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Jenny105

Jenny105

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My DN has stopped my fingerprick test strips . I used them when the numbers were rising above 10 to ascertain that the figures by my efforts were falling. However I bought some strips to use infrequently. The last readings over the past week are 18 , 21 , 29 and today 25. I am moderately thirsty, need to wee immediately ,when the urge arises. Otherwise ok
I employed a dietician who thinks my meds (metformin upped from 500 - 1000 arent working for me) Shes had difficulties getting thru to my medical practice with her findings. Im supposed to have a phone consultation. on tues pm , tomorrow what should I be asking ??
 
I will amend or hide the signature shortly. PS Ive been using the 1800 meal plan but amended for my height and weight. I have the desire to add add a few kg to my meagre weight. But this week Im using the 1200 after the above events
 
Gosh, those numbers are on the high side.

Has your dietician recommended and changes to your diet, and more generally have you changed your way of eating at all? What had you eaten when you had those numbers?
 
I have always thought you were Type 1/LADA Jenny and I still believe you are.
Unfortunately it sounds like you may be approaching crisis point where your system is not managing to produce enough insulin to keep levels in check. Do you have Ketostix to test your urine for ketones? If so, please keep a close eye out for ketones developing and get yourself off to hospital if they get above 2. If you haven't got Ketostix, please get some. They can be purchased over the counter at pharmacies for about £5 or online. You should be testing for ketones when your levels are persistently mid teens or above.
Also if you start to feel unwell...abdominal pain, nausea, vomiting or respiratory distress or your breath smells fruity (pear drops) get to A&E urgently. Really concerned that you have been left without test strips by your medical team. Please make sure you have plenty to keep testing regularly during this period of elevated levels. I know they are not cheap but please keep yourself safe. Ketones can develop quite quickly in some people and are very dangerous, because they cause your blood to become toxic, which can damage organs and potentially put you in a coma and ultimately die if you are not treated. I am not trying or wanting to frighten you, just to help you to keep yourself safe and know what to look out for and when to get urgent medical help.
 
Thanks for the advice . My dietician thinks Metformin isnt doing the job and I might need other or background insulin. she waited til after my Ab1Hc in early March to try to make contacted. I hope she did by today . The Nurse is supposed to be ringing tomorrow for regular check up. Keytone porridge for breakfast . reading down by 5. I'll checkout the keytone test when the pharmacist opens at 2.15.
 
I think you might need insulin too @Jenny105 Those are high numbers and I know you’ve always had difficulties since diagnosis.

Get some Ketostix as a precaution (only £5 or do). If your blood sugar is gradually coming down, carry on with what you’re doing and you should be ok until your call tomorrow. As for what you should be asking, explain what’s happened with your blood sugars and the fact you can’t put on weight, along with your dietician’s comments, and ask if you need additional medication.
 
Ive sent another message to the surgery , Tomorrow looks as if its been cancelled because the doc hasnt received the dieticians email. I wanted to have a full discussion . Are private diabetes doctors hard to find. Ive been frustrated b4 now Im quite concerned. Im off to get the keto stix now : -))
 
Jenny105 said:
Ive sent another message to the surgery , Tomorrow looks as if its been cancelled because the doc hasnt received the dieticians email. I wanted to have a full discussion . Are private diabetes doctors hard to find. Ive been frustrated b4 now Im quite concerned. Im off to get the keto stix now : -))
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If you choose to see someone privately, just look up the Endochrinologists at your local hospital and look them up on Google (yes, Google). They are likely to show up on BUPA, Nuffield or Spire hospital’s websites are working there. On both profiles, ensure they state diabetes as an interest.

From there, if you don’t know any of them, it could be a lottery of course, but most will need a GP referral, but frankly, it’s not up to my GP to govern how I spend MY money, so wouldn’t expect too much resistance. He/she will need a name to make the referral.

Before seeking a referral, it could be worthwhile contacting the relevant hospital’s appointment line and asking when their next available appointments are. Some do more privately than others. My Endo only does one session a month, so if he happens to be going on holiday it can take a while to see him. Just a thought. If you go down that route you don’t want a long wait really.
 
@rebrascora ; @Inka first test at exactly 15 secs ''Trace '',- first colour past n, as the norm .
Should i continue with these tests plus continue low carb meals for now. I know how to do that !! Ive been steadily increasing the carbs since October . The DN didnt seem bothered. I tried the 1800 cal diet with adaptations. I was surprised fruit was allowed so much but tried limited amounts. Ive now downloaded the 1200 also using my own safe recipes, rather plain, egg etcs , fish , chicken useful veggies and salad .10 cal jelly, soya yog no sugars. Thanks for your support
I dont seem to have hidden the signature . Apologies
 
You should not be restricting calories as from what I understand you are under weight. As regards carbs, I think that reducing carbs is what has caused such confusion with your diagnosis and whilst it isn't nice to have to push your body to the point of crisis by eating more carbs to get the diagnosis and treatment you need, I think it may be coming to that situation. I am not suggesting you gorge on carbs but eat a "normal, healthy" amount and if your BG levels continue to remain high and your ketone levels increase, then hopefully that will get you started on the treatment you need.

You had an abnormal GAD antibody test which suggests to me that you are most likely Type 1/LADA, especially taking into consideration your slight build and high HbA1c at diagnosis. The C-pep test was likely normal because you had adjusted your diet to try to manage your diabetes and so your beta cells had had a rest and were able to cope a bit better. If you continue to restrict your diet this will, in my opinion, continue to thwart you from being properly diagnosed. So in your situation, knowing what I know now, I would follow a normal healthy diet including carbs and up your calorie intake because you need those calories to stop you losing more weight and monitor BG and ketones when BG is 15 or above and keep putting pressure on your GP practice, but seek A&E help if ketones start increasing above 1. Certainly if they get to 2. There are 50 strips in the pot, so don't be shy of using them when you need the loo and your levels are high.
A trace is fine and normal. Once they go above 1, that is not normal and I would say that if they hit 2, seek help.
 
@rebrasco Ive been coming to the same conclusion. As I believe has the dietician, And yes without full advice I went a bit full on over reducing carbs
Ive lost 2 friends in recent years to different types of Diabetes and another (cured with diet) had a stroke. So I was wary.
If someone had explained in the beginning what i should and shouldnt do, I wouldnt be in this mess.
Never mind the sun's shining , the washings out, the dogs sunbathing. and i have supporters. x
 
Sorry to hear you are having trouble getting seen @Jenny105

Can you ask your GP to refer you to the local hospital clinic - who should be able to get to the bottom of your unusual diagnosis.

You may also want to call the DUK Helpline (Mon-Fri 9-6) to chat things through with them?
 
@everydayupsanddowns Hi I had a phone call from the DN today. My hubby took the call, conveying the queries and I passed him answers to go back to the nurse. Not completely satisfactory as she wants to up the metformin . She needs to know if that doesn't bring down the readings in 2 - 3 weeks. I now suspect it wont and so does my dietician .
My doc who i can converse with more comfortably, has booked a call next week ......... On ward and upward
 
Readings on keto stix are going between 0 and 0.5. I will take reading 2-3 times a day.
And check fingerprick once or twice a day. DN only wants every 2-3 days!!
Im sticking with 1800 cals for men as a base. I'm a lady , only weighing 45kg. need the extra. I havent put on any weight really, since Nov 20. Lost 3 stone. 7kgs,?
 
Those are reasonable ketone levels. What are your BG levels averaging?
 
Jenny105 said:
Lost 3 stone. 7kgs,?
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That level of weight loss without meaning to really needs looking into Jenny :(

Are you eating lots of fats to try to up your energy intake? 1800kcals perhaps isn't enough for you at the moment?
 
everydayupsanddowns said:
That level of weight loss without meaning to really needs looking into Jenny :(

Are you eating lots of fats to try to up your energy intake? 1800kcals perhaps isn't enough for you at the moment?
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Jenny105 said:
Readings on keto stix are going between 0 and 0.5. I will take reading 2-3 times a day.
And check fingerprick once or twice a day. DN only wants every 2-3 days!!
Im sticking with 1800 cals for men as a base. I'm a lady , only weighing 45kg. need the extra. I havent put on any weight really, since Nov 20. Lost 3 stone. 7kgs,?
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3 stones would be 19kg
7kg would be just over 1 stone
A bit of a discrepancy there.
 
Hi thanks for all the replies. Re fat. I mostly use Benecol and flora pro active for cholesterol control. This is good level. I try to remember to add some to any potato, veg. There's plenty of bacon in the fridge, plus avocado and lentils. I need to remember to use those more. But see below message to @rebrascora and @Inka.
Leadinglights said:
rebrascora said:
You should not be restricting calories as from what I understand you are under weight. As regards carbs, I think that reducing carbs is what has caused such confusion with your diagnosis and whilst it isn't nice to have to push your body to the point of crisis by eating more carbs to get the diagnosis and treatment you need, I think it may be coming to that situation. I am not suggesting you gorge on carbs but eat a "normal, healthy" amount and if your BG levels continue to remain high and your ketone levels increase, then hopefully that will get you started on the treatment you need.

You had an abnormal GAD antibody test which suggests to me that you are most likely Type 1/LADA, especially taking into consideration your slight build and high HbA1c at diagnosis. The C-pep test was likely normal because you had adjusted your diet to try to manage your diabetes and so your beta cells had had a rest and were able to cope a bit better. If you continue to restrict your diet this will, in my opinion, continue to thwart you from being properly diagnosed. So in your situation, knowing what I know now, I would follow a normal healthy diet including carbs and up your calorie intake because you need those calories to stop you losing more weight and monitor BG and ketones when BG is 15 or above and keep putting pressure on your GP practice, but seek A&E help if ketones start increasing above 1. Certainly if they get to 2. There are 50 strips in the pot, so don't be shy of using them when you need the loo and your levels are high.
A trace is fine and normal. Once they go above 1, that is not normal and I would say that if they hit 2, seek help.
Click to expand...

3 stones would be 19kg
7kg would be just over 1 stone
A bit of a discrepancy there.
Click to expand...
3 stone.
 
Hi. Not a brill day yesterday. 4 weeks of dodgy urine control, thirst, hunger despite snacks as described. Yesterday I had to dive to the bushes during dog walk; in the night went twice, didn't quite make it first time. Reading 20.4. Late pm. I Tried a ketostic a.m. It's been 0 pale pink.OR 0.5 slightly darker pink, This am between 0.5 and 1.5, slightly darker pink. I'll ring the help line and get there advice.
 
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