Why can I not get my HBA1C down?

[MillieT]

Hi, please excuse the length of this!
I am starting to lose all faith in everything, I changed my diet and am pretty much carb free, no bread, pots anything really, I even changed to lactose free milk and dairy and yet it is not happening for me, nothing has been the same since I was in hospital last December with Hba1c level of 107 mmol. Before that I was ranging between 45-65 and just one was at 100mmol in May 2013- I guess that was from making jam? but after then i managed through diet alone and had really good readings.

However, December was caused by me packing up smoking and taking the champix, I could not cough up the phlegm and out of despair i took to sucking mentholyptus sweets which got it up, trouble is it snowballed and i became use to having high readings for those 6 weeks.

Since December I have been tested 3 times and my Hba1c's are 71mmol / Feb 18/ 73mmol Jul18 and 25 Sept 74mmol.

This year seems to be a life changer and has become the worst by far for my health. Ok, I have recently been diagnosed with NH Lymphoma and am starting treatment in a weeks time, half an hour a day for 5 days for 3 weeks and then they say I should be clear.

I also have Pyorrhea due to packing up smoking and have an appointment at the hospital on the 30th but have been told I cannot have anything removed due to it may affect the shape of my mask...so I have to bear with this for a while longer.

And as I have said before, terrible anxiety...is it any wonder?

My Cholesterol has just come back as - and i cannot really read any of this, but
Serum Cholesterol = 7.9 mmol <5 20 mmol/1
Serum triglycerides 5 mmol 0.80-2.30mmol/1
Serum hdl cholesterol 1.1 mmol 0.90-1.60mmol/1
Serum non hdl cholesterol 6.8 mmol

If you can make heads or tails out of it please be my guest, also if anyone has any hints to help it would be appreciated, I am now on Kwikpen Humulin N green 10 in the morning for like 3 months or so and it does not seem to be touching me, my waking results are usually around 13.mmol though I was on a naughty yesterday and had organic roast chicken with green veg, and i broke my carb rule and had some butter beans and i woke up on 15.2 mmol...I feel like death warmed up too! So shall not be doing that again!

Anyone here please because and no disrespect, the NHS diabetic nutritionist is a dead loss imho as says I am ok to have porridge in the mornings but that usually takes me to around 28/30mmol and she has said it is ok for it to spike you but shall not harm you... I am not going back and refuse to eat the stuff. If they do not help correct me soon I shall be dead before I am mid 50's..or this is how I feel...

 

[Resurgam]

You are right to avoid anyone who says that a BG level of up to 30mmol/l will not harm you - I should mention that to your doctor - for me a spike is anything over 9mmol/l.
I too find that peas and beans seem to cause rises above the expected from their carb count - so I avoid them.
If you ever need eucalyptus again then using the oil and hot water to make a steam and vapour inhaler can be really effective - I once made one for someone with a sinus infection and that was really spectacularly successful. She emerged from under the towel like something from a horror film.
I suspect that lactose free milk is not any lower in carb than ordinary milk, it has just had an enzyme added to break down the lactose to other sugars.
With all that you have going on I suspect that your metabolism would be struggling even without the diabetes. Don't give up - stick to low carb foods and things ought to come rubber side down eventually

 

[MillieT]

I appreciate that, Thank you, 28mmol makes me feel unwell!

It was a friend that has type 1 that said to change the milk over, he said it has an effect and i did not realise though i only have it in tea or coffee and have them very dark anyhow, it is only the coffee i can drink black and I have to fancy that, i do not drink anything else except spring water and lots of it over a day.

The menthol was merely and thing I had last November, I have not had it since though the coughing and spluttering is down to a minimum now which I am pretty glad about, they did say it takes about a year.... though they did not say it would be utter hell.

This afternoon when I got home I checked and I was an amazing 8mmol (first time i have seen 8 in 2-3 months) though I was really bad because when I saw my levels this morning I upped my dosage to 14 and it seems to have worked a bit though I have not had anything to eat since, I get to the point where I can't be bothered. I would have never believed that a dessert spoon of butter beans could raise me so high but was only using them up so I am safe now, back to my broccoli and cauli.

 

[feniangirl]

I appreciate that, Thank you, 28mmol makes me feel unwell!

It was a friend that has type 1 that said to change the milk over, he said it has an effect and i did not realise though i only have it in tea or coffee and have them very dark anyhow, it is only the coffee i can drink black and I have to fancy that, i do not drink anything else except spring water and lots of it over a day.

The menthol was merely and thing I had last November, I have not had it since though the coughing and spluttering is down to a minimum now which I am pretty glad about, they did say it takes about a year.... though they did not say it would be utter hell.

This afternoon when I got home I checked and I was an amazing 8mmol (first time i have seen 8 in 2-3 months) though I was really bad because when I saw my levels this morning I upped my dosage to 14 and it seems to have worked a bit though I have not had anything to eat since, I get to the point where I can't be bothered. I would have never believed that a dessert spoon of butter beans could raise me so high but was only using them up so I am safe now, back to my broccoli and cauli.

Just a suggestion, you should try using double cream instead of any type of milk in your coffee and tea. No carbs and it tastes ever so much better. Also almond milk is something else to consider, it has 1g per serving. Now you have me wanting a nice bowl of warm butter beans - ummm. But alas, I shall have my olives and be satisfied.
I wish you the best of luck. Keep believing you can do this, because you can!

 

[Debandez]

Hi, please excuse the length of this!
I am starting to lose all faith in everything, I changed my diet and am pretty much carb free, no bread, pots anything really, I even changed to lactose free milk and dairy and yet it is not happening for me, nothing has been the same since I was in hospital last December with Hba1c level of 107 mmol. Before that I was ranging between 45-65 and just one was at 100mmol in May 2013- I guess that was from making jam? but after then i managed through diet alone and had really good readings.

However, December was caused by me packing up smoking and taking the champix, I could not cough up the phlegm and out of despair i took to sucking mentholyptus sweets which got it up, trouble is it snowballed and i became use to having high readings for those 6 weeks.

Since December I have been tested 3 times and my Hba1c's are 71mmol / Feb 18/ 73mmol Jul18 and 25 Sept 74mmol.

This year seems to be a life changer and has become the worst by far for my health. Ok, I have recently been diagnosed with NH Lymphoma and am starting treatment in a weeks time, half an hour a day for 5 days for 3 weeks and then they say I should be clear.

I also have Pyorrhea due to packing up smoking and have an appointment at the hospital on the 30th but have been told I cannot have anything removed due to it may affect the shape of my mask...so I have to bear with this for a while longer.

And as I have said before, terrible anxiety...is it any wonder?

My Cholesterol has just come back as - and i cannot really read any of this, but
Serum Cholesterol = 7.9 mmol <5 20 mmol/1
Serum triglycerides 5 mmol 0.80-2.30mmol/1
Serum hdl cholesterol 1.1 mmol 0.90-1.60mmol/1
Serum non hdl cholesterol 6.8 mmol

If you can make heads or tails out of it please be my guest, also if anyone has any hints to help it would be appreciated, I am now on Kwikpen Humulin N green 10 in the morning for like 3 months or so and it does not seem to be touching me, my waking results are usually around 13.mmol though I was on a naughty yesterday and had organic roast chicken with green veg, and i broke my carb rule and had some butter beans and i woke up on 15.2 mmol...I feel like death warmed up too! So shall not be doing that again!

Anyone here please because and no disrespect, the NHS diabetic nutritionist is a dead loss imho as says I am ok to have porridge in the mornings but that usually takes me to around 28/30mmol and she has said it is ok for it to spike you but shall not harm you... I am not going back and refuse to eat the stuff. If they do not help correct me soon I shall be dead before I am mid 50's..or this is how I feel...

@bulkbiker @Bluetit1802 @shelley262 are extremely knowledgable on cholestrol and may be able to offer some guidance here.

May I ask what you would eat in a typical day?

Keep your chin up, I am positive things will get better.

 

[MillieT]

Does anybody know, could having Lymphoma affect my bloods and such? I read somewhere that the Pyorrhea can and I am finding it so upsetting that they are taking so long to help me with it, the gp shall not help because it is dental, my local dentist leaves a lot to be desired and has not helped so i am waiting to see the NHS dentist, i think it is disgusting that i am left like this not only having anxiety but also

Just a suggestion, you should try using double cream instead of any type of milk in your coffee and tea. No carbs and it tastes ever so much better. Also almond milk is something else to consider, it has 1g per serving. Now you have me wanting a nice bowl of warm butter beans - ummm. But alas, I shall have my olives and be satisfied.
I wish you the best of luck. Keep believing you can do this, because you can!

Hi, my only thoughts on this is that the two milks when compared side by side are negligible and these are calculated at 100ml, now considering I have maybe 4 mugs in a day and like i said I do have both coffee and tea dark, 100ml is quite a lot, I would not think I use 50ml in an entire day.

Alpro Almond Milk : https://www.alpro.com/uk/products/drinks/almond/original-fresh
Arla Lactose Free : https://www.arlafoods.co.uk/brands/arla-lactofree-semi-skimmed-milk-drink-1l-560/

 

[MillieT]

@bulkbiker @Bluetit1802 @shelley262 are extremely knowledgable on cholestrol and may be able to offer some guidance here.

May I ask what you would eat in a typical day?

Keep your chin up, I am positive things will get better.

Yesterday my breakfast was as I said above somewhere, I did not have any lunch as such but snacked on some nuts and for dinner was a low carb keto cauli cheese, my sugars this morning 12.5mmol

I usually have the hard boiled eggs, tomatoes and olives, or may change to sardines in brine with eggs for breakfast, dinners, I had a roast chicken the other day but this is a rarity, i usually have chicken breast or fish which is my main diet- fish and broccoli, other veg, spring greens, cabbage or brussels. I have mashed up eggs and added low sugar/fat salad cream but only a very tiny amount.

If I snack it is usually nuts- almonds or pork scratchings though i only eat them for the sake of it, i do not really like any of them.

Occasionally I have a chicken shish kebab with no pitta, just the chicken breast and salad/veg as feels like a treat, i may have their special which has onions and mushrooms with it... I eat quite a lot of mushrooms and make home made soup with them.

 

[Brunneria]

Hi @miffli

If you are very low carbing, and your blood glucose is still high, then you need a medication review.
I see you are already on one insulin.
Maybe it is time for another, better training on carb counting, better support generally...

I can’t comment on the impact of your other health issues, or any other medications, but it is clear that you need some expert advice from someone who is used to complex cases.

Saying that it is OK to spike to 30 after food is irresponsible. You need a rapid referral to you local diabetes clinic. Go and bother them until they refer you!

Has anyone ever checked to see if you are LADA?

 

[Debandez]

Yesterday my breakfast was as I said above somewhere, I did not have any lunch as such but snacked on some nuts and for dinner was a low carb keto cauli cheese, my sugars this morning 12.5mmol

I usually have the hard boiled eggs, tomatoes and olives, or may change to sardines in brine with eggs for breakfast, dinners, I had a roast chicken the other day but this is a rarity, i usually have chicken breast or fish which is my main diet- fish and broccoli, other veg, spring greens, cabbage or brussels. I have mashed up eggs and added low sugar/fat salad cream but only a very tiny amount.

If I snack it is usually nuts- almonds or pork scratchings though i only eat them for the sake of it, i do not really like any of them.

Occasionally I have a chicken shish kebab with no pitta, just the chicken breast and salad/veg as feels like a treat, i may have their special which has onions and mushrooms with it... I eat quite a lot of mushrooms and make home made soup with them.

You are making good choices. I think @Brunneria has offered excellent advice. It's a very frustrating time for you especially when you are trying so hard with your food choices. I hope you get answers soon.

 

[Engineer88]

Any infection will put your bgs up but I agree with the others you need referring to the diabetic clinic at the hospital and checking for LADA.

I would keep your insulin a bit higher if its helping also as long as you don't start having hypos you should be ok. Do you have free access to testing?

 

[bulkbiker]

I suspect that lactose free milk is not any lower in carb than ordinary milk

It's just under half to be fair... that's why I have it in my tea 2.8g of carb per 100ml as opposed to 4.8g in whole milk.

 

[bulkbiker]

double cream instead of any type of milk in your coffee and tea. No carbs and it tastes ever so much better

Not quite I'm afraid.. double cream has 2.6g of carb per 100ml lactofree milk 2.8g per 100 ml.
Of course you use less cream so it has less impact but not quite "carb free".

 

[bulkbiker]

@bulkbiker @Bluetit1802 @shelley262 are extremely knowledgable on cholestrol and may be able to offer some guidance here.

May I ask what you would eat in a typical day?

Keep your chin up, I am positive things will get better.

Hi @miffli
I think at the moment cholesterol is the very least of your worries and with the things currently going on in your body I would guess that your figures are completely out of whack anyway. As @Brunneria has said I would suggest getting your diabetes team to take a look at you again and see if you can get some more tests to check out your diagnosis.

 

[MillieT]

Hi @miffli

If you are very low carbing, and your blood glucose is still high, then you need a medication review.
I see you are already on one insulin.
Maybe it is time for another, better training on carb counting, better support generally...

I can’t comment on the impact of your other health issues, or any other medications, but it is clear that you need some expert advice from someone who is used to complex cases.

Saying that it is OK to spike to 30 after food is irresponsible. You need a rapid referral to you local diabetes clinic. Go and bother them until they refer you!

Has anyone ever checked to see if you are LADA?

I have to be honest in that I have mentioned this forum to my 'diabetic specialist' she comes in once a month from the hospital I think and sits with the practice diabetic nurse and tells me what is what, last time I had forgot my results machine /caresens pop only they had messed me about for getting a HBA1C test and I became quite confused. I told her my average which last month were approx 11.3mmol but she said without actually seeing the machine in front of her she could not recommend a change in insulin- I suppose she is covering herself, however, she asked if I had access to email and if I could send her those results which I did and have been completely ignored, no confirmation that she has even received them.

Now I mentioned this actual forum to both of them and said about LADA and the zero carb stuff and they laughed that the zero carb is utter rubbish and that if I do not have carbs it shall make me ill, also they advised they do not recognise this forum and that not to take too much notice of what many of you are saying. She is right and you are wrong.....?

They have said they only recognised the diabetes.org site- I have said this before here but with no disrespect, I am not really getting anywhere with any of these NHS supposed specialists, in fact I feel dreadful pretty much all of the time, the last visit to the diabetic nutritional specialist was actually training someone in front of me that day and had a terrible attitude over porridge and such.

They are all seemingly treating me as a difficult patient that shall not do as she is told and is bound to have a bad time because of it and like one quoted, the carbs do not affect me because I am on metformin and gliclizide and I am ok.. well @@@ you I thought.. she still does not realise that we all suffer from it differently, or it just to ..... ignorant.

I have told my gp that if things are not sorted soon I am going to start suing people for medical negligence and I have never thought of such things in my life before but I am not far away from snapping because they are all blaming me for how my diabetes is affecting me...i could so scream

Thank you, I really appreciate everyones advice and moral support here but I am honestly feeling like i am banging my head against a brick wall.

 

[johnme]

I’m not an expert by anyone’s lights but if you want to get you bs down and keep it down you need very low carb - 20g a day or less. My bs was at 20 mmol on 1/9 when I was admitted to hospital with a pulmonary embolism. Id believed I had bronchitis and had been treating it with honey & lemon etc. A young diabetic nurse told me I had to take metformin and I said no thanks. I haven’t eaten significant carbs from that day to this. My bs hovers between 7-8 and drops to six with a small amount of exercise. No drugs except anticoagulants, but that’s another story. Treat the carbs carefully, don’t snack and it will fall. Good luck!

 

[johnme]

Ps im sure I’m thought of as a difficult patient. But remember medics’ advice is just that -advice. You’re not a prisoner.

 

[Engineer88]

Ps im sure I’m thought of as a difficult patient. But remember medics’ advice is just that -advice. You’re not a prisoner.

Did you read the OP's food choices? I would be very surprized if she is reaching 20g a day on her given intake even with the beans.

 

[johnme]

Did you read the OP's food choices? I would be very surprized if she is reaching 20g a day on her given intake even with the beans.

I agree but our blood sugar can only come from a couple of sources. If it really isn’t food she needs more sophisticated help than she is receiving - hence my comment about making yourself a difficult patient.

 

[Zilsniggy]

Does anybody know, could having Lymphoma affect my bloods and such? I read somewhere that the Pyorrhea can

Any form of illness WILL adversely affect your blood sugar readings. The best you can do is stick to eating a low carb diet. It takes some time, but numbers eventually even out. If you continue to eat carbs, though, you will probably have these spikes. Do you test the form of carb you eat to see how it spikes your sugars? That's how most of us learn what to avoid.

Also, I would press for more assistance in calculating your insulin doses, you need more help than you seem to be getting.
It may be that they need to add other meds to what you already are taking, or further testing to make sure that you ARE T2.

Stranger things have happened, and folks are often diagnosed T2 when T1.5 or 1, even.

Are you on any other medications which might account for higher blood sugars? Steroids spring to mind.

 

[MillieT]

I do not think I have been advised how everything works, example, this morning I was up at 5.45 am, checked my bloods at 6.am and was 11.4 mmol, i had one strong cup of tea, that is where you show it the carton and put in barely any milk- lactose free of course, I took my jab 14 units at 7am and at 9.10 am checked them again only I had a funny feeling and was 11.6mmol.. I understand that the insulin I am taking is slow acting/release but I thought it gave you and immediate boost and then slowly released for something like 4 hours or so?

Anyway, I just thought I would share that, i feel like i have not eaten for a week and have like hunger shakes or feel jittery, going to have my HB eggs and such shortly but I can only go up higher- i do not like eating when i am high.