Newly Diagnosed

[HunnyB71]

Hello Everyone

I’m new to all this, and was only diagnosed on Thursday! Bit of a shock when your GP phones you at work to makes an emergency appointment to see her!

Anyway, I’m not sure whether I’m Type 1 or 2 yet. I was told I was Type 2, but my GP has ordered more bloods to confirm, because of the symptoms I have. I agreed to have the bloods done again, only on the condition that I didn’t have the same phlebotomist, (showed my GP the two collapsed veins and lovely black/purple bruises on both arms and that woman is NEVER coming near me with a needle ever again!!) so she’s booked me in with a different one on Monday.

I started my Metformin today, because my Doc didn’t want to wait any more time to start treatment. I’m trying to get my head around what levels my blood glucose should be, but I do understand that a blood glucose level of 101 isn’t good?!

When I find out what type I am, I will share and I’m sure I’ll have many questions to ask along the way. All seems a bit surreal, yet relieved in equal measures, because at least I know that I’m not going crazy about the symptoms I’ve been experiencing for the past couple of months!

Take Care & Thanks for listening

K x

 

[Windy]

Hi @HunnyB71 welcome to the forum, and sorry to hear about your uncertain diagnosis, and that the phlebotomist used your arms for target practice. I donated blood once with a trainee putting in the needle, and I wondered if she was trained by Vlad the Impailer.

The 101 is your glycated haemoglobin (HbA1c) which is a measure of three months worth of blood glucose. 101mmol/mol is high, but you can do something about that, now that you're taking metformin, and any other treatment that the GP decides upon, plus making changes to your diet, at least in the short term until you're sure what sort of diabetes you have. You can address the HbA1c irrespective of the type you are, T2s use pills and diet generally, whilst T1s use insulin to reduce their blood glucose.

For a non-diabetic person, they would have an HbA1c of less than 48, with pre-diabetes from 42 - 47.

I'm T2, and had an HbA1c of 82 at it's highest, and 80 when I was formally diagnosed. I've managed to get it down to 42 in six months by losing weight and cutting out the bad food that I used to eat, as well as most of the carbohydrate rich food like cakes, biscuits, potatoes, pasta, bread etc, which the body converts into glucose.

Metformin can have side effects on your digestive system, and give you diahorrea, if it does, let your GP know, and they can prescribe the slow release version instead. I didn't have any issues with it, but some do.

You'll also find you have many more appointments with eye testers, nurses who look at your feet, and blood and urine samples for loads of stuff, and probably a diabetes course once it's confirmed what type you are.

Do you have any particular questions you want to ask? There's tonnes of information on the site about everything under the sun, which can be a bit overwhelming.
Best wishes, Sarah

 

[everydayupsanddowns]

Welcome to the forum @HunnyB71

Sorry you have to be here, but glad you have found us.

Were you losing any weight before your diagnosis? Do you have any diabetes in close family members? Have you got any autoimmune conditions?

Hope your blood checks come through speedily, and you get some clarity soon. In the meantime it might be worth considering reducing your total carbohydrate intake.

If there is a chance you might be T1, please do look out for any stomach pain, breathlessness, nausea, vomiting or acetone/‘pear drop‘ smell on the breath which might indicate dangerously high levels of ketones that would need immediate medical attention.

 

[ColinUK]

One thing we rarely mention on here, and I’ve heard many times that doctors don’t mention it either, is that with a diabetes diagnosis you’re entitled to a medical exemption certificate from the NHS. That means no charge for prescriptions.
Also means usually zero cost for optician eye tests as well.

If you already have a prescription prepay thing then that can be partially refunded.

Details are on the NHS website.

 

[Windy]

One thing we rarely mention on here, and I’ve heard many times that doctors don’t mention it either, is that with a diabetes diagnosis you’re entitled to a medical exemption certificate from the NHS. That means no charge for prescriptions.
Also means usually zero cost for optician eye tests as well.

If you already have a prescription prepay thing then that can be partially refunded.

Details are on the NHS website.

I only found out because the lady in the pharmacy asked me if I had an exemption certificate when I went to pick up my first lot of metformin. I'd only been diagnosed two days before, so didn't have one. She filled a form out so I could get the prescription charge refunded, and gave me a form to fill out and give to my doctors to sign and send on for me.
There's an eligibility checker on this page

Prescriptions are free in Scotland, Wales and, I think Northern Ireland too.

 

[HunnyB71]

Welcome to the forum @HunnyB71

Sorry you have to be here, but glad you have found us.

Were you losing any weight before your diagnosis? Do you have any diabetes in close family members? Have you got any autoimmune conditions?

Hope your blood checks come through speedily, and you get some clarity soon. In the meantime it might be worth considering reducing your total carbohydrate intake.

If there is a chance you might be T1, please do look out for any stomach pain, breathlessness, nausea, vomiting or acetone/‘pear drop‘ smell on the breath which might indicate dangerously high levels of ketones that would need immediate medical attention.

Unfortunately, I can answer’Yes’ to all your questions.

I haven’t felt really well in a long time, but since I had a bad pneumonia caused by acid reflux, over Christmas and the new year, things have got worse.

Since then, I’ve have suffered from bad thrush, which, in the first instance, I put down to the 2 courses of strong antibiotics I was prescribed. Fortunately, I have been able to see the same Dr throughout all this, and when I contacted her for the third time about the thrush, and told her I’d lost weight rapidly (10kg since January!), she ordered urgent bloods, and here I am.

So in answer to the questions you’ve put -
My father had type 2 diabetes
I’ve lost a lot of weight (10kg)
I have Fibromyalgia, which I believe is now classed as an auto immune disease (it wasn’t when I was diagnosed in 2012).

I have my bloods done again on Monday. I could have had it done on Friday, but as my only good vein was black, I asked if I could leave it until some of the bruising has gone down.

I’ve also bought myself a blood glucose monitor and perhaps you could explain the difference between the results of a blood test and the results on the monitor I have please? I can see that they are very different and when I tested my blood last night before bed, it was 19.3 and was 15.7 this morning.

I have to admit I’m not feeling too clever this morning though. I’m aching around my kidneys and am feeling sick. If I feel the same tomorrow, I’ll mention it when I have my bloods done, but I’m also booked in to see the diabetic nurse on Tuesday, so may be able to hang on until then.

Can you tell me of any serious symptoms that I would need to act upon urgently please?

Many Thanks

K x

 

[Windy]

Morning, I have no medical training whatsoever, so have no way of knowing what's serious and what isn't, but can I encourage you to phone NHS 111 and ask them? If you're concerned enough to ask the forum, it's probably worth running past medical people on the phone, or going to an NHS drop in centre if you have one nearby. I know you probably don't want to pester the NHS, but I'm certain they'd rather you asked the question, and it turned out to be nothing, than not ask.

Blood glucose readings:
There's two different readings which are both for BG, the HbA1c, which you'd have done at the doctors. It's measured in mmol/mol, and should be less than 48mmol/mol for a non diabetic person.
The other reading is a finger prick reading of BG, which is measured in mmol/L, and should be between 4 and 7, fasting for a non-diabetic person.
I'm not sure why they're measured in different units, and as far as I know, you can't reliably convert between one and another.

Please give the NHS a call. Better to be safe than sorry. Sarah

 

[Eddy Edson]

Unfortunately, I can answer’Yes’ to all your questions.

I haven’t felt really well in a long time, but since I had a bad pneumonia caused by acid reflux, over Christmas and the new year, things have got worse.

Since then, I’ve have suffered from bad thrush, which, in the first instance, I put down to the 2 courses of strong antibiotics I was prescribed. Fortunately, I have been able to see the same Dr throughout all this, and when I contacted her for the third time about the thrush, and told her I’d lost weight rapidly (10kg since January!), she ordered urgent bloods, and here I am.

So in answer to the questions you’ve put -
My father had type 2 diabetes
I’ve lost a lot of weight (10kg)
I have Fibromyalgia, which I believe is now classed as an auto immune disease (it wasn’t when I was diagnosed in 2012).

I have my bloods done again on Monday. I could have had it done on Friday, but as my only good vein was black, I asked if I could leave it until some of the bruising has gone down.

I’ve also bought myself a blood glucose monitor and perhaps you could explain the difference between the results of a blood test and the results on the monitor I have please? I can see that they are very different and when I tested my blood last night before bed, it was 19.3 and was 15.7 this morning.

I have to admit I’m not feeling too clever this morning though. I’m aching around my kidneys and am feeling sick. If I feel the same tomorrow, I’ll mention it when I have my bloods done, but I’m also booked in to see the diabetic nurse on Tuesday, so may be able to hang on until then.

Can you tell me of any serious symptoms that I would need to act upon urgently please?

Many Thanks

K x

Your 101 is your "HbA1c" which is kind of a measure of what proportion of yr red blood cells have picked up glucose. The units are mmol/mol - ie millimoles per mole, a "mole" being a measure of number of molecules.

The haemoglobin molecules in yr red blood cells pick of glucose as they whizz around yr bod and the proportion with glucose can be used to give a rough idea of yr average blood glucose over the last 2-3 months ie the average lifespan of a red blood cell.

It is just a rough approximation, which scientists worked out by mapping HbA1c readings against measured blood glucose averages over 2-3 months. The mapping can vary widely from person to person, mainly because average red blood cell lifespan varies widely.

Your blood glucose meter on the other hand measures your actual blood glucose concentration right now. The units are mmol/litre - so a measure of the concentration of glucose molecules.

There is no exact translation between the two measures. You'll find comments like "An HbA1c of 48 mmol/mol corresponds to an avg BG of 7.8 mmol/L", but in fact actual average BG will not have been exactly 7.8 and may have been significantly higher or lower.

The wikipedia entry on HbA1c reproduces the table from the original study showing the ranges (95% confidence intervals):

%	mmol/mol[37]	mmol/L	mg/dL
HbA1c		eAG
5	31	5.4 (4.2–6.7)	97 (76–120)
6	42	7.0 (5.5–8.5)	126 (100–152)
7	53	8.6 (6.8–10.3)	154 (123–185)
8	64	10.2 (8.1–12.1)	183 (147–217)
9	75	11.8 (9.4–13.9)	212 (170–249)
10	86	13.4 (10.7–15.7)	240 (193–282)
11	97	14.9 (12.0–17.5)	269 (217–314)
12	108	16.5 (13.3–19.3)	298 (240–347)
13	119	18.1 (15–21)	326 (260–380)
14	130	19.7 (16–23)	355 (290–410)
15	140	21.3 (17–25)	384 (310–440)
16	151	22.9 (19–26)	413 (330–480)
17	162	24.5 (20–28)	441 (460–510)
18	173	26.1 (21–30)	470 (380–540)
19	184	27.7 (23–32)	499 (410–570)

So if eg yr HbA1c were 97 mmol/mol then there's probably a 95% chance your avg BG over the last 2-3 months was in the range 12.0-17.5 mmol/L. Can't really say more than that, except that in any case, it's too high & steps need to be taken.

HbA1c is best used as an indication for when BG levels are seriously out of whack, and for tracking changes over time. Not for stressing over whether it's eg 45 or 50 mmol/mol, which happens too often ...

 

[Leadinglights]

They are in different units because they measure something slightly different. HbA1C used to be given as a % but people got confused as the numbers were then very similar to spot test results so the guidelines were changed so they should be given in mmol/mol though some G Ps still use % which of course does cause confusion especially if people don't say the units of any results given.

 

[HunnyB71]

Morning, I have no medical training whatsoever, so have no way of knowing what's serious and what isn't, but can I encourage you to phone NHS 111 and ask them? If you're concerned enough to ask the forum, it's probably worth running past medical people on the phone, or going to an NHS drop in centre if you have one nearby. I know you probably don't want to pester the NHS, but I'm certain they'd rather you asked the question, and it turned out to be nothing, than not ask.

Blood glucose readings:
There's two different readings which are both for BG, the HbA1c, which you'd have done at the doctors. It's measured in mmol/mol, and should be less than 48mmol/mol for a non diabetic person.
The other reading is a finger prick reading of BG, which is measured in mmol/L, and should be between 4 and 7, fasting for a non-diabetic person.
I'm not sure why they're measured in different units, and as far as I know, you can't reliably convert between one and another.

Please give the NHS a call. Better to be safe than sorry. Sarah

Thank you so much for your advice Sarah. I feel a bit like a fish out of water right now.

To make matters worse, my ex has just dropped off my son and my son has presented me with a card and a 2kg tin of Quality Street!!! (I haven’t told my ex yet) . Oh the irony!!

 

[HunnyB71]

Your 101 is your "HbA1c" which is kind of a measure of what proportion of yr red blood cells have picked up glucose. The units are mmol/mol - ie millimoles per mole, a "mole" being a measure of number of molecules.

The haemoglobin molecules in yr red blood cells pick of glucose as they whizz around yr bod and the proportion with glucose can be used to give a rough idea of yr average blood glucose over the last 2-3 months ie the average lifespan of a red blood cell.

It is just a rough approximation, which scientists worked out by mapping HbA1c readings against measured blood glucose averages over 2-3 months. The mapping can vary widely from person to person, mainly because average red blood cell lifespan varies widely.

Your blood glucose meter on the other hand measures your actual blood glucose concentration right now. The units are mmol/litre - so a measure of the concentration of glucose molecules.

There is no exact translation between the two measures. You'll find comments like "An HbA1c of 48 mmol/mol corresponds to an avg BG of 7.8 mmol/L", but in fact actual average BG will not have been exactly 7.8 and may have been significantly higher or lower.

The wikipedia entry on HbA1c reproduces the table from the original study showing the ranges (95% confidence intervals):

%	mmol/mol[37]	mmol/L	mg/dL
HbA1c	eAG
5	31	5.4 (4.2–6.7)	97 (76–120)
6	42	7.0 (5.5–8.5)	126 (100–152)
7	53	8.6 (6.8–10.3)	154 (123–185)
8	64	10.2 (8.1–12.1)	183 (147–217)
9	75	11.8 (9.4–13.9)	212 (170–249)
10	86	13.4 (10.7–15.7)	240 (193–282)
11	97	14.9 (12.0–17.5)	269 (217–314)
12	108	16.5 (13.3–19.3)	298 (240–347)
13	119	18.1 (15–21)	326 (260–380)
14	130	19.7 (16–23)	355 (290–410)
15	140	21.3 (17–25)	384 (310–440)
16	151	22.9 (19–26)	413 (330–480)
17	162	24.5 (20–28)	441 (460–510)
18	173	26.1 (21–30)	470 (380–540)
19	184	27.7 (23–32)	499 (410–570)

So if eg yr HbA1c were 97 mmol/mol then there's probably a 95% chance your avg BG over the last 2-3 months was in the range 12.0-17.5 mmol/L. Can't really say more than that, except that in any case, it's too high & steps need to be taken.

HbA1c is best used as an indication for when BG levels are seriously out of whack, and for tracking changes over time. Not for stressing over whether it's eg 45 or 50 mmol/mol, which happens too often ...

Thank you so much for this. It makes a lot more sense now and that table is a great help, even though it scares the hell out of me now!

 

[Windy]

To make matters worse, my ex has just dropped off my son and my son has presented me with a card and a 2kg tin of Quality Street!!! (I haven’t told my ex yet) . Oh the irony!!

Terrible timing, but a lovely thought from your son.

even though it scares the hell out of me now!

I know it doesn't seem it at the moment, but it does get easier to deal with after the first couple of weeks or so, or at least when you can understand what's happening a bit better (test results etc), though I appreciate you'll be waiting a while for the T1 tests, as they take a few weeks at least.
I felt quite adrift in the couple of weeks between knowing I was diabetic because of my test results, and seeing the GP to get prescribed. I called it "staring into the diabetes abyss", which is a bit melodramatic, but without concrete facts, my imagination was running wild.
Whatever happens, whether you're T1 or T2, you can get support from you GP etc, and from the forum, and make a plan to navigate your diabetes to the best of your ability.

Best wishes, Sarah

 

[HunnyB71]

Terrible timing, but a lovely thought from your son.


I know it doesn't seem it at the moment, but it does get easier to deal with after the first couple of weeks or so, or at least when you can understand what's happening a bit better (test results etc), though I appreciate you'll be waiting a while for the T1 tests, as they take a few weeks at least.
I felt quite adrift in the couple of weeks between knowing I was diabetic because of my test results, and seeing the GP to get prescribed. I called it "staring into the diabetes abyss", which is a bit melodramatic, but without concrete facts, my imagination was running wild.
Whatever happens, whether you're T1 or T2, you can get support from you GP etc, and from the forum, and make a plan to navigate your diabetes to the best of your ability.

Best wishes, Sarah

I am fortunate in that the GP I’ve seen about this since I had pneumonia, has a particular interest in Diabetes and because of that, she picked up on the thrush Five
problem and sent me for bloods. I’m not sure whether a male dr would’ve made the connection tbh.

 

[everydayupsanddowns]

The abdominal pain and nausea, along with weight loss and another autoimmune condition are worth getting checked I think. Perhaps ring NHS111, or call your GP out of hours service?

You might be able to get some urine ketone strips (ketostix) from a pharmacy - about £5 for a pot of 50. Not as accurate as blood tests but could rule out ketones which are dangerous if you’ve not got enough insulin in circulation.

 

[helli]

One thing we rarely mention on here, and I’ve heard many times that doctors don’t mention it either, is that with a diabetes diagnosis you’re entitled to a medical exemption certificate from the NHS. That means no charge for prescriptions.
Also means usually zero cost for optician eye tests as well.

If you already have a prescription prepay thing then that can be partially refunded.

Details are on the NHS website.

My understanding is this is only if your diabetes is treated with medication. If you treat your diabetes with diet and exercise, you are not entitled to a medical exemption certificate.
It is only valid for 5 years so you need to reapply, even if you have an incurable condition such as Type 1 diabetes.

And this is only in England. Rules are different in the other home nations.

The other thing which is often missed by doctors is that if you are treated with insulin you must tell the DVLA and your car insurance straight away as you are at risk of hypos.

 

[helli]

I am fortunate in that the GP I’ve seen about this since I had pneumonia, has a particular interest in Diabetes and because of that, she picked up on the thrush Five
problem and sent me for bloods. I’m not sure whether a male dr would’ve made the connection tbh.

A male doctor made the thrush connection for me.
Don’t forget men can get thrush.

 

[HunnyB71]

A male doctor made the thrush connection for me.
Don’t forget men can get thrush.

Yes, I know, but I wonder whether they would’ve put it down to the antibiotics I’d been on, that’s all (didn’t mean to offend). Anyway, it’s bye the bye now. I know what was the cause now and glad that the Dr ordered the bloods. The hard work starts now and I need to get my BG down from 101

 

[HunnyB71]

Yes, I know, but I wonder whether they would’ve put it down to the antibiotics I’d been on, that’s all (didn’t mean to offend). Anyway, it’s bye the bye now. I know what was the cause now and glad that the Dr ordered the bloods. The hard work starts now and I need to get my BG down from 101

 

[Deleted member 34756]

Hi @HunnyB71, it's great to see you've joined the online community. Once you do get your diagnosis we'll be happy to give you support with anything you need help with!

 

[ColinUK]

Yes, I know, but I wonder whether they would’ve put it down to the antibiotics I’d been on, that’s all (didn’t mean to offend). Anyway, it’s bye the bye now. I know what was the cause now and glad that the Dr ordered the bloods. The hard work starts now and I need to get my BG down from 101

I doubt anyone was offended.

We’re just glad you found the forum.