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Type 1 diabetes

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By *cottish guy 555 OP   Man 52 weeks ago

London

Hello to all my fellow sufferers. Was chatting with a lovely lady and mentioned threads from the past and thought I'd start a new one. Say hello to all the folks who know what an HBA1C is and share any handy hints or good tech that have helped, or not.

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By *rixie_BlondeWoman 52 weeks ago

London (She/Her)

My hba1c is due in March to apply for dexcom funding, dreading it .

I’m the age where I still have to convert the hba1c into the old percentages to understand the reading

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By *cottish guy 555 OP   Man 52 weeks ago

London

It's appalling that you have to meet a criteria for something that literally keeps you alive and helps you live your life.

I reckon all diabetics, type 1 and 2, should just be offered a sensor.

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By *hrimper36Couple 52 weeks ago

Central France dept 36

22 years a bad diabetic and 3 years a good diabetic but my body is ruined so listen to the professionals people.

T

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By *cottish guy 555 OP   Man 52 weeks ago

London

Very much so. Although sometimes the experts are wrong. Rely on the data and advice

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By *hrimper36Couple 52 weeks ago

Central France dept 36


"Very much so. Although sometimes the experts are wrong. Rely on the data and advice "

No offense op but if you’re setting up an advice thread then please please be careful about the advice you give out.

Ok I live in a much better country for healthcare but the advice I received from the NHS was good advice but like a stupid cunt I choose to ignore it because I knew better.

I didn’t know better.

I was a stupid cunt.

I’m now paying the price and the problems I’m facing cannot be reversed and I take the full blame and I’m grateful to my specialist for getting me this far.

I used to think that I was an expert on my body and my illness.

I wasn’t.

Stay frosty everyone and again no offense op but I wouldn’t want anyone to suffer like I’ve suffered through stupidity.

T

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By *ieCazCouple 52 weeks ago

Sheffield

Caz recently got put on the freestyle Libre 2 sensors, great but of kit with a lot of info shown on the app. It's not without its problems but it's certainly saved her finger ends ??.

K

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By *rixie_BlondeWoman 52 weeks ago

London (She/Her)


"Very much so. Although sometimes the experts are wrong. Rely on the data and advice

No offense op but if you’re setting up an advice thread then please please be careful about the advice you give out.

Ok I live in a much better country for healthcare but the advice I received from the NHS was good advice but like a stupid cunt I choose to ignore it because I knew better.

I didn’t know better.

I was a stupid cunt.

I’m now paying the price and the problems I’m facing cannot be reversed and I take the full blame and I’m grateful to my specialist for getting me this far.

I used to think that I was an expert on my body and my illness.

I wasn’t.

Stay frosty everyone and again no offense op but I wouldn’t want anyone to suffer like I’ve suffered through stupidity.

T"

I’m really sorry to hear you’re suffering. And you know your own story.

I do think luck is involved with complications. Some diabetics (not all) are just unlucky, and some just are lucky. Fingers crossed for all of us.

I’m still looking forward to this being cured in the next 5 years!

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By *rixie_BlondeWoman 52 weeks ago

London (She/Her)


"Caz recently got put on the freestyle Libre 2 sensors, great but of kit with a lot of info shown on the app. It's not without its problems but it's certainly saved her finger ends ??.

K"

Congratulations! I’ve found CGMs to be life changing, even more so that the pumps. I agree with the OP that all diabetics should be given them as a matter of routine

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By *cottish guy 555 OP   Man 52 weeks ago

London


"Very much so. Although sometimes the experts are wrong. Rely on the data and advice

No offense op but if you’re setting up an advice thread then please please be careful about the advice you give out.

Ok I live in a much better country for healthcare but the advice I received from the NHS was good advice but like a stupid cunt I choose to ignore it because I knew better.

I didn’t know better.

I was a stupid cunt.

I’m now paying the price and the problems I’m facing cannot be reversed and I take the full blame and I’m grateful to my specialist for getting me this far.

I used to think that I was an expert on my body and my illness.

I wasn’t.

Stay frosty everyone and again no offense op but I wouldn’t want anyone to suffer like I’ve suffered through stupidity.

T"

My advice was to rely on the data AND advice from health professionals. When I said that they don't know everything it was in relation to my cgm saying everything was fine and my HBA1C saying it wasn't.

I was told to ignore the HBAIC which seemed crazy to me so, like yourself, I mixed the cgm readings with finger pricks. Turns out I was correct and they were mistaken.

Never ignore what you are being told by the diabetes team, but remember, sometimes they make mistakes. If I'd listened to everything they said I'd be in a much more precarious situation than I am now.

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By *ittlechick77Couple 52 weeks ago

Staines

My understanding is all type 1 diabetics are now entitled to libre sensors on prescription. As you have type 1 diabetes you are also entitled to medical exemption card so prescription is free.

I have been type 1 18 years

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By *cottish guy 555 OP   Man 52 weeks ago

London

Some ccg's require you to meet a certain criteria such as a heightened HBA1C for a set time or that you are doing a minimum of 8 finger pricks a day. Whatever it is, every type 1 should have one.

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By *rixie_BlondeWoman 52 weeks ago

London (She/Her)


"My understanding is all type 1 diabetics are now entitled to libre sensors on prescription. As you have type 1 diabetes you are also entitled to medical exemption card so prescription is free.

I have been type 1 18 years "

I don’t know whether all T1s are entitled to the libre, but I need a dexcom g6 or g7 to get the full function out of my insulin pump. Each year I have to jump through hoops reapplying for my pump and jump through hoops reapplying for my dexcom. It’s such a waste of time, emotional energy and the hospital’s admin.

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By *rishman75Man 52 weeks ago

Chessington/epsom

I'm a type 2 and it's been tough but I'm getting through it slowly and the card helps and I've had to cut certain things out but I've noticed the difference .

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By *owestoft ManMan 52 weeks ago

Lowestoft

There are so many who say do, don’t or be very careful giving advice lol.

I’ve been a diabetic type 1 for 50 years so been through many insulin regimes and had so much advice from doctors etc its spilling out my ears lol. For most of my life I have been a bad diabetic but now older, more due to boredom, I take a bit more attention to sugar etc. In the last 5 years I’ve developed some issues but depending on the doctor or specialist you talk to, there are various reasons given for the cause of them all. So simply listening to medical advice is not as simple as suggested. One thing doctor’s do agree on is that an individual knows their own body and control better than anyone. But probably, that is more with those having had diabetes for a few years at least. As long as we all understand that everyone’s body, although very similar in overall operation, works/reacts in uniquely different ways. Then, what is given as advice on forums must be understood to be what worked or not worked for that individual. But sharing experiences is very important for all.

The one problem I’m having, not physically with body, is the new Trurapi Kwik Pen.

About 10 years ago, when I was still contracting in Oz, I changed from Act Rapid fast acting insulin to the NovaRapid Kwik Pen. I’m sure everyone is familiar with the graph’s curves of the 2 types and the conditions and times for storage of these. I found the slower acting curve of the NovaRapid far better. While in Oz over those 10 years, I had maybe 3 or 4 pens go off and had to dispose and use a new one. When I came back to the UK I found that there were about 2 or more going off every couple of months. Now the NHS, I believe, have changed the NovaRapid for TruRapi Kwik Pen and stated they were exactly the same as the NovaRapid. I’m finding more of these Pens are failing each month and the curves have changed considerably.

Is anyone else experiencing the same?

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By *hrimper36Couple 52 weeks ago

Central France dept 36

No because I haven’t used the pens in over four years now and just use Humalog delivered by pump.

Can I ask what issues you are experiencing please as it’s of interest to me.

T

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By *aughtyLittlePicsCouple 51 weeks ago

Belper

Interesting - I was high a lot with NovaRapid but put it down to the timing and switched to Luymjev which is supposed to work in 5-8mins and have been much better for it

Perhaps it was just going off faster?

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By *rixie_BlondeWoman 51 weeks ago

London (She/Her)


"Interesting - I was high a lot with NovaRapid but put it down to the timing and switched to Luymjev which is supposed to work in 5-8mins and have been much better for it

Perhaps it was just going off faster?"

I’ve been on novorapid since 1998. It seems crazy to me that we are still using something so old as standard

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By *owestoft ManMan 51 weeks ago

Lowestoft

As with everything. What works for one doesn't necessarily work for others

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By *igharryMan 7 days ago

Manchester

Hi everyone! T1 here since i was 1 years old, just turned 32.

Seems a lot of people with a lot if experience here so please let me know of any advice.

Hba1cs have been in 50’s and 60’s as a child with mums help.

Neglected it as a late teen and early 20’s. Hba1c’s went up to 90’s for a good 8 years.

Mid twenties theresa may got me a sensor lol and hba1c’s have improved with my last 4 being in the 50’s. Absolutely brilliant now!

However… iv developed some hard skin on my foot. It’s been there 6-7 years and no signs of healing or growing.

Also my eyesight is getting bad. It used to be amazing but i now need glasses. Super worried this will go further.

Advice im being given is control your sugars… but ny hba1c is 58!

Wtf do i do

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By *igharryMan 7 days ago

Manchester


"Interesting - I was high a lot with NovaRapid but put it down to the timing and switched to Luymjev which is supposed to work in 5-8mins and have been much better for it

Perhaps it was just going off faster?

I’ve been on novorapid since 1998. It seems crazy to me that we are still using something so old as standard "

If it isnt broke, don’t fix it

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By *ulldog_71Man 7 days ago

Sedgefield

T2 here for the last 3 years the first 18 months were promising with the reduction in Hba1c 128 when diagnosed dropping to 56 but the last 18 month has been a lot harder with it on its way up again back to 68 at the last check, trying to make more changes and stick to the changes I've already made but it's not easy breaking 50 year old habits. Still on tablets rather than insulin at the minute but they have been increased 3 times over the last year.

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By *vaRose43Woman 7 days ago

Forest of Dean

Ooh a type 1 thread. Adding myself as a member of this shitty club

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By *owestoft ManMan 7 days ago

Lowestoft

Hi all. I've been a Type 1 for 52 years now so have a lot of experience through the years. I started with Insulin Injections which to me, at 12 years old, looked like farking daggers. For the first 30 years it was very hit or miss when taking those terrible needles. Every time I would try it but if it hurt, I went for another spot and if that hurt then fucked it off and didn't take it that day. I spent many years playing various sports like Rugby (Union, not the pretend rugby lol), squash, MotoX, swimming and even when I turned 15, I got very much into Scuba Diving. Admittedly the doctors weren't happy giving me the go ahead for Scuba Diving, but they did, and I've spent many years enjoying the sport. During my teens, even with my very bad regime of taking insulin injections my doctors kept reducing my insulin intake and even saying if it carries on, I might go off insulin altogether lol. But then girls and beer took control, and my insulin intake went up to what it is now.

I've noticed a few posts going back and forth about advice from the specialists which I would like to continue along with. We need to understand that everyone is different, and we all react to various treatments differently. What might work for one won’t necessarily work for another. Specialists and especially GP's work using statistics and although some know their patients well, they will tell you that you are the best person to know your own body. So, it's important to understand it is their advice they give you and it's mostly for you to learn and evolve with your own treatment. I’ve been very lucky with my Type 1 in so far as very little damage has occurred due to it. In my 60’s now and most of my body parts are working well lol but I have had some issues with Diabetic Retinopathy. It might be worth your while doing some research on this but in general, the statistics suggest that ~90% of Diabetics can go blind due to this issue up to 20 years of being a Diabetic. Which leaves ~10% not needing Laser Treatment. To cut a long story short, I refused Laser Treatment even though GPs insisted I should go and have it done. One Doctor even told my Ex-wife that he should not prescribe me insulin as I was refusing to go have the Laser Treatment. LOL a Scare Mongering tactic used by many doctors but obviously they can’t do that. So eventually, to keep the GPs from shouting to much, I went to the specialist eye clinic. They scanned and photographed the back of my eyes and the outcome was, they had never seen a Diabetics eyes of 30 plus years in such good condition. Went to the GP and told him the result and he was to stop harassing my Ex with silly statements. As it turned out the GP was a good friend with the Eye Specialist and about a week later, I got a letter from the Specialist asking me to come in urgently as they had missed something while looking at the scans. So went in and was told I must have Laser Treatment. I asked him to show me where he could see the new vessels growing to which he said he couldn’t as the scans were not good enough to determine them. But went on and on about statistics etc. Eventually, to shut him up, I agreed so straight in and they lasered both my eyes. About 3 weeks later I got bleeds in both eyes and when I phoned them, they told me they were expecting that to happen. After 3 months, scar tissue, as they described it, had completely covered the retina in one of my eyes. I paid privately to see a different specialist and the surgeon was able to remove it all but left that eye with severe sight impairment. They took me on as an NHS patient and over a year of checking my eyes, the determined my eyes did grow new vessels but they rectified themselves. Also, they determined my retinas react very badly to Laser treatment and it should never have been done. The point of my story is, yes you should listen to the Specialists, but you should also make sure you understand the advice they give you and you, not them, decide whether you are willing to go forward with that advice.

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