I hate diabetes

[Orchidlady]

I have just come back from my first retinal screening, was diagnosed type 2 last year. The surgery was just full of old people. I feel so cheated, I am normal weight, fit in my 40's but I am seriously diabetic ( blood levels sooo high most of the time. Sorry just wanted a rant. Also people seem to have this attitude that this is a self inflicted.

Diabetes sucks. Are you getting much help managing your levels?

I am not diabetic btw but I have friends who are and work (in admin) in a hospital area which sees a lot of diabetics.

northen I manage with diet (low carb) and bought my own testing kit, because GP thinks self testing is not important.I The advise given out is pretty rubbish tbh, I think this is pretty commonplace sadly

That sounds crap! What sort of regular diabetes review does your practice offer?

My job is diabetes related - believe me it's not just old people who have it! We see diabetic patients from 12 years old upwards.

Sorry you feel that people judge you and think that it's something self inflicted - anyone who knows anything about the condition will know that's not true.

Did you say you are diet controlled? How was your retinal screening? Can I ask what screening programme you're under?

Been type 1 since I was a kid and today I hate it too!

I think in many ways it's worse having diabetes as an adult than it was as a kid. At least when I was a kid everyone assumed it was type 1 whereas now people ask if it's type 1 or type 2 (which unfortunately as the OP has awful stereotyping that goes with it).

Orchid have you seen a consultant? I ask because I too am normal weight, fit and in my 40's and diabetic. I was diagnosed last year after a random blood test and diet, exercise and medication did nothing to help my blood sugar levels, which were very high most of the time

The diabetic nurse at my surgery said I didn't fit the normal type 2 profile. I saw my GP and she referred me to see a consultant. I still don't have a definitive diagnosis but they know I'm not type 2. I started on insulin and haven't looked back. They think I might be LADA or some other slow onset type1, investigations are still going on.

glasses No I have not seen a consultant in fact I have never seen a GP just the diabetic nurse, who seems to think pasta, bread are ok. When I was diagnosed last year I was so good with my diet and exercise but could never get below 9. I have been really naughty recently and feel really cross with myself but it is so hard. Just stresses of life, i really need to get back on track. Have just rejoined the gym so a good start.
glasses can I aks what your levels were?

little retinal screening went well, not as bad as I thought it was going to be. All seems well but will get results in a few weeks. Sadly people do judge they have no idea. Even my DM said behind me back that if I was not been carrying a few extra pounds ( I am a size 12) over the years I would not have "it" but even more is she is also a diabetic and a nurse. I could write a whole new thread about that though.

Agree with glasses. Don't get fobbed off with your 'age'. It is very common to be diagnosed as type 1 over the age of 20. Most GPs don't investigate. You need a C-Peptide test. If you are type 1 you will need insulin, but you have a whole host of other treatment options available that you just don't as a type 2.

I'm type 1 too (20+ years).

Why not have a look at this forumh ttp://diabetes-support.org.uk/diabetesforum/index.php
Quite a few people with similar issues and lots of good advice.

diabetes-support.org.uk/diabetesforum/index.php

Link

glasses my grandfather was diagnosed type 1 in his 40s too.
I currently have gd but when not pregnant I have pre-diabetes and also hate the stigma but find it helps I am tall and thin so get lots of comments about how "unfair" it is for me

I do fit the type 2 profile in some ways though so I expect that I will become type 2 at some point (mum has it, tend to put weight in stomach).

Thanks for the link, have already been on there, forum seems to have little traffic. just tested now 11.5, that is good for me. I am due a review now so may demand that test. I asked last time but was told is was very unlikely I was type 1. I am supposed to take metformin but really struggle taking such a huge tablet ( silly I know but it makes me gag, I struggle taking any pills)

A lot of health care professionals diagnose type on the basis of age, there is often a very poor understanding of the complexities of the condition and the different patterns it can take. All diabetics will suffer from higher than normal blood sugars but the reasons for this and how it can be dealt vary depending on the type. Type one diabetics will never be able to control their condition without insulin.

Demand to see your GP and ask for a referral to a diabetic specialist. They can test to see what type you have. You may get your life back.

Good luck

I feel you op

I hate it too

the ignorance is shockingly bad
People really do think if you have diabeyes its your fault
Outrageous really

Orchid my levels were all over the place! Fastings were the lowest, usually around 7 or 8. If I ate bread, pasta, fruit or cereals they would go up to high teens, low twenties.

I got steadily worse but quite quickly if that makes sense. I'm still not sorted because my body has decided to be, shall we say challenging. My insulin requirements can vary vastly from day to day as I'm in the honeymoon phase.

Remember, it's you who has diabetes and if you aren't happy with the way it is being treated, complain and ask to be referred. What anyone else thinks is immaterial.

My path hasn't been easy or straightforward. I had one fool of a consultant who basically tried to b*llshit me. I refused to see him and my GP reluctantly referred me to another. I'm lucky in that my husband works in primary healthcare so I knew how things should be.

Hello...I just wanted to mention there's another forum, diabetessupport.co.uk (no hyphen) which is well moderated & has a lot of very experienced & kind posters of all types who can usually make helpful suggestions or lend a sympathetic ear. NHS advice at the mo is a bit 'one size fits all' & I agree, the stigma re type 2 is horribly unfair - I know a few type 2 diabetics & only 1 fits the stereotype - the others include marathon runners & racing snake types! There's also a lot of debate re whether insulin resistance & weight gain are chicken & egg or egg & chicken iyswim...

Could you persuade your doc to send you on a 'desmond' course or similar?

Thanks for the replies. glasses I would be delighted if I could get a reading of 7. You are right I need to be in control but I think it takes time. When you are first diagnosed you are given such conflicting advise. I remember early days when given Metformin I told the diabetic nurse I was struggling with taking the pill, she suggested taking it with Jam, really . err but surely jam is really not s good idea.
Also re self testing, I was told self testing really is not a good thing, only to be asked on my next visit what my levels were. Any yes pasta, bread are all good in moderation yadda yadda. I am shocked really about the patronising way diabetics are treated ( reading other forums)

Orchid The only way to get control is to test,test and test some more. You need to know exactly how different foods affect you. We are all different there is no one size fits all. I bought This monitor and tested Fasting, before and 2 hours after every meal and before bed. The strips are a lot cheaper for this monitor than most of the others.

I did that for two weeks and then went back to my GP and showed her the results.
I'd be delighted with levels of 7 too! Unfortunately I don't see them that much now even with Insulin, although that is obviously the target. It's just a case of finding the balance, which is not always easy.

Diabetes is a pain to live with. I was beyond furious when I got my diagnosis and when no-one was listening to me. Now I have a good consultant and brilliant support from the hospital diabetic nurses I've accepted it and am learning to live with it. I still have days where it gets on my nerves but it doesn't rule my life like it did in the beginning.

glasses I have that monitor also, get cheap strips from amazon. Pity though we have to even pay for them, I am sure that is the only reason they tell us self testing is not a good idea, call me cynical. I am think I am lucky in one way that I very familiar with low carbing and into my food. But I need to get back on track. Sadly I don't I will be getting an help worth while any time soon. Sometimes I am open mouthed at the things people say

Right need to moan again and any advise gratefully received. Just done a 1.50 hour hard workout in the gym and have just tested. 15.2, wtaf! this is crazy. I think I should be getting worried now I am starving just to scared to eat something now

Do you have any strips to test for ketones?

This explains why your levels might have increased. In your situation I think I would keep a food diary and write everything down I had eaten/ drunk. I would test before and after every meal or snack. Write it all down in an easily readable format and then take it and show my GP.

Has anyone explained how the Metformin works? It could be that Metformin alone is not enough and you need something else to increase insulin production.

How often are they checking your HBa1c? Running high blood sugars all the time is not a good idea. How are you feeling generally?

Not eating is not the answer. The answer is to keep going back to the medics until they listen and give you the help you need.

Read as much as you can so that you understand what is happening to your body and then you will have an idea if they are fobbing you off. Knowledge is power

I hate it too :(

I was diagnosed Type 2 in May. I had only gone to the GP for a check up as had moved back and rejoined the surgery. I had loads of niggly symptoms (tired all the time, needing to pee at night, spots that wouldn't heal, uncomfortable feeling down below that turned out to be thrush, 4 day headaches, to name a few) but had just put it down to lack of /broken sleep and stress due to DC's disability.
Since diagnosis I have been generally unwell as well as having kidney stones, kidney infection, chest infection, urine infection, and now thrush in my mouth which is desperately sore. I seem to be always at the GP's now, which is totally unlike me....or me before diabetes.

I am lucky that my GP is fantastic, and a diabetes specialist. He is being very throrough, but things are taking a while to settle.

I am 36, 5'1 and size 16, (yes, I know I am overweight, but not massively) but have a really healthy diet. I was told my diabetes is genetic, as I had three grandparents with it, and too bad to be diet controlled only :( .
I was started on Metformin slow release (which are massive, orchidlady maybe ask for the ordinary Metformin which are smaller and easier to take)
Initially these worked well, but gave me tummy upset and were not so effective so I was changed to ordinary form, dosage upped to 2 per day where I was getting reasonable control (BS mostly 7-8) and then up to 3.....but then my levels were dropping to 2.....and I had to have glucose tablets and carbs to bring it back up and trouble then maintaining it. Apparently though, Metformin cannot cause sugar levels to drop The GP has put me back down to 2 per day, and I have to have another HbAc1 test. I also have high cholesterol (6) so have been put on tablets for that too.
Also, my liver and kidneys are struggling, I have blood and protein in my urine samples, went for an ultrasound scan Monday and have been summonsed by the GP to go in for results.
I now have no control at all....sugars all over the place, highs of 16/17 and no lower than 11, when I am eating really well (not low carbing exactly, but keeping to below 100 grams a day). What really has pissed me off, is last night I had a very rare night out, drank 4 pints, had a kebab wrap, and 6 squares of chocolate and tested before bed.....sugars 5.7 makes me wonder why I bother! (not actually sure whether to admit this to GP!).
I have seen diabetic nurse who was frankly useless - didn't listen to a word I said, told me not to drink fizzy pop and eat more veg.
I've had the retinopathy screening which was agony and I couldn't see for hours afterwards (luckily results were good).
I am seeing the dietician on Tuesday, but expect to be told to lay off the pies and pasties! which I honestly don't eat, so I have been doing a food diary. I am allergic to fish and shell fish though, so will be interesting to see what kind of diet plans she comes up with!
I was given a testing monitor after some begging because I was really scared on diagnosis...my grandparents all died of diabetes related heart attacks, and my stepdad died of septicemia in his diabetes related leg ulcers :( otherwise I would have had to buy my own.
I really hope I can get a handle on this, I hate not being in control of my own body and feel like everything is falling apart......I thought it would be a case of taking the tablets, eating sensibly and I would be on an even keel. I didn't think it would be this bloody difficult

bread Sorry to hear you have not been well. It sounds like you have great support. I know what you mean about weird readings, I know on several occasions when I have been "naughty" that I have low reading ( for me) and you do think WTAF. I have always eaten healthy, but sadly diabetes really runs in the family. I am 5.5 and a size 12, probably could loose a few pounds but hey ho. Metformin I hate hate hate it. I really struggle to take a pill ( stupid phobia) I am supposed to take 4 a day, rarely to I manage that. Ironically I feel very well most of time. I do find myself getting irrationally angry if I go too long without eating. I was painting the kitchen yesterday and forgot to eat, suddenly I felt very shaky and ill but think that would be normal for non diabetic.