I said my GP told me not too. I did ask if I was possibly a T1 but GP says no.

I'm so confused, I just want to get the right treatment for my diabetes. I will push the GP on Friday.
Click to expand...

Pauline, if you are not happy with your GP's handling of things then stand your ground or see a different GP. You need to ensure you are getting the right advice and treatment and GPs are there to serve your needs, not override your concerns. Good luck, and let us know how things go, 🙂
 
Northerner said:
Pauline, if you are not happy with your GP's handling of things then stand your ground or see a different GP. You need to ensure you are getting the right advice and treatment and GPs are there to serve your needs, not override your concerns. Good luck, and let us know how things go, 🙂
Click to expand...

After posting last night I spoke to my partner and I agree, I need to be more assertive with my GP as he's not listening (or hasn't in the past), listened to and acted upon my concerns.

I shall let you know after the appointment how it went.

Once again thank you for all the replies, advice and support, it is much appreciated.
 
Hi Ch1ps

Sorry to read of the troubles you are having.

I note from your earlier post that you are on what looks like one large-ish dose of levemir, and that putting the dose any higher means that you dip into a hypo. From what you've said I also suspect there may be more going on here diagnosis-wise (LADA perhaps?) but in the meantime you might find this fancy 3D graph interesting:

http://www.diabetesdaily.com/wiki/Levemir_Speed_Versus_Dose

It plots the duration and 'peakiness' of levemir based on units/Kg bodyweight. The higher your dose per kilo of weight the peakier it seems to get, and the longer it lasts. This may in part explain your overnight lows.

Perhaps you would do better with 2 smaller doses approx 12 hours apart (Levemir tend to work best in this structure for most/many users). Start with even doses (perhaps half of your current single dose each) and test and adjust from there - they don't have to end up equal, you may end up with more needed at night/less in the day or vice versa.

Stick yto your guns regarding better support/firmer diagnosis. Hope you get a better response form your GP next time!
 
1) I test when I wake, then pre lunch & pre dinner. I did test after meals and got told not to by Dr.
Click to expand...
Pauline, do you drive and if so have you informed the DVLA that you are on insulin? It's now law that any diabetic on insulin must test before driving and every two hours whilst driving (one long journey or several short ones). I only ask because it seems that some GPs are unaware of this new legislation and are restricting test strips to diabetics on insulin as it seems your GP may be doing. It might be another thing you can pressurise the GP with.

I have to say that your GP seems somewhat arrogant and not at all sympathetic as he should be.
 
everydayupsanddowns said:
Hi Ch1ps

Sorry to read of the troubles you are having.

I note from your earlier post that you are on what looks like one large-ish dose of levemir, and that putting the dose any higher means that you dip into a hypo. From what you've said I also suspect there may be more going on here diagnosis-wise (LADA perhaps?) but in the meantime you might find this fancy 3D graph interesting:

http://www.diabetesdaily.com/wiki/Levemir_Speed_Versus_Dose

It plots the duration and 'peakiness' of levemir based on units/Kg bodyweight. The higher your dose per kilo of weight the peakier it seems to get, and the longer it lasts. This may in part explain your overnight lows.

Perhaps you would do better with 2 smaller doses approx 12 hours apart (Levemir tend to work best in this structure for most/many users). Start with even doses (perhaps half of your current single dose each) and test and adjust from there - they don't have to end up equal, you may end up with more needed at night/less in the day or vice versa.

Stick yto your guns regarding better support/firmer diagnosis. Hope you get a better response form your GP next time!
Click to expand...

If I have read the graph correctly I am taking 1.5 units per kilo body weight. I tend to hypo about anywhere between 7-11 hours after my dose.

Thanks for the information.
 
Pattidevans said:
Pauline, do you drive and if so have you informed the DVLA that you are on insulin? It's now law that any diabetic on insulin must test before driving and every two hours whilst driving (one long journey or several short ones). I only ask because it seems that some GPs are unaware of this new legislation and are restricting test strips to diabetics on insulin as it seems your GP may be doing. It might be another thing you can pressurise the GP with.

I have to say that your GP seems somewhat arrogant and not at all sympathetic as he should be.
Click to expand...

I am not a driver thankfully, but thank you for the information, it's something I might need to consider if I do decide to learn to drive. Have to say GP has been good about the volume of test strips I order. One good thing then hey?
 
Update

Saw my GP today, he agrees that I need to change my regime.

I am reducing my levemir to 36 tonight.

I will start using Novorapid tomorrow at lunchtime.

I have to see him again next Friday and he will reduce my levemir again, then I will take Novorapid lunch & dinner.

Review again the following week, reduce levemir again (if needed) and then novorapid at breakfast.

He says not to go on Novorapid for all 3 meals straight off as until the levemir is adjusted correctly I might hypo a bit.

So have to say I am a lot happier as he seems to have listened to me, he said I'm T1 now, although no testing for this to be done (I did ask for testing).

I would like to thank all of you who replied for your advice and support 🙂
 
Hi Chips,
glad to hear you are getting somewhere at last.
The easiest way to sort out your basal is to do a basal test. Instructions to be found in the pump forum pinned at the top of forum 🙂 The method can be used for people injecting as well using a pump.
 
Pumper_Sue said:
Hi Chips,
glad to hear you are getting somewhere at last.
The easiest way to sort out your basal is to do a basal test. Instructions to be found in the pump forum pinned at the top of forum 🙂 The method can be used for people injecting as well using a pump.
Click to expand...

Thanks Sue, I will have a look at that now!
 
Nice to hear of a GP that listened to the paitent for a change and is making changes for you. Good luck.
 
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