Conflicting Information from DSN's

[SJGrieves]

I am going to try and give as much detail as I can without making things to confusing if I can, bare with me.

I haven't looked after my diabetes for a long time, and I mean years. I used to go months and months without even checking my sugars let alone taking any insulin with meals, the only injection I did was my lantus at night.
Recently me and my husband would like to start trying for a baby. I mentioned this to my consultant and he got me in touch with a diabetic midwife to get my sugars on track and give me advice to where I need to be. She asked me when I'd like to start trying, i said the end year, October, November time. She seemed fine with this and said I was aiming for a HB1c of 53.
We went through what my insulin ratio should be and with some trial and error and several phone coversations I was on track, counting carbs and taking insulin with every meal, aiming for a BM between 5-8mmols and it was working I was so happy. Two weeks into this I went back and she took my HB1c again to see if it had came down.
Today, 6 weeks down the line, I went for my review with a DSN, when we looked at my HB1c it had came down to 96 (its always been around 110) I said I was over the moon with that because that was only 2 weeks worth of me doing things properly. She gave me a sharp look and asked me what BS I was aiming for, I said between 5-8 and she said no no no you need to be coming down slowly, apparently it can be really bad for my eyes and my kidneys if I being my HB1c down too quickly and I should be looking at aiming for a HB1c of 53 by spring next year not autumn this year.
Anyone ever heard of this?
Ive came from that appointment today so upset and so confused, Id hate to think I was doing anything to quick and doing things wrong, ive been so obsessed with carb counting and no one really understands how hard this is and how much of a big deal it is for me. Im so confused I havent taken any insulin with food since my appointment because im scared ill be doing more damage. Ive spent most of the day in tears. I just really doung know what to do..... Help

 

[himtoo]

hi there @SJGrieves

aawwwwwwww ! lovely young lady -- I do feel for you ------- the reality is that you do need to make the reductions slow -- if you reduce too quickly you will get issues with your eyes ( even if only temporary )

your body gets used to "running" at the levels you run at -- so sudden changes will cause your body to do a sort of OMG !!!!!!!!!!

just continue doing your best and it may take until next spring but hopefully you will be "ready to rock" in the winter

Diabetes is a marathon race -- so try not to get your hopes of a 100 metre sprint win too attached ( if that makes sense)

sending big hugs to you and hubby [[[hugs]]]
xxx

 

[SJGrieves]

@himtoo
thank you, this has just annoyed me to be honest, why is my pre midwife assisting me to get my HB1c down as soon as possible, she specialises in diabetes so surely she knows the risks? I have an appointment with her on Tuesday, I really feel like I dont want to go as I really dont trust her right now. I'm going to ring tomorrow and try and get an appointment with my consultant as soon as possible. Im crying out for help, and Im ready to sort myself out, but I feel like im just being fobbed off at the moment

 

[noblehead]

She gave me a sharp look and asked me what BS I was aiming for, I said between 5-8 and she said no no no you need to be coming down slowly, apparently it can be really bad for my eyes and my kidneys if I being my HB1c down too quickly and I should be looking at aiming for a HB1c of 53 by spring next year not autumn this year.

Have you been told at any point that your have any changes to your eyes at the Eye Screening Service? If not then I would just tell the Nurse what your Consultant said and tell them you are being guided by the Specialist Midwife.

 

[Snapsy]

Hugs, @SJGrieves . Good move to try to get to see the consultant - would be nice to get some clarity.

I'm excited for you to be on the way to starting a family!

xxx

 

[Dark Horse]

Opinions differ. A sudden increase in diabetic control can worsen diabetic retinopathy in the short term so some people suggest not improving control too rapidly. However, some people suggest that the long-term benefits of improved diabetic control outweigh the short-term risks of worsening of diabetic retinopathy so it's better not to delay.

Have a read of this:- http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

 

[slip]

Both nurses are looking at it from different angles, and both are correct - and both trying to do the best for you.

It may feel confusing and cause upset getting conflicting advice from people you trust, just be open and honest with both of them, keep them both informed as to what the other nurse is saying, between the 3 of you you will come up with a plan, but at the end of the day it is you who is the major stake holder in this 'team' - you have the casting vote!

 

[JMK1954]

When you see the consultant, make sure that you tell him about the effect this conflicting advice is having on you. All HCPs try to pretend this sort of situation never happens and that it's unimportant, but it shakes our confidence and if it's making you hesitate to take insulin, it's not the right advice for you as a type 1.

 

[azure]

@himtoo
thank you, this has just annoyed me to be honest, why is my pre midwife assisting me to get my HB1c down as soon as possible, she specialises in diabetes so surely she knows the risks? I have an appointment with her on Tuesday, I really feel like I dont want to go as I really dont trust her right now. I'm going to ring tomorrow and try and get an appointment with my consultant as soon as possible. Im crying out for help, and Im ready to sort myself out, but I feel like im just being fobbed off at the moment

Could you use your DSN for advice instead? That is, get advice on BS targets over the next few months so you know what you're aiming for exactly?

I saw a midwife but got my diabetes advice from my DSN.

 

[Bon83]

I am going to try and give as much detail as I can without making things to confusing if I can, bare with me.

I haven't looked after my diabetes for a long time, and I mean years. I used to go months and months without even checking my sugars let alone taking any insulin with meals, the only injection I did was my lantus at night.
Recently me and my husband would like to start trying for a baby. I mentioned this to my consultant and he got me in touch with a diabetic midwife to get my sugars on track and give me advice to where I need to be. She asked me when I'd like to start trying, i said the end year, October, November time. She seemed fine with this and said I was aiming for a HB1c of 53.
We went through what my insulin ratio should be and with some trial and error and several phone coversations I was on track, counting carbs and taking insulin with every meal, aiming for a BM between 5-8mmols and it was working I was so happy. Two weeks into this I went back and she took my HB1c again to see if it had came down.
Today, 6 weeks down the line, I went for my review with a DSN, when we looked at my HB1c it had came down to 96 (its always been around 110) I said I was over the moon with that because that was only 2 weeks worth of me doing things properly. She gave me a sharp look and asked me what BS I was aiming for, I said between 5-8 and she said no no no you need to be coming down slowly, apparently it can be really bad for my eyes and my kidneys if I being my HB1c down too quickly and I should be looking at aiming for a HB1c of 53 by spring next year not autumn this year.
Anyone ever heard of this?
Ive came from that appointment today so upset and so confused, Id hate to think I was doing anything to quick and doing things wrong, ive been so obsessed with carb counting and no one really understands how hard this is and how much of a big deal it is for me. Im so confused I havent taken any insulin with food since my appointment because im scared ill be doing more damage. Ive spent most of the day in tears. I just really doung know what to do..... Help

Personally I find conflicting information really annoying but as others have said they are coming from different angles. I would be more inclined to listen to a consultant or diabetes midwife as they generally are a bit more clued up - also during pregnancy and conception control is ideally tight. My consultant (I only saw them twice since diagnosis a year ago) was quite happy with me reducing my blood sugar as much as I could - I have no eye or kidney issues to consider. It was sky high at diagnosis of type 1. She also told me that 3.5/8 bg reading is ok for a youngish person and she probably got bg like that as a non diabetic - particularly overnight. I was a bit dubious about this but I think it is true non diabetic people have pretty low bg. I have a paranoia about hypos so haven't gone that low and left it. However when I told the dsn at the gp surgery all of this she seemed quite put out and went on for ages about hypos. It's hard but I would agree with others that the choice is with you.

 

[Daibell]

I'm not aware of any rules as to the rate at which you should reduce your average BS. I can only say just use some common sense but 'next Spring' seems silly to me and too long. A blood sugar target range of 5-8 mmol two hours after a meal seems quite sensible to me for a diabetic.

 

[azure]

@SJGrieves If you look in the Pregnancy section (which also covers trying to conceive, breasrfeeding and life with a young baby) you'll find threads discussing lowering HbA1C pre-conception and then you can get an idea of what other ladies did and are doing

You could also ask questions there or I could move this thread tomthat sectiin if you like

 

[SJGrieves]

Have you been told at any point that your have any changes to your eyes at the Eye Screening Service? If not then I would just tell the Nurse what your Consultant said and tell them you are being guided by the Specialist Midwife.

I have just had results back from my most recent eye test and I'm waiting for an appointment with the eye hospital for further investigation... I've noticed a difference in my vision over the past 2 weeks. I cant focus on things in the distance, this is why it upset me when my DSN said it would effect my eyes. Feel like I've done damage by trying to do something right (I'm scared to take my insulin incase I damage my eyes, said no Diabetic ever...)

Opinions differ. A sudden increase in diabetic control can worsen diabetic retinopathy in the short term so some people suggest not improving control too rapidly. However, some people suggest that the long-term benefits of improved diabetic control outweigh the short-term risks of worsening of diabetic retinopathy so it's better not to delay.

Have a read of this:- http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

Thats what I thought, really feel like I'm stuck between a rock and a hard place.

Both nurses are looking at it from different angles, and both are correct - and both trying to do the best for you.

It may feel confusing and cause upset getting conflicting advice from people you trust, just be open and honest with both of them, keep them both informed as to what the other nurse is saying, between the 3 of you you will come up with a plan, but at the end of the day it is you who is the major stake holder in this 'team' - you have the casting vote!

At the mintue I dont really know who to trust. My DSN also told me I shouldnt be splitting my lantus to twice a day, but I do it because my consultant advised me too... My midwife knew I was aiming to start trying for a baby when I was ready HB1c wise, which we both agreed September which was 3 months away, she never mentioned anything about possible eye or kidney problems. I know I'd have the casting vote but I dont know whos advice to follow, I cant get an appointment with my consultant untill the end of September.

Could you use your DSN for advice instead? That is, get advice on BS targets over the next few months so you know what you're aiming for exactly?

I saw a midwife but got my diabetes advice from my DSN.

I'm seeing both a diabetes midwife and my DSN, I was following the advice of my midwife, then thrown by my DSN saying I was putting myself at risk by lowering my BMs so quickly. Bit of a let down when you go in expecting praise and coming out in tears cause youve been told all the effort youve been putting in was all wrong.

I'm not aware of any rules as to the rate at which you should reduce your average BS. I can only say just use some common sense but 'next Spring' seems silly to me and too long. A blood sugar target range of 5-8 mmol two hours after a meal seems quite sensible to me for a diabetic.

Thats what I thought, first time I've heard you can do damage by having a perfect blood sugar... Spring seems to far away now when I was aiming for late September.

@SJGrieves If you look in the Pregnancy section (which also covers trying to conceive, breasrfeeding and life with a young baby) you'll find threads discussing lowering HbA1C pre-conception and then you can get an idea of what other ladies did and are doing

You could also ask questions there or I could move this thread tomthat sectiin if you like

I'll have a look on that section, thank you.

 

[Shiba Park]

I have just had results back from my most recent eye test and I'm waiting for an appointment with the eye hospital for further investigation... I've noticed a difference in my vision over the past 2 weeks. I cant focus on things in the distance, this is why it upset me when my DSN said it would effect my eyes. Feel like I've done damage by trying to do something right (I'm scared to take my insulin incase I damage my eyes, said no Diabetic ever...)




Thats what I thought, really feel like I'm stuck between a rock and a hard place.



At the mintue I dont really know who to trust. My DSN also told me I shouldnt be splitting my lantus to twice a day, but I do it because my consultant advised me too... My midwife knew I was aiming to start trying for a baby when I was ready HB1c wise, which we both agreed September which was 3 months away, she never mentioned anything about possible eye or kidney problems. I know I'd have the casting vote but I dont know whos advice to follow, I cant get an appointment with my consultant untill the end of September.




I'm seeing both a diabetes midwife and my DSN, I was following the advice of my midwife, then thrown by my DSN saying I was putting myself at risk by lowering my BMs so quickly. Bit of a let down when you go in expecting praise and coming out in tears cause youve been told all the effort youve been putting in was all wrong.



Thats what I thought, first time I've heard you can do damage by having a perfect blood sugar... Spring seems to far away now when I was aiming for late September.



I'll have a look on that section, thank you.

Did the DSN say it would affect your eyes or affect your eyes permanently?

When I was diagnosed nobody suggested I should bring my levels down gradually.... I'm not a medic so I've no Idea of the rights and wrongs of either approach. I went straight from 30+ to around 7 to 10 immediately and my vision did go very blurred for a few weeks but returned to normal. I was told this was normal, the glucose level in your eyes drops slowly, distorting your vision. I have no idea if this was risky, but at the time this was a price I gladly paid to feel so much better. And my eyesight doesn't seem to have been permanently affected.

All the best,

Shiba.

 

[SJGrieves]

Did the DSN say it would affect your eyes or affect your eyes permanently?

When I was diagnosed nobody suggested I should bring my levels down gradually.... I'm not a medic so I've no Idea of the rights and wrongs of either approach. I went straight from 30+ to around 7 to 10 immediately and my vision did go very blurred for a few weeks but returned to normal. I was told this was normal, the glucose level in your eyes drops slowly, distorting your vision. I have no idea if this was risky, but at the time this was a price I gladly paid to feel so much better. And my eyesight doesn't seem to have been permanently affected.

All the best,

Shiba.

She didn't say. She just said if my Hb1c was 111 then three month later it was 60-70 she would be concerned about the damage I would be causing to my eyes and my kidneys, and my blood sugars would be lower so I'd feel better in myself but my body wouldn't be healthy. She didn't say whether it would be temporary and treatable or permanent. To be honest by that point I wasn't really in the mood to think clearly enough to ask.
I have an appointment with my GP tomorrow who specialises in diabetes (more on the type 2 side) but I'm hoping he can shed some light while I'm waiting for an appointment with my diabetes consultant.

Sent from my SM-G935F using Diabetes.co.uk Forum mobile app

 

[GrantGam]

She didn't say. She just said if my Hb1c was 111 then three month later it was 60-70 she would be concerned about the damage I would be causing to my eyes and my kidneys, and my blood sugars would be lower so I'd feel better in myself but my body wouldn't be healthy.

I have heard that rapid reductions in HbA1c have the potential to cause ocular damage of sorts. My diabetologists and DSN have mentioned this in the past.

I took my HbA1c from 127 to 65 in eight weeks and down to 56 four weeks after that. At no point did anyone step in and say what I was doing could damage my health. I'm only assuming that the reduction wasn't deemed 'rapid' enough to cause harm. I've had no discrepancies or causes for concern in my retinal screenings, so there was no damage done. My EGFR and ACR (kidney function markers) are also sound.

I'm not saying you should discredit the guidance of your health care team, definitely not. But I'm just pointing out that my fairly sharp reduction didn't bother me, nor did it concern my team.

Good luck with everything, by the way

 

[DCUKMod]

I have nothing meaningful to add to your thread, @SJGrieves , but I wonder if those who have been told a rapid reduction in blood sugars could be detrimental to their well-being have any links to supporting research that they could share with you, in order to help you expand your knowledge.

I hope it could be useful to you if they could post some links to research from reputable sources. It seems likely there will have been some.

Good luck with whatever you decide.

 

[Resurgam]

As you are maintaining really sensible levels between 5 and 8 mmol/l it seems odd that you are getting this argument.
You might find that drinking a glass of water at fixed points through the day helps to sort out the focusing problem, as it seems to speed up the focusing problem - when away from home for a few days I did not keep to the schedule of drinking a glass of water morning noon and night, and progress halted for a week. Unadulterated water is supposed to be good for kidneys too.

 

[noblehead]

I have just had results back from my most recent eye test and I'm waiting for an appointment with the eye hospital for further investigation... I've noticed a difference in my vision over the past 2 weeks. I cant focus on things in the distance, this is why it upset me when my DSN said it would effect my eyes. Feel like I've done damage by trying to do something right (I'm scared to take my insulin incase I damage my eyes, said no Diabetic ever...)

The people who work in the Ophthalmology Clinics are fantastic and very experienced at dealing with people who have diabetes, so in other words your in good hands so try not to worry.

Just make a note of any questions that you want answered and ask the Ophthalmologist on the day, good luck.

 

[SJGrieves]

Thank you for all your replies, I have managed (with some begging) to get a cancelled appointment with a (not my regular) consultant on Thursday, so hopefully all questions will be answered then, I'll let you all know how it goes....