hba1c warning!

Status
Not open for further replies.
bex123

bex123

Well-Known Member
Relationship to Diabetes
Type 1
i got a copy of the letter the hospital had sent to my gp and the name of the thing i have that i couldn't remember is insulin neuritis.
sympoms include dizzyness,postural hypotention nausea/vomiting/change in bowl habbits , sweating and neuralgic pain , this occurs with sudden improvement in diabetic control .i have apparently documented blood pressure as low as 70 systolic on standing and a resting tacchycardia of around 105 wich is very classic of autonomic neuropaty...on the upside i have no signs of cardiac desiese ...and i have autonomic neuropathy and have to have further tests with the medical pyhsics department to determine how much dammage has been done to my nerves.

my point is they are well informed and educated about this condition.... but do not pass this onto patients...WHY??!!

i just want to put a warning out there to people who are starting on a pump or new regime that will drasticly improve thier control.. take it slow..dropping your hba1c like a stone WILL affect you and can make things a whole lot worse than bad control

this can happen to anyone and i dont want to see anyone else feel like i do its a living hell and i wouldnt wish it on my worst enemy

bex xx
 
I must admit I've never heard of anyone being advised not to drop their levels drastically, only learned later that this can have bad effects. I agree Bex, why isn't it part of the treatment that you are 'coached' how to reduce levels gradually? It's such a tightrope sometimes, as high levels are also likely to lead to the same problems, we need to be advised that patience is a virtue rather than encouraged to get straight into 'normal' range.
 
Bex - hiya - looks like you live down the road 🙂

Thank you for bringing this up - my daughter was dx earlier this year (Poole Hospital) after being (I think) undiagnosed for over a year. Obviously she had therefore had high BS for a long time (Hb... was 16.9 at dx). Two weeks after dx the doc said to her 'so you must be feeling lots better now' and was taken aback when she said 'No'. She felt far worse for 2 to 3 weeks after dx (the only thing that was better was not being thirsty and having to get up in the night to wee). No one explained why, and we were made to feel like we were being 'ungrateful', almost. Her whole body ached and she suffered from very bad headaches. I dont know about any off the other things you mention, but I know she felt bad ...

and her first hypo at dx plus 3 weeks ....

Hope you feel better soonx
 
carolynsurry said:
Bex - hiya - looks like you live down the road 🙂

Thank you for bringing this up - my daughter was dx earlier this year (Poole Hospital) after being (I think) undiagnosed for over a year. Obviously she had therefore had high BS for a long time (Hb... was 16.9 at dx). Two weeks after dx the doc said to her 'so you must be feeling lots better now' and was taken aback when she said 'No'. She felt far worse for 2 to 3 weeks after dx (the only thing that was better was not being thirsty and having to get up in the night to wee). No one explained why, and we were made to feel like we were being 'ungrateful', almost. Her whole body ached and she suffered from very bad headaches. I dont know about any off the other things you mention, but I know she felt bad ...

and her first hypo at dx plus 3 weeks ....

Hope you feel better soonx
Click to expand...

hiya yeah just down the road 🙂
word of caution about poole...not good . i dont want to go into too much detail but advise you strongly that bournemouth has an adolecent clinic and as soon as your daughter is old enough transfer her there. x
 
This thing about sudden improvements to glycaemic control causing sudden changes could possibly explain my recent stay in Hospital, my control previously had been a bit erratic but I made a serious effort to keep my readings in the correct range (after urging from my GP and one of the consultants at Good Hope) my HbA1C fell from over 13% to 9.9% in just 4 months.
I do know that whatever the bacteria I had in my brain had been there since February at least (that's when the headaches really started) so the sudden increase in my control gave it chance to "play up"
 
Have to just give a bit of praise to my team then, the issues around tightening control too quickly was covered in a lot of depth during dafne. I do feel very grateful for the team I have, just a shame that there isn't a consistent (high) level of service everywhere...
 
Good point Bex - it should be something that is common knowledge in the diabetes world and especially to new pumpers.:confused:🙂Bev
 
Its well known that lowering levels rapidly can cause problems. Though of course so can remaining at high levels .
The most usual problem seems to be an increase in retinopathy but presumably that is indicative of other microvascular problems.
I often worry when people are urged to reduce levels quickly when they have been high for a while or on diagnosis when they may have had undiagnosed high levels for a while. I don't always have the courage of my convictions to 'go against the flow.'
The place I read about it first was the Good Hope retinopathy website but it also came up when I went on a pump. Here, in France they insist that you have a full eye examination by a specialist, using fluorescein dye before going on a pump. This shows changes not visible using the more normal routine examinations. People with potential problems are advised to lower their levels gradually.

(Personally I was told that the examination was just a hoop to go through. My HbA1c was already extremely low, high levels were not the reason I went on a pump. I did however have some indications of retinopathy. Maybe it was caused because I lowered my levels very quickly on diagnosis)
 
HelenM said:
Its well known that lowering levels rapidly can cause problems. Though of course so can remaining at high levels .
The most usual problem seems to be an increase in retinopathy but presumably that is indicative of other microvascular problems.
I often worry when people are urged to reduce levels quickly when they have been high for a while or on diagnosis when they may have had undiagnosed high levels for a while. I don't always have the courage of my convictions to 'go against the flow.'
The place I read about it first was the Good Hope retinopathy website but it also came up when I went on a pump. Here, in France they insist that you have a full eye examination by a specialist, using fluorescein dye before going on a pump. This shows changes not visible using the more normal routine examinations. People with potential problems are advised to lower their levels gradually.

(Personally I was told that the examination was just a hoop to go through. My HbA1c was already extremely low, high levels were not the reason I went on a pump. I did however have some indications of retinopathy. Maybe it was caused because I lowered my levels very quickly on diagnosis)
Click to expand...

when i fell pregnant two months prior to finding out my hba1c was 8.2% then id say two weeks after finding out it was 6.4 which was coming down anyway as i knew my control was poor due to stress so had already made efforts to get it down! anyway long story short my hba1c came down further to 4.5% for the duration of my pregnancy and now 7 month later(after being preggo) its only 5.4% now I dont have any eye problems or that but just gets me thinking that the headaches i have been getting lately (more like weird sensations high up on one side) might be related to the sudden improved control? or even the fact i cant hold a phone in either hand for more than 4 mins before it going tingly then completely numb..... lol what you guys think??:confused: im probs being paranoid lol x
 
My retinopathy was triggered by starting on a pump. Long term poor control (10 years or so of double-figure or just under HbA1cs) then within 3 months of pumping a drop to just under 7% and a large haemmorhage (sp!) in my right eye.

Nobody at any time mentioned dangers of rapid improvements in control - I was always led to believe it was a very desirable thing, and the sooner the better.

Ho hum.
 
no one ever mentioned to me about how dramatic improvement can cause problems. Its why I have peripheral nueropathy. And its why I'm now paranoid that these things will get worse since being on a pump :(

I think however that if anything my HbA1C will go up. But never ever am I going to try for a huuuuuge reduction in HbA1C again, not after my foot problems.

I have to say, since getting my control so imporved I have been a little paranoid about problems developing. I've noticed my feet getting worse, which is why I'm insisting on seeing the podiatrist and also insisting on seeing the eye photo man. Autonomic nueropathy is something that frightens me silly and bex, when you mentioned what happened with yourself it really brought it home for me...and now I'm frightened silly :(
 
SilentAssassin1642 said:
no one ever mentioned to me about how dramatic improvement can cause problems. Its why I have peripheral nueropathy. And its why I'm now paranoid that these things will get worse since being on a pump :(

I think however that if anything my HbA1C will go up. But never ever am I going to try for a huuuuuge reduction in HbA1C again, not after my foot problems.

I have to say, since getting my control so imporved I have been a little paranoid about problems developing. I've noticed my feet getting worse, which is why I'm insisting on seeing the podiatrist and also insisting on seeing the eye photo man. Autonomic nueropathy is something that frightens me silly and bex, when you mentioned what happened with yourself it really brought it home for me...and now I'm frightened silly :(
Click to expand...

hiya sam , i certainly dont want to worry you or anyone else or be a scaremonger i just want to advise as it seems the profesionals dont , i have to add my hba1c went from 12.3 to 10.8 in 3 months before the pump as i was told to try really hard to get some kind of control then from 10.8 to 8.0 in a month on the pump , quite scarey now i think about it...

please dont worry just be verry aware of how u are feeling as these symptoms crept up on me over the last 2 months and have now knocked me off my feet

definatley think this is something that should be common knowlage in the diabeties comunity... and will write do jdrf and duk about it

i know you have been worrying but def think you should talk to jakie ryder if ur worried ( if u can get hold of her!) she sorted all the tests out for me and to see a new doc called dr partridge , because my gp had given up on me and started trying to shove antidepresents down my neck i went to her and explained how i was feeling and shes been brilliant (when i can get hold of her)

and def dont read too much on the internet about this stuff as most of it is scaremongering xx
 
Status
Not open for further replies.
Back
Top