Odd COVID type question

[ChrisO2]

I have been discussing with my consultant on odd effect that we have noticed. Some background - I have ben using Tresiba for the past three years and it has seemed to be working as it should, in February this year I was put on the Libre sensor system and at almost the same time I received my first round of COVID immunisation this is when things started to go a little odd. As you will all know that Tresiba is supposed to have a very flat basal action but what I was seeing from the Libre results was a large drop in BG about 1 hour after taking my Tresiba ca 11pm then my BG levels would run low overnight slowly increasing, then in the afternoon ca 3pm my BG levels would take off (no afternoon snack) until I was mid teens by suppertime (7pm), I would then try to correct down using my evening Humalog but not very successfully. Then come nigh time I would go through the same cycle. I tried watching this for a few weeks to ensure this was happening consistently, when it was I spoke to my DSN team to get advise and they suggested that I reduce my night time Tresiba dose which I did but I did not see any change in pattern and the pattern appeared to show that the Tresiba was acting in a manor that it is not supposed to. My DSN team then referred the issue to my Consultant and after a conversation with them I was asked to try a "Carb free day" which I duly tried and low and behold we saw exactly the same pattern.

After having a follow-up conversation with the Consultant today they have decided/agreed that Tresiba is not behaving as it should (I am the first patient that they have seen with this issue and they have recently attended a Diabetes UK training/lecture series on "Diabetes and Covid" and this issue was not mentioned). So the plan is to pull me off Tresiba and put me back on Lanthus which we will do in the next week.

The question for all that read through this long missive is - has any one else noticed a change in the way their long acting Insulin is behaving post either Covid or Inoculation ?

My thought for sometime has been that my body's pH has changed, post inoculation, which is causing the Tresiba to breakdown quicker than normal - but this can not be proven as no one is investigating body pH levels - but the kicker here is if this is the case all of the long acting insulins depend on a certain pH level in the body to trigger it's activation, so will all long acting Insulins now no longer work properly with me - Answers on a postcard for this one.

 

[Leadinglights]

There are many people reporting that their blood glucose and insulin requirement has been all over the place following COVID vaccination. People have had to make adjustments in their dose. It does seem to be something that there was no warning about when they had the vaccine.
If you do a search then you should find some of the posts about peoples experience.

 

[ChrisO2]

When talking to the DSN team, they also flagged the fact that people seem to be having issues in getting the dosage corrected post inoculation, but my problem is more fundamental - Tresiba is not working properly i.e. it is no longer a flat activation curve/line.

 

[Inka]

That’s very interesting @ChrisO2 It sounds like a potentially different problem to the blood sugar issues with the Covid vaccine because you’re positing that your body chemistry might have been changed. I’ve never used Tresiba, and I’m on a pump (so no basal insulin). However, coincidently I took a pump break around the time of my 2nd vacc so was on basal/bolus injections. I didn’t see my basal insulin affected but I was using an Isophane.

I think @Amity Island uses Tresiba.

 

[ChrisO2]

All of the "long acting insulins" work in one of two ways - they are all kept stable in their respective pen/cartridge by being in a slightly more acidic (lower pH) medium than is in the body;

The older types eg Lanthus have a chain added to the insulin molecule which makes it inactive, this chain is then cleaved when the pH changes after injection this cleaving happens slowly and the result is an active insulin molecule and a bit of waste chain which gets excreted via the kidneys;

The new Tresiba type has two molecules of insulin bound together as a dimer making it inactive but after injection over time this dimer is cleaved or breaksdown thus releasing two molecules of insulin.

Both these system depend on a known difference in pH between the injection material and the body, this is detailed (vaguely) in the patient notes.

 

[rebrascora]

I am one of those who suffered BG turbulence following my vaccine, but for me after a few days of up and down I had to gradually increase my basal every few days until eventually I was taking double my normal dose. I went from 16-18 units of Levemir a day gradually up to 35units at one point about 3 months after the first vaccine (Oxford AZ) and I am just back down to my pre vaccine basal doses now.
Interestingly thinking back, I suffered a bit of gastric upset at the time and was glugging Gaviscon more than occasionally to try to help. I even said to my sister I thought I might have an ulcer but I was suffering quite a bit of reflux too. I am not sure if the body's PH altering would be enough to change stomach acid to that extent but my system was quite unhappy for a good while but thankfully seems to be back to normal now. I know it might be chicken and egg as regards an upset stomach causing increased basal needs but it was more than a coincidence that it happened the week after my AZ vaccine I think when my basal needs had been pretty stable (+/- 2 or 3 depending upon levels of exercise) since my honeymoon period ended .
I was working on the principle that perhaps the vaccine put my immune system on alert and maybe encouraged it to have another go at my remaining beta cells (if I have any left) but since I have now returned to pre vaccine basal doses that is a less likely explanation.
There was at least one Type 2 forum member with normally extremely stable fasting readings in the 5s who had a good few weeks of consistent 6s every day following the AZ vaccine and has just come back down into consistent 5s again last month. I know that is a minimal change compared to the double figure readings I was battling but it was still notable and consistent.

I didn't contact my diabetes clinic about the problems I was having, I just managed the situation as best I could with QA corrections and then basal increases every few days, always aware that I might be edging closer to a cliff edge and then on 12th May I stepped off the edge and hypoed 7 times and then the slow reduction started.
The other thing to note is that my basal needs have changed in profile and whereas before I needed more basal insulin in the morning and very little at night, now my readings are really steady in the morning but have started to rise in the late afternoon/evening and I have to inject corrections in the afternoon now instead. It is all very odd and has been quite frustrating trying to keep control of things.
I will be mentioning it to my consultant when I speak to him at the end of this month but it is really interesting to compare notes with other diabetics and discuss what might have been going on. I like your theory about the PH change! I didn't realize that that was how the basal insulins worked.... (edited to add that it probably doesn't explain why my basal needs doubled or why my basal insulin needs profile has changed. To me it seems to be a change to how my body works rather than a change in how I utilize the insulin, if that makes sense. So perhaps for you Tresiba is working the same and still producing a flat line profile but your body's needs have changed resulting in the highs and lows.)

I think there is a lot more to be understood about the relationship between Covid and diabetes as well as the vaccines' impact. I didn't feel it was appropriate to yellow card the vaccine because I couldn't directly link what I was experiencing to it. It has really only been through sharing experiences with other forum members that you start to see some patterns but as with all things diabetes the patterns are varied and it has affected people very differently.

 

[Bloden]

Hi there @ChrisO2. I take Tresiba but haven’t had your experience since being jabbed. My BG control has been more of a challenge - my BG’s been all over the place! - like others have reported, but I put it down to my routine being non-existent cos of lockdowns, etc.

I hope the switch back to Lantus goes smoothly.

 

[everydayupsanddowns]

Sorry to hear that Tresiba seems to be not covering your basal needs so appropriately.

Have you experimented with a fasting basal check over various sections of the day to see how Tresiba is coping?

Most often used as part of pump therapy, it can also be extremely useful as part of MDI. There’s a thorough write up here:

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!

www.mysugr.com

I can‘t comment on the possibility of your body pH having been significantly changed by the vaccine, but it seems a bit unlikely to my thinking.

What I have observed over the 8-10 years I have been using an insulin pump (especially when paired with CGM) is how variable and changeable my own basal needs are. An insulin pump allows you to make tiny changes to your basal rate throughout the entire 24hours, so rather than hoping for a flat profile long acting insulin that runs roughly in the mid-point of my basal needs, I can develop a rising and falling basal pattern to provide more basal insulin when I need it, and less when I don’t.

What I’ve observed (many pump users find the same) is how variable my needs are, almost nothing needed at some points of the day, and much more at other points. Plus that some times my basal pattern needs to all notch up, or down but stay the same shape… and other months/seasons it completely changes shape.

It was clear why I had always struggled with Lantus - and would have with any flat-profile basal insulin.

I wonder whether the same may he happening for you? Perhaps your basal needs have simply changed ‘shape’ coincidentally with your vaccination (or as part of BG upheaval following it) and now Tresiba’s flat action is significantly too much at some times, yet nothing like enough at other times?

 

[ChrisO2]

We have shown that the Tresiba is not giving a flat response over an extended period of time (4 months), I have also carried out a "carb free day" which also shows that I have a large drop in BG shortly after injection and then a steady slow increase across the day until about 3pm when there is a steady and very significant rise (basically the Tresiba is no longer working).

I was on Lantus in the past - pre Tresiba and I used to take a split dose in the morning and the evening because it does not give a full 24 hour coverage. The issue that I am thinking of is that if my body chemistry has changed then Lantus may also not behave as expected.

I do not qualify under Nice rules for a pump (as discussed with my Consultant) so this option is also off the table.

 

[mikeyB]

Whatever else is going on, it’s not your body’s PH level changing. That’s set to very tight range, and variation from it only occurs in life threatening illness. A vaccination can’t possibly change that.

I’m sure the issue is with Tresiba, because that is insulin made ultra long acting by the addition of polymers, which are molecules with the possibility of being recognised as alien by the body. That’s what might have changed. In truth, it was only developed because the patent on Lantus was about to expire. I would never agree to use it, because with insulin once you inject it you can’t take it out.

Indeed, my control was made much easier by abandoning Lantus, and going on to split dose Levemir.

 

[Thebearcametoo]

My understanding is that tresiba is very affected by differing levels of exercise so I’m not sure I would expect a flat profile with it. It’s not been our experience when my daughter has been on it although she’s generally got on well with it. If you have the data that shows for you the only change was when you had your vaccine then obviously something has changed though and the best option is to change your basal. I know our paeds clinic are going to stop putting patients on tresiba as there is too much variation with it but that may be specific to children and their changing needs with growing and variations in their exercise etc.

 

[Amity Island]

I have been discussing with my consultant on odd effect that we have noticed. Some background - I have ben using Tresiba for the past three years and it has seemed to be working as it should, in February this year I was put on the Libre sensor system and at almost the same time I received my first round of COVID immunisation this is when things started to go a little odd. As you will all know that Tresiba is supposed to have a very flat basal action but what I was seeing from the Libre results was a large drop in BG about 1 hour after taking my Tresiba ca 11pm then my BG levels would run low overnight slowly increasing, then in the afternoon ca 3pm my BG levels would take off (no afternoon snack) until I was mid teens by suppertime (7pm), I would then try to correct down using my evening Humalog but not very successfully. Then come nigh time I would go through the same cycle. I tried watching this for a few weeks to ensure this was happening consistently, when it was I spoke to my DSN team to get advise and they suggested that I reduce my night time Tresiba dose which I did but I did not see any change in pattern and the pattern appeared to show that the Tresiba was acting in a manor that it is not supposed to. My DSN team then referred the issue to my Consultant and after a conversation with them I was asked to try a "Carb free day" which I duly tried and low and behold we saw exactly the same pattern.

After having a follow-up conversation with the Consultant today they have decided/agreed that Tresiba is not behaving as it should (I am the first patient that they have seen with this issue and they have recently attended a Diabetes UK training/lecture series on "Diabetes and Covid" and this issue was not mentioned). So the plan is to pull me off Tresiba and put me back on Lanthus which we will do in the next week.

The question for all that read through this long missive is - has any one else noticed a change in the way their long acting Insulin is behaving post either Covid or Inoculation ?

My thought for sometime has been that my body's pH has changed, post inoculation, which is causing the Tresiba to breakdown quicker than normal - but this can not be proven as no one is investigating body pH levels - but the kicker here is if this is the case all of the long acting insulins depend on a certain pH level in the body to trigger it's activation, so will all long acting Insulins now no longer work properly with me - Answers on a postcard for this one.

Hi Chris,

I hear what you are saying. There is a distinction between basal needs, which in your case have been even for some time and the type of sudden change in need just after injection. Pump users set their basal needs across the day based on their body's needs, which is different to what I think you are finding.

Are you able to clarify this. Have you noticed the sudden drop in blood sugar 1hr after injection happens specifically, exactly, every time you inject the tresiba? So by varying injection times by say an hour forward each day, does a respective drop happen after 1hr after that? This would eliminate or confirm that it is or is not a change in basal needs, but a reaction to the insulin (tresiba at the moment), perhaps caused by a change brought on by the vaccine.

I agree with you about changing insulin, if there is something related to the vaccine then a change in insulin may not resolve it.

 

[trophywench]

It's always hard trying to isolate the different elements which may have caused or affected, whatever the current snag happens to be. Just because something happened immediately after your Covid vaccine or having Roast Beef for your dinner on a weekday, won't mean the jab or the beef either caused or affected the glitch - when there's only you trying to see the actual trees, through the wood.

Is why I like getting different views for my glitches and even though I may not agree with some of them (eg cos I've already tried that) - some might even work - or a combination of a bit of this and a bit of that! ('ere we go again - test test test ....)