Newbie, Struggling to get blood sugars down to acceptable levels.

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idstretch

idstretch

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Relationship to Diabetes
Type 2
Hello.

Since being diagnosed as Type 2 diabetic I have struggled to get within the normal boundaries of blood sugar level of 5 - 8. No matter what I do, they stay high. I have Klinefelters syndrome, I don't produce Testosterone so have lived off of sugar to get through my day. I'm finding it really hard to change my bodies dependence on sugar, normal levels between 9 -15.

Is there any information within the society that can help me to reduce my levels? If I do get down to between 5 - 8 I lose my concentration, I become drained of energy, I find it difficult to drive, I just want to sleep.
 
Hiya - sorry to hear you're having trouble but would you please tell us more, before we consider what might assist you. How long have you had Type 2 and what treatment have you tried so far for it. What if any lifestyle, exercise and/or dietary changes have you made?
 
Hi
7th June 2016 was my first Diabetic appointment. I was put onto Sukkarto SR 2x1000mg Metformin hydrochloride from my first appointment and its never changed. I do a physical job, out in all weathers and do a lot of walking/hiking when the weather allows, doing above 8000 steps a day, sometimes 15,000 steps. I have reduced my portion size and during the summer months lived on fish and meat with salad, but levels were still high then ranging from 7.2 to 12.8 being the highest.
 
Blood pressure ranges from 120/80/59 when totally relaxed to 135/86/66 at the moment but has been better and worse in the past.
 
Hi and welcome.

Just had a quick look at Klinefelter Syndrome and it includes a predisposition to autoimmune conditions, so I wonder if you might actually be a slow onset Type 1 or LADA (Latent Autoimmune Diabetes in Adults) rather than Type 2. I think you should ask for a referral to a specialist diabetes clinic since your diabetes is not straightforward and you could then ask for GAD antibody and C-peptide testing ie Type 1 testing. If it is autoimmune diabetes, then sooner or later.... ideally sooner.... you should be started on insulin.
 
Morning.

Your the first one to look at Klinefelter's and Diabetes, no one else has.

That adds fuel to the fire as the saying goes.

This will make the next appointment with the Diabetic Nurse an interesting one, as I hate needles and struggle to press the button to jab a finger for a sample. When I mean struggle, my finger just freezes, my brain tells me it's going to hurt, when I finally hit the button and it jabs my finger it does hurt.

When I was first diagnosed I believe my HbA1c was 130 or at least around that figure, I got down to 55, but before my last one it was sitting at 60. My Cholesterol has always been high as it is throughout our family and never seems to get below 6.3 baring in mind I'm on statins, that I was forced to go on from the beginning, despite my objections.

It's amazing, I might actually find help here, or at least something to think about.
 
Thank you Robin. @GreenArmy might have some insight to this as very little in known about the connection between Klinefelter's and Diabetes, like so many things medical related unless enough problems occur no investigation is done, shame really as both Klinefelter's and Diabetes have been around for a long time.

Klinefelter's patients are 3 times more likely to develop diabetes, be it type 2 or type 1. This in not because of diet, but just in general, it is one of the complications with Klinefelter's that is recognised to happen a lot.

However there is very little information to whether diabetes is easier or harder to treat because of the lack of testosterone in the body and to whether the higher blood sugar levels are the norm for Klinefelter's patients.
 
Welcome to the forum @idstretch

Sorry to hear about the challenges your diabetes is giving you :(

Hope you are able to get a referral for some more specialist support, and perhaps a clarification of your diabetes type.

Either way, it certainly seems like your meds need adjusting, and that some addition or other would be worthwhile.

Is your GP surgery aware of the very low carbohydrate intake you were eating over the summer (assuming you didn’t add starchy carb items to your salads), when your levels were more in range? It feels like your body it struggling to metabolise much in the way of carbohydrate at all. :(
 
Klinefelter's is a challenge that is only now showing it's true colours.

The Diabetic Nurse was aware as I did a chart times and test results done over a period of 3 months, with varying times during the day, but keeping first thing in the morning when I woke up and last thing at night before retiring for the night the same

I did a food diary in the beginning to show my usual foods, they showed a high concentration of Carbs being consumed, I have reduce that amount, by reducing my portion size. Also I try not to eat anything after 8pm, sometimes this doesn't happen due to work, but normally I'm pretty good. During the summer we all eat less and in my case more healthily, however in winter my salads go out the window in favour of warm hearty food, especially as I work outside and need that warm feeling inside, there in lies the problem of carbs going up.

A few alternatives have been put forward, i.e. new additional medication Empagliflozin, Ozempic and Trulicity injections. My concern for these alternatives are that I already forget to take the medication that I have due to Klinefelter's and the bad memory I get from the condition. It's more a fear factor of the outcome if I forget to take these medications.

I know I have to do more, it's the fear of making a mistake that concerns me the most.
 
It obviously won't be the whole solution (and I hope you manage to get somewhere with figuring that out with your healthcare professionals), but it is possible to make warming winter stews and soups that are lower in carbs than most of the traditional British recipes by using different vegetables such as cauliflower, celeriac, broccoli. If you are able to take a soup thermos with you to work then you may be able to batch cook some of your own to take, otherwise maybe try to think what the lower carb option(s) are likely to be if you need to buy food from a cafe etc. E.g. cream of chicken would probably be lower than potato & leek.
 
That very high HbA1c at diagnosis makes it a bit more likely that you are Type 1 in my opinion. Unfortunately quite a few people are misdiagnosed as Type 2 simply because they are mature adults or a bit overweight. Many clinicians in GP practices are wrongly under the impression that Type 1 only develops in children and young adults, so if you are a mature adult, then it must be Type 2 and once you get the Type 2 label it can be quite difficult to get it changed or even get the appropriate testing done and there is unfortunately a bit of a 2 tier system of treatment with diabetes within the NHS and indeed the wider community/media. For instance Type 1 diabetics now should have automatic access to a sensor applied to your arm to scan for glucose levels instead of regular finger pricking whereas most Type 2 diabetics who want to benefit from that technology have to self fund and it is expensive.
I think there is a possibility that many men with Klinefelters will get misdiagnosed with Type 2 when it may be a slow onset Type 1 and this may then lead to an inappropriate association of Type 2 with Klinefelters, but perhaps I am biased because like many others here, I was misdiagnosed/assumed to be Type 2 so I know how easy it is for that to happen.

I appreciate what you are saying about needle phobia and it is something quite a few people suffer with but please don't allow that to stop you from pushing for more clarity with your diagnosis and appropriate treatment. Your quality of life, sight and attachment to your feet 🙄 could depend on it.

Out of curiosity, are you particularly overweight? I ask because the injectable Type 2 treatments are targeted towards obesity and assisting with weight loss, so might not be appropriate if that is not an issue for you.
One thing is for sure, hormones definitely affect BG levels. Type 1 women find this during their monthly cycle and have to adjust their insulin doses accordingly. I very much suspect that there is less known about how a lack of testosterone impacts BG levels/insulin resistance but I would be surprised if it doesn't and I think it is all the more important that you are referred to an endocrinologist who should have much more knowledge about it as well as diabetes and be able to suggest more appropriate treatment than a nurse at a GP practice with a minimal amount of training to treat standard Type 2 patients. Even if you are not Type 1 or LADA, I think you need the support of a specialist clinic to manage the combination of your much more unusual and complex conditions. Don't let the nurse make you feel like this is a failing on your part. In my (non medical opinion) your treatment is beyond her training and you need to politely and persistently push for a referral to a clinic, especially as this has been going on for quite a long time now.

Good luck and let us know how you get on.
 
In answer to your question Rebrascora, I'm not that over weight, I was a couple of years ago, but have since lost 2st 9lbs, my original stating point was 18st 9lbs. However I have been told that I need to lose more weight as I should be at least another stone lighter. At present I am classed as overweight and my ideal weight is 14st 9lbs making me the top side of ok. However the weight range for my height is supposed to be 13st 4lbs - 16st 4lbs, at present I am in that bracket, but would prefer to be in the middle.

I think after reading all of the replies to my initial thread, I'm grasping new possible directions to go in. I now have some information that I can put to my Diabetic Nurse in a months time, that I hope will either give me a new diagnosis or at least clarify the one I have and give me a better chance to reduce blood sugar levels.

I'm not perfect and don't follow everything to the letter all the time, which is my bad habit and mine alone. If I have to go in a new direction, then I at least have support here if nowhere else. I am eternally grateful for all of your posts in trying to help me move forward from where I am now.
 
idstretch said:
I'm not perfect and don't follow everything to the letter all the time, which is my bad habit and mine alone.
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Just remember, none of us are perfect nor can we be, nor would the nurse be in your/our situation As long as you do your best, that is all anyone can ask and you should not be shamed or criticized for it. The occasional slip is normal. We have lives to lead beyond managing our diabetes. I would not expect your nurse to have any answers. Unfortunately she is no more in a position to confirm your diagnosis than you or we are. You need to be referred to a specialist who can do more tests and has specialist knowledge.
 
Hey OP, am so sorry I have been so really busy recently, I am the original GreenArmy, I only came back to help you out, sorry for not doing it sooner, how are you doing?
 
IamLawrie said:
Hey OP, am so sorry I have been so really busy recently, I am the original GreenArmy, I only came back to help you out, sorry for not doing it sooner, how are you doing?
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Struggling with Klinefelters and Diabetes running side by side. My levels are still high, I am now Insulin resistant, I'm still producing, but not enough to make any difference.
How did or have you managed to get your levels down. My diabetic nurse will not accept there is a coalition between the two, one impacts the other. However as my body has depended on sugar to function, the closer I get to 8, then I struggle to concentrate, stay awake and do tasks. I will have to go onto insulin to aid in bringing my levels to with in the normal range.
How do you survive? Did you have high levels at your diagnosis?
 
idstretch said:
Struggling with Klinefelters and Diabetes running side by side. My levels are still high, I am now Insulin resistant, I'm still producing, but not enough to make any difference.
How did or have you managed to get your levels down. My diabetic nurse will not accept there is a coalition between the two, one impacts the other. However as my body has depended on sugar to function, the closer I get to 8, then I struggle to concentrate, stay awake and do tasks. I will have to go onto insulin to aid in bringing my levels to with in the normal range.
How do you survive? Did you have high levels at your diagnosis?
Click to expand...
Sorry to hear you are struggling, Im still new to it all also, my levels when im poorly or under the weather can be 18 which is normal for when i am poorly, in order to get the levels down to a sensible level ie 8 or so I have to eat a lot less and plenty of veggies, the issue then is im not full up. Are you on HRT (hormones) if you preferred to speak in confidence I am open to private chat. Up to you.
 
I'm fine as we are. My normal as it is now is around 9 - 13. The only times I have been around 7 - 8 was when I ate salads with a little meat in. I have cut out so many foods as they are bad for me and I find it hard to regulate the numbers of those foods. I have found now that the only way I can get my numbers down, is to miss breakfast, have a very small lunch, have a evening meal, then nothing till the next day. This is fine when I'm on holiday or working from home, however for work I need carbs in the morning to get me to lunch, that then gets me to tea, then I don't eat again till morning, hence my levels of 9 - 13. Yes I am on HRT, pump action gel 4 pumps per day 5g in total. The gel helps with energy levels, keeping me balanced
 
It sounds as if you may not be eating enough protein or healthy fats which will be needed if you are reducing the carbs.
This link may give you some ideas for foods and meals which you can try which will be low carb. https://lowcarbfreshwell.co.uk/
 
It was an interesting read, but it didn't tell me much I don't already know. I have a balanced diet, not perfect I admit, some bad habits. I have boiled or jacket potatoes, I eat plenty of eggs and cheese, I also love fruit and some evenings for tea I that's all I will have. I try not to snack and don't eat anything after 8pm.

On this site, there are just 2 of us that are diabetic and have Klinefelter's Syndrome, we can't be the only ones as I know plenty that are in the same boat as us, but here we stand 2 in a sea of thousands that are trying to find a compromise and have a better longer life.

I am not a diabetic due to my eating habits entirely, but more from having Klinefelter's Syndrome. It has been a slow burn problem since puberty, since then my body hasn't produced Testosterone. My testosterone levels have only recently achieved normality from constant medical introduction of the right medication.

Before that, the only way I could function was with sugar as that was the only source of energy provided.
 
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