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Morgan78

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My name is James. I’m 42 from Ottery St Mary, I have a brilliant wife, and a 6 year old energetic daughter. This is hard for me to write as I’ve had a long hard time of it for the past 6 years.



We don’t know whether I have diabetes. Around the time my daughter was born, we had a series of bad issues. My best friend attempted suicide in our shared flat (I had taken 2 weeks off as he was manically depressed). The day I went back to work he attempted that, and his mother blamed me for not being there. My gran died. My wife’s stepdad died. I lost my job. I injured back and arm powerlifting. They found an issue with my heart, some genetic issue my dad had.

Since then I haven’t worked and I’ve been a stay at home dad. I stopped exercising and put on weight. I had no energy and felt terrible, so they decided I have depression (now it’s been reassessed to PTSD from childhood trauma) and after many tests they said I have fibromyalgia. I had a series of doctors tell me if it wasn’t for the diabetes tests, they would definitely think it was diabetes. All my symptoms are that of diabetes- my grandfather had it terribly. I’ve done as most ‘fibromyalgia’ people do and try a billion different things to have more energy and less pain.

I don’t know what possessed me, but the ‘diabetes’ non-diagnosis has always nagged me. I’ve seen so much research with diabetes being linked to fibromyalgia. I obtained a small amount of insulin and I used a very small amount. Less than quarter of the suggested starting amount. I experienced a day where I had no burning sensation on my hands and feet, I didn’t need to lie down in front of the fan. I can feel my skin and I can feel cold items again. I could see properly and I had the energy to go in the garden. Food tasted wonderful, my mind was clear.



I know I did the wrong thing. I know I can’t say this to a doctor. But does anybody have a name for what I have? My blood readings say I don’t have diabetes but they are surprised I don’t have it and obviously it cannot be treated as diabetes unless it ticks the right box. Could anybody help me?

I’ve had 2 weeks free of symptoms so far, on low doses, after 5 years of sweating constantly, being exhausted and lying on the floor in shorts with a fan on me. Either barely awake supervising my 6 year old, or in bed lying on my side, no covers just a fan. My life has been horrible and this has changed it.
 
As you know we are going to say, please STOP taking the insulin. This is very dangerous, especially if I have read this correctly, and you don't know what your blood sugar is.
I would buy a blood glucose testing meter if you haven't already got one and record your numbers first thing in the morning and before and after eating. This will help see if you have elevated blood sugar levels. You can get a meter in a chemist. Your reading should be between 4 and 8.
 
Go and talk with your doctor. And be entirely, fully, painfully, honest with them. Tell them about taking the insulin. And listen to their advice.
 
Oh bless you, you’ve really been through it.

As has been said STOP taking insulin. It can kill you if you’re not diabetic and self administering is the worst way to go.

What may be more useful if you still think it might be diabetes is to get a testing meter and do a few days of testing: when you wake, before meals and 2 hours after meals. That way you have more data to take to the GP. BUT if they did full testing before to rule our diabetes then that’s not necessary and just means you’re out of pocket.

Fibro is a pain in the arse (and everywhere else) and the drugs that are given to treat it can be a whole mixed bag of side effects. It may be worth having a medications review as changes in dose can be needed after a while or a different medication may suit you better. None of us can give you medical advice. I can tell you my experience with fibro if that might help but everyone has a different experience with it.
 
It's possible for blood glucose (BG) levels to be too low. And this is something that has to be watched for when taking insulin. From what you've said, you're BG is lower than a diabetics. Starting lower, you're more likely to risk a hypo (seriously too low), which can be considered a medical emargancy.
Do try to find a HCP you can talk to. I know you've got a lot going on, and talking about just part of that can be difficult. Please try. Tell them you need to have a good talk about what is going on, and ask for a longer appointment.
 
So sorry to hear of your difficulties and I'm sure we can all sympathise with your desperation but as others have said, taking insulin without monitoring your BG levels or others medics being aware of what you are doing, is highly dangerous. If you went unconscious with a hypo no one would know to check and give you glucose when you are not diabetic. Even small doses of insulin can be fatal.
Which insulin have you been using and how much and how old is it?

I would also agree that monitoring your BG levels without the insulin would be beneficial to see what is going on.
Do you know what tests your GP did for diabetes ie finger prick BG test or HbA1c (blood test sent off to the lab) and the actual numerical results rather than just a negative. How recently were the tests done? Things can change in quite a short space of time and just because a previous test was negative.
A basic BG meter can be purchased online relatively cheaply for approx. £13 We recommend the SD Gluco Navii or the Spirit Healthcare Tee2 as these have the cheapest test strips and you go through quite a few test strips when you first start using them, so we recommend you buy at least one extra pot of 50 with the testing kit as there are only 10 strips in the meter kit.

What sort of things do you eat?
Rather than injecting insulin, you would be much safer changing your diet and reducing your carb intake. If high Blood Glucose (BG) is causing you problems then cutting right back on carbs should have the same effect as taking insulin but with none of the risks. Many of us here on the forum follow a low carb way of eating and feel so much better for it.

Diabetes is not just about sugar but all carbs so significantly reducing your intake of breakfast cereals, bread, pasta, rice potatoes and even healthy stuff like fruit as well as the cakes, biscuits and sweets and sugary drinks should make a huge difference both to BG levels if they are high but also weight loss which sounds like it would also be beneficial to you.
That may sound like there is nothing much to eat (it certainly boggled my mind when it was first suggested) but once you learn what you can eat it all becomes much easier and we can certainly help you with that. Again, a blood glucose meter and testing before meals and 2 hours after will show if you are having an adverse effect from the food you are eating and help you tailor your diet to your body's intolerance. Diet and exercise should always be the first step in tackling Type 2 diabetes.... you didn't just reach for the big guns, you have gone for the nuclear option and it is highly dangerous.
 
I have always felt unwell if I ate what is described as a 'healthy' diet.
I ate low carb, what became known as the Atkins Diet back in the early 70s - I worked for the firm which did the mixing and packing of the diet Dr Howard developed for weightloss which is now the Cambridge diet and thought it was strange that I did not lose weight myself when on a diet prescribed by my doctor.
Diabetes was not diagnosed for another 40 some years, but low carb has always been the right way for me to eat, and that might be what you need to feel well.
You might find it interesting and informative to get hold of a meter to measure your blood glucose. There are various ones which are not expensive to use. I use the Tee 2 from Spirit Healthcare. By testing before and after eating I could see that I had an abnormal reaction to carbs, and by making adjustments to meals which spiked my levels kept things normal.
You might discover that the within limits levels your tests show are because the extremes have not been discovered. The Hba1c test shows an average, and just as the average of 49 and 51 is 50, so is 10 and 90, so you might be having both high and low readings which the tests can not detect.
 
Hi @Morgan78
Sorry to read of the pain you are in and the impact your symptoms have had on your way of life. Hopefully some of the advice is helpful, but just want to reiterate the advice to stop taking unprescribed insulin straight away.
It would be better to go back to your doctor and tell them everything including that insulin had been helping - if you do need it to control your symptoms then it is important that it is done properly under close medical supervision.
 
Just to reiterate how dangerous insulin can be if it’s not given under medical supervision is that it’s used as a murder weapon.
There have been some really well known cases of murder by insulin, from nurse Beverly Allitt killing patients to Claus von Bulöw killing his wife.
Insulin is serious ****.
 
Welcome to the forum @Morgan78

I’m really sorry to hear about the difficulties you are facing, and the symptoms you are experiencing.

I really hope you can have a positive conversation with your GP, explain what has been going on, and find a way forward.
 
Hi James,

Firstly i want to acknowledge that you've been amazingly brave talking to people and telling us what you've done. You know we are going to say you shouldn't be doing this as it could be very dangerous for you and your family. I think you know that already though.

What is your relationship like with your GP? Could you have an honest and frank conversation with them? At resent i think your emotional health seems to be low as well as your physical help. They may be able to put you in touch with people who can help you but you need to be blatantly honest. If not your GP is there a nurse or other health care professional you feel comfortable with?

I hope you get the support you need, its a big step but you'll feel so much better for it.
 
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