Question about insulin use

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MarinaDE

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Hi all. I was diagnosed with diabetes 3c two weeks ago, and the endocrinologist gave me Tresiba (long acting insulin) and Fiasp (short acting). Three days later, after tracking my blood remotely, the endocrinologist said some of my pancreas must still be working, so he took me off the Fiasp and added Januvia and Forxiga tablets, one each per day.

Then he went on holiday. It only took a day on the new regime before my blood sugar was constantly high and going into the red zone. As I couldn't contact him, I kept taking all the medication, but started adding small amounts of Fiasp upon eating. Since I did that, my blood sugars have been right in the middle of the green range on my monitor.

But this is self medicating and I'm wondering if I'm doing something terrible to myself. I live in Europe and am only in London for the month, and paid for everything privately, because I was so sick. I can't get in to see my normal doctor at home until mid September, and then I expect it will be some weeks or more before I get in to an endocrinologist. For various reasons, I have very low confidence that my GP knows what diabetes 3c is.

If my monitor (Libre3) shows I'm in the right blood sugar range, does my DIY approach matter? I eat pretty well and exercise, so I think the lifestyle side of things is well managed, though I could probably cut down on caffeine.

Thanks in advance.
 
I would say you are doing the right thing if your levels are in the right range, but contact your doctor as soon as you can.

I wouldn't call you deciding to use fiasp to bring the values into range self-medicating, but self-managing your diabetes, which is what we are all supposed to do.
 
I also think you’re doing the right thing @MarinaDE The only thing I’d say is to err on the side of caution when taking Fiasp. That is, assume you might be contributing some of your own insulin, possibly at a later stage than the Fiasp kicks in, so don’t aim for low numbers.
 
Hi. Some would say that even if your pancreas is producing some insulin it can be better to use it rather than the tablets. Insulin has effectively no side effects when used sensibly whereas most of the tablets do have side effects.
 
For what little my extra bit is worth, I completely agree that you aren't self-medicating but doing the necessary self-managing. And this is something you are going to be doing for many years to come, learning as you go along about what does and doesn't work for you on different days of the week, different seasons of the year, at home at work and at play.

Also, as each month passes I am increasingly having to recognise and accept for myself that there may be, in theory, optimum ways to sustain stable BG and to reduce variation. BUT those optimum ways are in part theoretical, absolutely don't always work and do need whatever fix is achievable from whatever resources or inspiration that you can find at whatever moment it is necessary.

Ideally I'd like to be only using my insulin to chase my glucose, but necessarily sometimes needing glucose to mop up surplus insulin. Why surplus insulin? Because counting carbs is not as accurate as the theory would imply, relying on "ratios" for insulin to offset carbs isn't as accurate as we might wish, that many (very many) other factors affect our BG apart from insulin, carbs and timings. AND when all that is totally mastered something else completely unforeseen and unexpected comes along to break the previously established rules. So we get on with what is in front of us at that moment. And try to smile!

By the way, don't worry that your GP might not understand. You, @MarinaDE, already have got the starting measure of your T3c and have ample vocabulary and eloquence to explain this to your GP (should that be needed). This aspect will be fine.
 
Thanks everybody! That's very reassuring.

I don't know anything about how to count carbs, or how many I'm supposed to have each day, or whatever, so I've mostly just abandoned carbs and am eating a modified Mediterranean diet with no bread etc, though I did steal some chips in the pub last night.

The endocrinologist told me off for my strict no carb eating in the first few days! I don't know how he could tell I was doing low carb, but somehow he did. He said I needed to live a normal life.

But the combination of low carb eating, plus taking all the recommended medication, plus adding a smidge of bolus insulin on top, has kept my blood consistently in the green zone for a week, whereas before it was regularly pushing into the red zone. I feel much better, too.

I know that lots of calculations lie in my future, but right now dealing with the diagnosis is as much as I can do. I'm surprised how difficult I'm finding it mentally. So I'm just happy to keep pootling along watching the wave flow through the green section, until I go home and start this medical journey in earnest.
 
Welcome to the forum @MarinaDE . I am very pleased that you have found us.

Well done on using your common sense and choosing to go back to using the FIASP and getting your levels back in range. If all your beta cells have gone with your Type 3c you will need to inject the insulin you will need. If some beta cells remain you may be trickling out some home grown insulin too. Keep an eye on your levels and look back on your levels to see if your doses need adjustments.

It is worth becoming familiar with carb counting as this will become the basis of you self management. The link to Bertie that @Robin has given would be a good place to start. It takes time to sort out the ratios we each need and this will change over time. It is not a perfect science but gives us a good estimate of what insulin you need. As @Proud to be erratic has said there are many variables that impact on our levels so we can never get them perfect.

It sounds like you have got your head round things already. Keep questions coming and people will help in any way that we can.
 
Carb counting isn’t hard @MarinaDE Basically, it means doing what your pancreas used to do naturally - deal with your meals. Your own pancreas could release insulin immediately where it was needed to keep the blood sugar controlled. Insulin injections go into the subcutaneous tissue, a bit of a way from where they need to be, so we inject in advance of eating in order to give the insulin extra time to get working. We also need to analyse our meals and inject the appropriate dose of insulin. The basics of this are simple, so please don’t worry about it.

Yes, your endo was right. You’ll be able to eat pretty normally: bread, cereal, potatoes, rice, and treat items like fruit crumble, cheesecake, cake, etc. It’s all a learning process. It is hard to get your head round to start with, but it gradually becomes easier and living with diabetes becomes easier as you learn more and gain experience.
 
I very slightly object to @Inka typing that eg apple crumble etc are 'treat' foods, because having insulin dependant diabetes where Dose Adjustment For Normal Eating is being specifically discussed, those items are definitely regarded as Normal Eating!

The choice whether to actually eat them or not is always your own, diabetes or not, anyway!

@MarinaDE - Germany has long been a centre of excellence in terms of diabetes care and the NHS here imported DAFNE itself from Germany and had it translated for delivery of its principles to the both NHS patients and their employees ie the doctors and nurses looking after those patients. It wasn't truly new at all since a lot of us old uns had already adopted some if not all of the principles - and it was just like a breath of fresh air to most of us although any number of medics took an awful lot longer to persuade, they were so stuck in their ways. Hence, I sincerely hope that your fears about the German public health provision once you get home will prove to be unfounded and you will be able to get as much help as you need from it, very soon after returning home!
 
@trophywench thank you! The German system itself is clinically brilliant when it matters. My specific problem is my local doctor, who is very dozy. If he gives a diagnosis, you can be certain it's the complete opposite. For example, when I went in and said I'd lost seven kilos in less than a month, which is a huge huge huge red flag, he said I probably had an ulcer. He did a blood test anyway, and then apparently failed to open the envelope.

Not that it mattered, because I was so ill that the day after my consultation I was in hospital, starting what would become a year-long cancer journey.

Why do I keep going to him? Because he's round the corner and speaks English.

Navigating the German health system is tough for an outsider. Germany has everything you could ever want, but they don't volunteer information. You have to ask for it and if you don't know something is available, of course, you never ask. For example, if you're gravely ill, the public health insurance will pay for dedicated taxis to and from all your appointments. But nobody told me about it for months.

Also, not everybody speaks English and navigating complex medical situations in a foreign language is stressful. The GP I saw here in the UK was amazed to hear that translators are not provided. But, nope. A small inconvenience, sure, but stressful.

The GOOD side of this is that apparently Germany was where the early research on Type 3c was done.
 
OMG - I've never wished to work abroad but have needed medical help in Majorca and got excellent assistance both from the local GP who spoke fluent English and the clinic in Palma which he didn't know exactly how to get to, so we had to get there (hire car so easy bit) but then I said to husband, let's go to taxi rank and get one to go who we can follow and then pay him for that cos we can find our way back, and some English spoken there so phew. I'd accidentally bust a blood vessel inside my knee so quite a lot was looking at the Xray they'd immediately taken, and a fair bit of sign language, though I can understand a bit of spoken Spanish as well as speaking a tiddly bit. But not having any spoken German I'd be up the creek without a paddle since clearly, "Ich bin eine madchen" is absolutely not going to be relevant let alone true!

Wondering for whom you work there and whether they could offer assistance? or trusted bi-lingual local friends?
 
Hi @MarinaDE! I'm also an English speaker living in Germany.

I was diagnosed (T1) in Germany two years ago and even though I have lived in the UK, I never had health issues while living there, so I can't compare the two, but I can give you an idea of what to expect once you're back in Germany, with the disclaimer that things differ between states and insurance providers. 🙂

Since you've got a diagnosis, it should be straightforward to get a referral (Überweisung) for an endo here. I've never had to wait more than a few weeks for appointments with my endo. Checks at the Augenklinik (you'll need an annual eye exam) are done yearly and mine are booked several months in advance.

You can search online for endos and other doctors that speak English. I live in Baden-Württemberg and this is the Artzsuche site my hausartz told me to use:

Arztsuche - Kassenärztliche Vereinigung Baden-Württemberg

www.arztsuche-bw.de www.arztsuche-bw.de

Once you've done a search, 'mehr Details anzeigen' will show their 'Fremdsprachen', foreign languages, if they've entered that info.

My endo prefers to handle my prescriptions and tests, but I can go to my Hausartz if I need prescriptions. I haven't found any resistance from either of them with the frequency or quantity of prescription requests. I try to request once at the start of each quarter and keep it reasonable while maintaining a comfortable supply at home. Sometimes doctors are on holiday and I don't want to mess with going to the other doctor covering their patients, so I like to have enough on hand to keep me going for those periods, plus holidays like Christmas. Depending on the state you live in, your Hausartz might need to give you a new Überweisung every quarter for your end appointments.

After diagnosis, I had an appointment every two weeks with my endo, switching to monthly appointments. After a year, I was down to quarterly appointments with an occasional gap. My endo take a blood sample for HbA1c and a bunch of other things, plus a urine sample if I'm not on my period. Lab results are sent to me and my Hausartz in the post a week later and discussed at the next endo appointment. There's a letter from my endo with the results, so they've obviously looked at them and I'd probably get a phone call or a prompt for a sooner appointment if anything was of concern. Those lab results are a lot to translate at first, but you quickly learn what numbers matter to you.

I was given a fixed dose for fast acting and long acting for the first month after diagnosis and was told to adjust as needed. A month later, I was given a CGM (Germany offers FreeStyle Libre 3 and Dexcom 6 - FreeStyle Libre 2 is no longer offered here and I don't think Dexcom 7 is widely available yet) and taught to carb count by one of the Diabetesberatung (diabetes educators) in the clinic.

Carb counting in Germany, as I was taught, is different from other countries. I was taught to measure carbs in KE (Kohlenhydrateinheit, or carb unit), which is 10g of carbs. I was told to calculate x units of insulin per 1KE. Most other countries (and in Germany if you're on a pump using a carb calculator) calculate the inverse, 1 unit of insulin per x grams of carbs. So in Germany, your 'Faktur' might be 2.5 (2.5 units of insulin per 1KE), but in the UK the equivalent insulin to carb ratio would be 1:4 (1 unit of insulin for every 4g of carbs). It's a weird difference, but an important one if you'll be doing things German-style (which I recommend if you live here). Just a heads up for when they teach you carb counting here. 🙂

I am also on Januvia/sitagliptin. A year ago a generic was made available, so I was switched to that. Just a heads up that you might not be prescribed Januvia here, but another sitagliptin tablet. I didn't notice any difference. It was still a once-a-day tablet and still the same strength.

I was started on single-use pens (Fertigpen or Einweg-Pen) for Humalog and Abasaglar. I requested a few other fast-acting insulins (NovoRapid and Lyumjev) to try out in the first months after diagnosis. I eventually settled on Humalog and Lyumjev and requested the Junior versions of those so I could do half-units. I was never offered a reusable pen until I switched to a pump a few months ago. Now I have a reusable pen and use NovoRapid penfills (cartridges) since that's the insulin that's recommended for pumps. I wish I'd been offered a reusable pen sooner, but maybe I should have asked once I settled on the insulins that work best for me.

For CGMs, I've used FreeStyle Libre 2, FreeStyle Libre 3 and Dexcom 6. I've been given a reader for each one (including FreeStyle Libre 3 - a reader for that isn't available in the UK yet, but it is in Germany) and I don't think I've been charged for any of them. Each one just showed up with the first batch of sensors.

For supplies, here's what I pay on AOK BW insurance:

Insulin & hilfsmittel (tools)
pens cost €1.00-1.50 each, depending on whether I get a box of 5 or 10
penfills (cartidges) cost €1 each and come in a box of 10
I don't use vials, so I don't know the cost of those
pen needles costs €2.80 for a box of 105 needles (one box lasts about a month, changing every other use)

CGMs
CGM sensors are €5 each (but free if linked to a pump)

Tablets
Januvia/generic sitagliptin is €7 for a box of 98 tablets (3 months worth)

Glucometer
my actual glucometer (Accu-Chek Instant) was free from the Diabetesklinik on diagnosis and I have since bought two more from the Apotheke at €10 each so I can keep them in my different bags
test strips are completely free
lancets cost €2.20 for a box of 200

Ketones
ketone test strips are free (both blood and urine)
FreeStyle Libre 2 & 3 readers double as ketone readers, so I'm prescribed those test strips even though I'm on Dexcom 6 now

Glucagon
glucagon kits are €5 each
My last prescription for this was Baqsimi which comes in a pack of two and cost €10 for the box; single-unit GlucaGen kits cost €5 each

Pump
all pump supplies (infusion sets, reservoirs, two protective cases a year and a linked CGM) are all free
the actual pump was also free 🙂

Other charges
When I've stayed in the hospital (when I was diagnosed and when I was set up with a pump), I was later sent a bill for €10 per day I was there
When an ambulance took me to the hospital (when I was diagnosed), I got a separate bill for €10
You'll need to show your insurance card at every appointment (hausartz, endo, augenklinik, absolutely everywhere) and if an ambulance is called for you, so always have it with you

Let me know if you have any other questions. I know living in a foreign country, and one where you don't fluently speak the language, can make things stressful, but from my experience, Germany has a really good health care system and you should be well cared for.

Oh, and my Hausartz also speaks English and is right around the corner from me, so it's very convenient. They also missed some of my warning signs - when I went for my second Covid vaccine, I mentioned I'd lost some weight and some other symptoms. Since this was presented in the context of the vaccine, they didn't consider something else or doing a blood test. They said if I was unsure about getting the vaccine, I wasn't required to get it. I got the vaccine and a week later I was in an ambulance taking me to intensiv with a blood sugar of 650 mg/dL (36 mmol/L). My diagnosis (T1) was pretty clear at that point and my hausartz was very apologetic and now promptly sees me when I request an appointment. 🙂
 
@Finn, fascinating to read.

Some of the costs bear no relation to what we might pay over the counter in a pharmacy - never mind in relation to a prescription standard charge (which all of us with a Diabetes diagnosis gets us a waiver on prescription charges) nor the price listed in the 'vocab' for our geographic Integrated Care System (ICS) and accessible from the internet (or a friendly pharmacy).

@MarinaDE I'm not sure if I've noticed if you are on disposable or reusable pens with (smaller) disposable cartridges. The disposable pens have several advantages and not much disadvantage. They allow 1/2 unit dispensing of insulin, which would be ideal while you are only using small doses. They also have a simple but useful memory of your last dose size and approximately how long ago, for when you have a distraction and then "did I, or didn't I do that jab .... ?". Now you are aware of these pens, I suggest you ask for them to be your standard issue, rather than disposable pens, once you are back in Germany. They are not available in UK with every sort of insulin, only certain manufacturers. They might cost you a bit more as a one-time purchase, but give a saving on the cartridges with a typical pen life of4 or more years; and definitely create far less packaging to satisfy the much more onerous German recycling criteria (but perhaps there are superior processes to provide disposable pens with minimal packaging?). Anyway something to consider.
 
Inka said:
@Proud to be erratic Typo? It’s the reusable pens that have many advantages.
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Thanks, yes typo. I started that reply just after 5pm and enjoyed many interruptions - an inevitable consequence of our chosen new (temporary) lifestyle sharing a home with our daughter, son-in-law and grandson!
 
Proud to be erratic said:
I'm not sure if I've noticed if you are on disposable or reusable pens with (smaller) disposable cartridges. The disposable pens have several advantages and not much disadvantage
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@Proud to be erratic I had to look at the pens! I don't even know the difference between the pens. I have a box of each, and each pen has 100ml of insulin in it. I've been changing the needle every couple of uses. I guess that means I've got the reusable? So much to learn!
 
MarinaDE said:
@Proud to be erratic I had to look at the pens! I don't even know the difference between the pens. I have a box of each, and each pen has 100ml of insulin in it. I've been changing the needle every couple of uses. I guess that means I've got the reusable? So much to learn!
Click to expand...

No, they sound like disposable. The reusable pens are like fountain pens. You have one pen for each type of insulin and simply drop in a cartridge of the appropriate insulin and replace as necessary. They’re much better quality and more environmentally friendly, of course. They also take up less room in your fridge because you only have a tiny box of 5 cartridges.

Edited for clarity: “reuseable” means you use the same pen month after month, up to 4 or 5 years (yes, years) and just put new insulin cartridges in as each cartridge runs out; the disposable ones you use until the insulin they contain runs out and then you throw away the whole pen.
 
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Hi @Finn, great to find someone else in Germany! I feel reassured about the news that the Libre 3 is mainstream in Germany. It's the one my endocrinologist here gave me, and I've been worried about where to get the next batch of sensors from. I'll just ask my Hausartz.

I know the German healthcare system more intimately than I would like, as I was seriously ill about a decade ago. The clinical care is terrific, but once you enter hospital, it gets very fragmented. If you end up dealing with different departments, they don't necessarily communicate as they should. I very much enjoyed the three-week Kur they sent me to!

A friend of mine has two sons with Type 1 and she tells me I can probably qualify for a Schwerbehindertenausweis and get a tax deduction for being disabled! I love a good tax deduction. She says she spoke to someone official who told her they consider insulin-dependent diabetes a disability because you have to spend so much mental power every day monitoring it.

Anyway, I expect to come back to you with many questions! I return to Germany at the end of this week, and that's when this adventure begins in earnest.
 
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