Omnipod Unwell

[Tracie1212]

So here I am 6 weeks into using omnipod still feel unwell with breathlessness, chest feeling tight. Tingling tongue, feel like throat is closing up.

I've changed insulin from novorapid to Apidra but still same symptoms as above saw doctor yesterday who thinks it's an allergy but can't be specific . Had an ECG which didn't show anything severe, plus oxygen levels checked although at the time symptoms had eased - typical! I have been given inhaler and antihistamine but still experiencing these symptoms regularly today, I feel very unwell.

Has anyone stopped using Omnipod and for what reasons?

I am at a loss with what is going on.

 

[ElkBond]

Could you try going back to pens to eliminate the pod as a reason..or to confirm it? It could be something else.

 

[Tracie1212]

Yes think that's what I will do fed up of feeling unwell. I will have to ask dsn about transition back to pen as in do I stop using omnipod and start immediately with insulin dose used before omnipod.

Do you use a pump?

Thanks for your reply

 

[kitedoc]

Before you give up the pump please try something.
When the breathing and tingling starts try breathing in and out of a paper bag you keep handy. The idea is to make the bag inflate and deflate.
It your breathing slows and your tongue tingling eases please see your doctor about what happened.
If nothing changes at least you have eliminated another possible cause.
Best Wishes.

 

[porl69]

@Tracie1212 what have your bloods been like during these episodes?

 

[ElkBond]

@Tracie1212 I am on Omnipod yes, I have no issues with it.

If you do have a week or twos break from Omnipod make sure you are ready to go back to pod if anything goes crazy and speak to your care team as well.

Edit: I second porl69 about levels during pump, could you be running a bit high while you have transitioned to pump?

 

[Tracie1212]

Thanks for your replies.

It's not anxiety or hyperventilating it happens quickly and suddenly. Before diagnosed and ending up in hospital 17 years ago I was treated for stress. I was borderline coma and spent christmas week in hospital being treated for type 1 diabetes.

My bloods have varied but no specific pattern I have seen my doctor who thinks it's an allergy but can't be specific. He has prescribed strong longer lasting antihistamines and inhaler to open up the airways.

It's not unknown that allergic reaction can be caused by:

Type or brand of insulin, infusion set cannula, metal of needle, tape or adhesive, preservative in insulins.

My pump failed last evening and I became unwell very quickly with blood sugars and ketones rising. My chest became tight , I was very breathless and dizzy. I changed my pod and found a lot of insulin around the site. Followed the guideline flowchart did correction dose , drank a lot of water and had pen ready to inject if needed. I must say when feeling so ill it's very hard to stay focused on what's needed. Managed to stabilise before bedtime went to sleep then awake at 4 with lows of 2.

My ongoing symptoms are the same as described above I monitor blood glucose and ketones.

Have requested Freestyle control Solution to test my meter is working properly.

Seeing pump consultant next week I know she will say it's not diabetes but I feel it's the medication, tools used to treat it.

That being said there are days when I feel really well probably 2 days out of 7 just wish I could pinpoint what is causing these episodes where I am left feeling so unwell.

Thanks again for your help.

 

[Jenny15]

As a T2 I won't comment on T1 matters but I want to comment on respiratory matters.

If you don't already have one, a pulse oximeter for measuring SpO2 at home may be handy. At the very least it may reassure you that you're getting enough oxygen when you have shortness of breath. I know how scary it is to have this problem.

They're fairly cheap to buy, I'm guessing in the UK they'd be under 60 quid but I have no idea. You might be able to borrow one from the hospital. If they can lend you one that provides continuous monitoring, even better.

Glad to hear you have an inhaler and stronger antihistamine. As you will know, the steroid in inhalers can affect BGs. Depending on the type of inhaler, you may need a volumetric spacer to ensure efficient drug delivery. It also reduces the steroid dose needed and can protect your oral mucosa from absorbing too much steroid.

Not sure if you live alone but if you do, would it be practical to ask someone to stay overnight to help if you have a sudden crash of BG levels and it's hard to stay "with it" enough to manage? I realize it's impossible to know whether such an episode will happen again, or when. I'm just a cautious soul. By the sound of it you did extremely well to deal with the episode.

I hope this difficult time gets resolved soon.

 

[Jenny15]

A quick comment on your inhaler type. Ventolin is the first line choice for immediate response to shortness of breath and it is very good at that. There are newer inhaler drugs for use on an ongoing basis for asthma that are far more effective than their first line predecessors. They work differently and one of them might be a good addition to your toolkit for managing episodes.

I wonder if your doctor should refer you to the respiratory department for assessment, or even to an allergist? Normally I would think a diabetologist/endo would know what insulin pump components or insulin brands are most likely to cause allergies but maybe your doctor should consult his peers and/or other medical resources about this area of medicine, since it may be such a rare issue that only the top endos deal with it.

I'm not knocking him... he's done the right things by giving you certain meds... I just want the gold standard treatment for T1s with fairly major difficulties like this. With my own "other" medical conditions I often have to get across to a specialist just how much a medical issue is affecting my life, even if it's a likely temporary issue.

 

[Tracie1212]

Thank you so much for your reply @Jenny15

I will go back to my doctor this week and request a referral to respiratory department and ask if he can arrange a pulse oximeter. I spoke to my dsn last week who advised the pump consultant can refer me to an allergist. I hope I can last another week! Thank you for recognising it is a major difficulty for me. I keep telling medical professionals the levels may be good but it's how I feel too. They treat it but don't live with it.

I don't live on my own my partner is supportive as much as he can be.

Wish I could eat what I wanted I've lost 7 pounds in weight because I feel so unwell when I eat. Dsn knows this.

 

[Jaylee]

Hi @Tracie1212 ,

I appreciate you don't live alone. & symptoms can vary...

This is a wild long shot. But when was the boiler serviced in your accommodation?

https://www.nhs.uk/conditions/carbon-monoxide-poisoning/

 

[Tracie1212]

Hi @ jaylee

Thanks for your message.

Boiler is serviced regularly we have a carbon monoxide alarm.

 

[Tracie1212]

After feeling very unwell I came off my omnipod yesterday I discussed with Dsn and she gave me advice on doses to take for lantus and novorapid. Before the changes I checked ketones which were 0.2.

I also said to the nurse that the dose recommended for lantus seemed very low I was advised it takes 3 days for body to build up insulin and adjust. It's half of what I was on before I started on pump?

Nurse based this on pump readings.

Before pump I was on 21 units of Lantus. Novorapid correction dose is 1 unit should reduce by 3.

Nurse advised my levels would run higher but she didn't say if this would apply to ketones too.

I have been putting in corrections doses of novorapid to try bring my levels down but they seem stuck on 15. My ketones are now 1.3 the highest they have ever been. I don't feel unwell and the cause of them being high is the low insulin dose. I am drinking lots of water as I type this. Not going to eat until gained better control. It's been a long night as will the day be.

For the record I felt so much better after injection breathlessness and tightness of chest has gone. I feel I am the exception to the rule there may be no record of this with pumps but this is what happened to me.

I am speaking to dsn later about my concerns.

 

[Juicyj]

The most important aspect of this @Tracie1212 is that you get your BG levels back into range and feel better. It really doesn't matter what method you use, the most important thing here is you and how you feel and if that means injections then that's the way forward. As you know it will take time to settle back into a regime so just take it easy on yourself and well done for having the courage to change this. Let us know how you get on with your DSN ?

 

[Tracie1212]

Thanks @Juicyj appreciate the support.

I don't understand why the nurses are advising me to use smaller amounts of Lantus I said yesterday it didn't make sense when I was on one dose of 21 lantus. They say its based on pump doses???? I don't want to replicate that regime it doesn't work for me.

So today I've spent hours in A&E with Ketones at 2.4 the novorapid correction adjusting didn't work. My BMs started to reduce eventually but Ketones remained stubborn my theory is the small amounts of background insulin not enough plus I felt awful again. I was put on saline solution drip but that had little effect. I was told I do not have ketoacidocis and pH levels normal so got discharged. I ate small sandwich then injected novorapid, felt unwell as did not have enough background insulin in. Injected Lantus when I got home and feel much better for it. Spoke to another Dsn in A&E who said she didn't understand why I was told to use those small doses as Lantus doesn't work like that. We agreed to put the dose upto 9 at night and 9 in morning.

Like you say this is about what works for me just hope my levels get back to normal soon.

Thanks