Confused after go appointment

[becca19962014]

so I had my second appointment after type 2 diagnosis.

Again with the losing eye sight and limbs and death stuff. Had a go at me about the metaformin and not taking 2g a day plus other diabetes medications. Apparently my hb1ac was horrifically high at 80 and it's impossible for me to have had the low reading I got and I can't be using the equipment properly - is there a way to get that wrong? I'm using accu-chek mobile and have done for a long time before diagnosis.

I don't understand when I've been reporting various issues for 18 months this test wasn't done. I was treated like that was all my stupid fault like I should have known I had horrific diabetes. They're now ignoring all my other conditions and say I now automatically qualify for maximum rates of all disability benefits. That sounds wrong.

I've been told to avoid sugar at all costs, I can't as one medication I take for another condition is basically sugar - specialist prescribed and there's no other option and they had a go at me telling me taking this medication was putting my life at risk.

Honestly, I'm already struggling with severe depression (blamed on the diabetes despite having it for over thirty years) and don't see the point in all of this. My symptoms caused by other conditions are now being totally ignored and I don't understand why.

 

[becca19962014]

I left, again, in tears.

I've reported the supposed horrific diabetes symptoms for eighteen months. Why didn't they check before if it's all so horrific?

I can't have insulin due to severity of disability in my hands they now want to blame my circulation problems on diabetes as well claiming I must stop using splints I have which are tight so I can move - loose means not being able to move in terms of knees and ankles. I've seen them for ten years about my other conditions twice a month and now they're being ignored totally and I feel like a fool for thinking they believed me.

 

[Bubbsie]

I left, again, in tears.

I've reported the supposed horrific diabetes symptoms for eighteen months. Why didn't they check before if it's all so horrific?

I can't have insulin due to severity of disability in my hands they now want to blame my circulation problems on diabetes as well claiming I must stop using splints I have which are tight so I can move - loose means not being able to move in terms of knees and ankles. I've seen them for ten years about my other conditions twice a month and now they're being ignored totally and I feel like a fool for thinking they believed me.

Becca...I'm really sorry your appointment has reduced you to tears...obviously you went to your GP for help & support as well as advice on your health care issues...are you able to give a brief history on your diagnosis...such as when...how you were diagnosed...apologies if you have done that before...it might help members offer the right support if you can provide those details...what your HbA1c is now as opposed to what it was at the start (80)...its not acceptable to be treated that way by anyone...particularly by your health care team...once you have got yourself together it might be worthwhile addressing those issues with the practice manager at your surgery...as for the difficulty with the medication you have been told is putting your life at risk...I am unable to advise...others may be able to...would you consider giving the DUK helpline a call...I'm sure they would be able to offer you advice...on your horrific appointment and the medication problems...please think about doing that tomorrow...I'll find the link and post it for you...keep us updated...take care of yourself.

 

[Bubbsie]

Becca...I'm really sorry your appointment has reduced you to tears...obviously you went to your GP for help & support as well as advice on your health care issues...are you able to give a brief history on your diagnosis...such as when...how you were diagnosed...apologies if you have done that before...it might help members offer the right support if you can provide those details...what your HbA1c is now as opposed to what it was at the start (80)...its not acceptable to be treated that way by anyone...particularly by your health care team...once you have got yourself together it might be worthwhile addressing those issues with the practice manager at your surgery...as for the difficulty with the medication you have been told is putting your life at risk...I am unable to advise...others may be able to...would you consider giving the DUK helpline a call...I'm sure they would be able to offer you advice...on your horrific appointment and the medication problems...please think about doing that tomorrow...I'll find the link and post it for you...keep us updated...take care of yourself.

Becca...the number is 0345 123 2399...try and give them a call tomorrow.

 

[Amigo]

They sound alarmist and clueless with one inaccuracy after another Becca.

Yes you can get your levels down yourself with significant dietary changes.

Yes you can reverse long term diabetic risks by doing so.

No this does not make you eligible for all the benefits going simply by having diabetes. It's how your daily functioning is affected.

Yes they've failed you in not testing the obvious earlier and are throwing the blame back at you.

It's not just sugar that you need to watch, it's largely carb intake.

Don't let them make you feel like a failure for their inadequacies. Show them you can turn this around yourself and show them how wrong they are! Best wishes to you.

 

[DaveB]

Hi. Yes, reduce all carbs not just sugar (the NHS will never learn). I suggest you check on the medication 'with sugar'. I can't imagine any medication that needs much if any sugar?

 

[becca19962014]

Thankyou for the replies.

The hba1c at 80 is the diagnosis level at two weeks ago when I was told I had diabetes. I've only had two appointments. My difficulties are that with my conditions, and other meds, getting it lower is almost impossible. A vital medication is mainly sugar based with salt and must be taken several times a day. I can't manage to cook so live off convienience foods - I can't afford the care I need to eat properly, they've known this for years but said it doesn't matter. When I was diagnosed with PCOS years ago I was told I was at risk for diabetes and then a few months later was given a large amount of steroids (100mg a day) which then took months to taper off and the leaflet said it caused diabetes with prolonged use and high dose and patients must be tested but I wasn't.

I've been trying the helpline but without a phone it's impossible to actually speak to anyone I just get asked for a number to phone me on at some time and as I struggle so much with telephones that's not an option,I also can't hang around a public phone for hours on end!

I can't manage insulin due to severity of disability in my hands.

I already struggle to claim benefits with my conditions, which always become terminal so I'm at a loss with the benefit comments, same that my electric can't be cut off. They've no idea at all how hard it is. They've made a lot of assumptions e.g. I can afford meals from social services on benefits because others manage it - but ignore my financial difficulties due to being disabled for fifteen years, out of work, being constantly reassessed, turned down, lose income, forced to borrow then appeal in court, win and then be reassessed. I can no longer get loans or credit cards, next time I'll have no way to survive the government stopping my money - the majority of my benefits go on taxis to appointments, get meds and food (no deliveries here). Neither do I have space or means to store frozen ready meals (which social services provide). They aren't healthy meals, full of fat (which I can't digest due to having suffered with pancreatitis), carbs, sugar and salt. I can't afford heating this winter as no credit card to put bill on.

I've just been told no sugar. That's it.

I'm really struggling with the blame aspect - yes I feel like they're blaming me for not finding it before and don't understand why they're bothering if the result is so horrific it'll just cause these problems anyway, especially when I have a condition that severely restricts circulation leading to amputation and causes blindness already.

I'll try the helpline again tomorrow.

Sorry for the massively long post. Again!

 

[becca19962014]

I must take rehydration sachets (dioralyte) every day to keep my blood pressure up or repeatedly lose consciousness with no warning. The only other option is medication which is banned in the uk due to causing strokes in the majority of patients that take it - I have taken it and was hospitalised. Nothing else works.
Without it I constantly lose consciousness and would be housebound so no food or medical care at all then.

Feel like I can't win - that's not directed at anyone here it's just the difficulty of multiple conditions I must manage alone because I can't access medical care anymore.

 

[becca19962014]

Dioralyte is mainly sugar with other things included. I tried a homemade version but it didn't work so specialist said I must always carry it on me and sip it throughout the day, when unwell I must drink it. So can be several sachets a day are needed.

 

[Copepod]

I really hope the helpline can help you tomorrow Becca. Do explain about your telephone situation, which is unusual, but I'm sure you won't be the first person in thesame situation to call them.

 

[Amigo]

Thankyou for the replies.

The hba1c at 80 is the diagnosis level at two weeks ago when I was told I had diabetes. I've only had two appointments. My difficulties are that with my conditions, and other meds, getting it lower is almost impossible. A vital medication is mainly sugar based with salt and must be taken several times a day. I can't manage to cook so live off convienience foods - I can't afford the care I need to eat properly, they've known this for years but said it doesn't matter. When I was diagnosed with PCOS years ago I was told I was at risk for diabetes and then a few months later was given a large amount of steroids (100mg a day) which then took months to taper off and the leaflet said it caused diabetes with prolonged use and high dose and patients must be tested but I wasn't.

I've been trying the helpline but without a phone it's impossible to actually speak to anyone I just get asked for a number to phone me on at some time and as I struggle so much with telephones that's not an option,I also can't hang around a public phone for hours on end!

I can't manage insulin due to severity of disability in my hands.

I already struggle to claim benefits with my conditions, which always become terminal so I'm at a loss with the benefit comments, same that my electric can't be cut off. They've no idea at all how hard it is. They've made a lot of assumptions e.g. I can afford meals from social services on benefits because others manage it - but ignore my financial difficulties due to being disabled for fifteen years, out of work, being constantly reassessed, turned down, lose income, forced to borrow then appeal in court, win and then be reassessed. I can no longer get loans or credit cards, next time I'll have no way to survive the government stopping my money - the majority of my benefits go on taxis to appointments, get meds and food (no deliveries here). Neither do I have space or means to store frozen ready meals (which social services provide). They aren't healthy meals, full of fat (which I can't digest due to having suffered with pancreatitis), carbs, sugar and salt. I can't afford heating this winter as no credit card to put bill on.

I've just been told no sugar. That's it.

I'm really struggling with the blame aspect - yes I feel like they're blaming me for not finding it before and don't understand why they're bothering if the result is so horrific it'll just cause these problems anyway, especially when I have a condition that severely restricts circulation leading to amputation and causes blindness already.

I'll try the helpline again tomorrow.

Sorry for the massively long post. Again!

You can get sugar free Dioralyte Becca. Social Services sub-contract meals services out to other providers and they are certainly not high fat, high sugar, high salt meals...quite the opposite. They're are often bland because they omit these things for nutritional reasons.

 

[becca19962014]

Yes you can get dioralyte sugar free but it didn't work as well for the stage my condition is currently at, unfortunately. Sorry I should have explained that. Something to do with alternative ingredients (no idea what!)

The menu I was sent was things like gammon and chips 350 calories, 10g fat and 50g carbs/ cottage pie is 350 calories, 15g of fat and 45g of carbs/macaroni cheese (veggie option) 520 calories, 30g fat and 55g carbs. There are a few more those are randomly selected, as giving all would out me as they're taken direct from social services website for meals. I don't know who they're provided by. Other meals are similar and those are the standard portions, the larger ones are much higher. I don't believe those are low in fat or carbs, as far as I'm concerned they are high, especially the carbs which I've kept below that amount for my meals.

The only things labelled low sugar are desserts.

It's doesn't include any vegetables as sides (I'd need to buy those and prepare them) and for £6 each that's a lot of money for one meal (on my budget).

 

[Pumper_Sue]

I must take rehydration sachets (dioralyte) every day to keep my blood pressure up or repeatedly lose consciousness with no warning.

If you suffer from low BP there is a medication called fludrocortisone that fixes the problem, I've been taking it for about 14 years without a problem.

As you have been told here and else where it's the carbs you need to watch/reduce forget the sugar label.

Many people manage on benefits long term so can't see why you can't manage.
There's warm home benefit from the lecci companies which give about £140 towards your heating bill, there's free insulation for people on benefits as well, food banks cut price stores, there are also community transport schemes available to help with transport. Hospital apts you can claim the travel expenses back. I feed myself on £15/week so can not see why anyone else can't either.

Perhaps instead of going down the route of I can't do this or that think of ways you can do things and then feel proud of yourself for your achievements.

 

[Diabetes UK]

Hi Becca, sorry to hear of all the things you are managing at the moment, sounds like a lot? Glad to hear you have finally had a diagnosis, but it os now a case of finding the best way for you to manage your diabetes in balance with other health conditions.

Did you manage to get in touch with our Helpline today? We also have a live chat service if you do not have access to a phone, so you could contact the team that way if it's easier for you: Live Chat

Do let us know how you are, I can arrange for our Helpline to contact you at a convenient time if you are able to provide a contact number - I'll contact you privately about this. 🙂