wind knocked from my sails

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wind knocked from my sails

Postby stewy » Tue Jun 22, 2010 12:04 am

I guess this is a bit of a vent.
I saw a new endo today after 1 yr 2 months since diagnosis.
My last two HbA1c results were both 5.8 and this week was 6.2
I do keep my levels fairly tight and check fairly often, and my previous doc used to say things like "I wish all patients were as diligent as you."
Basically I do everything I've been told and it has been working well (I thought) and I was actually pretty happy with everything.
So today's doc told me my HbA1c is too low, I should aim for 7, and that I am at risk of developing hypo-unawareness with such a low HbA1c all the time.
I explained how I was told to aim for BGL of 4-6 before a meal and 6-8 after. Apparently I took that too literally.
So... u think you're doing the right thing by your body....

apparently not. Diabetes sucks more for me today than ever.

vent over... thanks rc peeps
stewy
 
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Postby sheldy_robbie » Tue Jun 22, 2010 3:43 am

hey stewy that really sucks especially after thinking that you have out in all that hard work only to be told you could be doing things wrong. well done for keeping things so well controlled and im sure that with a little advicce you will be able to get your HBA1C back up a bit pretty easy with you past sucess im keeping things in your control. one thing im just learning now is that diabetes keeps on throwing curve balls whenever you least expect it but all you can do it keep going day by day and enjoy each one. ive just hit the threee month mark so pretty excited to see what my first HBA1C is =] and a little nervous

good luck mate
[color=#BF0080]i beleive life is made up of years that mean nothing and moments that mean it ALL[/color]
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Postby Daniel » Tue Jun 22, 2010 9:22 am

Hi stewy. We all know how frustrating it is when you work hard at something and seem to get knocked for it!

Your diabetes team obviously have a very different outlook to how things work where I am (UK). They aim at us at the lowest A1c's and really congratulate you when they're low (of course assuming they're not just low because you're hypo all the time). Your A1c sounds great... so if you're happy with it - be pleased about it!!
Dan
DX'd with Type 1 in 05
MDI; trying for a pump!
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Postby Jen (nli) » Tue Jun 22, 2010 10:20 am

Its interesting how these things differ according to the health professional. My endo would be rapt if I had an hba1c under 6.5! I'd be rapt too. When I get 7 its considered okay but my last hba1c was something like 7.3 and I was told to get it back down (in a nice way... but the message was clear).

Maybe we could swap endos?

I don't know. I tend to think if you are managing those levels well that's fantastic. Why aim for worse control? If you were have problems with hypoing that's a different story, but if its not broken, no point in "fixing" it... (shrugs).
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Postby Azile » Tue Jun 22, 2010 11:05 am

Hi Stewy,

As the others have said, opinions and treatment plans differ from one person to the next let alone one state/city /country to the next.

I think your levels are fantastic and the work you have put in has been amazing but what do I know? I'm not a pro, just a diabetic!

Is there any way you would feel comfortable in expressing your sentiments, backed up with a little research so the next time you see your Endo, you will feel more in control and can debate your case?

I'm neither an argumentative or confrontational person but I have become a lot more robust in my conversations with all types of people. The other person will either step up and be able to back up their views hence showing they do know what they are on about, or become heated and opinionated and you can take that how you want or they will with interest and respect enter the conversation and both will learn something and feel happier and more respectful of the other!

This probably doesn't help but we know that real life diabetes is not a bunch of formulas and hit and miss theories but a constant, at times, minute by minute experiment and there is no real "getting it right".

Good luck....and chin up. Reset your sails and go run your endo over!
T1 since Jan 2008...I did get diabetes for Christmas!!
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Postby Kate » Tue Jun 22, 2010 1:56 pm

Ah Stewy - sounds like the message wasnt delivered in a very helpful way - there is increasing recognition that 'the lower the better' isnt always the best answer but it is a rather hotly debated area of medicine that you have got stuck right in the middle of. I am pretty appalled that you were made to feel the way you were .... :( If you think it is part of a bigger issue and you're not getting the support you need, there are plenty of other diabetes centres in the sea ..... Best of luck, and feel free to rant and vent as much as you need here!! Kate
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Postby mfcr06 » Tue Jun 22, 2010 2:03 pm

I too was told that a HbA1c lower than 7 was risking hypo-unawareness by my then endo.

My current endo also errs on the side of caution and seems to look at the bigger picture also.

Not much point having a 6 if you are hypoing all the time.

Whatever works for you is what you should do. noone knows your D like you do.
Fiona - T1D Mum of Blue and Pink
Surviving 34 years of T1D :)
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Postby ilikeplanes » Tue Jun 22, 2010 3:16 pm

Stewy,

My A1c is consistently between 5.5-6.2 and my doc couldn't be more pleased! I test about 6-8times a day, and 99% of the time my level is between 5-8mmol. This is all achieved without hypo's (well the occasional 3.0!).

And to throw a spanner in the works about hypo unawareness, i can feel i'm getting low at around 4.0-4.5mmol.

I don't want this post to sound like i am bragging, because that's hardly the case. I just seem to be getting things right at the moment i guess? But i wanted to highlight and to say a bit of an "up yours" to this "health professional" you saw!

Moral of the story: we're all different and i think your results speak for themselves! I'd be damned proud of those numbers you posted :-) Keep working hard i say!

Ryan
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Postby Caraline » Tue Jun 22, 2010 3:30 pm

Wow it sounds like you are damned if you do and you are damned if you don't. I work hard to keep my A1c in a similar range to yours and my endo lavishes me with praise for it. I'd be righ royally p---ed if I was asked to bump it up to 7. Grrr!
Minimed 640G + CGMS
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Postby stewy » Tue Jun 22, 2010 4:10 pm

thankyou thankyou thankyou all!

I was beginning to think I had misunderstood all the earlier praise I received with previous HCPs. Especially as this new Endo comes very Highly recommended. At the time I was so perplexed I gave up trying to negotiate. I totally understand her direction... The HbA1c J curve and the battle between complications and hypos etc, but like 'ilikeplanes' my levels are a happy healthy 5-8mmol. My only lows are thru occasionally miscalculating carbs when I dine out.. always recognised with symptoms and quickly corrected.

I test 6-10 times a day mostly due to my job (both physically demanding and lots of driving) and am perfectly happy doing so.

Just to top off my fabulous session... according to the Endo, I have an 'obsessive' personality type. Apparently those of us who have such tight control are like that. Cool... an endo and a shrink in 1... bargain!

I should add though that she wasn't actually rude or nasty, and she was very good at explaining things with her diagrams and stuff... I guess we were just on a very different wavelength.

thanks for being so supportive everyone. I feel loads better reading your replies.
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Postby Trudi » Tue Jun 22, 2010 7:56 pm

So I'm fascinated that when trying to conceive, the advice is HbA1c's of lower than 6.5 - I wonder stewy what your Endo's advice would be in that situation?
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Postby Kate » Tue Jun 22, 2010 10:11 pm

Stewy - What a trooper. Really glad you are feeling better about things.

Trudi - This is all getting very controversial (!) but I was recently speaking with an obstetrician very experienced in type 1 d & pregnancy who made a strong case for not pushing d women to have such low a1cs. He told me about a study in Italy where the doctors got the women to have incredibly low a1cs. In his words "the babies were great, but the mothers were f***ed". He also said that once you get the a1c below 8 there is negligible difference in outcomes for bub, negligible improvements as the a1c goes further and further down but a lot of serious risks for the mother. OK, so I am not entirely sold on this second part and am yet to see the evidence myself (and can hear my endo quaking in her boots). I did query this obstetrician and about the contrary advice that was common to get a1c as low as possible and his response was very interesting .... saying "these are the games we play", and if you look at the evidence, all the evidence, the benefits and all the risks need to be weighed up carefully. Interesting indeed ..... and quite a hijack of Stewy's thread (sorry!). K
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Postby Kezza » Tue Jun 22, 2010 11:58 pm

Kate wrote:He also said that once you get the a1c below 8 there is negligible difference in outcomes for bub, negligible improvements as the a1c goes further and further down but a lot of serious risks for the mother.

This is getting into further hijack territory, but....
My previous endo (who only my ex-endo after being appointed Director and CEO of a major hospital and leaving private practice) said pretty much exactly that. I am seeing his colleague on Tuesday and plan to ask if he agrees and where the evidence is.

Stewy, I'm glad you're feeling better - I'd be stoked if I had consistent BSLs and such a low HbA1c!
Ever tried to send a text message with your pump? It doesn't work!
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