I need help

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Well done from me too. I know that must have been a really difficult step but it is major progress.

Can I just suggest that you alter your Libre settings to the standard 3.9-10 that are commonly used.... even for non diabetic people. This is important, firstly because non diabetic people fluctuate within this larger range, so by setting it at 4-7 you are trying to achieve something that "normal" people often cannot achieve and mentally it is setting you unrealistic targets... which you are then trying to adhere to. The 4-7 range guidelines for diabetes relate to spot BG tests before meals and should not be applied to Libre which shows you what BG levels do in between those spot tests. Having that very narrow green band on your graph gives you the wrong perspective. You also have to remember that 70% time in range (3.9-10) means that your diabetic management is very good..... so it doesn't mean that you should never go above 10. The doctors and nurses now understand that it is perfectly acceptable to go above 10 as long as you come back down again reasonably promptly most of the time, either by use of insulin or exercise. If it doesn't come back down from double figures in say an hour, then try a unit of insulin.

Please amend that range to 3.9-10 because I know that bigger range has made a massive difference mentally to how I cope with my diabetes (and my perfectionism) and whereas I was really struggling to achieve the 4-7 premeal BG targets quite often, which made me feel like I was doing badly, I can consistently get 80-95% time in range with this Libre recommended range and that means that I am actually excelling rather than failing. It may seem like changing the goal posts in order to achieve success but it really isn't. BG and Libre monitoring are very different and you have to adopt different approaches. Not only that but I think at long last clinicians are starting to realise that making us feel like "bad diabetics" when we fail to achieve unrealistic targets is demotivating and damaging mentally. Getting a positive result and feeling like you are doing well is much more encouraging to keep at it and perhaps try to do better still. So set those goal posts wider apart and don't be frightened of missing occasionally or even regularly. There are a lot of top class footballers who get paid huge sums of money and still don't hit the target, often in front of millions of people..... surely you are allowed to send a few wide of the posts or over the top.
 
Proud to be erratic said:
Well done Emma - we can't all physically help, but we are with you in spirit. Your graph doesn't surprise me and wouldn't alarm me (mine is frequently like that); big leap up after such a long time for you on very low carbs would seem normal to me. I'd try a tiny bit of insulin now to contain this and as part of the experimenting that others have suggested. Stay strong and keep posting.
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Thankyou , it’s lovely to know I have support like this. Thinking about it maybe I should of tried the carbs in the afternoon as mornings are not so great for me, however I don’t know if I spurted out some excess insulin but I’ve been between 3.9-5 most of the day and even lunch (which included some crisps! ) hardly had an impact
 
Inka said:
@Proud to be erratic is right @EmmaL76 Very low carb does cause physiological insulin resistance. It’s why people on very low carb diets are advised to eat more carbs for a while prior to something like an oral glucose tolerance test else they’d get artificially high numbers.

You mentioned earlier that you did speak to someone but they kept going on about your childhood, etc. if you see a private counsellor, you can tell them at the first appointment what you want to talk about and what your aim is. If they randomly start sessions by going on about something else, don’t be afraid to interrupt them and say directly that you’d rather continue talking about your specific issue. Mine had a phase of trying to ramble on about general stuff, and after being a bit evasively polite, I directly told her I wanted to talk about ‘X’. Don’t be afraid to do that. Sometimes they get into a habit of going through their interesting little topics, which might be ok if you had endless time and money, but not many people do.

Well done on eating the cereal! I know you’ll think I’m just spouting a cliche but I’m not - it genuinely does get easier each little step you take. Not only that, your mental processes will probably be improved by better nutrition. You’d be surprised how much better you can feel when you’re properly fuelled and in a good eating routine. X
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physiological insulin resistance

I’m sure this is definitely a thing, never really thought about it, but would make total sense particularly when looking at the rest of my day which seemed better than usual.
I think sometimes therapists just assume everything that’s wrong with you is always related to your past. I can deal with that stuff but it’s the hear and now bothers me.
I do want to feel better… I really do xx
 
rebrascora said:
Well done from me too. I know that must have been a really difficult step but it is major progress.

Can I just suggest that you alter your Libre settings to the standard 3.9-10 that are commonly used.... even for non diabetic people. This is important, firstly because non diabetic people fluctuate within this larger range, so by setting it at 4-7 you are trying to achieve something that "normal" people often cannot achieve and mentally it is setting you unrealistic targets... which you are then trying to adhere to. The 4-7 range guidelines for diabetes relate to spot BG tests before meals and should not be applied to Libre which shows you what BG levels do in between those spot tests. Having that very narrow green band on your graph gives you the wrong perspective. You also have to remember that 70% time in range (3.9-10) means that your diabetic management is very good..... so it doesn't mean that you should never go above 10. The doctors and nurses now understand that it is perfectly acceptable to go above 10 as long as you come back down again reasonably promptly most of the time, either by use of insulin or exercise. If it doesn't come back down from double figures in say an hour, then try a unit of insulin.

Please amend that range to 3.9-10 because I know that bigger range has made a massive difference mentally to how I cope with my diabetes (and my perfectionism) and whereas I was really struggling to achieve the 4-7 premeal BG targets quite often, which made me feel like I was doing badly, I can consistently get 80-95% time in range with this Libre recommended range and that means that I am actually excelling rather than failing. It may seem like changing the goal posts in order to achieve success but it really isn't. BG and Libre monitoring are very different and you have to adopt different approaches. Not only that but I think at long last clinicians are starting to realise that making us feel like "bad diabetics" when we fail to achieve unrealistic targets is demotivating and damaging mentally. Getting a positive result and feeling like you are doing well is much more encouraging to keep at it and perhaps try to do better still. So set those goal posts wider apart and don't be frightened of missing occasionally or even regularly. There are a lot of top class footballers who get paid huge sums of money and still don't hit the target, often in front of millions of people..... surely you are allowed to send a few wide of the posts or over the top.
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Ha ha , you noticed my target range was quite small then. I did start at 4 to 9, but it gradually crept down lol. The libre is wonderful but I think maybe it just become another way to punish myself. I’d say when i spike (which I don’t allow myself to do very often) I would be back down within the hour xx
 
EmmaL76 said:
Ha ha , you noticed my target range was quite small then. I did start at 4 to 9, but it gradually crept down lol. The libre is wonderful but I think maybe it just become another way to punish myself. I’d say when i spike (which I don’t allow myself to do very often) I would be back down within the hour xx
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I resisted commenting on that; however, on reflection, as I understand from a T1 cousin of over 40 yrs the traditional advice in the era before technology joined the party was to try to stay between 4-7. No doubt this was because only by setting nearly impossible parameters could people with diabetes achieve something "near".

But it seems to me that 4-10 are now the internationallly accepted 'in range' parameters, when taking advantage of technology for BG monitoring rather than just finger pricking. We are moving into a new and I truly believe better understanding of what problems diabetes can cause and these wider in range parameters reflect that understanding. Not only does technology give us better visibility of our BG status minute by minute, but it allows faster response when appropriate. So I agree with @rebrascora and think that you should "play fair" and use the technology with the appropriate parameters of 4-10. You are "punishing yourself" unnecessarily by trying to use the older parameters with the new technology!🙂
 
Proud to be erratic said:
as I understand from a T1 cousin of over 40 yrs the traditional advice in the era before technology joined the party was to try to stay between 4-7
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Probably that was intended for "when you measure", so mostly just before meals. The current 3.9-10.0 is for all the time, which (before CGMs) we had no way to judge. (No good way. I guess you could try testing at random times of the day and that sort of thing, but I don't remember anyone suggesting doing that.)
 
@EmmaL76 - I was pondering your situation.

Regarding your diabetes care, there's an option I should have thought of prior to my last response, but I didn't, but here goes.

As I understand it, your diabetes consultant has left the clinic and not been replaced. An Endo you consulted privately felt unable to help as you have a clinic (even if the reality is they are absent).

Under the NHS you are entitled to a second opinion on anything you are unhappy with. (No care = unhappy in my book). You then ask your GP to arrange a second opinion, and name the person you want to see.

They can and should do this. The reason I am absolutely firm on this is I have done it - at the suggestion of my GP. She way out of her depth with my thyroid, and my initial referral uncovered a consultant with no interest. My GP suggested I should see someone else and sent me off to research whom I wanted to see. I just called her with the name and she made the referral.

She was happy to refer on the NHS or privately. It was expedient to have the consultation privately, to avoid a wait.

The Endo was happy to pick up my care, even though the initial Endo was a colleague of his in the same hospital. I am still under the second guy's care, who generally sorted me out.

Similarly, I understand you can ask to plain old change clinics.

If your choice would be to swap care to the Endo you've already seen, just tell your GP what you want to happen.

A second opinion, on the NHS does not have to be in the same clinic, hospital or even CCG. You can choose where you go, although where long term care is involved, you would need to consider the convenience (or otherwise) of going a long way out of your area.
 
Bruce Stephens said:
Probably that was intended for "when you measure", so mostly just before meals.
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Certainly before meals and of course before driving and associated DVLA rules (his work involved a lot of driving around UK); also when feeling hypo and hyper (which my cousin told me he regularly could recognise).
Strangely, to me, until a very recent incident he never had any means of testing for ketones.
Bruce Stephens said:
The current 3.9-10.0 is for all the time, which (before CGMs) we had no way to judge. (No good way. I guess you could try testing at random times of the day and that sort of thing, but I don't remember anyone suggesting doing that.)
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My (((hug))) wants to queue in line with all the other hugs you were sent in this thread, @EmmaL76, so that you never run out of them. I hope you get the care you need soon.
 
I can't add to all of the advice already given but wanted to offer another virtual hug <3

edit - just a thought @EmmaL76 could you try contacting Partha Kar? He is clinical lead for NHS England and often offers his help to people on Twitter who are having issues with teams/referrals etc. so may be able to help you
 
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Good Morning @EmmaL76
Just checking in and seeing how your day went yesterday, where you are at this morning and to leave a fresh "Pile o Hugs".
 
EmmaL76 said:
Thankyou Colin, for your honesty and your time. Yes I was referred after a breakdown in feb 21. If I’m honest I’ve had some pretty rough years and my diagnosis was the cherry on top. Then my doctor decided I must have cancer as I wasn’t ticking any boxes. Her exact words were we do not think you have diabetes we think you have raised blood sugars due to cancer we suspect pancreatic. I passed the phone to my husband and she repeated it to him. I felt like all the blood had drained from my body and that was it, I was gone. I went through lots of tests over a few weeks and don’t really remember much about that time. The diazepam meant I would just sit and stare for hours. My test were all clear but I developed a severe phobia of doctors, I even switched surgery because I couldn’t go in the building where it all happened. I am slowly beginning to realise that overcoming the mental aspect is going to be harder than dealing with the diabetes. I have however made a start, it might seem silly but it’s a massive big deal for me, I ate 20g of cereal this morning with no treadmill may I add, photo evidence included
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Sometimes doctors are atrocious.
I had a run of headaches and back pain. Doctor said “I’ll get you a scan because it’s probably cancer”

Turns out it was a side effect of medication they prescribed.

Another time I presented with depression and was asked “Have you considered turning to Jesus?”

Ok so now I can laugh at both of those but at the time I was devastated and dismayed.

How are you this morning anyway?
 
I saw someone mentioned Partha Kar.
He’s on Twitter @parthaskar and his email is:

drparthakar@gmail.com

He’s at Portsmouth Hospital Trust so will also have an NHS email but I can’t find it.
 
Good morning everybody, was really overwhelmed to see all the responses again this morning. Thankyou everybody for the suggestions you have given me to try and get some help. I did try yesterday to book in with my doctors to try and get to somewhere but they couldn’t get me in till the 26th March. The problem is with me I have to get things done whilst I’m in the frame of mind to do it or I just leave it and plod on. So I am going to look at other routes like suggested. Thanks for all the hugs and well wishes, for those with practical suggestions and those who can offer nothing but support. You all have your own struggles so it means a lot. I am starting to look at myself in a different light, I had a bit of a moment yesterday when I got quite upset, feeling weak and pathetic when someone said to me that I was the strongest person they knew !! I was like what me? I’m a mess? Couldn’t believe that somebody could see me like that. Turned from quivering mess into Zena warrior princess lol
 
gll said:
Good Morning @EmmaL76
Just checking in and seeing how your day went yesterday, where you are at this morning and to leave a fresh "Pile o Hugs".
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Morning thank you so much, day was ok trying to ignore the higher sugars and think of the bigger picture. This morning is a nightmare though which isn’t helping, my new drive was supposed to be finished yesterday and it wasn’t, having a new fire fitted today and when they couldn’t get over the drive with all their stuff they kicked off! I didn’t cry and I’m definitely not scanning my libre !
 
teapot8910 said:
I can't add to all of the advice already given but wanted to offer another virtual hug <3

edit - just a thought @EmmaL76 could you try contacting Partha Kar? He is clinical lead for NHS England and often offers his help to people on Twitter who are having issues with teams/referrals etc. so may be able to help you
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Thankyou so much for that suggestion and for the hugs… I can’t believe everybody is being so nice xx
 
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Emma we are being so nice because you are an absolutely lovely person and you deserve it and we care about you..... and yes, you are incredibly strong both physically and mentally.... in some respects maybe too strong. I think very few people could continue as long as you have been on such a restrictive diet but also take the time to be helpful and supportive to other people who are probably not in as bad a place as yourself. The thing is that you have been using that strength against yourself instead of helping yourself. I can be my own worst enemy too and my biggest critic, but with diabetes you really have to find better balance and be kinder to yourself. It is tough enough to manage as it is without making it harder for yourself.
I totally understand how there are times when you know you are ready to ask and accept help and other times when you aren't in the right frame of mind. I wonder if it would help to ring the Diabetes UK helpline when you feel you are more open to discussion and change. You do need to be very clear and open about the situation though whoever you talk to as as your concerns about eating carbs and your levels rising and half starving yourself as a result are the biggest factor in this and they are almost certainly causing the confusion with your diagnosis. It is important to make that clear. As with diabetes, recognition and acceptance of the problem and acknowledging it, is the first step in dealing with it.

So sorry that you have had a stressful morning with tradesmen. So not what you need right now! Sending you more (((HUGS))) to add to the big pile you already have. XX
 
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