74 hba1c - wont let me see a consultant

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Yeoc

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Type 2
Diabetic numbers skyrocketed in June, but the 'diabetes team' didn't bother sending a letter, said they phoned and didn't get an answer. Only just dragged the result out of them now. Been on insulin for about 2 years, and in all that time I haven't seen a single diabetic consultant. This is apparently normal I was told. I asked to see a diabetic consultant and was told - no! lol.

I asked the diabetic nurse how many units a day I was on, she said 20 units. Nope, I am on 60 units a day and have been for over a year. She said Oops a mistake :(

I say to them, the treatment isn't working and she agrees, but I can't see a consultant!? lol. She says the numbers are high.

So the way to respond to really bad numbers and treatment that isn't working, is to try phoning a patient once and if you can't get through, you just leave it and don't bother writing a letter to inform them!?

I didn't ask the last bit. I just said you're not treating me anymore, I'm going to ask my gp to see a consultant - bye.

Put on Levimir without ever seeing a consultant, left on it, starting out at 7 units a day, got to 60 units a day and post 74 hba1c and they still were utterly refusing to allow me to see a diabetic consultant. Just seems crazy. I have to try and start from scratch now and get a referral :(
 
@Yeoc Are you definitely Type 2? What are you eating? Perhaps you need a bolus/meal insulin in addition to the Levemir? That would be a simple thing to prescribe.
 
I think that it’s unacceptable for your diabetes team to not have an appointment with you although because of covid appointments are sometimes hard to get. As @Inka said are you sure your type 2?
 
I too would ask what adjustments you have made to your diet to help manage your diabetes, especially when your levels are continuing to be high. The right diet can be an extremely powerful tool in managing Type 2 diabetes. There are many Type 2 people who have changed to a low carb diet and come off insulin altogether.
How frequently do you test?
Are you just on Levemir or do you have another quick acting insulin?
Even if you are referred to a clinic. it will almost certainly take months to get an appointment. In the meantime, assuming you are Type 2 and haven't yet made any significant dietary changes, then that is something that you could work on.... not the best time of year for that I know but a good New Year's resolution.
 
Hi. I am managed by my lovely DNs who started me on Levemir and Novorapid. I am now in contact with a consultant as I asked for C-Peptide test to confirm my type. As others have said it sounds like you may need to have a Bolus insulin? What is your BMI? If it's too high you may have some insulin resistance requiring a high insulin dose. If it is high do keep the carbs down. BTW do ask your surgery for access to their online system where you can see all your meds and test results. You have a right to that access and the NHS is encouraging it.
 
Hi and thx for all the replies, I didn't think anyone had replied as I didn't get any notice via email, so sorry for only seeing the posts now.

I was diagnosed with diabetes about 10 years ago. They made an error in the original diagnosis in so much as they only did a regular glucose test. They presume I am type 2. My grandfather was late onset type 1, my mum is pre diabetic, and her only two siblings were type 2 diabetic, I have one sister and one brother, one is type 2 and the other is pre diabetic - so pretty much nobody on one side of my family has got away without diabetic issues or diabetes, so there seems to be a genetic component to it.

I have had a very strict diet for around 10 years, low carb.

I don't eat pizza, I don't eat potatoes, I don't eat noodles or rice. I eat a very limited amount of very low carb/high fibre bread - 3/7 carbs a slice. I eat chicken, beef, fish, aubergine, cheese, roast vegetables etc. No chocolate, no crisps, no fast food.

I am on the same diet that originally had me at 48 hba1c.

A consultant seems to think chemotherapy may have made things worse - two primary cancers, the first at 17 where I had 11 hours of surgery for liver cancer (no alcohol) and was originally diagnosed as terminal. Second primary cancer at 25. Had chemotherapy which caused all kinds of later effects. Currently on growth hormone for Adult Growth Hormone Deficiency. Got osteoporosis, severe nerve damage from chemotherapy and all kinds of other issues.

Used to do very high amounts of exercise, two tennis teams a week, badminton, run 20 miles a week etc - but now unable to do much exercise at all due to health issues, hence the concentration and strict nature of the diet I have always stuck to.

I was originally put on Metformin, but didn't tolerate it, tried slow release and different versions of slow release. Was then put on Jardiance and didn't tolerate that either. I had a scan that showed that I had developed severe gastritis on these meds - erosion of the stomach lining and bleeding.

I tried with these tablets for about a year and a half, but was sick almost every day. My body just wouldn't accept them. I know they alter the way your liver and kidneys function, I had two thirds of my liver removed and have limited kidney function, so maybe that is why they didn't work for me.

In the end I was put onto background insulin alone - Levimir. I started on 7 units and was told to increase this 2 units a week, until my blood levels fell within 4-10 on a blood glucose monitor. I am now on 60 units a day and the medication is doing nothing.

So that's where I am.

I have told the diabetic team they are not treating me anymore - given they left me in the dark - not writing to me or informing me or my gp that my hba1c had jumped from 58 to 74 and leaving it for over 5 months. I had to drag the result out of them. It didn't help that they refused my request to see a diabetic consultant. My gp thinks my treatment has been appalling and they have referred me to a specialist.

P.S

A friend had a spare libra 2 sensor and I have tried that just to see...

I have had one meal all day, no snacks.

Two low carb bread sandwiches 7 grams of carbs per slice -28 grams of carbs - two burgers grilled with lettuce.

I have a reading of 15.2nmol/l and climbing.
 
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Hi.

Thanks so much for that additional info. It makes a huge difference to understanding your situation and if such a drastically low carb diet is not keeping your numbers low even on Levemir then it is fair to assume that you are not producing much or any insulin of your own and I would suspect that you may well be Type 1 or LADA rather than Type 2.
Have you asked your doctor about doing C-peptide (to assess insulin production and GAD antibody tests (associated with autoimmune diabetes) to clarify your diagnosis.
Whilst it is really frustrating that your diabetes may be wrongly diagnosed, getting the correct treatment should be top priority. Levemir is a basal insulin which means that it is designed to deal with the glucose produced by the liver. It is not there to deal with any food and if you are eating low carb, your body will be releasing glucose from protein and you should have a quick acting bolus insulin to inject to cover the glucose released from food, so you are trying to manage your diabetes with only half the tools that you need. Much as I rate Levemir highly as a basal insulin, an old fashioned mixed insulin would be preferable to just having Levemir in your situation I think.

When you mention "diabetes team" in your opening post, who do you mean by that? Most of us would refer to the consultant and DSNs at the specialist diabetes clinic as "the team", but you seem to be saying that they will not allow you to see the consultant but that your GP is happy to refer you one.... This is all a little bit confusing for us to understand so I wonder if your "team" is just the practice nurse and possibly a GP with an interest in diabetes at your surgery.

I do not want to make excuses but the diabetes clinics/staff (DSNs and consultants) have been under a significant strain due to Covid causing significant problems for diabetics and also triggering diabetes it seems so a big increase in workload for them and you seem to need to be more pushy these days to get the support and treatment that you need. I really hope that you will get a referral to a good consultant and that they will help you find a balance with your insulin treatment.

Can you give us any details of how you use the Levemir? Do you inject morning and evening ie. a split dose and where do you inject it? It may be that adjusting your doses so that a morning dose is larger and the evening dose smaller night help. I split what I consider to be large doses into 2 separate injections.... My morning Levemir is currently 26 units, so I inject 13units into each buttock for better distribution and release and this also reduces the chances of getting fatty lumps in sites which then reduce absorption. If it gives you an idea of protein release, I would probably need 2 or 3 units of quick acting insulin to cover 2 quarter pounders and then 1 or 2 for the bread, depending upon how low carb. The protein would start releasing after about 2 hours so I would inject insulin just before the meal for the bread and about 2 hours later for the meat. I unit of insulin will drop my levels about 3mmols, so without those say 3 units of insulin as a conservative dose for that burger meal, my levels would rise by about 9mmols, so being at 15 maybe 3 -4 hours afterwards would not be terribly unreasonable if I didn't have a bolus insulin to deal with the food.

Not sure if that makes any sense to you, but your Levemir is being asked to do work that it isn't really designed to do as well as it's own job, and it is clearly struggling. You need a better insulin regime.
 
Thx Rebrascora,

Hmm, the diabetes team I refer to is a nurse led clinic who have access to a consultant, who refer to said consultant if appropriate. They claimed I did not need to see them and this was not appropriate. My opinion here is, they are beyond incompetent and I now think dangerous - so I've dumped them and wait to see a consultant endocrinologist at a diabetes center.

As for treatment I am on one singular injection of 60 units of Levimir, which is what the clinic advised. I take it at 8pm in my legs (either leg). I already take another daily injection - growth hormone into my stomach of an evening.

I agree re what you are saying about getting a better diagnosis, or put another way, what you have said makes sense to me.

I mentioned using a libre 2?

I activated that yesterday and this is what I got in the last 18 hours or so:

Very high numbers. I had two grilled burgers in very low carb bread (7 carbs a slice -28 carbs total) with lettuce and ate nothing else and was over 15nmol/l. I had no food, no snacks and no drinks for most of the day. Took my my bloods and was around 11nmol/l and fell asleep, woke up two and a half hours later and my bloods were over 14nmol/l. I had one more meal last night (2 meals on the day), lean chicken and a couple of sausages, no food so far today and I am over 10nmol/l today. That's with having taken 60 units of levimir yesterday at 8pm.

I wouldn't get under 10nmol/l in a day at any point whatsoever. I could almost starve myself (obviously not going to do that) and I would struggle to get under 10nmol/l.

Not sure if I have missed anything you asked? I just hope to get somewhere with a consultant and correct treatment.

In the meantime I could maybe try separating my injections, take two rather than one?

Before I was diagnosed with diabetes 10 years ago I had no symptoms. Then of a sudden I was drinking 20 pints of water in an hour and unable to quench my thirst. My gp assumed I would be found to be type 1 due to the sudden onset, so he said. I used to exercise a great deal as I was more physically able and a bit if a fitness fanatic. The diet which I haven't really changed rowed my numbers back, got me a good hba1c of around 46 for a number of years. Anyway this is every I can think to say, rightly or wrongly.

The libre thing, is just something I am using to get 14 days worth of usable data from, after this one runs out, I won't have more of them. But I thought this would be good daya for the diabetic specialist I come to see.
 
Just out of curiosity..... is the growth hormone a steroid? That could be impacting your BG levels and making things worse!

Is the "clinic" at your GP practice? You mention a nurse and "team" so I assume there is someone else with the nurse running the clinic? Is the nurse, one of the practice nurses who has been given some training to manage the diabetics at the practice or is she a specialist diabetes nurse (DSN) or is it a combination of both.... a DSN comes into the clinic once a month to assist the practice nurse perhaps?
I was so lucky that the diabetes nurse at my practice was well aware of her limitations and had regular consultations/case conferences with the consultant in the early weeks of my (mis)diagnosis and always felt that there was a question mark against my type and kept in close contact with me, but I am sure there are other nurses out there who get a bit of a power complex and have an over inflated sense of their own ability. It may also be that the consultants in your area are less open and accessible to these nurses or have been difficult or dismissive in the past when cases have been referred to them, which could then change the attitude of the nurse I suppose. It is always difficult to know how the mechanisms and personalities involved affect the dynamics of the system and unfortunately that can have an impact on how patients are managed. We have 2 consultants in our area and the lead is incredibly committed to getting the very best for his patients and the nurses seem to think the world of him because he goes the extra mile. I think having someone like that heading a department probably makes a big difference to how the whole system works.

Anyway, I really hope that your GP is able to get you a referral sooner rather than later and you get some better support.

Is there any reason why you stopped increasing the Levemir when you got to 60 units. Were you starting to have hypos?
If you were told to keep increasing it by 2 units until your levels were under control, which clearly they aren't, just wondering if there is any reason not to increase it a bit more? We have a saying here on the forum that "you need as much insulin as you need" and whilst sometimes I can be quite resistant about increasing my Levemir, when the dose is right and it holds my levels steady and in range, it makes life so much less frustrating and everything just makes more sense. I do have occasions when it needs reducing again so it is not like it is a one way progression, but getting the dose right really is key to everything. Unfortunately with you just having the Levemir that will be more difficult, but if you have been given authorization to increase it when needed then I think that's what I would do in your situation until you are at least getting some "in range readings" It is important to test lots when you are increasing doses and ensure that you always have hypo treatments and testing kit close to hand, especially during the night.... on the bedside table or under the pillow.
 
rebrascora said:
Just out of curiosity..... is the growth hormone a steroid? That could be impacting your BG levels and making things worse!

Is the "clinic" at your GP practice? You mention a nurse and "team" so I assume there is someone else with the nurse running the clinic? Is the nurse, one of the practice nurses who has been given some training to manage the diabetics at the practice or is she a specialist diabetes nurse (DSN) or is it a combination of both.... a DSN comes into the clinic once a month to assist the practice nurse perhaps?
I was so lucky that the diabetes nurse at my practice was well aware of her limitations and had regular consultations/case conferences with the consultant in the early weeks of my (mis)diagnosis and always felt that there was a question mark against my type and kept in close contact with me, but I am sure there are other nurses out there who get a bit of a power complex and have an over inflated sense of their own ability. It may also be that the consultants in your area are less open and accessible to these nurses or have been difficult or dismissive in the past when cases have been referred to them, which could then change the attitude of the nurse I suppose. It is always difficult to know how the mechanisms and personalities involved affect the dynamics of the system and unfortunately that can have an impact on how patients are managed. We have 2 consultants in our area and the lead is incredibly committed to getting the very best for his patients and the nurses seem to think the world of him because he goes the extra mile. I think having someone like that heading a department probably makes a big difference to how the whole system works.

Anyway, I really hope that your GP is able to get you a referral sooner rather than later and you get some better support.

Is there any reason why you stopped increasing the Levemir when you got to 60 units. Were you starting to have hypos?
If you were told to keep increasing it by 2 units until your levels were under control, which clearly they aren't, just wondering if there is any reason not to increase it a bit more? We have a saying here on the forum that "you need as much insulin as you need" and whilst sometimes I can be quite resistant about increasing my Levemir, when the dose is right and it holds my levels steady and in range, it makes life so much less frustrating and everything just makes more sense. I do have occasions when it needs reducing again so it is not like it is a one way progression, but getting the dose right really is key to everything. Unfortunately with you just having the Levemir that will be more difficult, but if you have been given authorization to increase it when needed then I think that's what I would do in your situation until you are at least getting some "in range readings" It is important to test lots when you are increasing doses and ensure that you always have hypo treatments and testing kit close to hand, especially during the night.... on the bedside table or under the pillow.
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Growth Hormone is a steroid, it is replacement of what everyone else has. I had chemotherapy, which knocked it out and a lack of it has caused severe osteoporosis of the lower spine and meant, along with nerve damage that I have spent a good bit of time in a wheelchair. Without it's replacement my spine would have crumbled, so it can't be lowered. The Diabetes team I mentioned are a clinic in an outpatient setting. They are supposed to be specialist diabetic trained nurses, a team of them, with a consultant on call. I stopped increasing the Levimir because it was having zero effect on my numbers as seen with glucose monitoring. I don't think there was much difference between 20 and 60 units if I am being honest. No real effect at all. I have never produced a result below 8 nmol - ever at any point. There has never once been a danger of going low.

I have just done exercise, equivalent to a mile and a half. No food, no drink, just exercise and my numbers went from 10nmol to 14nmol and I last ate at 11:30 last night - nothing today and that food last night was only meat - 14 hours ago.
 
Exercising without food will often increase blood glucose as the liver releases glucose to provide the energy for exercise. Not uncommon for people to report increase in blood glucose when they exercise before having any food.
 
Leadinglights said:
Exercising without food will often increase blood glucose as the liver releases glucose to provide the energy for exercise. Not uncommon for people to report increase in blood glucose when they exercise before having any food.
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The problem is nothing is lowering glucose, nothing. very low carb, exercise, medication - nothing. 60 units of Levimir on an empty stomach isn't doing much. No food for 8 hours, no snacks or drink and my numbers often go up. Lowest number I have ever seen, is a very rare 8nmol.

I had two thirds of my liver removed due to primary liver cancer at 17 (no alcohol). I don't know if that is a factor?
 
It could be that your beta cells have been dying off and hence your own insulin production diminishing as you were increasing the Levemir, which is why you didn't see a benefit. Your liver is likely pumping out glucose partly because you are not eating, so eating small meals more frequently might be beneficial. When food hits your stomach the liver gets a message to switch off it's glucose release (the liver is like your back up battery), so going long periods without food can be less beneficial, especially if your insulin production is dwindling.
If it was me I would stay low carb but eat more frequently and continue with the Levemir increase every 3-4 days until you start to see a change but test lots and split the dose. The steroids that you are injecting will almost certainly be having an impact on your levels and resulting in you needing more insulin than you otherwise would even though they are replacing what you would normally produce.

Please don't become complacent with the insulin and think that your levels will never drop too low.... Always, always be prepared for a hypo. There are cases where insulin has become trapped in tissue and then suddenly released sometimes days or weeks later causing a massive crash of BG and very dangerous hypo.
 
I appreciate the replies from everyone and especially all the effort by yourself Rebrascora. The bone density in my lower spine in my mid 30s was minus 2.8. Without Growth Hormone replacement, my spine would have snapped years ago and I'd of been permanently in a wheelchair, so the GH replacement can't be helped. The liver probably isn't in a great state, it grows back to a degree, but how much functional improvement is debatable. I'll just hold out until I get the consultant appointment, hope it is soon. As of right now it is impossible to be complacent re low bloods, literally impossible as I am wearing the libre 2 and it has an alarm on it when blood glucose goes too high or too low. It is going off all the time, but always for being too high. I am wearing this for the next 13 days to glean as much info off of this. Not sure whether to change routine on the Levimir before seeing the consultant, or not? I suppose I could increase the dose, though to do that, I would have to split it into two injections a day, as I have maxed out the pen with taking 60 units a day.
 
Just to give you an idea that your 60 units is not massive, I am Type 2 on insulin with no other health problems that impact BG and not on steroids, and I take 42 units of Levemir morning and 26 at night, as well as around40 - 50 units of Novorapid a day with meals. Some T2s take more than this, T1s generally less.
 
silentsquirrel said:
Just to give you an idea that your 60 units is not massive, I am Type 2 on insulin with no other health problems that impact BG and not on steroids, and I take 42 units of Levemir morning and 26 at night, as well as around40 - 50 units of Novorapid a day with meals. Some T2s take more than this, T1s generally less.
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Yes, this makes sense to me. I don't think my dose is massive so much as I think my treatment has been very much wrong. What appears key, in your case and many that I see and hear of relates to the combination of regular mealtime insulin, not being left on basal insulin alone, especially not so with a hba1c of 74nmol/l. Perhaps it sounded as though I was saying my dose was high in my case, I was meaning some quite different. In any regard, thx for commenting and giving me a useful perspective, appreciated.
 
@Yeoc have you checked your LIbre readings with finger pricks?
Libre (and all CGMs) are less accurate when levels are in double figures.
 
helli said:
@Yeoc have you checked your LIbre readings with finger pricks?
Libre (and all CGMs) are less accurate when levels are in double figures.
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I had not heard of this, and so will now do comparisons and see what I get- thx!
 
What you seemed to be saying was that insulin wasn't working and you seemed a bit concerned by that as those of us who use insulin can relate to because we all experience occasions when we inject it and our levels go up instead of down. If that happens persistently then you do start to feel panicky because insulin is the last line of defence so to speak. If it stops working we are knackered! Almost invariably it is because our basal insulin needs have increased for whatever reason be it illness or time of the month or season of the year or ambient temp or because we got out of the wrong side of the bed and wore some new orange socks! Basal insulin needs change from time to time and you need to adjust it for what you need. We all agree that Levemir on it's own is not enough but you could improve your levels a bit more I think by increasing it further and it could be several months before you get a consultant appointment. You could do some important experimenting and learning about your body during that time and the having the Libre right now might be an ideal opportunity to do some experimenting whilst you have the alarms although you should know that Libre is not infallible and should not be totally relied upon.
 
rebrascora said:
What you seemed to be saying was that insulin wasn't working and you seemed a bit concerned by that as those of us who use insulin can relate to because we all experience occasions when we inject it and our levels go up instead of down. If that happens persistently then you do start to feel panicky because insulin is the last line of defence so to speak. If it stops working we are knackered! Almost invariably it is because our basal insulin needs have increased for whatever reason be it illness or time of the month or season of the year or ambient temp or because we got out of the wrong side of the bed and wore some new orange socks! Basal insulin needs change from time to time and you need to adjust it for what you need. We all agree that Levemir on it's own is not enough but you could improve your levels a bit more I think by increasing it further and it could be several months before you get a consultant appointment. You could do some important experimenting and learning about your body during that time and the having the Libre right now might be an ideal opportunity to do some experimenting whilst you have the alarms although you should know that Libre is not infallible and should not be totally relied upon.
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Yes, that's exactly it and I was very shocked that I wasn't contacted by the diabetic team with a jump from 58 to 74 with my hba1c, that this was left for over 5 months. It upset me I must say. I see what you are saying about potential over reliance on the technology with the Libre, yes I might have assumed too much, noted. I was somewhat concerned with some kind of notion of getting consistent data from the Libre with my current medication, but thinking more on it, I think the inadequacy of my current regime is already well established, so perhaps I have little to lose in simply going ahead and increasing the levemir as per two injections and experimenting as you say. It can't do any worse/harm given the clearly elevated numbers. Yes, this makes sense and I will go back to upping the dose by 2 units each week and take blood and compare this to the libre - take three bloods/around meals 4 days a week.

Thx for info and thoughts again.
 
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