Can Someone Help?

RAH79

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Type of diabetes
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Hello All!

I've been a type 1 diabetic for 26 years and have recently been experiencing a few health problems. I know some are related to my diabetes but not too sure if it is all diabetic related or just general health (IMO I feel that most health professionals tend to blame diabetes too easily instead of investigating possible other issues!).

I'm on Novorapid and Levemir and in summary, for the previous 3 - 4 years I have been on a low carb / calorie diet and apart from occasional short bouts of highs and lows my sugar levels (which last a couple of weeks) my levels were good. However since January 2015 I have been experiencing continuous variations of highs and lows with no reason whatsoever. To try and manage this I dropped to a completely no carb diet and was averaging around 800 - 1000cals per day as I was putting on weight, I was also having to increase my levermir. I've now put on over a stone in weight and I'm exhausted. I'm averaging around 4s to 5s in the morning but even after eating Greek Yogurt for breakfast and salads with chicken for lunch my sugar levels are increasing to 18s and 20s by 4pm! Which I can't understand! I can't physically cut back any further, my typical diet consists of mainly protein i.e chicken or fish with veg and salad which is pretty miserable. If I try to eat carbs my sugars shoot up, I use a ratio of 1insulin to 2 g carbs which is quite high considering the little carb intake and even though I'm not eating carbs for a meal I have to lie on the Bolus and say I'm having 15g carbs just for it to register that I have to take Novorapid. I guess this means I'm Insulin resistant but I'm not considered Obese so when I talk to my healthcare team about it, they give me the impression that there's nothing to worry about and they won't tell me how I casn get my insulin sensitivity back?

In addition I have recently discovered that I have diabetic Maculopathy following concerns over poor vision in my left eye. The impact of this makes it difficult for me to read which is basically 90% of my job. I've been wearing an eye patch in work to work on cumputers, so my right eye does all the work, but I'm now experiencing severe headaches. I've never suffered with Migraines before but it's got to a point where any bright lights, smells or sounds cause a headache which lasts all afternoon I'm also getting like an electric shooting sensation if I turn too quick or see a bright light and I really don't know what to do and whether me wearing an eye patch is causing this...

I was turned away from A&E twice because they advised me that no one in the Emergency eye department could see me and because it's diabetic related I can only be seen by one Specialist?? I went to my Boot Optician and I can only be seen by one Optician because she is the only one accredited by the Eye Screening Organisation?? I've also been in contact with my Diabetic Nurse and Dietician and four weeks later I am still having to chase for an appointment to see someone. When I did spoke to a nurse she advised that it might be Thyroid related? So I had two blood tests taken because the hospital thought they only needed to do the HB1aC and forgot the Thyroid....one mess up after another and I've had a gutsful of the NHS, talk about bang your head against a brick wall!! I had to pay privately in the end to get to see an eye specialist and so far my medical bill has reached £300 for the consultation and OCT scan.

Last night me and my husband decided to look for answers on the internet and found this amazing site. Within half an hour I discovered Noctura 400 which might help with my eye and learnt about Glyconeogenesis. I'm hoping this might be the reasons for my current health issues, I never realised that my body could breakdown proteins into fats!?

I wanted to post to ask if any of you have had similar experiences, what you have done to improve things and if anyone has been experiencing headaches like mine and what might be causing them?

Thank you!
 
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noblehead

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Hi and welcome to the forum @RAH79

So sorry to hear that your having an awful time of late, I'll tag some other type 1's who follow a very low-carb diet to see if they can suggest something and help you out @tim2000s @Spiker @robert72 @Heathenlass

Best wishes.
 
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Nuthead

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Welcome. How awful for you to be treated like that. When the people noblehead have tagged come along you will receive lots of good information. Unfortunately Quality of care does vairy from area to area. I have never been refused treatment or turned away when in medical trouble (north Hertfordshire). I don't know where you are but we have a walk in emergency eye clinic at my local hospital. If you look up your health trust on the internet you could find something similar
 
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Hi rah79.
I feel sad for u. I'm a type 1. When I was first diagnosed a fab nurse introduced me to the daphney way. U work out the carbs n sugars in a meal then give uself the correct amount of insulin.
Its freedom.
As I didn't get on with the old ideas nurses. I had a diabetes nutritionist. What a wonderful person.
She recommended a book called"carbs & cals. Written by Chris cheyette & yello balolia. Its in association with diabetes uk.
I learned u body needs carbs to turn into sugars for u body n Brain to get the energy to function!
I also learned nothing is forbidden as long as its in moderation.
It makes me angry to read about diabetics n their families starving them of carbs. Whilst a low carb diet is ok for some. It won't suit all.
I have a very physical job n I need fuel so my body can do it.
If u were u as an insulin dependant I'd ask about the daphney way.
Don't take no for an answer as the lilly way is easy for medical staff, but u need to be in control of u life n body.
As for u eye. I love Specsavers.they do lots of tests.they found I had hyperthyroid dry eye. Yes I,ve a thyroid problem.
I would ask for a blood yes about that.
Also in England u can change u doctor or ask for a second opinion.
Let me know how u get on.
Get the book" carbs n cals" its a real eye oponer.

Daphneywayfriend.
 

robert72

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Hi @RAH79 and welcome

Sorry to hear about your difficulties with the NHS - I hope you can find out what's wrong with your eye.

Regarding the low-carb diet, it sounds like you are getting gluconeogenesis from the amount of protein you are eating - it's difficult to bolus for as it's a much slower BG rise than from carbs. It might be better to increase the amount of fat in your diet instead of protein, which should keep your BGs more level. Have a good read around the low carb forum and ask all the questions you want.
 
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Heathenlass

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Welcome :)
I think you should push hard for referrals to the eye clinic, as you have discovered there are treatments available, and to be honest I am not surprised you are experiencing headaches if you are working with computers using a necessary eye patch :confused: Is there any other part of the job that you could be reassigned to temporarily until your eye problems are resolved ?

As to the rises in your blood glucose , are you bolusing for the low carb meals ? No matter what the DAFNE guidelines say, there is no such thing as a free lunch carbwise, simply because of gluconeogenesis causing protein, and to a lesser extent fat, into glucose as part of the digestive process. The TAG system ( total available glucose ) gives a rough estimate of 50% of protein totals should be treated as carbohydrate, and 10% fat. Thusly, if a steak has say, 25g protein , then the bolus for that would be for 12g carb . BUT, the ratio does vary with everyone, and you do have to discover if slightly more or less is effective for you by experimentation.

More fat in the diet does help, for energy and satisfaction from eating. Again, it's a personal level you have to find, and it's not necessary to go overboard on fat if you don't want to, in fact too much fat in a meal can delay the meal absorption and "miss" the action of rapid insulin. Just ensure that you avoid " low fat" anything and replace it with the full fat version, cheese, for example .

Vegetables and salad will also need a small bolus based on their carb count, the idea that they don't contain carbs is erronous, a look at the nutritional information on the back of a bag of salad leaves shows that . It may be a small amount, but in the context of a full meal, it adds up.

I've been banging on about this app , Cook & Count for a while now, and I make no apologies for that ;) in my opinion it is the best way of accurately counting carbs as you add them to a meal , saves your recipes and information, and covers a wider variety of foods and options that Carbs and Cals ever can, because it becomes personal to you. The protein and fat components of a meal are covered too.

I'll post up a link to TAG information once I've found it, and another useful tool in your toolkit is a half unit pen, that will give you a tad more precision in your dosages and help avoid highs and lows .Both Novorapid and Levemir use the Novopen Echo, that your GP can prescribe if you feel they would be helpful.


I'll look for tha TAG. Link as soon as I can :)

Signy
 
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tim2000s

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@RAH79 I can't add a lot more than @Heathenlass has already mentioned. The issue you are facing is that protein does convert to glucose and you will be seeing the effects of this. In my own case, I follow the 50% rule as mentioned by heathenlass, but I also bolus 50% of the first bolus 1.5-2 hrs later or I see my bg levels creeping up due to gluconeogenesis. Unfortunately, it's one of those things where you need to find your own levels and lots of trial and error is involved.
 
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Heathenlass

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@RAH79 I can't add a lot more than @Heathenlass has already mentioned. The issue you are facing is that protein does convert to glucose and you will be seeing the effects of this. In my own case, I follow the 50% rule as mentioned by heathenlass, but I also bolus 50% of the first bolus 1.5-2 hrs later or I see my bg levels creeping up due to gluconeogenesis. Unfortunately, it's one of those things where you need to find your own levels and lots of trial and error is involved.

Thanks @tim2000s , the split dose is an important mention !

Links re TAG :

http://blog.joslin.org/2012/01/should-tag-be-a-part-of-your-diabetes-meal-plan/

https://healthonline.washington.edu/document/health_online/pdf/CarbCountingClassALL3_05.pdf


Signy
 

RAH79

Active Member
Messages
38
Type of diabetes
Type 1
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Insulin
Hello All,

Thank you so much for your response, I feel like a huge weight has been lifted by coming here and understanding that I'm not the only one.

Firstly, thank you Noblehead for the tags. I'm sorry for the delay in responding, I hope you don't think I was being rude but to give you an update, I went to out of hours GP yesterday as my headaches were excruciating and the Pharmacist refused to sell me over counter Migraine tablets when I told her about the left eye maculopathy. The GP sent me straight to the Medical Assessment Unit in the Hospital and after a CT scan (which was clear thank goodness!) and a look at the back of the eyes they have discovered that I know have retinopathy in both eyes (at least I think that's what the registrar meant by the very technical term of "Oooh both your eyes are blurry at the back" I asked what she meant by "blurry" and she said, "eerr just changes, the same that's happened to your left eye" to which I stated "You mean Diabetic Maculopathy??" to which the response was a tap on the knee and "yea..." I have so much faith!! LOL

I'm now on a high dose of Codeine which is helping alot. They didn't refer me to my Diabetic nurse they just told me to see an Opthalmologist. The soonest I can see one is the 1st July 2015 which is not very helpful as it's left me in a dilema due to work. Granted there is no way I can go to work right now due to the Migraine but once it has cleared I'm not sure what I can do as my work is 100% pc usage.

Hi Nuthead, I completely agree with you, I'm based in South Wales and it appears that the level of Service here is completely different to other areas. Yes I think there is an Emergency Eye department and that was who the A&E registrars were trying to contact but were told on the two occasions that I couldn't be seen 1. because there was no one available who specialised in Diabetic Retinpoathy to see me!! (Unbelievable!) and the second time I was told to walk into the City Centre to go to any Optician who could fit me in. That's when I called my Boots Optician who said I could only be seen by an Optician who was Welsh Eye Screening accredited.

Hi Daphneywayfriend, Wow I didn't know Thyroid problems can cause dry eye? Did you know you had a Thyroid issue at that point? Yes I use the Dafne way of carb counting and I use ratios. I have a bolus adviser that current work's out everything for me. My ratios are averaging around 1 to 2g carbs on four time slots, my correction dose is 1 to 1 and I've always been wondering why I'm on so much more insulin than others. When I've need support from my Diabetic nurse I have to call a number and leave a message. The answerphone states they will call back within one working day but after two weeks I ended up finding an old email from one of the nurses following the Dafne course. The last email I had was two weeks ago stating that they will arrange and appointment for me to have a Sensor fitted to record my BG, however when I chased for an update I've received an OOO until 9th June 2015.

Hi Robert - Yes I didn't know anything about gluconeogenesis until I saw this site! In one way it's ingenious that our bodies can synthesise sugar from Proteins like that as I had no idea. I guess it's a way of maintaining an equilibrium and if you stop eating an essential source of glucose your body will find another source. But it infuriates me that I have to find this information out this way instead of from a Diabetic Healthcare team as I now have to try and figure out how to change my diet to regain the insulin sensitivity back and regain control over my BG for my eyesight sake!

I'm really grateful though for the calculation by Heathenlass! I will definately use the links and have a go at the app as I usually use Myfitnesspal. I did have an emergency referral made by Boot Optician when I first starting having prblems with my vision in the left eye. But my visiion got worse and when I went to A&E they said they only received the referral a day before (this was over a week later after I have seen the Boots Optician) I was then told I would go on an 8 week emergency waiting list (can't be that urgent if it takes 8 weeks!). Thanks for the recommendation on full fat versions, as I always go for the low fat low carb and low cal options only to find that what they take out is more often than not replaced by something much worse i.e salt or sugars.

Hi Tim2000s I will try the split dose but at the moment I'm using correction doses on a daily basis and I'm having to so on average 6 injections a day to try and manage BG. However the correction doses don't seem to improve anything greatly, in fact on one occasion when I was 20.6mmol I did a correction dose of 10 Novo Rapid units and without eating anything in between an hour later I was 25,7mmol! I suspected that it might be an injection site issue but nothing obvious stood out. Since reading your thread however it may have something to do with the breakdown of protein which I would have had earlier that day!

I had my Thyorid test results last week which came back stating normal. They said the levels were 1.03 and the range for normal was 0.3 to 4.4 this does seem to be a very big normal range though??

Thank you all for your help though I really appreciate the advice and support and knowing I can find some answers here is a huge relief. I'm going to try and slowing introduce carbs as from what I have learnt the key is gradually. I'm just concerned about adding fat due to putting one weight. I was 9st 3 in January and I'm now 10st 5 which is really getting me down. I'm doing really gentle exercise int he hope that it will use up the fat stores. I'm just feeling really down at the moment because even though I now have a potential avenue to help improve things it's not going to be an overnight solution and I'm worried about how long it will take to improve my BG and hopefully improve my sight. I hate this ****** disease! It's ruining everything, my work, my weight, my diet and now my eyesight... :(
 
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noblehead

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@RAH79, I'm pleased they've referred you to see a Ophthalmologist and hopefully they'll diagnose the problem correctly and get you on the right treatment path, have a look at the following as it has a wealth of information on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/index.html

Good luck and hope all works out well.
 

RAH79

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Thanks Noblehead I've just been reviewing that link, it's got some really interesting info.
 

donnellysdogs

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I lived in South Wales too and some hospitals are better than others....

Regarding levels and eating.. Personal question though... Do your stomach n bowels work normally? Only that I saw horrendous increases in my levels due to having undiagnosed slow colonic transit. Food used tontale such along time to breakdown and move through my stomach it was almost like it was feementing high levels of glucose from the excessive time it took to travel...

I got referred to a gastro chap who did a shapes test to confirm. Now I have resolved completely naturally by having flax seed and chia seed daily and now my stomach flows nicely my levels have returned to normal with the same insulin requirements as previous to the STC diagnosed.

I lower carb but certainly eat some from 12-50g a day with milk on top...

Its only an idea, and other suggestions are probably far close to answering your problems.

Just my odd experience...
 

RAH79

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Type of diabetes
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Hey Donnelly

Thanks for your suggestion but it not been an issue for me. It is interesting though that even a slow digestion can effect BGs as well and it good that you were ale to find out a way to get it back under control. I'm hoping that I will find a way to get things back under control soon. Thanks for your help x