Scared

[Mammabear1973]

Hi

This is a long story I’ve shortened as best I can

I have diabetes t2 & fibromyalgia (ME & Spondylitis)
Since starting Insulin I gained 4 stone

I went to an appointment at a pain management clinic in November & was told the only way to get better is lose weight & exercise & not take medications!

I stopped my insulin December & lost 30lb already
I stopped checking bloods - until tonight (was on 75ug of Absafajar pen)
Had a meds review - they didn’t ask about why I’m not ordering anymore just said Jake sure I follow pain clinic advice & lose weight- that wasn’t a meds review.. they dint know I’ve lost 30lb - they didn’t ask

I just checked with my Tee 2 monitor and they are 32.7

I’ve been eating one meal a day & drinking 3-4 litres of sugar free squash a day

When diagnosed the nurse said I would never have a hypo but on insulin I had 3 where my bloods dropped to 3.2

The diabetic nurse at the surgery is not very helpful

I feel scared & lost
I’ve been let down by several professionals so don’t trust anyone

I dint know the point of this post
Sorry

 

[Drummer]

Hi

This is a long story I’ve shortened as best I can

I have diabetes t2 & fibromyalgia (ME & Spondylitis)
Since starting Insulin I gained 4 stone

I went to an appointment at a pain management clinic in November & was told the only way to get better is lose weight & exercise & not take medications!

I stopped my insulin December & lost 30lb already
I stopped checking bloods - until tonight (was on 75ug of Absafajar pen)
Had a meds review - they didn’t ask about why I’m not ordering anymore just said Jake sure I follow pain clinic advice & lose weight- that wasn’t a meds review.. they dint know I’ve lost 30lb - they didn’t ask

I just checked with my Tee 2 monitor and they are 32.7

I’ve been eating one meal a day & drinking 3-4 litres of sugar free squash a day

When diagnosed the nurse said I would never have a hypo but on insulin I had 3 where my bloods dropped to 3.2

The diabetic nurse at the surgery is not very helpful

I feel scared & lost
I’ve been let down by several professionals so don’t trust anyone

I dint know the point of this post
Sorry

I have no expertise on type 1 but I know that blood glucose levels of 32.7 are very definitely not right.
Please reconsider using insulin, cautiously, to reduce your blood glucose, or call 911 or go to A&E particularly if you begin to feel unwell, as rapid weightloss and high blood glucose are danger signals not to be ignored.

 

[Mark72]

Hi Mamabear1973, welcome to the forum.
Are you from the US by any chance? For UK measurements 32.7 would be incredibly high but for US scale it looks really low. Neither's good and might need medical attention. It might also be worth measuring again to make sure nothing was wrong with the last test.

 

[everydayupsanddowns]

Welcome to the forum @Mammabear1973

Sorry to hear what a difficult time you have been having. Managing multiple conditions which have different needs can be really challenging. Especially if the advice you are getting from different healthcare professionals isn’t communicated clearly and in the context of your health as a whole. I’m wondering whether that might be what is happening here?

I wonder whether the pain clinic might have only been talking about pain medications when they mentioned weight loss and no meds?

Did the nurse who said you wouldn’t get hypos say that before you had started on insulin? The risk of hypos is certainly something you should have been told about when you started on insulin, as it is a medication specifically intended to reduce blood glucose levels.

A glucose level in the 30s is very high, and at the very top of the range that UK meters will read before they simply report “HI”. You must be feeling extra fatigued and pretty grim at that level

It really needs urgent help and attention. I would urge you to contact NHS111 for advice. Particularly if you have breathlessness, nausea, abdominal pain, or a ‘pear drop’ smell on your breath.

Insulin by itself should not cause inevitable weight gain, but it can be associated with gaining weight because it allows the body to access food energy, which it is unable to do with insufficient insulin present. Insulin allows food energy from carbohydrates to be metabolised. So a person can continue eating the same amount of food, but instead of the glucose staying stuck in their bloodstream causing havoc, it is able to get into cells, be used by muscles, and any excess energy to be stored as fat.

It’s why people who are developing T1 (where they have little or no insulin) often lose weight before their diagnosis. Sometimes dramatically.

I’ve been taking insulin every day for over 30 years, and while my weight has risen and fallen during that time, that has always been due to the amount of food energy I’m taking in that the insulin is processing, rather than the insulin itself. I’m still roughly the same weight I was when diagnosed, give it take a kilo or two.

Please restart your insulin to begin to reduce your glucose levels as a matter of urgency.

Then look at available options for weight loss while taking sufficient insulin to manage your glucose levels.

 

[rebrascora]

Really sorry to hear about your situation and by the sound of it, the misinformation you have been given.
Firstly, have you double checked that finger prick reading of 32.7 Whilst I suspect it is a genuine result because you have stopped your insulin, it is always important to double check any result which is surprising or not what you expected. If levels are genuinely that high then please get some urgent medical advice and that should almost certainly involve restarting your insulin but perhaps not immediately the full dose you were on before as a sudden drop in your levels is not good for the body either, if it has been running high for so long.

Did you suddenly just stop the Abasaglar or gradually reduce it? You should have been given guidance about reducing it slowly alongside dietary changes and plenty of testing during that period, so that insulin doses were only reduced when your levels were low enough to suggest you were ready for a reduction.

Hypos are always a risk when using insulin and you should always be prepared for them by carrying testing kit and treatment like glucose tablets or jelly babies wherever you go, including by your bed at night.
I average just under one hypo a day but they are mostly very mild. It sounds like you were not getting them very regularly if you only had 3, but less frequent ones can be much scarier and more debilitating. I can remember my first few hypos and they were quite traumatic especially as my levels were dropping from pretty high to low. Now keeping my levels relatively steady below 10 most of the time and just having slight dips below 4, means that I get a slight sensation of being low but without the panic and shaking and adrenaline rush and I can just eat a jelly baby or 2 and carry on more or less as normal although obviously I cannot drive after a hypo. Mostly mine occur at night these days and I just eat a jelly baby and go straight back to sleep.

Levels as high as 30mmols/l warrant urgent medical attention as they put you at serious risk. Please double check with another finger prick test and then get some help today and please let us know how you get on.

 

[CliffH]

Hi

This is a long story I’ve shortened as best I can

I have diabetes t2 & fibromyalgia (ME & Spondylitis)
Since starting Insulin I gained 4 stone

I went to an appointment at a pain management clinic in November & was told the only way to get better is lose weight & exercise & not take medications!

I stopped my insulin December & lost 30lb already
I stopped checking bloods - until tonight (was on 75ug of Absafajar pen)
Had a meds review - they didn’t ask about why I’m not ordering anymore just said Jake sure I follow pain clinic advice & lose weight- that wasn’t a meds review.. they dint know I’ve lost 30lb - they didn’t ask

I just checked with my Tee 2 monitor and they are 32.7

I’ve been eating one meal a day & drinking 3-4 litres of sugar free squash a day

When diagnosed the nurse said I would never have a hypo but on insulin I had 3 where my bloods dropped to 3.2

The diabetic nurse at the surgery is not very helpful

I feel scared & lost
I’ve been let down by several professionals so don’t trust anyone

I dint know the point of this post
Sorry

This sounds like a terrible situation for you: I'm very sorry. Whilst none of us on here can replace the health professionals whom you undoubtedly need, hopefully at least you can trust that we have no hidden agenda other than to support you with advice and empathy as best we can, from the position of being fellow diabetics.

 

[everydayupsanddowns]

How have things been this week @Mammabear1973 ?

Hope things are getting a bit easier for you