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Not type 1 or type 2

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Not type 1 or type 2

Post  beaniequeenie on Tue Mar 08, 2011 3:22 pm

I had a FULL medical with Bupa last week, and finally got to speak to a Dr who 1) Seemed to listen to me & not think I'm stupid and 2) Actually cared about sorting out my glucose control.

After a few tears and an 1 1/2 worth of talking she mentioned a few things. (just wondering if anyone has heard of, or has any experience of them);

Mody diabetes. (Yes I can be very moody but I don't think that's what she meant! Smile ) I googled this and found out some stuff, but it seems like it isn't a route the NHS really take.
Type 1 type 2 mix. This was something that was mentioned before to me, but it seemed to complex for my NHS nurse, who I think only just manages to grasp diabetes at times. (So they abandoned all talk of that.)
sulphonylureas & ACE. These were mentioned by Bupa as an alternative to insulin. Well sulphonylureas lead to weight gain (erm no thanks I have enough problems there) and arent both only used to treat type 2?

Also I'm paying to see a specialist privately on Thursday (my fault, work have private health scheme but I didn't select it at the start of the year). I don't mind if I get some honest answers but there's a huge hole in my pocket now! Rolling Eyes
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Re: Not type 1 or type 2

Post  Nick on Tue Mar 08, 2011 7:36 pm

Hi Beanie,

I'll try and do some work on this for you but prob not til the weekend as I am so busy this week. There was/is a Prof/consultant at Exeter who was doing some work on Type 1/2 on babies/children as I heard his lecture 2008/9 ish but cannot remember his name or any other details at the moment.
Link to the Diabetes Research network page belowwhich was a search for MODY diabetes. As far as I know loads of research being done on it in different forms.
http://www.ukdrn.org/search.html?cx=013124428372020973894%3Ab5plyxttjne&q=moody+diabetes&sa=Search&cof=FORID%3A9&siteurl=www.ukdrn.org%2F#1710

Sulphs I don't think are used in Type 1 and have various side effects. They are not teh best drugs now and are being overtaken rapidly by new age meds. Somewhere in the back of my mind I think some research is being done (might even be down here) re use of Liraglutaide in type 1 or mabe it was Exenatide...sorry brain addled.

Ok just found links via DRN page again

http://www.ukdrn.org/search.html?cx=013124428372020973894%3Ab5plyxttjne&q=lirarglatide+in+type+1&sa=Search&cof=FORID%3A9&siteurl=www.ukdrn.org%252F#1245

and for exenatide
http://www.ukdrn.org/search.html?cx=013124428372020973894%3Ab5plyxttjne&q=exenatide+use+in+type+1&sa=Search&cof=FORID%3A9&siteurl=www.ukdrn.org%252F#1257

God I'm good Smile

Take a look and see what's happening in the links. If it is from DRN then you can trust the reports and it's not quackery Smile

Why don't you join up as a patient advocate/lay like Taz, Jim who I think is also lurking on here Smile and myself. You will or should get lots of different education about diabetes and you do get a chance to speak to Consultants 1 to 1 and ask them questions at meetings Smile

Hoep it helps

night night

Nick

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Re: Not type 1 or type 2

Post  beaniequeenie on Fri Mar 25, 2011 10:09 am

Thank you for the links Nick, I had a read and I though I was signed up already, but I have sent an e-mail asking for my details, waiting for a reply.

I got my medical bill through. 250 to see the consultant, that's fine. But the blood tests cost me 1150!!!!! Shocked OH well, that's the price we pay for staying alive I guess.

Funny thing was the consultant I saw is the same one who diagnosed me in the first place, and I stopped seeing them cos they went on maternity leave so transfered me to someone else. Anyway, she remembered me and my case (see I'm so special she remembers me 3 1/2 years later! Smile ) and she said she was never happy with my diagnosis. So now she is looking into me possibly have MODY or type 2 (But surely after this long they would know if I was type 1 or 2? Just looking at a cake bar puts my BG at 18!)

So, my plan, so I don't need to seel my soul everytime a bill comes through, is to get her to figure out what meds I need, then next time I see my NHS consultant tell them to transfere me back to the one I'm paying to see. Then I can see her on the NHS and save my self a lot of hassle!

Oh, and I had my eye test, which I think was all clear, Very Happy although I doubt the guy knew what he was looking at, he seemed a bit lost.
But the whole diabetes thing is really getting me down right now, I just keep crying every couple of hours Sad . I've decied that I'm beyond help and this is never going to get sorted (which totally contradicts everything I've written above I know Embarassed ). If only I could console myself with a nice bar of chocolate and wine Very Happy ...

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Re: Not type 1 or type 2

Post  Nick on Sat Mar 26, 2011 5:58 pm

Hi Beanie,

Hells Teeth!!! re cost of bloods!!!!!

Good re getting help via NHS instead of forking out !

No you're not beyond help or being helped...just haven't got there yet Smile

Chin up chicken...nil desperandum and all that

Lifes for living
and red wine helps to reduce blood sugars Very Happy

Take care kiddo

Nick



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Re: Not type 1 or type 2

Post  beaniequeenie on Tue May 03, 2011 9:58 am

Latest update (for those who are not bored of my ranting.)

Went to see the private specialist again last week. All the (very expensive) blood test results were back and there had been lots of long discussions about what to do about me. Final result is.... There is nothing left that they can do.

What ever it is that I am doing (which I can tell you is not that great, given my hba1c is 9.8 now) is the best thing that can be done. Given that my latest graph of bg readings was a huge zig-zag picture, that doesn't fill me with much hope.

I think that the consultant I saw was quite upset too. I got my consultation for free (not that there was much consulting going on, I was just in floods of tears) and they are going to write to the team at Kings College London, who do loads of research stuff, to see if they have any ground breaking ideas. But I don't know if they even see patents there. So that could fall flat on it's face too.

Rant over. Thanks for listening.
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Re: Not type 1 or type 2

Post  Clare on Tue May 03, 2011 1:21 pm

Oh my god, and I thought it was just my family that's a bit freaky when it comes to health stuff Shocked

Keep positive - I know it's really hard to when everything's so up in the air, but think of yourself as part of a ground breaking team - all the big guns are talking about you. There are probably lots of other T1s that are going through the same thing as you, and by studying you all, they may come up with a common factor that will solve all your problems.

(I was a case study after my big asthma attack and a paper was written about both my breathing problems and the reaction I had to Ketamin - believe me, I lived on another planet for a few weeks and am still suffering the effects nearly four years on Shocked
I'm hoping that by studying me they can help other sufferers that need to be put into a medically induced coma.)

The same could happen with you. Your situation could help them develop a new treatment.

Feel free to keep ranting - that's what we're here for Very Happy

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Re: Not type 1 or type 2

Post  Nick on Tue May 03, 2011 5:35 pm

Hi Beanie,

Clare is dead right...rant away as much as you like cos it is actually really informative too Smile

She is also right about you hopefully being a pathway to treatment discovery for you and others like you (there just must be others!)

Here's hoping for you Smile

Nick

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Re: Not type 1 or type 2

Post  beaniequeenie on Fri May 06, 2011 8:27 am

Thank you both, I will let you know if there are any more developments. Fingers crossed!
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Re: Not type 1 or type 2

Post  beaniequeenie on Tue Jun 28, 2011 9:15 am

Time for the latest instalment in the exciting life of my blood sugar readings. Rolling Eyes (Well since it's been so quiet on here I thought I'd give you all something to read.)

Appointment with the super specialist (Prof Amiel) is booked for August. But I'm not getting my hopes up for anything coming out of that. Sounds bad, but thus far no-one has managed to help me. Maybe, just maybe they will have something useful to say though.

I had a 6 day CGM (continuous glucose monitor) fitted last week. Low and behold the only thing they said was "Oh there results seem a bit odd, maybe there was a problem with the monitor, or maybe my canula sites are bad."
Nope, I didn't accept that. I had told them before that I would do it on the understanding that they took the readings for what they were, no rubbish about broken monitors or incorrect calibrations, and any other number of excuses they could fabricate. Oh and btw if I had a "bad" canula site, the pain when you first put it in and every time you try and give a bolus is tear-jerking Sad . So that was a load of c**p too.

(If that seems harsh, I had a CGM fitted about 2 years ago for 3 days, it was an old style one that was the size of a mobile phone and had to be put in a waterproof bag so you could have a shower. The results of that can back and my NHS team dismissed them because they were so all over the place that they didn't make sense, so blamed the monitor. But, unfortunately the monitor was right, that IS my life and also the reason why I need help. Did they listen though? No. Ho-hum.)

Lucky this time the results were feeding directly to my pump so I can also download the readings at home and take them with me in August. Until then I just have to carry on, wrong as my levels are. One day I'll get there though, (just not anytime soon).
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