Can anyone help me make sense of this?!

[CrazyCatLady2693]

I would really appreciate some insight if anyone can help me. I saw diabetic nurse today and I am so frustrated with how it went..

For background information: diagnosed in 2017, no one's clarified type (have been told genetic, autoimmune, someone said 1.5 at one point.. I never pursued it because lifestyle changes and medication helped) I got my HbA1c down to high 30s by the following year, shifted some weight, taking Metformin, no need to self test, I'm now on annual blood tests because I've kept my numbers in the 30s ever since. Last one was 39 in November.

Fast forward to the start of this year, I started getting pain in my foot and was eventually diagnosed with peripheral neuropathy and take a small dose of amitriptyline which helps. I didn't understand why I had this complication as I've been told constantly how well I'm doing, but I let it go. Then my annual eye screening came back abnormal a few weeks ago for the first time, just background retinopathy, but still it's shaken me a bit - I am very hard of hearing/rely on hearing aids and have bad eyesight already so the thought of my vision becoming more impacted is really scary to me. I did what the letter said and got in touch with my GP surgery (econsult) and was told to book a diabetic review which is what I had today..

I don't seem to have a fixed DN anymore and the one I saw was so condescending. She told me there's no chance my retinopathy will progress any more because my HbA1c number is so good, but in my head if that were true it wouldn't have developed in the first place? She said I don't need to test myself and when I tried to say what if my levels are going up and down but I don't know because I only have that one annual blood test which I know is based on the previous 3 months, she just flat out said that isn't happening.

I didn't get any form of reassurance and she wasn't even going to do HbA1c/cholesterol/BP, but I have other bloods booked for next week so I did manage to get her to add HbA1c and cholesterol to those, for peace of mind. I know having my number in normal range is good, I don't want to seem like I'm complaining about that, I'm just really confused because I now have two diabetic complications with my well controlled diabetes, that's on top of all the ambiguity about type at diagnosis.

For context I have a lot of health issues: autoimmune conditions, ME/CFS, hypothyroidism, pernicious anaemia, RLS, vitamin D deficiency, autism, mental health issues and I'm on a lot of meds, including immunosuppressants. I don't know if any of these things are influencing anything diabetes related but I'm feeling so fed up after today's appointment. I don't know if it's my autism trying to make sense of something that doesn't make sense, but if anyone has any words of wisdom for me I'd really appreciate it

 

[JoKalsbeek]

I would really appreciate some insight if anyone can help me. I saw diabetic nurse today and I am so frustrated with how it went..

For background information: diagnosed in 2017, no one's clarified type (have been told genetic, autoimmune, someone said 1.5 at one point.. I never pursued it because lifestyle changes and medication helped) I got my HbA1c down to high 30s by the following year, shifted some weight, taking Metformin, no need to self test, I'm now on annual blood tests because I've kept my numbers in the 30s ever since. Last one was 39 in November.

Fast forward to the start of this year, I started getting pain in my foot and was eventually diagnosed with peripheral neuropathy and take a small dose of amitriptyline which helps. I didn't understand why I had this complication as I've been told constantly how well I'm doing, but I let it go. Then my annual eye screening came back abnormal a few weeks ago for the first time, just background retinopathy, but still it's shaken me a bit - I am very hard of hearing/rely on hearing aids and have bad eyesight already so the thought of my vision becoming more impacted is really scary to me. I did what the letter said and got in touch with my GP surgery (econsult) and was told to book a diabetic review which is what I had today..

I don't seem to have a fixed DN anymore and the one I saw was so condescending. She told me there's no chance my retinopathy will progress any more because my HbA1c number is so good, but in my head if that were true it wouldn't have developed in the first place? She said I don't need to test myself and when I tried to say what if my levels are going up and down but I don't know because I only have that one annual blood test which I know is based on the previous 3 months, she just flat out said that isn't happening.

I didn't get any form of reassurance and she wasn't even going to do HbA1c/cholesterol/BP, but I have other bloods booked for next week so I did manage to get her to add HbA1c and cholesterol to those, for peace of mind. I know having my number in normal range is good, I don't want to seem like I'm complaining about that, I'm just really confused because I now have two diabetic complications with my well controlled diabetes, that's on top of all the ambiguity about type at diagnosis.

For context I have a lot of health issues: autoimmune conditions, ME/CFS, hypothyroidism, pernicious anaemia, RLS, vitamin D deficiency, autism, mental health issues and I'm on a lot of meds, including immunosuppressants. I don't know if any of these things are influencing anything diabetes related but I'm feeling so fed up after today's appointment. I don't know if it's my autism trying to make sense of something that doesn't make sense, but if anyone has any words of wisdom for me I'd really appreciate it

Personally, I'd just start with the finger pricks again, see whether anything changed. I do know pernicious anemia can give a false high HbA1c reading, but yours seem excellent... Hypothyroidism might skew things a little if your medication isn't just right, but don't ask me how exactly. However... Metformin can cause vit b12 deficiency, the p. anemia can have the same effect, and with a double whammy like that, severe B12 deficiency can possibly cause neuropathy. So it would then, potentially, be due to your other condition and the med for diabetes combined, rather than diabetic neuropathy. Getting a blood test done for B12 deficiency 'd be good, as there are jabs for that through your GP, that can help you back in the saddle much, much better than a supplement from Boots would, IF that is a problem, but that's something you'll hopefully soon find out. I'm just putting some guesses and googling together though...

Good luck!
Jo
PS: Can't give medical advice on here, which is why I stress again, this is just some guesses and googling. But if you're getting bloodwork done anyway... B12 would be a nice addition.

 

[CrazyCatLady2693]

Personally, I'd just start with the finger pricks again, see whether anything changed. I do know pernicious anemia can give a false high HbA1c reading, but yours seem excellent... Hypothyroidism might skew things a little if your medication isn't just right, but don't ask me how exactly. However... Metformin can cause vit b12 deficiency, the p. anemia can have the same effect, and with a double whammy like that, severe B12 deficiency can possibly cause neuropathy. So it would then, potentially, be due to your other condition and the med for diabetes combined, rather than diabetic neuropathy. Getting a blood test done for B12 deficiency 'd be good, as there are jabs for that through your GP, that can help you back in the saddle much, much better than a supplement from Boots would, IF that is a problem, but that's something you'll hopefully soon find out. I'm just putting some guesses and googling together though...

Good luck!
Jo
PS: Can't give medical advice on here, which is why I stress again, this is just some guesses and googling. But if you're getting bloodwork done anyway... B12 would be a nice addition.

Thank you for your thoughts lovely.
I've never even done finger pricks, because I was told I don't need to yet at diagnosis.
Sorry I wasn't very clear, I had the pernicious anaemia/hypothyroidism before diabetes joined in so I've been on B12 injections for years (because I can't absorb it in my stomach for whatever reason so pills wouldn't work for me). I did read that B12 can affect neuropathy, but again I don't feel like it makes sense because I've had the B12 jabs for well over a decade so my B12 levels appear normal, so I don't see it contributing to neuropathy.. my body just doesn't make sense

 

[LittleGreyCat]

Have you considered a trial with a Constant Glucose Monitor such as a Libre 2?

I think that in very rare cases you can have very high spikes in blood glucose, then lows, which average out in the HbA1c.

I think that Abbott still do the 2 week free trial (this assumes that you have a compatible mobile phone).

This would tell you if you need to do finger pricks or if the symptoms that you are getting are not related to blood glucose levels.
The Libre 2 isn't as accurate (at least for me) as a finger prick but is great for showing trends such as spikes and dips.

 

[CrazyCatLady2693]

Have you considered a trial with a Constant Glucose Monitor such as a Libre 2?

I think that in very rare cases you can have very high spikes in blood glucose, then lows, which average out in the HbA1c.

I think that Abbott still do the 2 week free trial (this assumes that you have a compatible mobile phone).

This would tell you if you need to do finger pricks or if the symptoms that you are getting are not related to blood glucose levels.
The Libre 2 isn't as accurate (at least for me) as a finger prick but is great for showing trends such as spikes and dips.

You must have read my mind, I literally just signed up for the free trial!
The potential spikes and dips was a question I did manage to ask yesterday, if there was a possibility, and the nurse I saw just said no flat out.
I'm going to see what the free trial shows, obviously if that is the case I'll go back to my GP, even if it's not I think I might go to my GP anyway because I don't want to see this DN again. I can also talk to him about other potential causes I guess..
I just want to understand what my body is doing, I don't even know what type I am after 7 years of being diabetic (though I appreciate that's not the most important thing) it just makes me feel like a fraud and like I don't fit in anywhere

 

[JoKalsbeek]

Thank you for your thoughts lovely.
I've never even done finger pricks, because I was told I don't need to yet at diagnosis.
Sorry I wasn't very clear, I had the pernicious anaemia/hypothyroidism before diabetes joined in so I've been on B12 injections for years (because I can't absorb it in my stomach for whatever reason so pills wouldn't work for me). I did read that B12 can affect neuropathy, but again I don't feel like it makes sense because I've had the B12 jabs for well over a decade so my B12 levels appear normal, so I don't see it contributing to neuropathy.. my body just doesn't make sense

Aw, sorry... From one nonsensical body to another, I feel your pain -almost literally- and while I can't offer more than my commiserations, they're quite heartfelt. I hope you find some answers and proper help.

As an aside, the NHS can't afford to give people strips, there's too many of us, so the general practice is to not advise people to prick... The bulk of the T2's here self-fund when they start a diet or med to see what is working for them and what isn't. I didn't have to test either, was advised against it even, as it would be "too stressful", but when I did I had my blood sugars into the normal range within a month or two, and have remained there these past 7 or 8 years now... Would not have happened otherwise. But I'm stubborn and curious. Any time something changes or doesn't make sense though, testing can provide potential answers. Up to you though.

Anyway, again, I do hope things'll get clearer soon,
Jo

 

[Cumbrianjudith]

I’m like you with lots of other ailments (hypothyroidism, diabetes, fibromyalgia, postural hypotension from Long Covid….) that might themselves affect each other, or the meds.prescribed for them might. At the end of last year I had to push my diabetic nurse hard to not just accept the HbA1c as acceptable as it’s an average so might hide low and high BG levels as I too had a ‘retinopathy’ type letter after diabetic eye test. I did get sent on a diabetic course ( type 2 one as type 3c so might have been better on type 1 one, but only 2 others there so easy to gear to me too), and got a Libre 2 CGM which did show hypos, resulting in insulin change too. Now get HbA1c 40-41 ( which DN thought too low!), but still getting quarterly recalls for diabetic eye photos. My Long Covid has given me high BP and have taken 4-5 hypertensives over the last 4 1/2 years so might be cause of eye problems, but Gp not bothered! Nor do I ever get to see an eye dr. though I do ask the two different ‘technicians’ who do the test if this can happen. I did find during the process of trying to treat the hypothyroidism ( and fibromyalgia) I raised my FT3 by using T3 only but my BG rose with that, so swopped back to a T4/T3 combo. While my GP has just experimented on me convincing himself that my high HR (a diagnosed compensation from the sudden low BP on standing) was in-fact ‘overmedicated levothyroxine’ and reduced by levo.from 100 to 75 mcg resulting in 6 weeks of greater fibromyalgia pain and stiffness, and yet again had a knock on effect to BG meaning I had to increase insulin by 10+%. Is your hypothyroidism treated sufficiently? Glad you are getting a free Libre sensor ..2 weeks not long but you might see some ‘weird’ spikes or lows that you can alter by removing the foodstuff altogether, change portion size or change order you eat it in, or combine with other foods…have fun!

 

[hulk]

Personally, I'd just start with the finger pricks again, see whether anything changed. I do know pernicious anemia can give a false high HbA1c reading, but yours seem excellent... Hypothyroidism might skew things a little if your medication isn't just right, but don't ask me how exactly. However... Metformin can cause vit b12 deficiency, the p. anemia can have the same effect, and with a double whammy like that, severe B12 deficiency can possibly cause neuropathy. So it would then, potentially, be due to your other condition and the med for diabetes combined, rather than diabetic neuropathy. Getting a blood test done for B12 deficiency 'd be good, as there are jabs for that through your GP, that can help you back in the saddle much, much better than a supplement from Boots would, IF that is a problem, but that's something you'll hopefully soon find out. I'm just putting some guesses and googling together though...

Good luck!
Jo
PS: Can't give medical advice on here, which is why I stress again, this is just some guesses and googling. But if you're getting bloodwork done anyway... B12 would be a nice addition.

I'm a type 2 diabetic and I'm on two 500mg of methaformin tablets a day I'm also on a strict diet i exercise 5 days a week but my reading s are between 8.10 every morning and also I'm gaining weight which i can only put down 2 the methaformin. Can anyone shed light on this. Marty

 

[Lynne C J]

You must have read my mind, I literally just signed up for the free trial!
The potential spikes and dips was a question I did manage to ask yesterday, if there was a possibility, and the nurse I saw just said no flat out.
I'm going to see what the free trial shows, obviously if that is the case I'll go back to my GP, even if it's not I think I might go to my GP anyway because I don't want to see this DN again. I can also talk to him about other potential causes I guess..
I just want to understand what my body is doing, I don't even know what type I am after 7 years of being diabetic (though I appreciate that's not the most important thing) it just makes me feel like a fraud and like I don't fit in anywhere

You could buy a cheap glucose meter access test Strips online and use the side of your fingers, never the pad as that's where all the nerve endings are. Try testing before a meal, after a meal and any other odd time just to get an idea if what your blood sugars are doing.
Having a Libre 2 trial is good but they aren't all plain sailing, they can fail, fall off and but give you a reading when you need it sometimes from signal loss.

This will give you evidence / ammunition to take to your GP. Good luck
.

 

[JoKalsbeek]

I'm a type 2 diabetic and I'm on two 500mg of methaformin tablets a day I'm also on a strict diet i exercise 5 days a week but my reading s are between 8.10 every morning and also I'm gaining weight which i can only put down 2 the methaformin. Can anyone shed light on this. Marty

Being on a "strict diet" doesn't really mean anything... Diet of what? There's a plethora of diets out there, one suits a metabolic condition like diabetes better than the other. Like, Slimming World would spike the blood sugars of quite a few T2 diabetics, myself included. It's kind of like using a treatment for a headache, to get a sore thumb sorted: you need to make sure the diet fits the problem. I was put on a low fat, high carb diet, which was very strict indeed, and made me morbidly obese and diabetic in the blink of an eye. With insulin resistance, I never should've upped the carbs. I should've been on more fats and protein instead, lowering carbs. So what does your current diet look like? Because it might be the wrong one for what you're trying to treat with it.

Can you tell us what you're eating and drinking in a typical day? http://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might explain a low carb diet some and how it tends to work for people with T2.

If you're reluctant, just get yourself a meter and experiment with a different diet for a week or two. I was very skeptical myself of LCHF and keto diets, but I tried them out, my meter told me they were working, as my 20+ readings went down into the normal range, and the next HbA1c I had done saw my blood sugars halved in the space of two months. I've been in the non-diabetic range ever since, these past 8 years. You don't have to experiment for long to see whether something works, the results with a few fingers pricks would show results in a matter of days. Do keep in mind that if you're going very low carb very quickly, you can experience headaches, fatigue and aches and pains. Keeping your electrolytes up with supplements, bone broth or coconut water should help you through that adjustment period, because it does end, if you see it through for a bit. Otherwise, just take it slow, and cut carbs slowly as you go along. That'd be my advice anyway... Test around meals: before the meal and 2 hours after the first bite. You want to see a rise of no more than 2.0 mmol/l between those numbers, preferably less. Mind you, you'll miss the highest number, (likely around half an hour to an hour after eating) but it will tell you whether your body could deal with what you've put in there. If higher than 2.0, there were more carbs than you could process and you might want to have some less.

Also, you're posting this in someone else's thread, so you're less likely to get answers from people other than myself on this issue. I'm just one person, and this is what worked for me. Others might have valuable input you might find useful too, so if you want to make a post of your own, that could well give you more to work with. We're a friendly bunch, and we know a thing or two, so do make use of us.

Good luck!
Jo