hi everyone,i have had what i now realise to be PA/b12d symptoms all my life.i went to see gp last year with i thought was RA/lupus (had full butterfly rash when pregnant with my eldest son and just across bridge of my nose since)had a full blood test and was told my HbA1c was 12.6,this has stayed about the same for the last year and now the nurse wants me to go on insulin(i am worried about this after reading NHS website i also have hypoglycemia but i did'nt know it was called that) .my problem is i have no symptoms of diabetes,no thirst,no excessive urine with lots of sugar in it, tested negative for ANA antibodies so not type 1(presumed type 2)i am normal weight,after starting b12 jabs in august last year i finally feel healthy and well for the first time in my life(i'm 55)my feeling is that it's my gut that is healing and will take time to do so but nurse wants to rush me into it,big panic about getting levels down(my instinct was not to take metformin)only new symptom has been really strong nausea(been faint on/off all my life)that started in summer of 2017 and finally went just before christmas 2018 and now back to faint version.my question is has anybody else experienced this? thank you,Deb
high blood sugar: hi everyone,i have... - Pernicious Anaemi...
high blood sugar
I am very confused.
When you say your HbA1c was 12.6 - was this 12.6% or 12.6 mmol/mol? Because the former is very high and the latter is very low.
I'm going to guess that you didn't have an HbA1c test (which requires a blood sample being sent off the the lab) but a blood glucose test, with a finger-prick and a test strip. That is slightly high, but not enough to start insulin treatment on its own. You would need an HbA1c test as the finger-prick test is susceptible to interference to give falsely high values.
Then you say that you have hypoglycemia - low blood sugar - for which insulin is not recommended. Indeed, it could prove fatal.
Many people have diabetes without the classic symptoms and without being overweight. It can be genetic (often called Type 1.5).
Metformin isn't the only medication that can be used to treat it. Many people have horrible side-effects (I told my nurse that I don't care if metformin meant I lived an extra 5 years if I spent them all sitting on the toilet).
sorry,it is % ,i had a blood test sent off to the lab earlier this week,came back at 15 %,when i went to see nurse on thurs she did a finger prick test which was 26.i agree with you about side effects,i've just got some decent quality of health and don't want to go backwards but the nurse doesn't want to listen to me,only push meds on me that i'm not sure about
also i've had what i now know to be hypoglycemia all my life too and i still get it ,this is why i'm wasn't sure about insulin ,could my glucose levels be swinging about wildly?
Might I suggest you get yourself a glucometer and check your blood glucose levels throughout the day, for several days, to see what is going on. It could be you have Reactive Hypoglycemia, rather than the 'standard' Diabetes.
Also, may I recommend you visit diabetes.co.uk where there is a lot of information and a very good forum, including very experienced people with a variety of diabetes types that will be able to help
It's important to get a print out of all your blood results, including the units in which the results are given, plus the name of the test. You are entitled to a copy of your test results and, if you can access your details online, so much the better. If you don't already do this, make enquiries at the surgery's reception desk. You will need to sign for the facility.
If your blood glucose is out of range, it's important to check this out PDQ 
thank you jmn,i had a look at diabetes.co. uk when fbirder suggested it could be type1.5 and i would say yes but as a delightful rheumotologist told me last year'no antibodies no deal'so i don't know!i'm going to get a glucometer and see how i go,thanks again for your support
The huge benefit of the HbA1c test over any other is that it smooths out the swings in blood glucose.
When new red blood cells are formed the haemaglobin inside them has glucose molecules attached - it is glycated. The more glucose that is about at that time, the more glucose molecules attach to the fresh haemaglobin.
The HbA1c test measures the degree of glycation. As a red blood cell has an average life of about three months, the result of the test is a good indication of the average amount of glucose that has been in your blood over that time scale. That means it isn't affected by short-term changes such postprandial hypoglycaemia.
The finger-prick test is OK for monitoring how your blood glucose varies throughout the day - especially in response to food. Many people have very high results first thing in the morning. Some have very low results immediately after eating (the postprandial hypoglycaemia mentioned above). It's really only essential for people using insulin, to determine when they need a shot.
15% is very high for HbA1c. I was put on metformin when mine was at 10%. I took myself off after a few months, by which time I'd lost a lot of weight and my HbA1c was down to 6.8%. Six months later it was 6.4% and I was no longer diabetic.
Are you sure it was hypoglycaemia and not hyperglycaemia?
yes hypo,i sweat,get very sharp hunger pangs ,get shakey and very irritable ,husband says you need something to eat your'e 'hangry'! thank you very much for your replies,it has helped me understand it,my mind is rather boggled by it all at the moment,i think the glucometer is a very good idea, i will get one and post again
Yes, the glucometer will tell you if your attacks are hypoglycaemia.
thank you again ,i much appreciate you help
Hi flosslechops
When looking for a glucometer, be sure to check out the prices of the test strips before buying. Some test strips are more expensive than others and it's the ongoing cost of test strips that really need consideration. Once you've decided on that, try contacting the manufacturer saying you are looking for a suitable glucometer - they often provide the meter for free, as it's the test strips that make their money!!!
There are two particular glucometer systems that are regarded as the most economical - CodeFree - diabetes.co.uk/blood-glucos... and TEE2+ - 50 test strips cost £7.75 from the manufacturer, but can cost up to £12 from pharmacies. There is a code to get test strips a bit cheaper, although you need to buy in larger quantity. See diabetes.co.uk/forum/threads/which-is-the-cheapest-lancets-and-strips.154303/ and scroll down a couple of posts for post by Rachox, who has posted all the details etc.
Good luck
thats great jmn,i'm just looking at the codefree on amazon and wondering about the test strips!good advice, thank you very much
PS - Mmol/l is the measurement used here in the UK
thanks,i will check that!
thanks jmn,nearly got one in mg!gone for the codefree in mmol with extra strips about 21 pounds altogether,again,many thanks
Hi,
I read about a type of diabetes called MODY diabetes which is usually diagnosed in people under 25.
diabetes.org.uk/diabetes-th...
There is also LADA diabetes, also called Type 1.5 diabetes.
diabetes.org.uk/diabetes-th...
"went to see gp last year with i thought was RA/lupus (had full butterfly rash"
Were you tested for Lupus and Hughes Syndrome (APS Antiphospholipid Syndrome) and RA?
It is possible to have blood (sero) negative forms of Lupus and Hughes and also I think RA.
I am not medically trained.
no because i tested negative for ANA antibodies further testing was thought unnecessary rheumo told me no antibodies no deal last year,but when i got into SI with b12 all the symptoms went away for lupus/RA,its this high blood sugar that appeared last april that gp is being pushy about,i am inclined to agree with jnm2017 that a possibility is reactive hypoglycemia as i only have symptoms for low blood sugar and still do,i have been reading older answers to posts of yours and one mentions low b12 can raise blood sugar but i can't find it again(typical!)but i will look again,your replies are great,so detailed
B12 is used as a co-factor in the krebbs cycle which enables you to release energy from carbohydrates. If this process doesn't run properly your body will try to burn fats instead to release energy. This can lead to keto-acidosis. This happens when a diabetic is hypoglycemic. It is also possible that it can happen in someone with B12 deficiency though it appears to be extremely rare - I've only come across one reported case in looking at studies. More common is people with B12 deficiency reporting sweetness on breath when they are in need of an injection. This is also a common sign in diabetics that their blood sugars are low.
There are a number of genetic variants that will lead to MODY diabetes. This is closer to type 1 than type 2 diabetes but I don't know if it is associated with antibodies. Some variants lead to a diabetes that can go totally undetected because the impact is very low. MODY is a dominant gene so if you have the gene you develop the diabetes, hence there would probably be a family history if you had a MODY strain.
There is a strain of MODY that runs in my family but I didn't inherit the gene.
Hi Gambit62
Thank you so much for this little gem of information
"More common is people with B12 deficiency reporting sweetness on breath when they are in need of an injection. This is also a common sign in diabetics that their blood sugars are low"
I have PA & Type 2 Diabetes. I have had this "sweetness" on my breath. So now because I am now armed with your little gem, I can use a little needle to test my blood sugar, before using the bloody big one to SI.
Thanks again.
Hi flosslechops, I think your nurse is keen for you to start on meds because if your blodsugars are in the 20s you are at high risk of diabetic ketoacidosis and she is wanting to avoid you going in to hospital in an ambulance.
As said above, if you are worried about Metformin and the reduced uptake of b12 as a side effect, there are masses of meds you can try and new once come on the market regularly. You should never start on full dose of Metformin to avoid the side effects, such as diarrhoea, you start on 500mg and slowly get it up to 2g per day. There is a slow release Metformin that some people get on better with than the normal one.
Hope you get your diabetes sorted, I think your nurse seem to be doing all the right things.
All the best!
i understand why they are being forceful but i'm not being listened to,they want me on insulin but i have symptoms of low blood sugar,this is what is upsetting me,and there is no ketones in my recent urine sample despite a 15% glucose reading,thank you for your support
It is unusual to go on insulin straight away, is it just in the acute stage? Or have you been on tablets before?
Sounds like you need to have things explained a bit better so you know why they want to go for insulin...
I'd make another appointment and talk it through.
Good luck
thanks emma,i had a blood test last april when it was picked up,i didn't take the metformin offered because i am unsure about it and no~one wanted to talk to me about it,i do like the gps and nurses at my surgery,i guess because its something they deal with regularly they don't think its important to talk about and forget ordinary people don't have the information they do
the urine test that was sent off with my bloods this week came back clear, i think it maybe it should have ketones in it with a 15% blood sugar reading ,or not,i don't know.i've not had the sweet breath either,i know how it smells as i have smelt it on people i know to be diabetic ,i think b12d is a genetic thing that runs in my family,i see varying degrees of it in relations but i seem to be the worst affected at the moment and as far as i know there isn't and hasn't been any diabetes,thank you for explaining about the b12 part in all this ,i have been trying to find answers by myself but i've learnt the most this weekend by posting here,shame i didn't do it sooner!thank you again
sorry should have addressed above comment to gambit 62
I am type 2 diabetic, it has been my experience that some diabetic nurses want to throw insulin around to liberally! I am very glad I avoided it at the time as it was an eroneous reading.
I am really not sure that what I am about to say is correct, anyone please feel to correct me:-
1. As fbirder says the test is about glucose bonding to hemoglobin molecules
2. As I understand it, in PA the red blood cell count is lowered and the RBC you have left hang around longer.
Given 1 and 2 above, this means that someone with PA will test higher for HbA1c than the average, the RBC are older than 3 months and have gathered more glucose.
But as a caveat, I know from personal experience that it is entirely possible to feel hypo when in reality I am hyper, I have tested it many times.
I hope you get an answer quickly 
that's very interesting no-fixed- abode,perhaps that is what is happening to me too, i have ordered a glucose meter ,it should be here shortly and i will get a better idea of what is happening,the nurses are trying to frighten me into using insulin and i just want all the facts first ,i think they just expect patients to obey without question,but if it is true hypo then its me who pays the price,thank you very much
Agreed... Insulin is a big step, frankly I look it as a death sentence as a type 2 diabetic. It means that I have not taken control of my diabetes, that I am going to gain weight, and that will in turn mean I require more insulin and gain more weight again... This is my bogey man that keeps me striving to lose weight and endure the metformin side affects.
Good luck, and make sure you are fully aware of all of the options before you take that one! (certainly get a few more HbA1cs under your belt... to prove the result)
i didn't know insulin did that,spoke to nurse today and explained my reasons,she said ok but i am being referred to diabetes specialist at hospital so will see what happens with that,and yes i will get more blood tests,i feel the same as you ,it's a huge step and it frightens me,thank you
Blood results..concerns over high B12
I have ALL of the symptoms of PA and it is ruining my life. My GPs won't look further.
B12 too high..
I believe my brother is dying from PA
Low Blood Pressure and B12
