Hi. Was told my result was highly positive at 1700. Was told have to wait to see endocrinologist. Around 6 weeks. Said he can’t speed it up unless I pay privately.
HBA1C up from 38 - 54 in 9 months
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ert
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I was given a specialist appointment for 3 months time, even though I told my GP I was deteriorating. Luckily I was monitoring my blood sugars and blood ketones. A few days later, after walking into A&E, where they started me on insulin to normalise my ketones and blood sugars I was given a specialist appointment the following morning.
Ask for a blood ketone meter and test for blood ketones if your blood sugars stay above 13 mmol/l for an extended period of time.
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I wish they would give me an appointment before Christmas. Were your blood sugars constantly at 13 plus post meal then. I had 12.7 after breakfast today, but 6.7 after lunch. I’ll ask about ketones. Is that a urine test kit? I only have the blood sugar test kit. Did you feel ill when you went into A and E. I am guessing I can’t just do this to speed up the process. Crazy you just get left with high blood sugars you can do nothing about. Thanks for your advice.
I did have it when I was 34 weeks pregnant and on insulin. I caught a vomiting bug off my 12 month old baby and had no idea what would follow. Was in hospital for a week! Can’t remember symptoms. Felt like I was going to die and was worried about the baby.
ert
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You should ask for a ketone meter. It looks similar to a blood test meter and has strips that you place finger prick of blood on. Yes, you feel terribly unwell with high sugars and high ketones.
Oh ok. I will ask. Thank you for your advice. I will ask. Are they likely to give me one? Did you say if result is over 3 it is a problem? I didn’t realise a bloods test. Thought it was a urine one.
. I know it’s better to know, but fed up now. Tried so hard with The LCHF. Got used to that approach now. Can that be continued when you’re put on insulin? I am glad I know nearly a year on though.
ert
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I've stayed with LCHF as I've always eaten that way. It's not recommended at all by the health care professionals for type 1's (only by American Dr Bernstein.) The dangers are ketones and hypos. You have to be constantly aware of your blood ketones. You have to dose for everything you eat, even protein, the law of small numbers, and not just for carbs to stop ketones building-up. You have to make sure you're not hypoing on insulin because you're closer to the 3.9 mmol/l normal blood sugars cut-off. Stay safe.
I have eaten this way for last year and it works for weight loss. I’ll have to read Bernstein. Is 50g carb ok. Or still at risk of hypos on insulin. Seems a shame to ditch this approach, but difficult if health care professionals don’t advise it.
Hi Millie
How are you ? have you got an appointment before Christmas? Are you on insulin yet? Hope things are going well for you.
I am reading Dr Bernstein at the moment, it's very interesting and I can relate to a lot of issues he writes about. I have had type 1 LADA since June 2018. I also eat low carb although not zero carb (as I have hypothyroidism and this causes problems as I found out!) I definitely felt better once on insulin. In fact I realised I had been feeling worse than I thought beforehand, I had just got used to feeling ill!
Hi,
Thanks for asking.
I haven’t got an appointment yet. The first appointment available with an endocrinologist is 12th March. The endocrinologist asked the hospital diabetes team to call me. I told her what my numbers were like and that my hba1c was 45 mmol at the beginning of December and she said I don’t need insulin yet. My numbers are erratic. At the moment they are between 6 and 7.5 fasting. They are generally good when I low carb, but yesterday went out for a festive meal. I didn’t eat the positive, but reading was still 12.3 nearly 3 hours post meal. Christmas will be a challenge. I tried fasting in morning, but it stays around 7. I can’t really do anything until I see the endocrinologist in March.
On another note, I have gained a few pounds since coming off the pill. I had PCOS in the past/ pre children and wonder if those hormones have kicked back in.
Glad you are doing well. Is the endocrinologist likely to test other things like thyroid? What level of carb intake do you have with the insulin?
Thanks for asking.
I haven’t got an appointment yet. The first appointment available with an endocrinologist is 12th March. The endocrinologist asked the hospital diabetes team to call me. I told her what my numbers were like and that my hba1c was 45 mmol at the beginning of December and she said I don’t need insulin yet. My numbers are erratic. At the moment they are between 6 and 7.5 fasting. They are generally good when I low carb, but yesterday went out for a festive meal. I didn’t eat the positive, but reading was still 12.3 nearly 3 hours post meal. Christmas will be a challenge. I tried fasting in morning, but it stays around 7. I can’t really do anything until I see the endocrinologist in March.
On another note, I have gained a few pounds since coming off the pill. I had PCOS in the past/ pre children and wonder if those hormones have kicked back in.
Glad you are doing well. Is the endocrinologist likely to test other things like thyroid? What level of carb intake do you have with the insulin?
as an update to this original question:
Today I was seen by the Specialist. Now fully on Insulin given the sudden and dramatic rise in my readings over the last few weeks, My HBA1C jumped from the 54 noted above in October to 74 in early December. to them it was a no brainer.
now I have to get to grips with a new regimen, medication, diet . Happy Christmas to me (nearly as good as my 50th birthday which was my original diagnosis just about 3 years back!)
Hi Millie
Gosh that is a long wait! There is quite a bit of discussion about when to start insulin as one theory is that the sooner you start the more beta cells you preserve, I would do a bit of research at least so you know the right questions to ask in March. Monitor yourself carefully especially if you are ill or eat something higher carb than normal. I have had Hashimotos disease for about 6 years now, it's an autoimmune disease the same as Type 1 LADA diabetes so I was already being tested regularly for TSH levels although I was having a lot of trouble. The endo I saw told me metabolism is controlled by a fine balance of cortisol, thyroxine and insulin all needing to be at the correct levels. Mine were definitely not correct in June 2018 but he did really help me with both problems and all my Hashimotos symptoms have now gone and I lost weight (2 stone in 2 months) after changing the timing of my thyroid tablet and starting insulin (I had previously been slim but put on weight when developing Hashimotos and struggled to lose it despite eating zero carbs and exercising daily for a couple of years). Now I usually eat between 20g - max 40g carbs per meal. Eating zero carbs will worsen a thyroid problem as you will produce reverse T3. Occasionally I will have lower carbs such as omelette and salad if I am struggling with blood sugars but it's occasional. Although for me I just cannot eat anything containing flour or rice or any bread other than pure rye bread, I did try a couple of times but even with taking insulin I get very high readings very quickly of around 16mmol or more plus blurry vision, pounding headache and I feel extremely unwell. As I hadn't eaten these foods for a couple of years anyway due to the Hashimotos I was quite happy to cut them out although the nurse I see does comment about eating more of a balanced diet, but Dr Bernstein's book seems to say the same thing about certain carbs so I think I am doing the right thing, although I haven't finished the book yet! I do eat very healthily and exercise daily, I find a resistance band excellent for lowering high blood sugar readings. The carbs I do eat are things like Nairns gluten free crackers and kefir yogurt, occasional porridge with goats milk or slice of rye bread with poached egg. I don't get more than a reading of 10mmol after these foods. I have continued to lose weight slowly and am now slimmer than before I developed Hashimotos and diabetes so that's a good thing. Happy to chat further if you are unsure what to eat, but everyone is different I think it's a case of trial and error and recording what happens. But obviously small amounts when trying something different and tread carefully. By the way your doctor could test your thyroid TSH and any possible TPO antibodies it's just a blood test.
Hi I was also diagnosed just after my 50th birthday! I have also had a dramatic rise a few months ago despite no diet or exercise change and am on 5 injections a day now. 2 Levemir and 3 Novorapid. Initially I still had problems but what finally really worked was switching from 5mm needles to 6mm needles. I think beforehand the insulin just wasn't hitting the right spot. I am also off Metformin SR (this definitely made me feel better)
I actually feel much better now than I did 6 months ago (apart from the terrible cold I have this week!) so this might actually help you eliminate the tiredness and general feeling very low and run down. I exercise daily, insist they get they get the insulin right so you can too. Hope you improve soon.
Wow. 2 stone in 2 months is fantastic. Interesting how so many factors affect metabolism. I lost nearly 2 stone after the low carbing following the 96mmol hba1c and diagnosis in January. I only have about 800 cal a day and 20-40g carbs a day. I think I’ll wait for the March appointment before any more blood tests as find it all a bit overwhelming and stressful. I didn’t know about potential other autoimmune diseases. I didn’t even know what Hashimotos was. I have been stuck on weight loss for a while. Was 9st 10. Gone back up to 10st and don’t know why. Only change is coming off the pill. Will be good to see a specialist and get some help. Sounds like you have been very well supported. Good to know you haven’t gained weight with insulin. That would be a pain having lost loads.
I teach dance and also fitness. I do a lot of resistance bands. My bs normally 5.3 ish when get home after 2-3 teaching hours. I only get bad readings when I eat any carbs, above ten. I have ditched porridge and bran flakes. I just have low carb livlife bread and eggs or egg muffins. I can’t understand why I’m not about 8 stone!
Thanks for your support. Everyone gets fed up if I discuss it at home.
I teach dance and also fitness. I do a lot of resistance bands. My bs normally 5.3 ish when get home after 2-3 teaching hours. I only get bad readings when I eat any carbs, above ten. I have ditched porridge and bran flakes. I just have low carb livlife bread and eggs or egg muffins. I can’t understand why I’m not about 8 stone!
Thanks for your support. Everyone gets fed up if I discuss it at home.
Hi Millie
I know what you mean, my parents are very worried but don't really understand the complexity of it all and my husband gets fed up with it! My eldest son doesn't ask and hates even seeing me finger prick but my youngest (15) is actually helpful. I didn't get the right medical support at the beginning it was only when I collapsed with early stages of ketoacidocis after I became ill that I was then rushed through to see the right people and my doctor was reported by the hospital for lack of care. It was a terrible experience. I have left that doctor now. That why I say monitor yourself often and be careful. I was doing the same as you for about 3 years 800 calories a day and about 20g carbs to try and lose weight and improve the Hashimotos but I think this took its toll on me, good initially but I carried it on for way too long and it just wasn't working anyway for me for at least the last year. I will look up for you how many carbs you need a day so as not to cause yourself a thyroid problem. I now eat between 1000-1200 calories a day and about 80-100g carbs per day and I am a stone lighter than before I developed either Hashimotos or LADA diabetes. I was really worried about putting on weight if I took insulin but I think it gives me the energy to carry on and exercise and I feel much better on it and have lost weight. It sounds like you are doing similar to me so I wouldn't worry. Nice to chat to someone with the same thing who is dealing with it in a similar way. Take care over Christmas, hope you have a lovely time, don't worry if you can't eat all the food better to be healthy.
I looked it up less than 20g carbs per day will cause your body to produce reverse T3, this is terrible for your thyroid, metabolism and putting on weight. 20g-49g carbs per day is much better if trying to lose weight and should keep your metabolism going. To maintain weight 50-99g carbs per day recommended. It must be net carbs so minus the fibre content from the total carbs of any food. Not doing this was my mistake I already had a thyroid problem and I think made it worse. I wish I had realised earlier! There is a good book that explains the science and interactions of the different hormones, cortisol, leptin, estrogen, thyroxine, insulin etc and does an elimination diet to see what effects you called 'The hormone reset diet' by Sara Gottfried. MD I got if off amazon about a year ago. A friend who has type 2 diabetes and lost 1.5 stone following it recommended it to me. It's extremely interesting.
