Feeling let down ........

[xxxleonadxxx]

Hi all,

*RANT ALERT* lol :roll:

I am feeling VERY let down by my health treatment of late.

I have, for a long time now, had major problems with my diabetic control. I should be on insulin but have an allergic reaction to it (all types) and had been put on Byetta along with a host of other tablets ..... none of these are workng and my diabetic control is BAD (high teens are still the norm for my bloods). The docs have acknowledged that there is a problem but do not seem to be doing anything to help or fix. The meds that I am on are making me ill, I am physically sick most days and having a young family and demanding job this is taking its toll ...... I have sat on the fone to my DSN crying but all I got was, theres nothing much I can do about you being sick ..... this is a direct quote btw The last time I saw my consultant was at the start of the year and lasted all of 5 mins, my last appointment in june was cancelled and never re-scheduled.

I have problems with my kidneys and now my liver is causing concern, scan after scan comes back inconclusive, I have just had more test that should hopefully tell me something ....... I am slightly worried that this could be an effect of my high bloods and that if I can't get them down soon it could be a lasting effect.

I have a good and varied diet, I have an under-active thyroid and have always watched what I eat (calories etc), my carb intake is minimal, prob the equivalent of 1 slice of bread per day and I am sufficiently active (dog walking, cycling etc). My weight is stable, I am not losing and not gaining, but I did previously gain weight and this has stayed and sadly I cannot shift it (this slightly gets to me too :? .

I just hope that this gets better soon xxx

 

[sandymaynard]

Hi Leona
You rant as much as you want to! This is a safe place where you can rant and talk and even scream if you want to!
This is a safe place we are all here for the same reason! I hope that you get better services and help soon!
Don't be down, I am sure that eventually something will happen and it will be good!
You have taken the first step in getting things done by coming on here! Just talk when ever you need to! We are all here to listen and offer support and advice!
Sandy

 

[ChocFish]

Hello Leona
I am sorry to hear that you are having such a rough time of it, felling like you describe I think a saint would rant if he were to be in your shoes right now!

You are being let down by your medical team, being brushed off like this by your DN is simply outrageous, if your medics dont know why you are feeling so ill and why nothing works to bring your sugars down then its their job to dig further until they have found out the cause.

Go write down all your symptoms, write down a whole weeks readings and what you eat and then go to that surgery and present them with this, insist they do proper tests and fast, tell them half baked answers such as 'inconclusive tests' are not acceptable and also request a transfer to specialists (an endo would be a good start, you have both diabetes and hypothyroidism) for a second opinion and tell them to do it quick smart, this situation has gone on for too long, far too long in fact.
If these jokers dont act, then go straight and change to another surgery, what you are going through and the response, or lack of response from your medical team is just a scandal, dont put up with it any longer.

I hope things get sorted out for you very soon.

All the best

Karen x

 

[Katharine]

Hi Leona,

You sound like you have plenty to be miserable about. I wonder if animal insulins would suit you? You may have tried them too but if you haven't it could be worth mentioning to your consultant.

Of course, how on earth do you get to see one!

Would your GP do an urgent referral for you?

Katharine.

 

[hanadr]

I suggest Leona that you go to our healthcare team and refuse to go away until they do something to help you. Ask to see a Diabetologist. they do exist.
When you say you are allergic to All insulins, does that include the natural/animal ones?
Also
have you been checked for gastroparesis? that can cause "gut troubles"including vomiting and can make control very difficult.
It might be worth getting a member of your family or a trusted friend, to take over the children for a few days and try, while you don't have them to worry about, to go nearly no carb ie Atkins induction and see if it helps.
Also if our liver is playing up, try drinking loads of water. and making sure your food is as natural as possible.
This might not help, but won't hurt you

 

[xxxleonadxxx]

Hi there,

Sorry for the delay in responding. Thank You all for your replies.

My consultant is an endo :? lol As for the insulins ... yes I have tried them all, I recently attended an anaphylaxis consultant for tests to find out why I was experiencing the reactions, good thing was that I do not appear to be allergic to actual insulin but some of the ingredients within them. It also transpires that I will need a specialist insulin that does not contan these, but I have no idea whether this is somethng that will be available or not. My consultant also prescribed me another drug a while ago that transpired was not available on the NHS and is apparently not licensed for use in women , still awaiting the putcome of that one too lol

I have been on Byetta for about 2 years now and it has not caused me any weight loss that I have read about on here, in fact I have gained, have also been on glucophage and gliclazide varied doses for AGES now, they cannot seem to find a level that my body likes. I was put on pioglitazone a few months back but was taken off quite quickly due to side effects. My blood pressure had started to cause concern and my consultant had asked for this to be monitored at my GPs, but last time I asked them to check they didn't ..... story of my life lol

All in all I feel rather let doen, feel as though no-one is listenng to me and as though I am suffering unnecessarily so ..............

On the plus side, am contacting the hospital again today to re-request an appointment. (Fingers crossed)

 

[Angela72]

Hi Leona

I've read through this thread and I feel like I can totally relate to what you have said. I've been off work sick since mid may as I feel like theres no way I can cope with work the way I am feeling at present and things just don't seem to get any better. I feel like I'm banging my head against the wall coz nothing I do is getting my BS down. I'm still getting readings in the teens and early 20s all the time. Ive recently changed my insulin and still no better, if anything its worse. I saw the consultant last thursday and he has said "this insulin regime is not working" and I need to go onto 4 injections a day I think he said lantus and bolus or something to this effect but when this is happening I dont know, he is going to get in touch with the DN. This all takes time and I am desperately wanting to feel better. I have also asked for(and had) a GAD test as now it has been suggested that I have LADA and not type 2(this was on this site) due to C peptide test being very low. I was going to go onto byetta but with hardly any beta cell function, this was not possible. I feel like I'm having to fight for everything . The DN hadnt even heard of LADA which is quite reasuring when she is a diabetic nurse specialist. I could rant on all day once I get started coz feeling very let down , angry and defeated. :cry:

Thanks for listening

Angela X

 

[terry100]

Hi everyone,

Sorry your feeling let down Leona, to go on with no answers for such a long time is a real trial ontop of everything else. I can totally relate to what your going through, I'm not getting answers from my diabetes team and I'm getting a bit sick of it.

I was diagnosed with diabetes at 7 weeks pregnant and put on insulin within a week which was a shock. I'm onto 4 doses a day now and for the last month or so been feeling really tired, getting more confused, I'm forgetting things, feel dizzy or 'drunk' most of the time and unsafe. I'm even scared to look after my 5 and 2 year old on my own for long periods as I dont think I can care for them properly, or myself. My diabetes midwife just pulls a 'ahh' face and puts her head to the side and says 'I dont know why your feeling like this, you may have a virus, but I'm sure it's just the pregnancy'. This doesnt help me to understand and move forward with the diabetes when I'm feeling **** and all I get is that it's going to get worse as I progress with the pregnancy. I'm now 17 weeks and have been off work for 2 weeks now coz I had about 6 hypos over the past week and a bit which were very scary.

Since my midwife is on hol, I've been speaking more to my diatician who spoke to the consultant to get more answers. He said it may be due to sodium levels and requested a special blood test this morning by the endrocologist nurse. I'll get the results on Mon, so they may be able to get to the bottom of it. Juggling work, family, pregnancy and other family problems with a stressful job is hard and these 2 weeks off has really helped, but I feel guilty about having time off. I've never been off work for this long before in my whole career, let alone in one spell. What time have you had off and how long did it take to stabalise your readings, etc?

 

[Handyníall]

I kind of feel like I'm intruding, but I'll ask the question anyway.

Why haven't you been offered a SPK (simultaneous pancreas-kidney) transplant?

 

[kegstore]

I doubt you'd get a kidney unless your GFR was in or fast heading towards the qualifying zone (<20), but a pancreas alone is still an option, and would halt any existing deterioration in your kidneys. Definitely worth asking about. Let us know how you get on with whatever pans out?