Normal or concerning?

[Lucyr]

@LittleSunflower It isn’t surprising you’re stressed. This has gone on for a long time. I completely get what you mean about being told one thing and then they do another. It starts to make you question yourself. It’s not your fault though. You’ve done everything right. Hold on to that thought.

Sorry if I’ve asked this before but can you see another team or go to another hospital? Could your GP write to your team on your behalf? Or even, could you pay to see someone privately? Not that you should have to, but it’s an option possibly.

I’ve been reading and following for a while but not replying, but thought I’d add that seeing a different team can make such a difference. I used to see a team I completely didn’t get on with and found very dismissive of my concerns and struggles, and the way through it I found to be speaking to my GP. He asked me to make notes of the issues I had with them so he could write to them, and moved my care to a different hospital. It has been like a completely different world since.

I would add though that switching hospitals did mean a waiting list, so it may be worth sticking it out until you’ve had tests and got prescriptions that you need like the half unit pen, before switching, so that you don’t have a long waiting list without those things in between. An initial conversation with your GP could be a starting point though.

 

[LittleSunflower]

@LittleSunflower It isn’t surprising you’re stressed. This has gone on for a long time. I completely get what you mean about being told one thing and then they do another. It starts to make you question yourself. It’s not your fault though. You’ve done everything right. Hold on to that thought.

Sorry if I’ve asked this before but can you see another team or go to another hospital? Could your GP write to your team on your behalf? Or even, could you pay to see someone privately? Not that you should have to, but it’s an option possibly.

I don’t think you’ve asked that before. I will definitely look into the GP writing to the team and even paying to see someone privately. Definitely an option thank you

 

[LittleSunflower]

Me again... it’s an urgent Cortisol test I have to have within the next week before 9am. What does this mean? Does anybody know?

 

[Inka]

It looks.ike they’re testing to rule out an adrenal disorder @LittleSunflower

 

[LittleSunflower]

It looks.ike they’re testing to rule out an adrenal disorder @LittleSunflower

Sorry, what does that mean? I thought I’d had an information overload with being diagnosed Type 1 a few weeks ago and now this. Stressed, anxious, worried, upset, you name it

 

[Inka]

Sorry, what does that mean? I thought I’d had an information overload with being diagnosed Type 1 a few weeks ago and now this. Stressed, anxious, worried, upset, you name it

Don’t get stressed. Doing this test does not mean you have anything wrong. It could simply be to rule out problems that would need quick attention.

Adrenal issues are things like Addisons and Cushings.

I repeat - testing for these doesn’t mean you have them. I can understand your stress. Focus on getting the test done quickly and properly, and be glad that this extra thing is being checked. X

 

[Leadinglights]

Me again... it’s an urgent Cortisol test I have to have within the next week before 9am. What does this mean? Does anybody know?

The reason for the test at that time is that Cortisol levels would be at their highest early in the morning. I would suspect they are checking for a low level as that could cause weight loss, I don't know if that is one of your symptoms.
It is often known as the stress hormone and can be used to assess people who are put in stressful situations or suffer stress related conditions to see if treatment or therapies are working.

 

[LittleSunflower]

The reason for the test at that time is that Cortisol levels would be at their highest early in the morning. I would suspect they are checking for a low level as that could cause weight loss, I don't know if that is one of your symptoms.
It is often known as the stress hormone and can be used to assess people who are put in stressful situations or suffer stress related conditions to see if treatment or therapies are working.

Thank you. Yes, I have lost just under a stone since October even though I am now eating 3 meals, 3 (sometimes 4) snacks a day. My BMI is 16.9 so I am underweight at the moment. I have a raging bruise from a repeat HBA1C I had 2 weeks ago. Another set of blood tests will be fun! I always get told I have no veins and no blood to give. Got to laugh really haven’t you

 

[LittleSunflower]

Don’t get stressed. Doing this test does not mean you have anything wrong. It could simply be to rule out problems that would need quick attention.

Adrenal issues are things like Addisons and Cushings.

I repeat - testing for these doesn’t mean you have them. I can understand your stress. Focus on getting the test done quickly and properly, and be glad that this extra thing is being checked. X

I am very glad they are checking all of these things but obviously worried about the results and stressed from the information overload. It seems like I can catch a break recently. Thank you for the reassurance, as always x

 

[LittleSunflower]

All booked in for an urgent Cortisol, Thyroid & Kidney function blood test next week.
I also have my first diabetic eye screening appointment 2 days after the blood test.

 

[rebrascora]

Good to hear that they are checking you out promptly and thoroughly.

How is it going with no Levemir? Hope your levels aren't too erratic. I can understand them wanting to see what happens without it for a few days, so I can see both sides of the argument on this but I would have liked them to have given you the Novo Rapid with instructions on how to use it if your levels went too high ie use it for corrections even if they didn't want you to use it for meals just yet. Particularly as you are very anxious about high levels.... and of course high BG levels also cause anxiety so it is a bit of a vicious circle. Having something available to treat high levels gives you some conrtol and that control can alleviate the anxiety. You have already proved that you have respect and restraint with using insulin with your careful use of Levemir so I don't understand why they haven't given you NR to use if/when necessary. Even if it is just half a unit here and there to get a feel for how it works. It is not unusual for the honeymoon period to reduce insulin requirements so I don't see why that makes your diabetes particularly unusual. I do think that the continued weight loss needs investigation though so it is good that they are investigating that straight away.
Don't worry about the eye screening, it is pretty straight forward. They will do a quick eye test then put drops in your eyes to dilate the pupils which sting a bit but nothing to be concerned about. The drops will make your vision a bit blurry and you will be more comfortable if you take sunglasses with you to sear afterwards as even a dull day can seem too bright for a few hours afterwards. No driving until several hours afterwards when your vision has returned to normal so use public transport or get someone to take you or walk which is what I do because the local hospital is just a few miles away.

Anyway, good luck with all that. I know it seems like you are caught up in a whirlwind and it is all very overwhelming but things will start to fall into place soon and you will start to take control of things once they get you onto a more settled regime. Keep us posted with how things are going and reach out whenever you need a bit of extra support. We are here for you. Chin up, you are coping really well in very difficult circumstances and it will get easier.

 

[LittleSunflower]

Thank you for your kind and reassuring words as always @rebrascora.
Surprisingly, I was absolutely fine with no Levemir level wise. I did have a headache for the entirety of the first day and into the second though. I’ve also started noticing a sort of heartburn/acid reflux sensation in my chest area and a sour feeling in my stomach at times.. I do have a history of acid reflux but this feels different and sour is the only word I can really describe it as.
I’ve attached some photos of both days with no insulin so you can see, it was mostly in the green target which is good! Although I was finger pricking before every meal, 2 hours post meal and if I felt a bit off because it makes me feel as if I have better control with my levels. The libre can be 3mmols out at times which shows I’ve had a high on the graph when I actually haven’t so not sure what that’s about. Doesn’t give me hope that when it does come to Novorapid, I could base my dose off of that and then it could make me hypo as it’s not my true level. Then again, I know it isn’t the same as a finger prick for blood so I will always test to be sure, the finger pricking doesn’t bother me anymore.
I was advised to start the 1 unit again on Friday. My levels have been very up and down back on the insulin which is not so great and you can definitely see I am still spiking after food, even if I am dropping on my own around two and a half hours later.
I’m glad they’re running the tests as I previously said and I was encouraged to get my eyes screened as it’s early days so I would have a sort of before photo record.
It really does feel like everything is happening at once at the moment and I’ve surprised myself that I’ve managed to keep on going and getting out of bed every day.
I did have a bit of a moment last week, I was making my breakfast as normal (I’ve had the same breakfast everyday since starting on insulin), my hand lost the grip of a marmite pot, it bounced off of my plate causing the toast and knife to fly into the air and land butter side down onto the floor.. safe to say I cried about it which makes me chuckle now, thinking back.
To top things off, I have an infected ingrown toenail at the moment which I had no clue about until it started to feel tender and sore. I know feet, amongst the rest of our precious bodies have to be well looked after with diabetes so the nurse gave me an urgent call back! Hopefully that settles soon with the regular salt washes.
How are things with you? Hope all is well x

 

[rebrascora]

Hi. Good to hear that you have managed OK without the Levemir.
As regards the differing readings between Libre and finger prick BGs Libre is not so accurate outside of target range and lags about 15 mins behind your BG levels so if you test at a time when your levels are changing quite rapidly ie during a mealtime spike there is likely to be a significant difference between them. If you were going to base a decision about either corrections/bolus insulin or hypo treatment on a Libre reading which was above or below range then you would usually check with a finger prick first and base those decisions on the finger prick if there was a significant difference. Usually within range and particularly if the Libre shows an horizontal arrow (meaning your levels are reasonable stable) then it will give a close enough reading to a finger prick.

Anyway, it sounds like you are making great progress and I sense that you are feeling a bit more confident about coping. It is good that the finger pricks are now becoming more mundane and less stressful. Other aspects of your management will follow suit as you get used to things. There will however be days when things are frustrating and nothing seems to work as it should despite your best efforts. Unfortunately I had one of those days today, ao thanks for asking but sorry I couldn't give a more positive reply. It just happens and sometimes you just have to accept that it was a difficult day and write it off from your memory and hope that tomorrow is a better one... (Fingers crossed emoji)

 

[LittleSunflower]

Hi. Good to hear that you have managed OK without the Levemir.
As regards the differing readings between Libre and finger prick BGs Libre is not so accurate outside of target range and lags about 15 mins behind your BG levels so if you test at a time when your levels are changing quite rapidly ie during a mealtime spike there is likely to be a significant difference between them. If you were going to base a decision about either corrections/bolus insulin or hypo treatment on a Libre reading which was above or below range then you would usually check with a finger prick first and base those decisions on the finger prick if there was a significant difference. Usually within range and particularly if the Libre shows an horizontal arrow (meaning your levels are reasonable stable) then it will give a close enough reading to a finger prick.

Anyway, it sounds like you are making great progress and I sense that you are feeling a bit more confident about coping. It is good that the finger pricks are now becoming more mundane and less stressful. Other aspects of your management will follow suit as you get used to things. There will however be days when things are frustrating and nothing seems to work as it should despite your best efforts. Unfortunately I had one of those days today, ao thanks for asking but sorry I couldn't give a more positive reply. It just happens and sometimes you just have to accept that it was a difficult day and write it off from your memory and hope that tomorrow is a better one... (Fingers crossed emoji)

Sorry to hear about how your day was yesterday, I hope today is better for you. The sun is out again which is always encouraging for a good mood 🙂 hugs!

I have a question in regards to painkillers; do you know or think it’s ok to take the Nurofen Express period pain soft capsules at all? I usually always take them for my menstrual cramps but since being diagnosed, I’m a bit wary.

 

[rebrascora]

Thanks for good wishes.
There should be no problem with the pain killers. Insulin that you inject is not significantly different to insulin that you produce yourself so there should be no contraindications and you are on such a tiny dose anyway. I have certainly used both ibuprofen and paracetamol recently for muscular pain and headaches.
Not sure if anyone has mentioned it but you will see changes in your BG levels and basal needs throughout your monthly cycle. Not something I have had to contend with as I was diagnosed during the menopause but don't worry too much if you see some BG disruption and in fact be why your levels were spiking so badly last week for a few days.

 

[LittleSunflower]

I’ve had my blood test at the hospital this morning.
I’ve also had a form (D202) from the DVLA about sending my license back for a 3 year medical review license. I informed them about my insulin online.
What exactly do I need to send back, the complete declaration, my license and the paper part of my license? Can I still drive during the time they have my current license and are issuing me with the new one?

 

[Robin]

You can normally carry on driving if you fulfil the criteria under 'Section 88'. This seems to read that you need a positive statement from your doctor that you are fit to carry on driving (not just that, they haven’t said you can’t.)

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/695575/inf188x6-can-i-drive-while-my-application-is-with-dvla.pdf

Im sure my GP said, when she told me I had to inform the DVLA, something along the lines of, 'but you can carry on driving while you wait for your new licence' and that’s all I needed.

I don’t think you need to send the paper bit of your licence back, as I believe the need for these was scrapped a few years ago.