If we run out of insulin ...can I get a prescription filled abroad? EU?

[user1471530109]

I've googled and can't find an answer for after we leave the EU. It says that any EU script can be filled in any EU country....

I'm panicking. I think having a back up plan with help my anxiety over this more than anything.

Anyone know if I could fly out somewhere if I needed to? Or even get friends in the EU to send some over (if I supply the prescription?).

It's not just my insulin. My pump supplies are from Europe...

I'm thinking I can go low low carb to reduce insulin needs...but stockpiling tends to be all stodge!

Feeling more desperate the closer we get. I can't believe they will let this happen? FFS.

It’s maddening and terrifying that anyone should be made to feel like that! As if T1 wasn’t tough enough already.
I’m really sorry I can’t offer words of comfort, just the sincere hope that common sense and decency will prevail. It’s life saving medicines we’re talking about, not toothpaste.

It’s astonishing how much damage this uncertainty is producing, on a psychological basis as well.
EU citizens terrified by the idea that their submission to settled status might be rejected, families split, etc
Companies unable to plan for their business and their people.
Worries about security and safety...

DH has just started on a pump - I've nagged him to try and work out if he needs to stockpile anything but I will nag him again.
He can use a pen but his control is so much better now.

KetoGirl I've reported your post.

@drspouse Could I ask why?

Because you're recommending something that is unsafe for people with Type 1.
And don't bother linking to fad websites, Diabetes UK has evidence based research and doesn't recommend it as it is not safe.

www.diabetes.org.uk/professionals/position-statements-reports/food-nutrition-lifestyle/low-carb-diets-for-people-with-diabetes

Keri - you may know about Brexit,but clearly know NOTHING about type 1 diabetes. Your post is laughable.

Keto- bloody auto correct...

Agree with above reporting! While low-carb eating may reduce insulin requirements even in a type 1, they certainly need to maintain their regular basal insulin as the absolute minimum!

[nothing useful to add to the thread though, sorry]

Write large, Keto is a symptom of another dimension to Brexit, and that's all the snake oil salesmen that are lurking in the shadows to prey on the most vulnerable and needy in society. I wonder how many scamsters are already working their marks with promises of this, that and the other ?

I also wonder what is being done to prevent and prosecute such scum ? Fuck all, if the news is anything to go by.

ketogirl

You probably do not understand the difference between type 1 and type 2 diabetes.

With type 1 diabetes one can try to reduce carb intake to reduce one's insulin needs. Indeed, one can go very low carb and reduce one's insulin considerably.
BUT: it is not possible to 'control' type 1 without insulin and by diet alone. No-one is mentioning this as an option because it is not an option. A diet that consisted exclusively of protein, for example, still needs insulin.

Before insulin was discovered, people who developed type 1 tried to extend their life by eating as little carbohydrate as they could as the only possible treatment for their condition. It did not help them: they died, essentially of starvation.

On the more general topic of insulin and pump supplies. These are really tips more for emergency situations than recommended practice, but nonetheless...

I fairly often had to spend time in countries where there is no way I would be able to get hold of either more insulin or pump supplies.
I know it is not recommended, but I often kept the needle in the same site for 4 days at a time rather than run the risk of running low on pump supplies. The only problem that I faced was that around the fourth day the pump site would HAVE to be changed as insulin absorption would get worse.

Also, on insulin and temperature:
long, long ago I travelled around Asia for months as a backpacker, carrying insulin and no access to refrigeration. I actually spoke on the phone to the company that produced insulin before doing this (wanted to know before setting out if this would kill me or if it was do-able) to find out more about the temperatures the insulin would tolerate.

Paraphrased: if the insulin freezes it will no longer work. However, it can normally remain at normal room temperature without issue for a lot longer than what is recommended. What they recommend is extremely conservative compared to what the insulin can actually tolerate.
The stuff I was using was exposed to fairly high temperatures for about three months, then was stored in a not very good fridge and still used for the next 1 and a half years, and had still not deteriorated.

So the bottom line from that, as I understand it, is that if you get insulin from abroad, getting it in a way where it could be exposed to extreme cold en route is bad, but exposure to normal temperatures along the way is much less of a concern.

keto
As others have pointed out, a keto diet will not remove the need for insulin
Plus there was a recent article about how protein consumption requires insulin (ie not just carbohydrate consumption)
Finally I believe it was the OP who said in the event of food supply issues, most of the food that can be stored now in preparation are carb-heavy.

Here's the article www.diabetes.co.uk/news/2019/jan/type-1-diabetes-study-shows-dietary-protein-is-linked-with-additional-insulin-need-94221545.html

I notice that in her opening post, the op says;
I'm thinking I can go low low carb to reduce insulin needs...

To explain to any muggles... people with type one need background insulin regardless of what they eat. For my son this is somewhere between 15 and 30 units a day - it is affected by growth, stress, illness and activity. He uses an insulin pump instead of injections, partly because it’s so variable as this drips shorter acting insulin continuously and we can change the rate st any time. Separately, people with type one need to give themselves short acting insulin every time they eat. If my son has two pieces of toast for breakfast he might need 5 units of insulin. If he eats two Starbucks muffins, he might need 12 units. If he eats a 3 egg omelette (no carbs) he would still up to 2 units of insulin which he would ask his pump to deliver slowly over 45 minutes. This is because the body converts protein to glucose. The fat in the omelette might cause a little rise several hours later which he would correct with more insulin depending on what his blood glucose level was and which way it was trending up or down. So if he had three meals of omelettes a day, he might only need a total of, say, 20 units background plus 10 units of extra. If he ate 6 Starbucks muffins he would need something like 50unitz per day, compared to 30 units for the eggs. In a no insulin scenario, he’d survive longer on the eggs but he would still die when the insulin ran out (within days). HTH

@anzu66 - that's interesting to hear about the insulin. Have always wondered. Did you find that you needed more insulin the longer you went?

We're already stretching pump supplies on occasion because of the supply issues and the fact we now have no buffer. My DS is pretty happy that I've apparently got a bit slack on set changes. He does need to do it 12 hours into the fourth day though as otherwise he'll see a rise.

Did you find that you needed more insulin the longer you went?

Yes, but there are always so many factors influencing how much insulin one needs, so never a truly consistent pattern!

t1mum3
To explain to any muggles

Indeed, which is why pharmaceutical companies such as Novo Nordisk have made contingency plans;

Novo Nordisk says it has planned for all future ‘no-deal’ Brexit contingencies including doubling UK stock to 16 weeks (around four months of supply), which will be in place by the end of January.

The company intends to continue to build stock ahead of the proposed Brexit date - 29 March - at which point it expects to have roughly 18 weeks of stockpile, around two and a half times the normal stock levels

It has also scheduled monthly airfreight slots between April and July 2019 to ensure supply isn’t affected

Pinder Sahota, corporate vice president of Novo Nordisk UK has assured the public: “Our first commitment is to ensure that patients treated with our medicines remain unaffected in the event of a ‘no-deal’ Brexit. We believe our no-deal Brexit preparations are robust and we have taken all necessary steps to ensure continuity of supply to the UK patients we serve. This is evidenced by our more than doubling of stock levels to 16 weeks and securing airfreight slots from April

We continue to work closely with trade associations in the UK and the EU to ensure that the interests of our patients are at the forefront of negotiations We are also working collaboratively with the Department of Health to ensure continuity of supply, irrespective of the outcome of the Government’s Brexit negotiations

The delays are unknown, which is why we have built the stocks, why we have booked air freight, and we will be looking to other ports as well in addition to Dover

www.pharmatimes.com/news/novo_nordisk_stockpiling_over_double_usual_amount_ahead_of_brexit_1276015

which will be in place by the end of January.
And is it, given that it's now February?

The report is dated 24th January 2019.

@clavinova - I was responding to people suggesting low carb as a solution.

Yep, Novonordisk say they have plans in place for 16 weeks worth which is good.

Doesn't help with the issue of pump supplies, cgm supplies and glucose and ketone strips and meters, but that's good and more concrete than what they've been saying until recently.

Was depressingly reading this morning about the new generation of pumps coming through (that haven't been approved here yet) and how European regulator approval may no longer apply post-Brexit. The UK won't be a priority market for the pump companies who will have to go through another approval process so we will lag behind. And the whole thing is a disaster for research funding as I understand.

I really can't see an upside to any of this.

DH says test strips are UK made but he uses a Libre.

Could be wrong on this but think the Libre and other Abbott stuff goes out via a distribution centre in the Netherlands even though it is UK made. Presumably fairly easy to sort though.

If there's a limit to how much/how often your surgery will prescribe in advance, would it help with boosting your own personal stockpile to get a private prescription from your GP and dispense it now? Will cost a bit, but nowhere near as much as flying to France for a private consultation etc. I appreciate it's not a solution at a national level, of course, and doesn't address the shelf life/storage issues if disruption goes on for longer than the initial pandemonium. Just a thought. Apologies if stupid.