HBA1C came in at 80 :( Please help with advice

[Melwest]

I have no idea what I am doing wrong, if I must eat bread it is the low carb stuff or soya and linseed, if it is potato then 2-3 pieces- not whole potatoes, rice, a tablespoon. I am currently not taking any medication because I was told to stop it for monitoring.

I was in hospital last December with Ketacidosis so was poorly, I have been on Metformin and Gliclazide before but it gave me horrendous tummy aches hence stopping, they have said they were contemplating putting me on insulin.

Went on another Diabetic site which promotes the keto diet which I tried but that also made me ill starving my body of carbs but it was insinuated that "It is quite normal to feel a bit unwell when you start a keto or very low carb diet, it's called "keto flu". You soon get over it and then you may get a sudden rush of happiness and well being" Well I did not but the other person whom thinks she is some form of diabetes expert obviously does not agree.

I am sick to death of being told so much stuff and for it to either fail or make me really poorly, I am already ill from dire anxiety, I saw the diabetic nutritionist recently and she said I could eat any fruit, so on my way home I bought fruit and since then- maybe 3 weeks I have had one pear and one apple per day.

I usually have poached eggs on toast for breakfast but like i said, it is like low carb or that vogel bread which has small slices- that is what i had today and i'm on my 2nd cup of tea. lunch i shall probably pick on some cheese, maybe low fat houmus and a few olives or sardines / fish and dinner tonight I shall be having salmon (my freezer is full of the stuff) with a huge pile of green veg and a few chards of potato.

I have been eating the Franks diabetic ice cream but the nutritionist advises It would be ok to have just normal ice cream instead- so I have done but only two scoops- well, it has been a bit hot.

Occasionally I treat myself to either organic bran flakes or rice crispies, 99% of what i eat is organic, i do not drink or smoke.

My last HB tests came in at 53 and my gp said this is fine though again, the expert on the other site advises that it is not actually normal, my diabetic nurse tells me to come to this site and not go on the other one because it is not recognised like this one is... so who is telling the truth because I really wish to know.

It has also been said "You have a choice here. You can either believe the NHS people who blindly follow outdated and debunked guidelines, or believe the members of this forum that are all diabetics with a vast amount of experience and knowledge between them. Not only that, but a great number have brought their HbA1c levels down to the non-diabetic range and managed to maintain remission from type 2 diabetes. As your HbA1c is high and you need to get it down in order to have your operation, I know who I would believe.

Your previous HbA1c was 53. Your last one was 80. Whatever you did between these two tests has made matters a lot worse.
Fruit is not a good choice for T2s. Not testing is a bad choice. Testing once a day is also a bad choice"

Anyway, I have come on here for help and advice from the NHS recognised site and would appreciate any advice because I am not getting any better, in fact I am worse and feeling pretty dreadful right now.

 

[Pumper_Sue]

Hello and welcome to the forum.
Are you and your hospital team absolutely sure you are type 2 and not a slow onset type1? I would be asking questions in that dept., if it were me.

Basically though you need to be very carb aware, look at the amount and type of carbs you are eating. Cereals are known as cereal killers as so very high in carbs and the impact they have on blood sugars.

If you need insulin it's not a failure so don't ever think it is. The fact you have been admitted to hospital with ketoacidosis https://www.diabetes.org.uk/guide-to-diabetes/complications/diabetic_ketoacidosis does make me very suspicious that you are not a type 2 and need insulin to be fit and healthy again. Obviously I am no medic so this is just my own humble opinion.

 

[Sally71]

I agree with Sue, I didn't think type 2s could get ketoacidosis, I have also heard that people misdiagnosed as T2 can initially do quite well on T2 medications, but not for very long. Which would seem to fit with what's happened to you. Unfortunately many doctors seem to think that if you are over the age of about 20 you must be T2 and don't even consider other types, whereas actually type 1 can start at any age (and we have many members here to prove it!).

Regarding carbs, you need to eat lots of meat, cheese, eggs, fish, green veg, and as little as possible of rice, potatoes, pasta, cereals, bread, and see what that does. If you're still struggling then you almost certainly need to go straight onto insulin regardless of which type you actually are. It's not a failure, once you get the right treatment for you you'll feel so much better. Good luck 🙂

(Good to see you back, @Pumper_Sue !)

 

[Ralph-YK]

HbA1c:
30(?) - 41 is "normal"
42 to 47 is pre-diabetic
48 and above is diabetic (even if you go below 48, once you've hit 48 you are counted as diabetic)
Some people have HbA1c around 100.
Medical people are not particularly bothered if you are around 48-53.

Organic: as far as I know this is irrelevant for diabetics.
As diabetics it is carbohydrates we have to manage. It is these that make a big difference to our levels, not food generally. We can eat some carbohydrates. Which, how much and with what is the question. This is where self testing comes in.
Test before and 1-2 hour after eating, keep a record of levels and a food diary. You'll be able to see what affect different food has, and hopefully after a couple of weeks you'll see a pattern. You'll also be able to see what affect any changes you make have.
My position is that this hopefully gives you the information to make your own choices about food.

What is your relationship like with your nurse. Some are better than others. And since they suggested coming here, sounds like they support you getting advise and support outside just herself.

Sometimes it's a case of finding the right combination of treatments.

 

[Melwest]

Hello Sue,
Thank you so much for your advice, the only time I actually felt better over the last couple of years is after they had pumped in litres of insulin to get my levels down last Christmas, I was literally unreadable and after a day of having an insulin drip my sugar levels came down to 58, it took a further 48 hrs to get my levels down to below 30, ever since then I have to be honest, I only need to look at a carb and I am up, it was the advice of my diabetic nurse to make sure I take carbs every day and not to test myself afterwards because I am almost certainly going to spike.

I would be happy if they advised to take the insulin as at least things would be more manageable and maybe I would feel ok, at the moment I am hot flushing worse than normal, having the worst mood swings, bursting into tears when out for no apparent reason, becoming quite irate at anyone that upsets me, some days I wish to smash my computer up and I have suicidal tendencies because of feeling so low.

 

[Pumper_Sue]

(((((((((((((((Mel))))))))))))))
It really sounds to me as if you need insulin now and not tomorrow. Can you take a urine sample into your GP on an urgent apt bases so they can test for ketones if not can you go to A&E and tell them you have fears you are type1? Write down all your symptoms so a clear picture is there for all to see.

The nurse at your surgery probably has no idea about late onset type1 diabetes so you need to push the idea as in drop a sledge hammer hint.

 

[Melwest]

HbA1c:
30(?) - 41 is "normal"
42 to 47 is pre-diabetic
48 and above is diabetic (even if you go below 48, once you've hit 48 you are counted as diabetic)
Some people have HbA1c around 100.
Medical people are not particularly bothered if you are around 48-53.

Organic: as far as I know this is irrelevant for diabetics.
As diabetics it is carbohydrates we have to manage. It is these that make a big difference to our levels, not food generally. We can eat some carbohydrates. Which, how much and with what is the question. This is where self testing comes in.
Test before and 1-2 hour after eating, keep a record of levels and a food diary. You'll be able to see what affect different food has, and hopefully after a couple of weeks you'll see a pattern. You'll also be able to see what affect any changes you make have.
My position is that this hopefully gives you the information to make your own choices about food.

What is your relationship like with your nurse. Some are better than others. And since they suggested coming here, sounds like they support you getting advise and support outside just herself.

Sometimes it's a case of finding the right combination of treatments.

Hi and Thank you Ralph,
I am due to have an eye op and went in for a pre op, my gp asked me to fast and have my HB test whilst I was there, now my eye op has been put back because they shall not operate with my levels being too high. I am told it was actually 84.
Regards Organic, this is only due to paranoia of Bayer Monsanto and nothing regards my diabetes but I do feel it is healthier.
You see this is where my diabetic nurse tells me off, i suffer anxiety and she says I am testing myself too often and not to worry about testing after any meal :/ Now, i just checked my blood levels as it is 2 hours after breakfast and i am 12.8 mmol, i am light headed, feel nauseous and have my usual acid reflux :/

I do get on with the diabetic team, it is just that when i mentioned the other site they were quite insistent in making me come over here rather than there as this is the only Nhs recognised site, she does say not to take too much to heart what i read in forums as are usually just other diabetic peoples experiences and nothing medically acknowledged and hence by her word why i have reintroduced potatoes, bread and rice into my diet..

 

[Bubbsie]

Mel I think the first thing to do is have a look at testing your blood sugars...having a meter & some testing strips will help you identify what particular food spikes your blood sugars...lots of us here have been advised we have no need to test...we shouldn't test the politics of that are not relevant now...the important thing is to get you some help...an HbA1c of 80 is high however there are members who have started with far worse/higher (myself included)… in respect of your diagnosis I have no idea whether that is correct...that remains to be confirmed you will need to be persistent with your health care team if your condition does not improve... I agree with @Pumper_Sue you need to look at the carbs you are eating...cereal is an absolute no for me organic or not...many fruits can have a high sugar content...particularly grapes...even some vegetables are not suitable for diabetics...anything that is starchy...are you able to get a testing meter & some strips (or do you have one) I think that would help you tremendously...unfortunately the dietary advice given to T2 diabetics is out of date...often archaic even that given by some DSN's...I prefer a low carb high fat (good fats) diet...it has worked for me & many others...some prefer moderate carbs you need to find what suits you best...testing will help you to identify what you can tolerate without raising your BG's...for now I would ring your DSN/GP be persistent...having had an episode of ketoacidosis they should take your concerns seriously...good luck & keep us updated if you can.

 

[Melwest]

Well I went to my appointment and my Ketones were 0.01, was told again to keep eating fruit and carbs and that they shall spike me and not to worry about testing afterwards..there is a pattern here Imho. Obviously I have to wait for my clinic appointment so that I can speak with the diabetic team as my levels shall not go down without some form of medication. I did say it was suggested about the possibilities of onset of type 1 and she completely disagreed saying if you did need to take insulin then you would be a T2 taking T1 medication and not a type 1.

The only fruit I have eaten of late were apples and conference pears, a few weeks ago I did have some strawberries and when it comes to dinner then i would have maybe 3 pieces of jersey royal size potatoes and they still spike me to around 15 mmol.

I had a moment there this afternoon telling her that they were all wrong and every time I listen to them and do as they advise it makes me ill, and funny how if I am left to my own devices with diet alone my tests come back ok the majority of the time. I have to admit i feel like they are laughing at me and not taking me seriously enough though in all fairness I do have to wait for the diabetic clinic which i am told should be under a month.... hopefully. So in the meantime i have to carry on eating the carbs and stuff.. like, i don't think so, they told me once before to have porridge and that takes me to 30 mmol so i stay far away as possible.

Anyway, I feel really rotten, i have a bad head, feel tired am back and forth from the bathroom like a yoyo, i am drinking litres of spring water and just had a late lunch of low fat cottage cheese with sardines in brine...

 

[Pumper_Sue]

Your nurse is out of her depth and clearly doesn't know about other types of diabetes.
Please keep a diary of food eaten and blood sugar results look on the internet for the phone number of the diabetes dept., and nurses helpline number and give them a ring please please tell them how ill you feel and ask for their advice. This should bring your apt forward a lot quicker.

 

[Martin Canty]

Sorry to hear that you are having a tough time, you are in the right forum for support... I have found other forums not to be as caring and nurturing as this one.

I may have missed it but are you self testing? A1c only shows a 3 month average whereas testing will show you the picture right now (particularly important to determine what foods you can tolerate & what you can't); note, the medical community does not encourage T2's to test but many of us have differing opinion & use testing as a way to manage our D

 

[Mark T]

Might be worth trying to get hold of either urine ketone strips or blood ketone strips - for peace of mind. Urine ketone strips are usually easiest to get hold of.

"was told again to keep eating fruit and carbs and that they shall spike me and not to worry about testing afterwards" 🙄

I've educated my nurses about this. 😛

 

[everydayupsanddowns]

If you can get your surgery to agree to a c-peptide test it will show whether you are producing lots of insulin (as often happens in T2) or very little (more typical of T1) or some but not much (which might indicate LADA as @Pumper_Sue suggests).

Either way, like @Sally71 says, if your insulin production is way down you need to know. The ketones you produce as part of a keto diet are not dangerous like the ketone/high BG/Insulin insufficiency nightmare that is DKA.

And your mood swings/depression could be being triggered and/or exacerbated by the high BG you are wrestling with.

Hope you manage to find a way through and get a clear diagnosis, but in the meantime keeping your carbs to a minimum may help your BG a little.

 

[Alister]

The Drs & nurses can only sugest & advise based on (at best) generalities the person who has yo make the final decision is you.
if something suggested seems to work then great, if no strike it of the list & try something else.
everyone is different and one size does not fit all, when you find something tat does work stick with it.

other posters have suggested insulin & quite rightly stressed it is not a failure or a punishment
as an example I was put straight on insulin @ diagnosis & my immediate though was "!I hope I am not on this too long" now after 4 months I am getting what I hope are excellent figures 4.5 -5.5 before meals & usually less than 7.5 afterwards so I now think "if it aint broke DONT fix It" & wouldprefer to reduce the drugs rather than the insulin.

again YOUR mileage will almost certainly vary

 

[Melwest]

Thank you all for your replies you are so kind, a little about my history for you, I was diagnosed T2 some 3 years ago and they started me on statins which did not go very well and was soon off them, I managed by diet only and very well for quite some time up until last November, some 2 years prior I had tried to pack up smoking and after 6 months failed so promised myself I would have another go, I took the (evil) Champix and after under two weeks i threw them away, i was not smoking but within a couple of weeks i had excessive phlegm which would not come up. I am now in my 6th month not smoking and I have no desire whatsoever for one though still have tarry phlegm which does not help my anxiety.

I have no idea why and maybe it was whilst the balance of mind was disturbed (Champix I do believe) but i was sucking metholyptus sweets which helped remove the phlegm, i started becoming thirsty so bought ginger beer, appleteiser- basically anything with supposedly reduced sugar to try and curb my thirst, this was over an entire weekend, on the Monday I was feeling really ill and went to my GP and she said to go to hospital immediately due to my symptoms of Ketacidosis, I managed to get to the hospital and collapsed.

It is only since then that I have had an absolute nightmare with my diabetes, beforehand I used to have porridge every day when i was managing through diet and my Hb tests came back good so something happened to my body after that hospital stay, everything I used to eat was a no no and sadly I am still told to keep taking carbs and stuff and I know it is going to affect me. I have tested myself before and after like all suggest and my practice diabetic nurse says I was testing far too often and I would only wind myself up due to anxiety.

Before hospital i found it difficult to go over 7.5mmol in a day, now, i usually wake up at 10+ and if on the rare occasion I go under it is because I have not eaten much if anything at all, I have to go shopping today and I loathe it because I don't just look at the labels for carb and sugar count, it all has to be organic too, I do not have anything carb free in the house, i have vogel soya and linseed bread, the cereals have gone in the bin, i have no tins of sardines or anything left so hence why no breakfast yet only I dare not touch any carbs when I am feeling this ill.

Lastly, I would be elated if they told me to take insulin as it is what I feel deep down shall work for me, this has been going on too long now and affects my life so much I am at wits end.

 

[Pumper_Sue]

Hi Mel,
it does sound to me as if you are a slow onset type 1 and it is a must you get yourself to hospital for a proper diagnoses. Your practice nurse is well out of depth and your life could be at stake.

No amount of low carbing will help you if you are type1 as you need insulin.

Can you tolerate bacon and eggs for breakfast?

Please please give the diabetes nurses a ring at your hospital.

 

[Ralph-YK]

Some on here have said insulin has been great for them.
As diabetics (as for everyone in general) we can eat eggs no problem.
Have you looked for a Diabetes UK support group in your area? Some find these helpful. Here's a link to their webpage for finding groups:
https://www.diabetes.org.uk/how_we_help/local_support_groups
[Edit]
If you need insulin, then you would have difficulty managing without.

 

[Drummer]

I read your posts with my jaw well and truly dropped - you have had some really bad advice.
Diabetics cannot deal with more than a sprinkling of carbohydrates - you need protein and fat to survive, dense carbs are going to cause spikes in BG levels and it is downhill from there.
I don't eat anything with over 10 percent carbs, and I have normal readings and results despite being a full blown diabetic at diagnosis - grains potatoes and starchy vegetables are not on my menu, I eat a few berries with cream probably three times a week maximum, and I avoid blueberries as they are the highest carbs of the fruits called berries. I have a tiny bowl for the berries and cream and have them in the freezer so there is no waste - and they are high volume when frozen so I can't get many into the bowl anyway.
I have a maximum of 40 gm of carbs per day, from salads and above ground veges and the berries - but I really like eating this way as it gives me bags of energy, normal readings and a very even blood glucose, no spikes, no worries.

 

[Melwest]

Trying to get to speak to someone at my community diabetic centre is difficult, I have had to leave a message and wait for a return call, i could be waiting a while only the surgery diabetic nurse said not to worry, it shall be under a month.. I have to be honest in that I take some supplements like Selenium, Nacetyl Cysteine and multivits due to having a constant infection (Candida) and I even took a sample in and when I spoke on the phone they told me categorically that the sample did not come from where i said- it most certainly did for goodness sakes, so because I feel ignored this is why i am trying these supplements, when i showed these to the diabetic nurse yesterday she humoured me and said she had never heard of half of them and chuckled away.

No wonder I am anxious and somewhat paranoid only they seem to brush me off as if I am just some eccentric patient making up stories, they would not believe any of you here, instead I shall be told to listen to the experts being them, the D Nurse seems to think that I am putting on the stomach ache from Metformin and Gliclizide as she puts it, " it doesn't affect me and i am fine" and then says " You have untreated diabetes" (hinting this is why i am poorly) I feel like they are trying to get me to leave their surgery because they have patient space issues, oh well, maybe i should be a little more patient.

I had some boiled eggs earlier and a packet of pork scratchings - how wonderful though I am eating them for the sake of it and having a carbonara with no pasta for dinner, i am so so tired today :/

 

[Drummer]

I can appreciate your annoyance - I was so ill when taking Metformin and a statin - shriekingly painful muscles and joints itching all over, loss of memory and concentration and the need to buy a professional quality carpet/upholstery cleaner, to sleep wrapped in towels and change the bed covers every morning and to be unable to leave the house after taking the single tablet at lunchtime due to the dreadful griping pains and uncontrollable diarrhoea - life was not worth living, and when I stopped taking them it was like a whole new lease of life.