Hb1c and surgery

[Petmad19]

I’m 38 years old have been diabetic since age 6 my diabetes generally has been good except for the last 3 years covid unfortunately put a stop to treatments
I suffer with horrendous periods have done most of my life I have tried everything under the sun to try and help my periods nothing has worked, I have only 1 ovary as one was removed because of cysts so other one is working overtime, basically the last just over a year I’m having major issues with my hormones it’s effecting my control a couple of weeks before I come on I have blood sugars in the 30’s I have a pump it is all set up for extra insulin etc I have the pen as well but whatever I give myself it won’t go down when we had that 2 days of heat I had HI blood, when I come on the bloods drop I test for ketones they go very high then drop an hour later, anyway basically I’m going to have a semi hysterectomy because nothing else has worked but no idea when I saw the diabetes doctor today he looked at my blood works my kidneys are fine,my eyes and feet are fine no showing diabetes has effected these it’s my hba1c is the problem had blood work January,April all ok today its 9.2 basically the hormones are effecting everything of my overall control I have to say I feel i am on my own i only herd from the diabetic clinic in January when they herd I was having surgery ment to have a appointment in April was cancelled went today only in there 15minutes. The doctor kept saying about doing blood sugars which I do but he kept going on about the libre one that you scan etc but doesn’t work with my pump would still have to prick my finger so the meter can talk to the pump I’m getting a pump upgrade this year.
i don’t hardly hear anything from them there are diabetes nurses but a nightmare to get hold off as is the gp everything is online or the phone everymonth in horrendous pain and I struggle with pain relief, was told by the gynaecologist it will be classed as urgent but understand backlog etc im going round in circles till I get the operation my hormones will be going mad I have no where to turn to, basically my hba1c is what the issue is.
i also have mutiple sclerosis and coeliac I cannot work so life is a struggle and everyday is hard I feel I have no support

 

[Pumper_Sue]

The doctor kept saying about doing blood sugars which I do but he kept going on about the libre one that you scan etc but doesn’t work with my pump would still have to prick my finger so the meter can talk to the pump I’m getting a pump upgrade this year.

Why do you need it to talk to your pump? It's a very antisocial flash monitor and doesn't talk to any pump.

I have coeliac and MS plus addison's disease and type1 diabetes also a pancreatic problem, nope I don't work as not employable but it doesn't stop me working hard to manage my diabetes.
Having a pump should be a doddle to keep your numbers down. Make sure your sites absorb insulin ok and set a basal pattern that is double what you would normally need and swap over to that when your numbers go up, doing this enables you to then add another 100% as a temp basal as needed.

I would also suspect unless you bring your A1c down they will remove your pump as that's normally written in stone. So you need to get to work and sort it out.
Having MS or coeliac has no effect on blood sugars. The op wont be done until your A1c comes down due to infection and slow healing risk.

So basically it's a basal test and setting up an extra profile so you can swap them over as needed and make use of your temp rates as well.
A pump only does what you tell it, so obviously a lot more work involved and the bus stops with the user for not using it properly.

If you can not get hold of a GP which in theory you should be able to do via the net as there's contacts for a reply within x hours then write a slow mail letter to your GP and drop it off at the surgery.
Wishing you well and hope you put into action some of the suggestions and get your A1c down and feel better soon.

 

[SB2015]

Good morning @Petmad19 and welcome to the forum. Sorry to read about how difficult you have found things, especially with the impact of your periods.

From your post I think you are currently using a pump, and fingerpicking In a meter that links to your pump. Can you tell us what pump you are using, as it is likely someone else on here will be using one too and may be able to help with specifics. Otherwise there is a lot of general information that applies to them all.

It sounds like you have been offered a Libre. I know that I found that was a game changer for me, and the current ones have alarms that tell you if you are going high or low which, along with the arrows showing how quickly you are rising/falling can help in the decisions you make about corrections/eating. These are stand alone and don’t link to pumps, (unless you use diy stuff) but can still make a big difference to people. It helped me to drop my HbA1c a lot, so could be well worth trying.

What steps have you tried in altering your basal rate profiles to account for the monthly changes. I was past all that at diagnosis but I still made good use of the option to have different profiles on my pump. I had separate ones for workdays and weekends. There are also different ways in which you can change the settings for exercise, illness, … If you are not aware of these contact your diabetes team (not the GP Practice who will have little or no knowledge of the tech stuff) and ask for their help.

With regard to any operation they will not go ahead if your levels are too high. Your pump gives you the best chance of getting things back on track and a good place to start is to get basal rates adjusted to match your needs at different times of your cycle. This takes a lot of work but it will be worth it if this enables you to get the op and also for your long term health.

 

[helli]

Hi @Petmad19 sorry to read about the problems you are experiencing.
A few years ago, I had a laparoscopic sub-total hysterectomy (LASH) - I assume this is what you are referring to as a "semi hysterectomy". It made a huge difference to my periods. So I hope you manage to get your levels lower so that you can have this too.
When our levels get high, we become insulin resistant which means we need more basal and a higher correction dose (when I get above 15, my correction ratio doubles and I give myself a temporary basal of 150% for the next hour). This makes managing our levels even harder. Therefore, it is better to correct before we hit these levels.
This is where a Libre could be fantastic. Don't think of it as a replacement for finger pricks but think of it as an alarm to tell you when to finger prick. It keeps track of your levels so you can see what happens between finger pricks and will alert you when you go high (or low) so you know to make a correction before you get to 30 and start the spiral of insulin resistance.
A Libre is also brilliant for basal testing. You don't have to wake yourself up every hour to take a test over night - you just look at your graph in the morning and decide when you need more (or less basal) and adjust your basal profile accordingly. Likewise, during the day, the Libre graph can show you when you need more or less basal. Sadly, you have to avoid eating during the time you are doing your basal testing which is why it is good to split your day up and don't do it all in one day. It makes sense to do this when your hormones are most active and when they are not so you can plan two different profiles to use.

Good luck. I hope you manage to get to grips with your diabetes and sort out that LASH.

 

[Petmad19]

I was offered the libre tried it but wasn‘t for me as was having to do my test twice my meter talks to the pump and it’s only once I have to test.

Hi @Petmad19 sorry to read about the problems you are experiencing.
A few years ago, I had a laparoscopic sub-total hysterectomy (LASH) - I assume this is what you are referring to as a "semi hysterectomy". It made a huge difference to my periods. So I hope you manage to get your levels lower so that you can have this too.
When our levels get high, we become insulin resistant which means we need more basal and a higher correction dose (when I get above 15, my correction ratio doubles and I give myself a temporary basal of 150% for the next hour). This makes managing our levels even harder. Therefore, it is better to correct before we hit these levels.
This is where a Libre could be fantastic. Don't think of it as a replacement for finger pricks but think of it as an alarm to tell you when to finger prick. It keeps track of your levels so you can see what happens between finger pricks and will alert you when you go high (or low) so you know to make a correction before you get to 30 and start the spiral of insulin resistance.
A Libre is also brilliant for basal testing. You don't have to wake yourself up every hour to take a test over night - you just look at your graph in the morning and decide when you need more (or less basal) and adjust your basal profile accordingly. Likewise, during the day, the Libre graph can show you when you need more or less basal. Sadly, you have to avoid eating during the time you are doing your basal testing which is why it is good to split your day up and don't do it all in one day. It makes sense to do this when your hormones are most active and when they are not so you can plan two different profiles to use.

Good luck. I hope you manage to get to grips with your diabetes and sort out that LASH.

on my letter its says“ I have booked her for a total laparoscopic hysterectomy“ it gets confusing with medical terms

 

[Petmad19]

Good morning @Petmad19 and welcome to the forum. Sorry to read about how difficult you have found things, especially with the impact of your periods.

From your post I think you are currently using a pump, and fingerpicking In a meter that links to your pump. Can you tell us what pump you are using, as it is likely someone else on here will be using one too and may be able to help with specifics. Otherwise there is a lot of general information that applies to them all.

It sounds like you have been offered a Libre. I know that I found that was a game changer for me, and the current ones have alarms that tell you if you are going high or low which, along with the arrows showing how quickly you are rising/falling can help in the decisions you make about corrections/eating. These are stand alone and don’t link to pumps, (unless you use diy stuff) but can still make a big difference to people. It helped me to drop my HbA1c a lot, so could be well worth trying.

What steps have you tried in altering your basal rate profiles to account for the monthly changes. I was past all that at diagnosis but I still made good use of the option to have different profiles on my pump. I had separate ones for workdays and weekends. There are also different ways in which you can change the settings for exercise, illness, … If you are not aware of these contact your diabetes team (not the GP Practice who will have little or no knowledge of the tech stuff) and ask for their help.

With regard to any operation they will not go ahead if your levels are too high. Your pump gives you the best chance of getting things back on track and a good place to start is to get basal rates adjusted to match your needs at different times of your cycle. This takes a lot of work but it will be worth it if this enables you to get the op and also for your long term health.

My pump has been set up with various basil rates profiles and I use the pen as well but whatever I do when im due on my bloods stay high im on accu chek insight but moving over to the Medtronic 780G this year but the sensors that you can have with this will have to buy myself as not nhs funding yet.

 

[Leadinglights]

I was offered the libre tried it but wasn‘t for me as was having to do my test twice my meter talks to the pump and it’s only once I have to test.

on my letter its says“ I have booked her for a total laparoscopic hysterectomy“ it gets confusing with medical terms

That sounds as if it is womb and ovaries. I had that 40 years ago (not laparoscopic) at 32 due to precancerous ovarian cyst. I was told I would get menopausal symptoms but never did, escaped a bullet there.

 

[Pumper_Sue]

My pump has been set up with various basil rates profiles and I use the pen as well but whatever I do when im due on my bloods stay high im on accu chek insight but moving over to the Medtronic 780G this year but the sensors that you can have with this will have to buy myself as not nhs funding yet.

So have you set the pump up or has your diabetes nurse done it?
Obviously it is set up wrongly and you need to do some basal testing and sort it out.
It sounds as if you need to go right back to basics looking at your basal and correction factor and also your carb ratio.

Unless you have a faulty pump there is no reason what so ever for your numbers not to come down if you use your pump correctly and have set it up with correct basals and bolus's.

 

[Petmad19]

That sounds as if it is womb and ovaries. I had that 40 years ago (not laparoscopic) at 32 due to precancerous ovarian cyst. I was told I would get menopausal symptoms but never did, escaped a bullet there.

I only have one ovary have been sterilised and have had womb lining burning cannot remember the name I cannot have it again as I have scaring I have a heart shape womb

 

[Petmad19]

So have you set the pump up or has your diabetes nurse done it?
Obviously it is set up wrongly and you need to do some basal testing and sort it out.
It sounds as if you need to go right back to basics looking at your basal and correction factor and also your carb ratio.

Unless you have a faulty pump there is no reason what so ever for your numbers not to come down if you use your pump correctly and have set it up with correct basals and bolus's.

The pump has been set up by the nurses and has been checked I had a zoom meeting during lockdown with a roche rep that works with my hospital the pump is not faulty it’s my hormones that is effecting my bloods whatever I give myself it won’t come down

 

[SB2015]

My pump has been set up with various basil rates profiles and I use the pen as well but whatever I do when im due on my bloods stay high im on accu chek insight but moving over to the Medtronic 780G this year but the sensors that you can have with this will have to buy myself as not nhs funding yet.

Having got the original settings in for the different profiles, you will need to adapt these to suit your own needs. As a pump user we need to change these at regular intervals. as @Pumper_Sue has said whoever set it up it is not suiting your needs at present, so the profiles need changing.

Even when you switch to the 780 you will need to find what profile works for you, and then adapt these. I still have these set in spite of the fact I am using the closed loop. There are times when we need to switch to our manual profiles, so it is important to get these sorted. It would be good to do that whilst you are waiting for your new pump, as you can transfer them across to your new pump as a good starting point.

What are the different profiles that you are using set for. Do you have different ones for different parts of your cycle.? Have you tested these basal rates? They are certainly not working at present so it is important to work with your team to learn how to make the adjustments that are needed.

 

[Pumper_Sue]

The pump has been set up by the nurses and has been checked I had a zoom meeting during lockdown with a roche rep that works with my hospital the pump is not faulty it’s my hormones that is effecting my bloods whatever I give myself it won’t come down

Your numbers wont come down because YOU have not set your basal correctly. If you do not know how to do a basal test look in the pump forum and it will explain how to do one.
Basal rates never stay the same so it's an ongoing battle to manage diabetes which involves regular basal testing and adjustments as needed.

 

[Inka]

The pump has been set up by the nurses and has been checked I had a zoom meeting during lockdown with a roche rep that works with my hospital the pump is not faulty it’s my hormones that is effecting my bloods whatever I give myself it won’t come down

That’s the initial set-up but it will need changing, sometimes multiple times a year. I’ve just changed mine again due to the heatwave.

Due to hormones, my insulin resistance increased dramatically. My basal ended up 4 times higher than normal. I increased it gradually and cautiously as needed. Perhaps you need a special basal rate to switch over to for those hormone highs? My blood sugar was controlled by my increased basal and stayed in target.

The pump is just an insulin delivery system (without a CGM and loop). If the basal and meal ratios are wrong, blood sugar will go wrong too, just as if your injected doses were wrong.

 

[trophywench]

I still have a Roche Combo pump and it is true that the meter 'talks' to the pump same as the Insight, in that the bolus wizard is on the meter/handset BUT I also use a Libre as I can test my BG every 5 minutes should I wish to - I don't but it does enable me to spot trends quicker than I ever could just using fingerpricks, since you just don't want to keep bodging your fingers all the flippin while until you need to bolus/correct. Libre is particularly good at identifying what adjustments need to be made to basal rates overnight. You are missing out on a lot of free help, by refusing a Libre.

 

[Pumper_Sue]

I still have a Roche Combo pump and it is true that the meter 'talks' to the pump same as the Insight, in that the bolus wizard is on the meter/handset BUT I also use a Libre as I can test my BG every 5 minutes should I wish to - I don't but it does enable me to spot trends quicker than I ever could just using fingerpricks, since you just don't want to keep bodging your fingers all the flippin while until you need to bolus/correct. Libre is particularly good at identifying what adjustments need to be made to basal rates overnight. You are missing out on a lot of free help, by refusing a Libre.

The problem here is OP hasn't done any basal testing or pump adjustment since she had her pump during the pandemic so a few years at least hence her problems and unfortunately she does not appear to understand how to use the pump including doing basic basal testing.
This is a personal view only but suspect she would be better off on injections as not able to adjust/programme pump on her own
I'm just shocked beyond belief that no one has checked to make sure she knows what she is doing as a lot more help is obviously needed by OP.

 

[Inka]

Do you have a diabetes team you can phone @Petmad19 ? They should be able to make some suggestions for you to try eg different basal rates.

The other thing to mention is that sometimes the problem is with the pump cannulas - or rather, your body’s reaction to them. Sometimes body areas ‘get worn out’ and then don’t absorb the insulin properly. Could that be why you’re saying the insulin doesn’t work to bring your blood sugar down?

I once fought blood sugars in the teens that just would not come down. It was extremely stressful. I eventually worked out the answer - my stomach no longer worked. I moved to a different body site and it was like someone had flipped a switch - magic! Normal blood sugars again!

I know you have hormones affecting you, but a change of pump site might be sensible too.

 

[Pumper_Sue]

The other thing to mention is that sometimes the problem is with the pump cannulas - or rather, your body’s reaction to them. Sometimes body areas ‘get worn out’ and then don’t absorb the insulin properly. Could that be why you’re saying the insulin doesn’t work to bring your blood sugar down?

I had thought of this as well but OP says she is injecting as well so discounted it.

Do you have a diabetes team you can phone @Petmad19 ? They should be able to make some suggestions for you to try eg different basal rates.

OP says they set the pump up!

 

[Inka]

I meant the ‘phone’ bit @Pumper_Sue I have a fab DSN phone number but I know not everyone finds it so easy to contact their team. The OP says she’s struggled to get hold of hers sometimes.

I wouldn’t discount the cannula thing because I was injecting too and I still got the highs. I find with the pump, if something messes up the basal input into the body, it’s harder to get blood sugar down and a real fight sometimes. Add hormones to that and it would be very hard.

 

[Pumper_Sue]

I wouldn’t discount the cannula thing because I was injecting too and I still got the highs. I find with the pump, if something messes up the basal input into the body, it’s harder to get blood sugar down and a real fight sometimes. Add hormones to that and it would be very hard.

It's very hard to understand why back in January she had an A1c of 9+ and it appears to have not improved according to her numbers so I fail to understand why after almost 8mths nothing has been done by op or her team.