Unstable bloods

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Stuart60

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Relationship to Diabetes
Type 2
Hi All
I have not been here for a little while this is because I was involved in a serious RTA which the Police are saying was a medical event on my part caused it. Being type 2 diabetic I have just been doing finger prick tests and taking Metformin twice a day and getting GP tests once a year where despite me reporting some high and low readings was told from the HbA1C tests that my glucose readings were stable.
The RTA was very serious and if it wasn't for the Air Ambulance I would not be here to tell the tale. I was released from Hospital after 6 weeks and following this my neuropathic symptoms in both my legs and now my hands & arms have got worse, my GP Practice nurse said she would make a referral to the Walton Centre. I was called to a first appointment there and the Consultant started talking about me having an epileptic seizure causing the accident, when I told him this is not what I saw the nurse for and explained I am type 2 diabetic and get neuropathic pain he initially said this wouldn't be the cause as my diabetes is well controlled, I objected to this and he called his senior in who told him to also arrange for tests for the neuropathy as well as epilepsy.
On the day of the accident my morning finger prick test said 4.8 and as this was near to normal and when I spoke to the nurse in the hospital she said it wasn't that low and as I had by the time of the accident had my breakfast my blood sugars would be higher when the accident occurred about 1.5 hours after.
Since leaving hospital I got to see the Diabetes nurse specialist at my surgery and she fitted me with a Freestyle Libre 2, well the results of this are quite interesting and I would be grateful if anyone here can relate to this or understand what is going on.
The sensor went on in early October and sure enough for a couple of weeks things appeared fairly normal however suddenly this last week and with no change in diet or activity I started to have serious lows going down as far as 2.4 and so far this month I have had 11 hypo events, my girlfriend also noted that on 2 of these occasions I was unresponsive other than for some strange burbling noises and lip smacking as she described it, I have spoke to my GP about this and said it was nothing much to worry about, I pointed out that the numbers were very changeable but he seemed unconcerned.
Interestingly today overnight numbers were quite normal and was about 5.8 I ate breakfast about 30 minutes later it dropped suddenly to 2.8 and stayed low for about an hour then within 15 minutes went up to 14.3, to me that seems quite changeable to me.
Do others have such instability? TIA
 
Just playing catchup on the posts, not really followed this part of the forum before as had no technology I note a number of posts talking about the unreliable readings from the sensor particularly at night from the sensor being squashed due to being slept on, I should say that because of my injuries I do not sleep on due to my injuries
 
Do you do a finger prick test to verify these lows?
 
harbottle said:
Do you do a finger prick test to verify these lows?
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Not all of them but have done.
The diabetes nurse in practice told me not to do this as it will invariably give a different reading and indeed does but as I was concerned I have done it a few times over the last weekend when it was so low and my GF commented on me being unresponsive, the readings were a little different but on a little bit for example a 3.2 sensor reading on finger prick came back at 3.4.
 
3.2 and 3.4 are pretty much the same. Also, as you have noted, sensors are not perfectly accurate, especially at extremes so it is worth doing a finger prick to check. Finger pricks also are not deadly accurate but are usually more so than the sensor and so you can check that the sensor isn’t wildly wrong.
 
So sorry to hear that you have had such an horrendous accident. I hope you are recovering well now.

It sounds to me like you might be experiencing Reactive Hypoglycaemia as at least 2 of the incidents you have described occurred after breakfast. Can I ask what you have for breakfast? Can you correlate other incidents to occuring after meals and in particular carb rich meals?
Can you tell us what you normally have for breakfast, or what you had on the two mornings that you mention.
 
rebrascora said:
So sorry to hear that you have had such an horrendous accident. I hope you are recovering well now.

It sounds to me like you might be experiencing Reactive Hypoglycaemia as at least 2 of the incidents you have described occurred after breakfast. Can I ask what you have for breakfast? Can you correlate other incidents to occuring after meals and in particular carb rich meals?
Can you tell us what you normally have for breakfast, or what you had on the two mornings that you mention.
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Thank you for your response. On the mornings in question like most mornings apart from a Sunday Bacon barm which wasn't relevant to these events breakfast is a cup of tea and Malted wheaties cereal.
As the most serious lows and the 2 times it is said I had become unresponsive was early hours of the morning so quite some time after evening meal, I rarely eat carb rich meals now as since the accident I have become very much more aware of my diabetes and the potential affects it could be having on me.
I think my surprise is that the GP and practice Diabetes Nurse say I am well controlled, but as this is based on the Hb1Ac which to my understanding takes an average over a 3 month period doesn't take account of these sudden changes such as today given as prior to this last week the readings were pretty unremarkable since the sensor was fitted at the beginning of October, all that month and the beginning of this month apart from a few short periods of high readings between 10 and 14 and nothing below a 4.8 then out of the blue a week like the last week I have documented in my original posting, so if it then calms down now till after Christmas so we have 3 months of data, that one week of spikes when taking the average over the 3 months would likely show a mean figure that is reasonably well controlled thus my surgery team are not taking any action but the information as used by the neurologist is misleading
Thankfully because of this accident and now the fitting of the sensor gives a bit more insight and as a consequence because the GP is not a specialist I have now been referred to see an endocrinologist so hopefully get some results from that, it is just a shame it took such a serious accident where I so nearly lost my life to get investigations started. Unfortunately I am not recovering to well, we are not 5 months from the accident and it appears the operation on my femur was not successful so will need further surgery in the new year, also the issues with my broken clavical and wrist were not helped by the hospital discharging me on the wrong type of crutches. But at least I am still here to see my Grandchildren grow up.
 
The malted wheaties might certainly be enough to trigger RH but unusual for it to occur during the night. You are absolutely right about HbA1c, particularly with the likes of RH because the highs and lows cancel each other out and you are left with what looks like a good result. It was the same for Type 1 diabetics in the early years before CGM sensors. You could get a nice low HbA1c but it could easily be because you were having a lot of hypos, particularly nocturnal hypos that you might not even be aware of. CGM and time in range is certainly a big step forward but primary care clinicians (Doctors and nurses at GP surgery) assume, particularly if you are not on any medication which causes hypos, that HbA1c tell the whole story.
Thankfully your situation is quite rare, but unfortunately that means that medical professionals don't have a great understanding of it and you need someone very specialized and with a particular interest in it, to help you manage it well, so it is good that you have a referral to an endocrinologist.
What level do you have your Libre alarms set at? It might be a good idea to have them set well above 3.9. I have mine set at 4.5 but my levels mostly drift rather than rise or fall sharply because I follow a low carb way of eating. Many other Type 1s have it set higher still at 5 or even the maximum which I think is 5.6.

Have you been given advice on treating hypos? It sounds like you are having seizures with them if you are unresponsive. Does your girlfriend know what to do in these circumstances? You might need to consider asking for a Glucagon kit which is an emergency injection kit to stimulate your liver to release glucose.

Have you had a scan of your pancreas to check for any abnormalities. Obviously the pancreas produces and releases insulin so some abnormality there would be something to look for that is causing a malfunction. I think we had a young member once who had to have part of her pancreas removed as a new born baby because she was over producing insulin.

I guess it is the unpredictability of it which is difficult, especially if you have weeks of normality and then it happens out of the blue. Do the Libre graphs show a big spike in levels before the hypo events. Just wondering if a high alarm might give you even more advance warning of an imminent drop, particularly if you now follow a lower carb diet and therefore hopefully don't go high normally.
 
I ate breakfast about 30 minutes later it dropped suddenly to 2.8 and stayed low for about an hour then within 15 minutes went up to 14.3, to me that seems quite changeable to me.
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That sounds strange.

Reactive Hypoglycemia happens when levels rise quickly (And high) after eating and then go low 2-5 hours after eating due to a sudden rise in insulin levels. What you are seeing is a drop followed by a sudden rise. What happened it went up to 14.3?

See here:

 
Thank you for your detailed reply,
My alarms are set at 4.0 for low and at 13.0 for high, this is what my Diabetes nurse input on it but have just noted I can change it so will up it to 4.8 and see if that gives time for action earlier, though have to say on occasions where I have started to go low during the day so more able to respond, taking Jelly Babies has had no effect.
The only advice given to me or my girlfriend is if I have a low eat 4 Jelly Babies which obviously in the middle of the night if I am unresponsive is nigh on impossible, my GF says that when I was having the seizure she couldn't bring me around for nearly half an hour so wouldn't stuff Jelly babies into my mouth. She did try to give me Juice drink from a bottle I keep by my bed which I have done for a long time due to having Sjogren's syndrome, she says some went in but when I came around that which I didn't take in was on the pillow.
Yes looking at the graphs on Libreview the low and then subsequent high spikes can occur very quickly, I tend to go low and stay low for quite a time whereas highs occur but fairly quickly come back down. I have not been given a Glucagon kit as yet may be something the visit to the Endocrinologist will implement.
Prior to this the last Hb1Ac which was back in May the diabetes nurse did say she would see where I am after my next test and may speak to GP about me going on insulin as my Hb1Ac at that was a little bit high at about 9.5.
 
harbottle said:
That sounds strange.

Reactive Hypoglycemia happens when levels rise quickly (And high) after eating and then go low 2-5 hours after eating due to a sudden rise in insulin levels. What you are seeing is a drop followed by a sudden rise. What happened it went up to 14.3?

See here:

Click to expand...
Nothing much had happened when it went up to 14.3 due to the injuries I can do very little so was just sat browsing FB and listening to the radio.
Thanks for the link
 
An important thing to know about hypos is that you start absorbing glucose through the cells inside your mouth so if you are eating jelly babies chew them really well rather than a couple of chews and then down the hatch. Roll the chewed bits around in your mouth as you chew them to get maximum effect. Same with orange juice etc, swill it around inside your mouth rather than gulping it straight down. If you lose consciousness, a jar of honey or jam is better than juice which obviously might go into your lungs, but a dollop of honey or golden syrup or jam in between your cheek and your teeth should still absorb without so much risk of inhaling or choking. Yes, it will be messy but can be smeared in with a finger if you aren't thrashing and gnashing too much and is obviously much more concentrated than juice, so less needed to have an impact.

Are you assessing your hypo recovery time by Libre or finger prick? You should finger prick 15 mins after taking your hypo treatment to check that it has worked. A finger prick will usually show that you are recovering by then, but due to the algorithm used in the software, Libre will almost always indicate that you have gone lower still, after 15 mins, which can cause you to eat more hypo treatment and then end up too high, so trust a finger prick over Libre. It usually takes Libre about 40 mins to catch up with your recovery from a hypo, so important to finger prick during that time to check recovery, or at least don't panic too much if Libre still shows you dropping.

Make a list of questions for the endocrinologist. I tend to start a list before I get the appointment date and then keep adding things to it until the appointment day itself. Appointments go so fast and can be quite overwhelming. Obviously the consultant will have questions for you, so you can easily lose track of what you want to ask without a list. It is also a good idea to have an idea of what you might want to achieve from the appointment..... For instance a scan of your pancreas or a Glucagon kit.... or whatever else you learn about when researching. Your girlfriend would probably need some training for the Glucagon kit or she would need to call paramedics to administer it. Also a good idea to have your girlfriend with you at the appointment as sometimes the other person remembers things that perhaps went over your head because you were thinking about some other aspect or question. I took my sister to my first couple of appointments.
It might also be worth keeping a food and drink diary and marking your BG readings and any hypos in it to see if you can figure out any link. I would be wary of alcohol for the time being as that can have an impact on both the pancreas and the liver which are the main organs involved in balancing your BG levels.
 
Hi Barbara thanks for your reply. I do rather tend to chew the jelly babies and indeed most things I eat.
As my girlfriend has only started staying at mine a lot more since the accident as I need a lot of help so possible I had previous hypos that went unnoticed. She said I wasn't thrashing around but the lip smacking made it hard for her to give me the drink.
Given I have Sjogrens I have a gel I use at night to try and help with the dry mouth along with the juice, perhaps I should check to see if that would help with the hypos as not a lover of honey and having a jar of jam by the bed would be a little weird!
My girlfriend would have no issue with a Glucagon kit as she previously worked in the care industry.
Since these incident I have started keeping a food and drink diary, I also make notes in the log on Libreview, being a tech geek I keep a list of questions on my mobile where I have been noting what I want to ask.
I don't drink alcohol so that will be easy though I am currently being tested for liver issues,
 
The Glucagon liquid does not come pre-mixed though, who ever opens it to use has to mix the two elements, plus it's not like a disposable insulin syringe (although you'll never have seen one of them presumably) I've never administered a Glucagon jab either cos my current husband has had that pleasure - the first one just rang 999 cos 20+ years ago they were PDQ and made sure I wasn't anywhere really awkward so I'd usually be safely on the floor out the way of door openings etc.

So we broke the seal on the box and both closely read the instructions but didn't try mixing it or anything. (thereby hangs a tale I won't go into now)
 
trophywench said:
The Glucagon liquid does not come pre-mixed though, who ever opens it to use has to mix the two elements, plus it's not like a disposable insulin syringe (although you'll never have seen one of them presumably) I've never administered a Glucagon jab either cos my current husband has had that pleasure - the first one just rang 999 cos 20+ years ago they were PDQ and made sure I wasn't anywhere really awkward so I'd usually be safely on the floor out the way of door openings etc.
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Morning Jenny
I was surprised to find that the glucagon provided now is premixed in a stable mix. Like you we have never needed to use mine, and I just have to remember to replace it when it goes out of date.
 
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