A father, trying to understand and help......

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and_why_not

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Hi I don't know if this is the right place to say all this......

My daughter (now 21) has T1 diabetes, diagnosed when she was 2 years old.
I wont bore you with details but she now has mental health issues (including depression, and an inability to communicate with anyone from a medical background) caused by the stress of her diabetes, its treatment and in particularly by doctors, nurses etc failing to listen to her properly when she has reported symptoms and issues with her insulins and treatment.

She has been taking up to 240 units of Mix50 insulin a day, and tests in hospital have shown that she fails to respond to insulin as most people do. Her blood sugars are normally running between 20 and 30. and no matter how much insulin she takes the are unable to get her numbers lower. - it appears if she takes 60 units a day or 240 her numbers are fixed in this range.

She has had very few hypos and every one on the last three years has occurred when she has been highly excited or frightened, (it is as if adrenalin causes a very rapid DROP in her blood sugars ( in most people It normally would cause a RISING of blood sugar levels), I would be VERY interested in hearing from anyone else who has seen similar symptoms.

She has been to a regional "centre of diabetic excellence" where a senior doctor told her bluntly that there was nothing they could do to help her, this uncaring way of speaking to her has set back her mental health issues dramatically.

......having grave doubts about the NHS diabetes treatments and procedures.

A father.
 
Hi, welcome to the forum 🙂 I'm very sorry and pretty disgusted about the way your daughter has been treated. Has no-one suggested trying a different insulin regime, such as basal/bolus (one slow-acting injection and one fast-acting for each meal)? It's not surprising that she feels as she does with levels so high - high levels can severely affect mood amongst other things. Is she on any other medication, such as metformin, to try and deal with her insulin resistance? I would suggest getting her transferred to a different clinic - she can't simply be left as a 'no hope' case, I don't believe it! I cannot imagine my consultant treating me in this manner were I in her situation.

What area of the UK are you in? Other members may be able to direct you to a better clinic - certainly they exist that are far superior to this misnamed 'Centre of Diabetes Excellence' 😱
 
My sympathies go out to her and yourself/the family...........:(

A basal/bolus/MDI insulin regime is the next step, and its quite surprising that she is not on this already, however it is perfectly possible going by your description of the lack of communication between her and her team over the years.......
 
Thanks for speedy replies....

Over the years we have tried many many different insulins in many different doses/regimes, all (certainly since her mid teens) have worked for a short period, (weeks) then slowly stopped being effective.

She has been admitted to hospital for a "sliding Scale" test which according to one consultant proved she was highly resistant to insulin, but a second consultant subsequently tells us she shows no signs of insulin resistance.

Our consultant at our local hospital has told us that she has reached the extend of her knowledge, and referred us to a regional centre where most of our questions were ignored and not answered, and no further course of action was suggested.

We are now trying to get a second referral, but apparently this is entirely dependant on our GPs ability to convince a committee that it is essential and cost effective.
 
With regard to metformin, she has tried this it made no difference to her apart from giving her nausia.

Over the years the NHS have told her "grow up and take control of your life", "Stop being a silly girl" and "You are not taking your insulin" (and we KNOW that she is!) Comments like these have made it impossible for her to speak to anyone in the medical profession, she is otherwise a bright fit attractive and articulate young woman with a high standard of education.
 
Just wanted to say I am so sorry for you and your daughter - poor thing.
Nothing like on the scale of yours but I do know what its like not to be believed. My nurse for ages kept saying I could not be having hypos - it took a one week stay in hospital where several were witnessed by the consultant himself that i was actually believed and there were a lot of red faces.

All I can say is keep fighting. You mustn't give up. And always stick with your gut feeling on things.

If you feel you aren't getting the right level of help is there anywhere you can complain to - your daughter can't keep putting up with this. I don't know anywhere but maybe someone else on here will.

I hope things do get sorted for you all.🙂
 
thanks lucy...

we have made a formal complaint to the hospital about a specific incident, but after 4 moths all we can get from them is that they are still investigating our complaint..... whats the point of complaining if it takes months to even look into it
😡
 
That doesn't sound right - surely there should be a time limit to deal with complaints. I am sure there must be an outside body to complain to? but I could be wrong. Hopefully someone else can help.

I know one lady on here who had to make a formal complaint recently but not sure how it worked.

It doesn't sound like you are being well looked after though.
 
Has she tried the basal/bolus regime that has been mentioned..........?

Even if this also proved ineffective, its still better than 2 a day......

Is the insulin resistance related to weight? You said she is fit, so would assume not? And its likely, being so high all the time that she wont be carrying any extra weight.......

All diabetics have some level of resistance to insulin which can vary in severity throughout the day. Does she exercise? This may be difficult with high sugars right enough, dangerous even......
 
Hi, welcome to the forum. I'm so sorry to hear what you've all been through (sadly not surprised though, some doctors can be very judgemental). I think it's PALS that should be able to help (the Patient Advice & Liason Service). They can often act as your advocate as far as i understand it. Re the GP's referral, of your daughter's constantly running inthe 20-30 range her HbA1c must be very high - that alone should give him/her the evidence (if they are any good at all). Plus i would suggest calling the Diabetes UK Careline (think the number should be on their website)...they will be able to give you advice pn your options. Finally, if it was me I'd even be thinking about enlisting the help of your MP if necessary. Whatever you do, it sounds like a different diabetic care team is the first priority!!

Take care,

Twitchy x
 
she has tried that regime a while ago, but maybe we should revisit it.

Shes not overweight at all,

Shes reasonably active, at college, and works part time as a waitress..
 
As she was diagnosed when she was 2, has she always exhibited this problem with insulin, or is it something relatively recent? Might it be a problem with insulin absorbtion at injection sites? Just trying to think of all the possibilities, although I would assume they have already been considered and ruled out. Has she tried animal insulin (pork, beef)?
 
I know that working the muscles ,heart and lungs will help with resistance, for me it makes managing my sugars a nightmare, but it reduces my insulin requirements..........🙂

I hope she can some good care from someone soon...........she should sign up here, or one of the many other support forums......:D
 
Hi and_why_not. Welcome from me 🙂

Is your daughter receiving any counselling for her mental health issues ?

This may help her to maintain some relationship with the doctors and get to the root of the problem.

I'm not in any way pre judging or suggesting wrong doing but can you rule out possible binge eating or use of other substances which may be affecting her BGs and/or depression?

Rob
 
Health Ombudsman. It may be time to go a little higher up the ladder and try either your local MP, or the Ombudsman (see the link at the start of this post). I can't begin to imagine the hell you and your daughter are in and I really hope you can get the help she needs very soon.
 
Robster65 said:
Hi and_why_not. Welcome from me 🙂

Is your daughter receiving any counselling for her mental health issues ?

This may help her to maintain some relationship with the doctors and get to the root of the problem.

I'm not in any way pre judging or suggesting wrong doing but can you rule out possible binge eating or use of other substances which may be affecting her BGs and/or depression?

Rob
Click to expand...

Yes she has a very good mental health team who work very hard for her.....

No she lives at home- binge eating? well she eats a HUGE amount, but doctors say thats due to her high numbers, shes not taking any drugs, although she had experimented when she was 15/16
 
Has your daughter tried animal insulin?
 
and_why_not said:
Yes she has a very good mental health team who work very hard for her.....

No she lives at home- binge eating? well she eats a HUGE amount, but doctors say thats due to her high numbers, shes not taking any drugs, although she had experimented when she was 15/16
Click to expand...

Do you know how many grams of carbohydrate she eats on a typical day? The problem with injecting insulin in large amount to cover large amounts of carbohydrate is that it becomes very inefficient, so this may be contributing to the problems. It would be a good idea to start a food diary and record the amounts of carbs eaten each day - leaving nothing out, including drinks - so that you get an idea of what a typical day looks like. She will feel hungry because her body cannot use the glucose for energy properly and the brain thinks she is starving, but it becomes a vicious circle if that hunger is fed with more carbs. Eating more protein and low GI vegetables would help fill her up. Forgive me if she is already trying this.
 
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