Looking for some help, advice or anyt... - Diabetes Research...

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Looking for some help, advice or anything please x

MrsCH83 profile image

Hi please strap in for this novel i will try and be as brief as possible.

Diagnosed Type 2 Dec 2020 HB1AC 74mmol - i also have PCOS Diagnosed 2006, NAFLD and Fibromyalgia

Been on Glucophage SR 4 x 500mg per day from 2007 for PCOS after after diagnosis 16.12.20 gp added Gliclazide 80mg HB1AC got higher at 78mmol and continues ro be unstable. I have lost 2st 6lbs on a high protien low carb eating plan doing everything i have been asked.

Last HB1AC done 2 weeks ago 73mmol and im currently on Glucophage SR 4 x 500mg Gliclazide 2 x 160mg Dapalflogozin 1 x 10mg and a weekly injection on Dulaglutide 3mg.

I am honestly at my wits end i have tried everything i cant stay awake im sleeping 15 to 18 hours a day when awake i feel drowsy almost drunk like ive lost my job and its affecting my kids and my marraige

My glucose readings are never below 19 and im literallyy living on beige food

My GP is a nightmare tbh and i havent met anyne at thw diabwtic team juat phonecalls. I feel so lost and honestly so sick of being unwell

Sorry for my rant hopefully someone may have any advice of what i could maybe do now or anything

Thank you for taking the time to read my post xxx

17 Replies

Hi. It would be interesting to know how low carb. you are eating and what you actually do eat please.

MrsCH83 profile image
MrsCH83 in reply to Koalajane

HiThanks for replying to me i will eat mostly eggs, porridge fruit and fat free yoghurt for breakfast. I mostly drink water or noo addded augarr diluting juice and i mostly eat lots of different vegetables and fruit. chicken, pork turkey etc and willl have some wholmeal bread pasta and red meats but these are limited

Koalajane profile image
Koalajane in reply to MrsCH83

Thank you for your reply. From your reply it looks like you eat quite a few carbs, fat free yogurt usually has additives in so full fat is better.porridge has carbs as does a lot of fruit, berries are best.If you check you will see that a lot of above ground veg has carbs in as does pasta.

I hope you can have a proper conversation with your nurse or doctor as I would say you need to have a lot more help to sort this out. Good luck to you. Are you able to exercise, even walking helps bring my sugars down. I think if you get nowhere with your practice nurse you should ask to see a diabetic consultant

MrsCH83 profile image
MrsCH83 in reply to Koalajane

Thank you yeah there is some carbs but very limited i used Dr unwins factsheets and stuff he is the low carb GP he was suggested by my own gp a while back so i follow most things off the sheets etc i do have a treat now and again but very limited. Yeah i have called back after my app with diabetic nurse today as it lasted less that 4 minutes on the phone and i came off really upset and frustrated so i have asked to speak to a senior or the consultant

Thanks for your help very much appreciated x

I am not medically qualified. I am concerned however that your clinic/gp is not more concerned by your very high glucose and Hba1c results. Do you have a diabetic nurse (ours left has not been replaced so it’s everyone for themselves)? A few years ago when I was on high doses as you seem to be, I was warned that the next step would be insulin injections. It never came to that as I turned my diet and lifestyle around, but is that sludge you’re eating your only source of calories?

MrsCH83 profile image
MrsCH83 in reply to HeavyFoot

Hi yeh i am also very concerned in regard to these i have also had urinalysis done and they said i had large amounts of protein leaking feom my kidneya and was to be put on ace inhibitors to protect my kidneys. Yes have a diabetic nurse had a teleph9ne app today it kasted 3 minutes and 56 secs to up my dulaglutide to 4.5mg and i asked about the sleepiness and other things but i was rushed off the phone told to keep my glucose recordings morn and tea time and call them on monday even though i have kept 9 weeks worth as requested from last app and told her highest recording was 29.6 lowest 18.2 and still no further forward. I have came off tye call really upset and just feel like ive had enough. I have lost weight changed my diet take my meds i dint know what else i can do

Thanka for your reply x

What dietary changes did you make please?

Medications that rely on further insulin stimulation can only be a short term sticking plaster, because high insulin levels cause insulin-resistance that is hazardous to health in itself.

Massive changes to my diet no more sugar free fizzy juices as advised i minimised carbs and try to stick to a high protein low carb low fat i looked into Dr Unwin the low carb gp as suggested by my gp and downloaded factsheets from him to help i have lost around 2st 6lbs from 23rd Dec 2020 bmi also reduced from category obese to overweight. I have been on these high doses from 22nd June 21 and they have said today they are moving my dulaglutide from 3mg to highest dose of 4.5mg my app today was telephone app with my diabetic nurse it lasted under 4 minutes i was rushed off the phone and i am honestly just feeling more frustrated and upset after today i dont know where else i can get information i am considering paying private to see a specialist in Endocrinology and Diabetes

Thank you for your reply. x

God bless you.

Thank you im only 37 years old have 4 type 1 diabetics in my family though but ive worked ao hard studied for 6 years and had the j9b of my dreams lost everything as my health has become so poor i just hope 9ne day soon i can be stable and get my life back

Thanks for your kind words xx

My GPs advice was “reduce carbs” and that was the only input offered.

So I read up & learnt what works best to suit me.

Reduce / limit / avoid

Dairy Milk, yogurt, and ice cream

Whole fruit and fruit juice (berries are better)

Grains, Bread, rice, crackers, and cereal (I sometimes have oats no sugar type)

Legumes Beans and other plant-based proteins

Starchy Vegetables, Potatoes and corn (plenty of alternatives)

Sugary Sweets - Avoid these!

NO Soda, candy, cookies, desserts

This is what I would do

Make sure I had 1-2 portions of Milk or yogurt each day,

berries are better than other whole fruit, (NO juice!)

2x a week small amount of oats but minimal, Bread, rice, or cereal.

Low amount of Legumes Beans and other plant-based proteins

Lots of salad & Vegetables, but no Potatoes or corn

1 small piece of chocolate most days as treat but no cakes biscuits & desserts

Small portion or nuts every day, eg 3 Brazil’s or 5 almonds.

Might be harder on a vegetarian diet as have a fair amount of meat, fish and an egg most days.

I used an app to track & count up all my carbs, (MyFitnessPal) doing that really gets you to understand where you are consuming carb & getting carbs you weren’t aware of.

Most apps will calculate a calorie count based on current weight / height and weight loss aim, but the minimum calories is 1000. I did around 1200 per day & 80 grams of carb of day. Which is moderately low rather than Keto type low. I eat more carbs.

As I had to get used to using app and what foods were best the dietary changes were gradual at first.

Raising activity levels is pretty key too. I now walk lots more than before.

Have you had other tests? Do you have your previous record of results? Nutrients such as folate, ferritin B12 & vitamin D. PCOS, NAFLD & high blood sugars, sometimes appear with and exacerbate by thyroid issues as Fibromyalgia related. Has your thyroid been checked? Doctors don’t often obtain a full thyroid function and don’t often check vitamin D so worth checking what has been tested.

MrsCH83 profile image
MrsCH83 in reply to PurpleNails

Thanks so much i will have a look at that app and what you have suggested.

There is a lot going on just now i was diagnosed woth pernicious anaemia in 2008 on 8 weekly b12 injections then they atopped my injections because of medication contraindications and saidmy b12 was normal but it obciosly would be as i was having the injections been fighting with them about this last bloods b12 was literally like 151 and the lowest mormal is like 150 but syltill nothing my creatinine and acr were higher than normal thyroid normal only other abnormality was MCV of red blood cells higher than normal which means the red blood cells are larger than they should be i have asked about this still awaiting any information tbh but my gp and hospital service up here is awful ar best of time but die to covid it has gotten even worse

I was told in sept after 5 telephone consultations the pain i was experiencing was not from my kidneys and i was to re-educate myself on fibromyalgia and the pain it causes last app monday 4.45pm rushed to hosp 5am on the tuesday had bactereamia and sepsis was ill in hosp 21 days so they dont listen ive put complaints in its absolutely fed up woth the lot try8ng to save money to go private i feel may get better care and answers

Thank you for your advice and reply xxx

PurpleNails profile image
PurpleNails in reply to MrsCH83

You have a lot going on.

Are you in UK?

Never accept a verbal “Normal” from doctor. You need a printed copy of your results with lab ranges.

MrsCH83 profile image
MrsCH83 in reply to PurpleNails

Yeah far too much and im very intune with my body thats why im so frustrated cause i feel so unwell and jist because my hb1ac is down 2 then everythings great its tereible

Yeah im in scotland sometimes i feel like im fighting a losing battle thats why going private prob b athe most sensible solution i think

Thanka for your reply xxxx

PurpleNails profile image
PurpleNails in reply to MrsCH83

I can recommend UK private testing companies (there are several) which offer sets of blood tests eg full thyroid & nutrients (or others sets, if you know what you want tested). This likely to work out less expensive than seeing a private doctor who may not be any more helpful than NHS doctor & will charge more to arrange the testing.

You can use the results to advocate for yourself and be prepared with the information if you do eventually need to see a private doctor. Some GPs accept private results, they can decide to trust & accept the results but some refute them, in which case you have strong argument for them to repeat them.

The samples can be taken via fingerprick & sent via post. Send samples beginning of week to avoid post delays near weekend.

Here is one example

medichecks.com/products/adv...

This package has 10 bio markers cost £79.00. Company sometimes has discounts on a Thursday.

These are other companies, again offering a variety of tests not just thyroid.

thyroiduk.org/help-and-supp...

MrsCH83 profile image
MrsCH83 in reply to PurpleNails

Thanks PurpleNails thats excellentbinwill drifnitley look into this im definitely going to have to e further advocating for myself sometimes the louder u shoyt thenfurther u getbwhich isba sorrybstate of affairs but if i have t9 challenge them i will thanks again for your advice and links very appreciated xxx

Totally agree. For B12 there is a 'grey area' below 290, and those with a track record of being low should aim for 400, from the book "Is it B12?"

Normal fasting blood glucose is between 4 and 5.2. HbA1c is below 40.

What's normal is for health professionals to think slightly higher is okay because you have diabetes, but that is compromising health. Don't forget, until relatively recently people with diabetes have always been expected to progressively worsen, because the Eatwell Guide and its predecessors are the gold standard, and carbohydrate control vilified.

Again, those normal blood glucose ranges need to be achieved with normal insulin levels, by regulating all carbohydrate intake, otherwise high insulin levels will also jeopardise health.

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