Why the NHS treatment (or lack of) for my wife's newly diagnosed diabetes potentially caused avoidable lifelong pain and disability.

[DiabetesHusband]

This post is not about blaming any individual. I would like to know if anyone else is going through or has gone through something similar and hopefully improve treatment for others in the future.

My wife and I are in our early 30s and are both a healthy weight with a BMI close in the 22-23 mark. We exercise several times a week and have done for some time.

Seven weeks ago, my wife was diagnosed with diabetes. One said she thought it might be LADA (type 1.5), but could also be type 2 and booked her in for a next day appointment with the diabetes clinic to pick up her insulin and medication.
I annoyingly did not go with her and I am frustrated with myself for this, but my mum offered to go as I was working. I assumed that it could just be her picking up her meds and having a 1-1 session with the nurse. However, my mother was allowed to go in towards the end. With covid restrictions at the time, this felt unlikely.
Her feet were given a test and she was told she also had neuropathy, a side effect of diabetes. .

We got into the routine of taking insulin and increasing it periodically. She bonded well with the nurses that called her. They started her on about 6 units of insulin and told her every so often to increase it. Currently, she is on 24 units. She was also told to prick her finger 4 times a day; first thing in the morning and once after each meal.

During the treatment, even though my wife's number were still high, frequently above 10 mmol/l, she was waking up in the night sweating. She called the diabetes clinic to let them know about this and they said that this could be a symptom of hypoglycemia, so to take a finger-prick test when she woke up. Of course, this made us nervous to keep increasing the insulin levels. When she took a test, her blood glucose levels were ok - about 6 or 7.

Four weeks in, the nurse listened to some of her readings and said that she is pretty confident that it is type 2 Diabetes, but we would need to wait for a final diagnosis, which may not come until January.

Through chance, a close family member is a GP and 6 weeks in, mentioned that there is another device that could help that is easily accessible, but at this stage at least, would need to be privately funded. This is a Freestyle Libre sensor that monitors your blood sugars every 5 minutes. I had looked into this kind of thing before, but hadn't found anything that could be used now. My wife wanted to follow the nurses' advice, things were stressful enough listening to the advice from the various medical professionals. However, she agreed to give it a go.

The sensor cost £50 for 10 days use and worked with an app on her mobile phone. We bought the sensor from Amazon (GPs unofficial advice), but later realised that if we had bought it directly from FreeStyle Libre we could have had a 14 day free trial. Immediately, we were able to see her levels going as high as 16, even with 24 units of insulin. We could see so much more data and monitor her blood glucose levels at night. This has given us the confidence to keep increasing her insulin levels. I have also read that sweating can also be a symptom of Neuropathy and this seems a more likely cause as the sweating doesn't seem linked to low numbers.

We are now writing notes of carbs and exercise on the FreeStyle Libre app and building up a better picture of her glucose control. It will take time, but hopefully, this will help with a diagnosis.

My wife is still waiting to hear if she is type 2 or type 1.5 diabetes. She has recently been told that she may be told in mid April when she has an appointment with a GP, but not before then.

In the last couple of days, her Neuropathy, a complication from having high blood sugar levels for long periods of time, has gotten worse and her legs are now in constant pain. Simple activities such as going up and down the stairs are becoming a struggle. She has seen a GP and started medication for this, but so far the pain persists and now also feels nauseous. Hopefully this will improve, but nerve damage from Neuropathy is often irreversible.

I think if she had been told by a health care professional about possibilities to privately funding a continuous monitor. At least, until she had her blood sugar levels under control, then the worsening of of her Neuropathy would have been prevented / limited.
This would come at a cost of a few hundred pounds (with the first 14 days free). We would have happily spent thousands of pounds if it had been given to us as a possibility.

I understand that the NHS is understaffed and underbudget and has been for many years. I disagree with the policy to give finger prick tests to newly diagnosed people, especially when it's potentially type 1/type 1.5 diabetes. It makes me angry that we were not even offered a continuous monitor as a self funded possibility. Something that would have cost the NHS nothing to do, would have been free for us for 14 days and would potentially save millions in medical bills for the NHS from complications down the line. It's just so wasteful in every respect.

 

[Sally71]

The problem with continuous sensors is that they are less accurate than finger pricks, especially at very high or very low levels. They are useful for showing trends and direction of travel and basically what happens overnight etc, but less so for dosing insulin. My daughter was diagnosed type 1 aged 6 and we only had finger pricks for the first four years, were told to do them every mealtime and bed time and then anywhere in between if things didn’t feel right. When we eventually got Libre we would use them to check the sensor accuracy from time to time (sometimes they can go wrong, we always found them reasonably accurate but some people don’t). We now have Dexcom sensors which we are finding much more accurate than Libre, but still check it occasionally just to make sure!
So whilst they are a useful tool I don’t think I’d recommend using them entirely as a replacement to finger pricks. They are not reading blood so lag behind blood finger pricks by 10-15 minutes.

 

[DiabetesHusband]

The problem with continuous sensors is that they are less accurate than finger pricks, especially at very high or very low levels. They are useful for showing trends and direction of travel and basically what happens overnight etc, but less so for dosing insulin. My daughter was diagnosed type 1 aged 6 and we only had finger pricks for the first four years, were told to do them every mealtime and bed time and then anywhere in between if things didn’t feel right. When we eventually got Libre we would use them to check the sensor accuracy from time to time (sometimes they can go wrong, we always found them reasonably accurate but some people don’t)
So whilst they are a useful tool I don’t think I’d recommend using them entirely as a replacement to finger pricks. They are not reading blood so lag behind blood finger pricks by 10-15 minutes.

I understand that there is a lag of a few minutes (the website suggests closer to 2 minutes), but either way, when you are in a situation, where you haven't been told which type you have and the health care professionals are struggling to know for months, getting a diagnosis is crucial to knowing how much insulin to use and the lag has little effect on long term insulin decisions. She has not been diagnosed with type 1, so has not been recommended fast acting insulin where time lag may be key. She has slow acting insulin.

We do have the finger pricks ready if needed, due to a rapid response being needed.

I would also like to say more about my frustration with a lack of clarity on diagnosis.

I understand that the test is often about look for 4 autoantibodies which attack beta cells. I don't understand why these tests are taking so long to hear back about. I understand she meets the criteria for type 1.5 more than type 2 (weight, age, whilst genetics factors can not be known due to being adopted at birth). Being told that we think " you may be 1.5, no I think 2, yes probably 2, no 1.5, yes probably 1.5" and "you might know in 3 weeks which type you are, no now it's 3 months" has just added stress to an already stressful situation.

 

[helli]

A few things come to mind
- thousands if not millions of people have had type 1 without cgms and not had problems.
- cgms read interstitial fluid and convert this to blood sugar readings. They are calibrated for "normal levels" and, therefore, are inaccurate for high levels. It is very likely your wife's 16 were not that high. Cgms are great bits of kit but only if you understand them.
- it is normal to slowly lower blood sugar levels as fast changes can cause life long issues
- everyone is different. This is why it is important to learn about diabetes ourselves and not rely on healthcare professionals.
- many people cannot afford £50 every 14 days and would be offended by the NHS suggesting we fund our own care.

 

[Robin]

Firstly, welcome to the forum but I am sorry you and your wife are going through a difficult time.
Ill try and address a couple of points.
Firstly. If blood glucose levels have been very high for a while, and it looks like they were (probably for a while pre-diagnosis as well) the aim is to bring them down slowly. If nerve damage has already occurred, this can result in something called 'transient neuropathy' pains, caused by the nerves starting to mend themselves as blood glucose falls. There can also be eye damage, which can be made worse by blood glucose levels being brought down too rapidly. So hopefully, your wife's pain may improve, and could even disappear altogether.
Libre sensors have only been around for a short time, and most people will have been using the finger prick method since disgnosis. Not even all Type 1s are prescribed them yet. A @Sally71 says, they are not always accurate, and I think health professionals may feel that it’s as well to get to grips with finger pricking, so you know how do do it if you get a sensor fail, and that you don’t become too dependent on reading a sensor rather than listening to how your body feels.
When your wife felt symptoms of hypoglycaemia in the night, but her levels were normal, this could be a result of the body being used to higher levels, so having a strong reaction to falling levels, before they get to true Hypo territory. It’s known as a 'False Hypo' and again, should settle as her blood glucose stabilises.
When diagnosing people, it’s often not clear what type of diabetes they have, and the correct diagnosis may take a long time (mine took a year, until I was finally sorted out on the appropriate insulins, and I spend the first 6 months being incorrectly treated for Type 2)
Finally, I have never found that the NHS is prepared to recommend that their patients self fund, for all sorts of reasons, and as I see @helli has outlined them above, I won’t repeat that here.
I wish you luck on your diabetes journey, and hope for the best outcomes.

 

[EmmaL76]

Hi, I’m in a similar position to your wife. However I was offered the libre device and it has been very useful. Have they ran the antibody tests to determine the type? although my test were inconclusive they prove very useful to others. Send my love to your wife it’s a dreadful time for her. Can I also mention (with no medical evidence to back it up) when my blood sugars were reducing I had pains absolutely everywhere and this did settle for me. Although I’ve never been diagnosed as having neuropathy (never had a foot check)

Sorry I didnt see your post explaining the test. These can take a while, not usually months though.
I’ve been type 2, then type 1, back to 2 and now type unknown this has been going on for 17 months. I get very little help with it

 

[Leadinglights]

You are only a few months down the line and many people do not get a definitive diagnosis for years but doing so may not alter the treatment plan.
The tests for some reason are not done readily because of cost but when they are the results do take longer to come back as not every lab does then and the results need to be interpreted by a specialist and sometimes the results are not conclusive.
If you are not happy with you GP then you could request a referral to a specialist diabetic clinic at the hospital.

 

[PattiEvans]

I can understand why you are so upset. Your wife hasn't been helped as she could have been had a firm diagnosis been given. Are the nurses you speak of the ones that work at the GPs surgery, or are they at the dedicated diabetes clinic at the hospital? Yes, with the amount of doubt that hovers over her diagnosis she should have had both GAD antibody and CPeptide tests. Libre sensors notwithstanding she should have been told to test on waking, before each meal and at 2 hours after a meal, plus another test at bedtime and any time she felt a bit odd.

Perhaps you could tell us precisely which insulin she is on. It would help us to help you.

However, all is not lost. When I was initially diagnosed - at the whim of a nurse I was diagnosed as T2 because of my age. I was put on tablets to start, but 2 weeks in it was plain I needed insulin and sooner rather than later. I only tell you this, because it had taken me months to pluck up the courage to go to the doctor's in the first place and I was in a pretty bad state by the time I did go. I also had bad neuropathy in both feet and hands. Now.... 19+ years down the line I have no neuropathy and no other diabetic complications.

If the insulin is helping her levels to come down to more normal levels then the pain in her feet may well be the nerves regenerating - which is what happened to me. You can try to help with some supplements - many people find these extremely helpful (they certainly helped me) - see attached. They are regularly prescribed in other countries, but not apparently in the UK.

Meantime I suggest you make appointments with the GP and ask for a referral to a consultant at the diabetes clinic.

 

[trophywench]

The tests do actually usually take at least weeks to do and therefore get the results of - this is because of the testing process, which is slow and can't be any quicker, and the fact that not every hospital path lab has the ability to carry out the tests - it's better than it was at first, when there was only ONE lab in the whole UK that did them - and the test itself has only been available for the last few years! So, though you live in Northern England (etc) where's the nearest place that can actually undertake the test - at least it's not SOLELY Exeter Uni now.

 

[DiabetesHusband]

@Pattidevans thanks for your response in particular. This is really reassuring and gives me some hope. I will look into the supplements.

@Leadinglights Thanks for your response. I am not unhappy with any medical professional - I know they are following the guidelines and doing their best. However, technology moves fast and in my opinion the guidelines should change. I understand that big companies, such as the NHS are often slow to change.

Due to staff moving, she has had several different nurses at the GP practice and has spoke to several different nurses at the clinic. She has not had much correspondence with the GPs as it's the nurses that manage insulin levels. Interesting to know that it can take years. I know many are misdiagnosed - my opinion is not that we have had worse treatment than others. My opinion is that if we were offered more information - even just an information sheet on how a continuous monitor may help in addition to finger pricks, this could have been life changing.

@trophywench Thanks, that's interesting to know. I don't know whether the tests have been sent off for already or what the queue might be. I would definitely consider going private to do the test if it was an option. We live in South Wales. My main frustration is definitely not being told about the possibility of an additional continuous blood glucose monitor to supplement finger prints as an option.

 

[DiabetesHusband]

Thanks again for all your responses. I may not respond to any more for a while as am at work. Her insulin levels are currently 24.

Feeling more hopeful now thanks to @Pattidevans in particular.

 

[Drummer]

@DiabetesHusband When diagnosed in 2016 I was not even told that there were blood glucose testers at all - was never mentioned, neither was diet, just 'here's a prescription' and 'you are a very bad diabetic' - so your situation is not surprising even if regrettable.

 

[AnnSebastian]

This post is not about blaming any individual. I would like to know if anyone else is going through or has gone through something similar and hopefully improve treatment for others in the future.

My wife and I are in our early 30s and are both a healthy weight with a BMI close in the 22-23 mark. We exercise several times a week and have done for some time.

Seven weeks ago, my wife was diagnosed with diabetes. One said she thought it might be LADA (type 1.5), but could also be type 2 and booked her in for a next day appointment with the diabetes clinic to pick up her insulin and medication.
I annoyingly did not go with her and I am frustrated with myself for this, but my mum offered to go as I was working. I assumed that it could just be her picking up her meds and having a 1-1 session with the nurse. However, my mother was allowed to go in towards the end. With covid restrictions at the time, this felt unlikely.
Her feet were given a test and she was told she also had neuropathy, a side effect of diabetes. .

We got into the routine of taking insulin and increasing it periodically. She bonded well with the nurses that called her. They started her on about 6 units of insulin and told her every so often to increase it. Currently, she is on 24 units. She was also told to prick her finger 4 times a day; first thing in the morning and once after each meal.

During the treatment, even though my wife's number were still high, frequently above 10 mmol/l, she was waking up in the night sweating. She called the diabetes clinic to let them know about this and they said that this could be a symptom of hypoglycemia, so to take a finger-prick test when she woke up. Of course, this made us nervous to keep increasing the insulin levels. When she took a test, her blood glucose levels were ok - about 6 or 7.

Four weeks in, the nurse listened to some of her readings and said that she is pretty confident that it is type 2 Diabetes, but we would need to wait for a final diagnosis, which may not come until January.

Through chance, a close family member is a GP and 6 weeks in, mentioned that there is another device that could help that is easily accessible, but at this stage at least, would need to be privately funded. This is a Freestyle Libre sensor that monitors your blood sugars every 5 minutes. I had looked into this kind of thing before, but hadn't found anything that could be used now. My wife wanted to follow the nurses' advice, things were stressful enough listening to the advice from the various medical professionals. However, she agreed to give it a go.

The sensor cost £50 for 10 days use and worked with an app on her mobile phone. We bought the sensor from Amazon (GPs unofficial advice), but later realised that if we had bought it directly from FreeStyle Libre we could have had a 14 day free trial. Immediately, we were able to see her levels going as high as 16, even with 24 units of insulin. We could see so much more data and monitor her blood glucose levels at night. This has given us the confidence to keep increasing her insulin levels. I have also read that sweating can also be a symptom of Neuropathy and this seems a more likely cause as the sweating doesn't seem linked to low numbers.

We are now writing notes of carbs and exercise on the FreeStyle Libre app and building up a better picture of her glucose control. It will take time, but hopefully, this will help with a diagnosis.

My wife is still waiting to hear if she is type 2 or type 1.5 diabetes. She has recently been told that she may be told in mid April when she has an appointment with a GP, but not before then.

In the last couple of days, her Neuropathy, a complication from having high blood sugar levels for long periods of time, has gotten worse and her legs are now in constant pain. Simple activities such as going up and down the stairs are becoming a struggle. She has seen a GP and started medication for this, but so far the pain persists and now also feels nauseous. Hopefully this will improve, but nerve damage from Neuropathy is often irreversible.

I think if she had been told by a health care professional about possibilities to privately funding a continuous monitor. At least, until she had her blood sugar levels under control, then the worsening of of her Neuropathy would have been prevented / limited.
This would come at a cost of a few hundred pounds (with the first 14 days free). We would have happily spent thousands of pounds if it had been given to us as a possibility.

I understand that the NHS is understaffed and underbudget and has been for many years. I disagree with the policy to give finger prick tests to newly diagnosed people, especially when it's potentially type 1/type 1.5 diabetes. It makes me angry that we were not even offered a continuous monitor as a self funded possibility. Something that would have cost the NHS nothing to do, would have been free for us for 14 days and would potentially save millions in medical bills for the NHS from complications down the line. It's just so wasteful in every respect.

I know. Tell me about it
Check out the ‘Freestyle Libre free trial’ thread?

Diabetic neuropathy is uncomfortable - the medical consensus is that it’s ‘irreversible’ but from personal experience, there are some things you can do to make it a lot more ‘manageable’ and stop it getting worse.

 

[rebrascora]

Hi and welcome.

So sorry to hear of your wife's diagnosis and the pain she is suffering. Hope it is as described and transient in nature. Others above have pretty well covered everything I wanted to say. Diagnosing diabetes Type is not always as simple as we might hope. Sometimes it is due to lack of knowledge or misinformation. Many GP's are under the misapprehension that Type 1 only exhibits in children and young adults, but many of us here were diagnosed much later in life and initially assumed Type 2. It takes time for the picture to become clear and at least your wife was started on insulin straight away. Many of us went through a period of oral meds and increasingly strict diet reducing our carb intake down to miniscule proportions to try to reduce our BG levels before insulin was introduced and then as others have said, it is important to start on a low dose and gradually increase it, both in terms of preventing the risk of hypos but more importantly, not putting a strain on the delicate blood vessels in the eyes particularly. Diabetes is a marathon as we often say here, not a sprint. Slow and steady wins the race.
Yes, Libre is brilliant but it is important to understand how everything works together.... food, exercise, the different types of insulin and it can be a real temptation to respond to the Libre information without fully understanding how everything works. For example the spikes your wife is experiencing after food could be reduced by cutting back on her carb intake (particularly if she may be Type 2, although I suspect that she will be Type 1) Yes, a quick acting insulin would help to deal with them but if she is Type 2 then starting her on another insulin when it may not be necessary can add extra complication. Dosing and timing of quick acting insulin is not simple and is likely to increase the risks of hypos.

The testing for Type 1 takes time. I think it was 8 weeks for one of my tests to come back. The interesting thing is that your wife has been started on insulin straight away and that is quite unusual for those of us whose diabetes type was not clear initially. Hopefully they have done a C-peptide test along with the antibody tests. This shows how much insulin your wife's pancreas is capable of producing. Type 2 diabetics often (but not always) produce more insulin than normal, whereas Type 1s obviously have reduced output as their beta cells are killed off, but there are exceptions to all rules and diabetes is no different. Having the tests for C-peptide as well as antibodies can help to make things a bit clearer, however diabetes be highly individual.

Has your wife been put on statins for cholesterol? This sometimes happens automatically with a diabetes diagnosis, particularly if cholesterol levels are above 4. Statins can cause pain in the limbs so just a possibility that they might be the cause of her discomfort rather than neuropathy.

Finally, please bear in mind that the clinicians in the diabetes department have had a pretty hectic time during the pandemic. Covid can cause havoc with BG levels and staff have been in demand to monitor severely ill patients in ITUs as well as deal with an influx of newly diagnosed patients. It is believed that Covid has triggered extra cases of diabetes, so their workload has increased enormously and they are very stretched. I spoke to my consultant on the phone yesterday and at the end of the conversation I thanked him for the support they have provided me with since diagnosis 3 years ago. I could tell by his voice that it meant a lot to him for me to say that and he said as much, because they have been overwhelmed with complaints and whilst he said he could understand it, it was hard not to take it personally. Please remember that some clinicians are under an incredible amount of strain and really struggling to maintain the sort of service they would like to provide at the moment.

 

[everydayupsanddowns]

Welcome to the forum @DiabetesHusband

Sorry to hear about your wife’s diagnosis - particularly the uncertainty of classification, and the painful neuropathy it has involved.

Hopefully the neuropathic pain your wife is experiencing will turn out to be of the transient, temporary kind that some forum members have experienced.

Glad you are finding the Libre helpful.

Hope your wife’s GAD and cPeptide results come through swiftly and she can get a definitive classification.

 

[DiabetesHusband]

@Drummer Thank you for sharing. I'm sorry to hear about your experience. Technology for diabetes does seem to improving rapidly. That's still shocking as to how much it's improved since 2016.

@AnnSebastian Thanks for sharing. Sorry to hear about your neuropathy. I'm glad you've found ways to make it better. One thing I've looked at is electric foot massages, that range from £20 to several hundred pounds. The reviews are positive for some of them - saying they have helped a lot. I couldn't see any information in these forums as to whether they are a good idea or not. I know it depends on other underlying conditions as to whether you can use one, such as high blood pressure. DO you know if these are any good?

@rebrascora Thank you for your detailed response and for your sympathy. Yes, that's the impression I've got so far that GPs aren't that aware of LADA diabetes. I think there's a chance that my wife has had diabetes for many years now, as some of the symptoms have been there a while, but we nor GPs have managed to make the link until recently. So it's possible she was in her 20s when it started. By the time she was seen, the nurse at the diabetes clinic said her hba1c numbers were some of the highest she's seen, so I think it's not surprising that she was started on insulin immediately. But yes, at least she is on insulin now.

That's interesting about the importance of going down slowly. Her eyes have gotten worse since being on insulin, despite the nurse predicting otherwise. I hadn't thought that coming down too fast could be an issue. This is where it's been important to respect the nurses decision on numbers. However, it has been difficult with them coming and going and needing to make decisions based on just a few finger prick numbers. Furthermore, we immediately went to a low carb diet as well as the insulin. If she eats a meal with 60g carbs plus, it's likely she will go to about 13 or 14 - although it does depend on what she's eaten before during day and other factors. 2 Slices of toast and eggs in the morning will also cause a 12, with it only coming back to 9 by lunch (we have changed to use low carb bread recently, which improves things a bit). Most You are told on one hand that blood glucose levels in their 20s are dangerous, with above 25 being a cause for dialing 111, whilst on the other hand, that it's dangerous to lower them too quickly. It can feel like choosing between two equally bad options. It's really interesting to know this as we were wondering why her eyes might have gotten worse. This is the kind of thing where an information sheet could have really helped. This makes me feel a lot better about the whole thing, because it sounds like everyone involved was choosing between a rock and a hard place. I'm the one in the relationship that is good with numbers, so want to take on the responsibility of helping my wife as much as possible. This is another frustration point - most of the communications are with different people and spoken in person or on the phone. We have no notes to track how things are going or for her to share with me. Everything needs to be remembered and we need to trust the fine details like unknown family medical history have been communicated clearly between medical professionals.

Yes the risk of quick acting insulin is a concern and we haven't asked to use it yet, despite having it prescribed to be available if needed.

We haven't had the c-peptide results back as far as we are aware.
She hasn't been put on statins. All her stats such as blood pressure and cholesterol were normal.

The initial monitoring is something that I think has is a lot of room for improvement. As a software architect, I hope that I can help with it one day.

Yes, I understand that they are under incredible strain due to COVID. I did mention this at the start and have said repeatedly, I do not blame any individual. My wife has really bonded with the nurses, which has made a real shame that they keep on needing to go elsewhere and she starts again with a new nurse.

@everydayupsanddowns Thanks for your response and I feel your username! Yes, the hope that is not as serious as first thought means a lot. I will ask her to ask about GAD and cPeptide results - would be great to know if they are progressing.

Thanks again everyone for your responses here! As you can probably tell, I was in need of a bit of therapy and I've found this really helpful!

 

[KARNAK]

Hi @DiabetesHusband welcome to the forum.

Please read the following thread https://forum.diabetes.org.uk/boards/threads/peripheral-neuropathy-question.98358/#:~:text=Peripheral neuropathy question. It may give you a better understanding of Neuropathy, there are prescription medications that can definitely help ask her GP for help, she`s only developed it since diagnosis it appears so there is every chance she`ll eventually be free of it with the proper medication to alleviate her pain.
Ted

 

[AnnSebastian]

@Drummer Thank you for sharing. I'm sorry to hear about your experience. Technology for diabetes does seem to improving rapidly. That's still shocking as to how much it's improved since 2016.

@AnnSebastian Thanks for sharing. Sorry to hear about your neuropathy. I'm glad you've found ways to make it better. One thing I've looked at is electric foot massages, that range from £20 to several hundred pounds. The reviews are positive for some of them - saying they have helped a lot. I couldn't see any information in these forums as to whether they are a good idea or not. I know it depends on other underlying conditions as to whether you can use one, such as high blood pressure. DO you know if these are any good?

@rebrascora Thank you for your detailed response and for your sympathy. Yes, that's the impression I've got so far that GPs aren't that aware of LADA diabetes. I think there's a chance that my wife has had diabetes for many years now, as some of the symptoms have been there a while, but we nor GPs have managed to make the link until recently. So it's possible she was in her 20s when it started. By the time she was seen, the nurse at the diabetes clinic said her hba1c numbers were some of the highest she's seen, so I think it's not surprising that she was started on insulin immediately. But yes, at least she is on insulin now.

That's interesting about the importance of going down slowly. Her eyes have gotten worse since being on insulin, despite the nurse predicting otherwise. I hadn't thought that coming down too fast could be an issue. This is where it's been important to respect the nurses decision on numbers. However, it has been difficult with them coming and going and needing to make decisions based on just a few finger prick numbers. Furthermore, we immediately went to a low carb diet as well as the insulin. If she eats a meal with 60g carbs plus, it's likely she will go to about 13 or 14 - although it does depend on what she's eaten before during day and other factors. 2 Slices of toast and eggs in the morning will also cause a 12, with it only coming back to 9 by lunch (we have changed to use low carb bread recently, which improves things a bit). Most You are told on one hand that blood glucose levels in their 20s are dangerous, with above 25 being a cause for dialing 111, whilst on the other hand, that it's dangerous to lower them too quickly. It can feel like choosing between two equally bad options. It's really interesting to know this as we were wondering why her eyes might have gotten worse. This is the kind of thing where an information sheet could have really helped. This makes me feel a lot better about the whole thing, because it sounds like everyone involved was choosing between a rock and a hard place. I'm the one in the relationship that is good with numbers, so want to take on the responsibility of helping my wife as much as possible. This is another frustration point - most of the communications are with different people and spoken in person or on the phone. We have no notes to track how things are going or for her to share with me. Everything needs to be remembered and we need to trust the fine details like unknown family medical history have been communicated clearly between medical professionals.

Yes the risk of quick acting insulin is a concern and we haven't asked to use it yet, despite having it prescribed to be available if needed.

We haven't had the c-peptide results back as far as we are aware.
She hasn't been put on statins. All her stats such as blood pressure and cholesterol were normal.

The initial monitoring is something that I think has is a lot of room for improvement. As a software architect, I hope that I can help with it one day.

Yes, I understand that they are under incredible strain due to COVID. I did mention this at the start and have said repeatedly, I do not blame any individual. My wife has really bonded with the nurses, which has made a real shame that they keep on needing to go elsewhere and she starts again with a new nurse.

@everydayupsanddowns Thanks for your response and I feel your username! Yes, the hope that is not as serious as first thought means a lot. I will ask her to ask about GAD and cPeptide results - would be great to know if they are progressing.

Thanks again everyone for your responses here! As you can probably tell, I was in need of a bit of therapy and I've found this really helpful!

@DiabetesHusband Respect! - for acknowledging every response to your post. I didn’t know much about ‘peripheral neuropathy’ until relatively recently.

I have T2. I’m not a ‘clinician’ but from my own experience, even if you can’t totally reverse it, there are ways to make it far less important.

Controlling Blood Glucose seems to be the main way to stop it getting worse. Which you’re already on top of. And oil massage/ exercise / and possibly ‘amitrypyline’ or similar can sometimes reduce the symptoms. I’ve also found that ‘freeze gel’ seems to help temporarily - but that might just be me.

The other thing - at least for me - is ‘state of mind’ - if I’m happy and distracted I notice it less. (that’s not to say it’s not real - it just helps a lot to have other things to think about beyond a diagnosis.)

 

[trophywench]

Well my eyesight went haywire approx 12 hours after I got my first insulin jab - do you now understand why this happens, that the eyes change shape when there's excess glucose in the blood but as that happened gradually - they don't like it, Cap't Mainwaring! So - they can only go back to normal shape and resume normal service, gradually too. A full 6 weeks before I could return to work, read a book or a knitting pattern or even watch TV properly. God I was bored!

I'd be very wary of stimulating the nerves in my legs and feet at the moment if I was your wife. I think the healing of nerves is something that should be taken slowly too cos if she's in pain now, making em work harder will exacerbate the pain, I'd imagine.

Diabetes is a marathon, not a sprint!

 

[AnnSebastian]

@DiabetesHusband Respect! - for acknowledging every response to your post. I didn’t know much about ‘peripheral neuropathy’ until relatively recently.

I have T2. I’m not a ‘clinician’ but from my own experience, even if you can’t totally reverse it, there are ways to make it far less important.

Controlling Blood Glucose seems to be the main way to stop it getting worse. Which you’re already on top of. And oil massage/ exercise / and possibly ‘amitrypyline’ or similar can sometimes reduce the symptoms. I’ve also found that ‘freeze gel’ seems to help temporarily - but that might just be me.

The other thing - at least for me - is ‘state of mind’ - if I’m happy and distracted I notice it less. (that’s not to say it’s not real - it just helps a lot to have other things to think about beyond a diagnosis.)

PS I’ve only just read all the way through your posts.

Check out the FreeStyle Libre free trial thread on this site? It might help.