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Discussion in 'Ask A Question' started by KayLS, Mar 26, 2021.
Thank you @KK123 you are so kind. You’ve made me cry, it’s just so nice to speak to someone x
'Not needed' means that your medication does not put you at risk of hypoglycaemia so the GP surgery is not obliged to prescribe one for you. A lot of people fund their own meters as they find the information they provide is useful.
Hi @Darkhorse, I see l, that makes sense.
Ohhh that will be pretty challenging for you to keep on weight. Basically you have to reduced your carbs intake. Like really small quantity and of course avoid at max any form of sugar such as sweet, cakes, milk chocolates, pastries...
You have to fucus on meat and veggies. High fat food is good for us.
But yes you may lose even more kg, this is my case, I keep losing and losing ... people think I have an hiding eating disorder now... I'm underweight as well since I follow a low carb diet.
I don't know what is the solution for us really...
Hi @Elenas, oh dear that does sound worrying. I’ve spent the week eating lots of fish, vegetables and diary so I’ll just have to see how I get on. I’ll buy a pair of weighing scales to keep a check on my weight. I’ve had a very small portion of pasta for dinner a few days this week then fish for a second course. I don’t want to cut carbs out totally as worried I’ll disappear. Hoping the dietician appointment will help me xx
If you don't need to lose weight but want to do low carb then try to eat more fat. Most of us have things like butter on green veg, oil on salads, don't cut the fat off bacon, etc. yet still lose weight if we need to, so then try a little extra? All the things people who count calories or follow the so-called eatwell plate advice avoid are there for us. Plus swap to full fat dairy, Greek yogurt, and full fat milk or nut milk. Cheese is fairly low carb too.
The dietician I saw when diagnosed was very anti low carb and anti full fat milk etc - but I read the research myself (not sure she had) and knew low carb was better for me. Cholesterol tests confounded them as my results improved instead of getting worse.
I was diagnosed T1 (still some insulin production, so more correctly was then LADA) age 51 with a BMI 16.9 (underweight). Your healthcare professionals are not up to date on modern diabetes diagnosis indicators.
Mmmm @oldgreymare that’s the worry. May have to request the test privately at some point?! X
Hi there @TriciaWs, thanks so much for the advice that’s good to know. It’s all very confusing at the moment but it’s good to know there are lots of people out there to help xx
See this link for example for getting a private test - does mean you need to be able to attend their partner private hospitals for the blood draw. This seems quite pricey from what I recall of blood tests privately available in Thailand and Singapore, but that seems to be true of private health testing in the UK generally - still a niche market outside of routine employer sponsored checkups?
If you do go the private route be aware interpretation of the result is not straightforward. This is what my local hospital trust publishes as GP guidance -
A fasting C-peptide of <80 pmol/L or a stimulated C-peptide of <200 pmol/L suggests absolute insulin deficiency.
In insulin-treated diabetic patients, a stimulated C-peptide of <600 pmol/L suggests marked insulin deficiency and type1 DM.
C-peptide values close to thresholds should be interpreted with great caution and may not assist clinical decision.
C-peptide increases and is uninterpretable in renal impairment."
BUT each lab will have their own reference ranges.
I was 35 low bmi classed t2 for age reasons
10 years later my cpeptide test showed 60 pmol/L
So was actually LADA/t1
Trouble is most gp’s instantly assume if you get it at the age of 35+ then it’s type2
Thank you so much for your help @oldgreymare x
This seems to be the experience of so many late onset T1s.
I was just lucky to be initially diagnosed in Singapore where the default process was to put ALL new diabetics under endocrinologist review - I had fairly severe onset symptoms and weight loss (but not DKA) when initially diagnosed, so my endo put me on insulin assuming I just had insulin resistance beta cell burnout - 3 months later and HBAc1 down from 13% to 7%, he ordered c peptide and GAD Ab tests - sadly both came back as indicative as LADA/T1 - which he wasn't expecting, but he was great helping me to move to T1 style management on MDI. Probably I continued as LADA for about 2 more years - now firmly T1 as I have zero endogenous insulin production.
I do hope that GP training catches up with latest understanding of LADA and mature T1 onset sometime soon.
Hi there @KK123,
Just a quick update. I’ve been on the medication for over a month now and feeling much better in myself. I still have moments where I feel quite off but not as often.
I’ve made changes to my diet, reduced carbs and switched any pasta/rice to wholemeal. I only have 1 slice of toast everyday or so and this is homemade/wholemeal/seeded. I’ve even managed to put some weight on, adding skimmed milk powder to full fat milk. I only drank water/tea/milk anyway so no changes there and have never been a fan of sugary or processed foods either.
I’ve signed up the Type2Testing programme and started testing glucose levels (mainly on waking and 2hrs after evening meal), in the morning my levels are 7.1-8.1, after eating between 10-11.1, worried these might be too high but not sure? If so what further changes could I make do you think? Xxx
Your doctor is clueless. T1 also happens in older people but it is more likely to be LADA (slow onset T1) aka Latent Autoimmune Diabetes in Adults. It's slower onset than T1 and can be diagnosed via a cpeptide test (sees how much insulin you are producing) and a GAD test (tests for antibodies that show you are killing your insulin cells.)
Not saying you are necessarily LADA but your GP should do the tests (or refer you to a consultant who can authorise them).
Hi KayLS, thanks for giving us an update. Just so you know, wholemeal pasta/rice etc is pretty much the same as white, it just (supposedly) takes a longer time to reach the peak, I take exactly the same amount of insulin regardless of the colour. I think your levels are still way too high, I really do, especially for someone who is low carbing and otherwise 'active' etc. IF you are type 1/lada and I understand your GP has not done those tests, then no amount of 'lifestyle' change will be enough and you will need insulin. I know you have asked your GP but I would demand more tests are done and if necessary and if you can afford it, I would have them done privately. The only reason I managed to get them done straight after diagnosis was because I kept on and on and on telling them I ran 5 times a week, I was thin, I didn't smoke or drink alcohol and I ate very low carb (after diagnosis, medium carb before that). Even then they sort of said we'll do it as an afterthought and when the results came back there was no doubt it was type 1. I could easily have spent many more months fretting about what lifestyle change I could make and none of it would have made a jot of difference. Can you give us a typical days meals and carb amounts at all?, if you are eating wholemeal/white rice for example, what is your reading before & after? Either way, yes, your levels are too high, have you had a recent hb1ac? xx
Thanks getting back to me, that’s kind of what I was afraid of. I’m not very good at pushing at the doctor’s, you know that the nurse told me there was no need to test and made me feel like a hypochondriac.
My first and only hb1ac test was 69. I’m not due to go back to doctor for another blood test until after 21st June. That’s why I thought it a good suggestion to get a glucose meter. I’m still waiting for the CT scan on pancreas/liver.
It could be I’m still eating too many carbs, below is example of what I typically eat in a day...
Tesco Bran-flakes, blueberries, raspberries with full fat milk
1 x piece of wholemeal toast (if hungry)
Or poached eggs and tomatoes
Piece of chicken with salad & tomatoes
1 x wholemeal pitta with ham/cheese/tuna/egg salad etc
Roast veg salad
Wholemeal pasta/rice dish (dried weight 80g) with homemade sauce/veg/fish
Chicken/Turkey/Fish dish with veg or salad
Full fat Greek yoghurt
I avoid anything sweet/potatoes/fruit other than berries
My husband and I both love cooking so don’t eat anything processed including ready made sauces and so on.
I’ve not tried testing before/after eating so will try that too.
Thanks again for your interest and help xxx
Hi Kay, I'm afraid that that does sound like a fair few carbs. I think people sometimes wonder how can their food be 'bad' for them when it's good quality ingredients and home cooked from scratch, etc. With diabetes though, a slice of wholemeal bread can be as 'bad' glucose wise as a chocolate eclair. An apple can send my levels rocketing in the exact same way a bowl of brown rice will, pasta of any colour?, don't even go there, it sends me higher than a bag of haribo. If you are going to eat pasta/rice/pitta etc then you may as well eat that potato. Please don't think I'm criticising, your current diet is very similar to mine PRIOR to diabetes, now if I do eat those things then I need insulin for it. I wonder whether you could just experiment for a few days with very low carb, ie, cut out the pasta/pitta/rice/toast/cereal (sorry!!) and see what that does to your levels. I do think that is the only way at the moment of determining is it the food sending you high (most likely) or is it type 1 (could be but if I were you I'd want to rule out type 2 first). x
If you think you usually eat healthily then I would suggest a dramatic decrease in the amount of carbs you eat such as bread, rice, pasta and potatoes then see what your next blood test results are like. If you are concerned about weight maybe increase your intake of protein and fat (butter, cheese, fish, meat, eggs, etc).
Thank you @KK123 I will try that and see how I get on. I suppose I was so worried about losing more weight and having no energy, that I wanted to avoid cutting out carbs altogether and naively thought reducing and changing the types of carbs would be ok. It’s not easy this is it?