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Clare153

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Relationship to Diabetes
Type 2
Hi, New to the forum so thought I would say hello.
Rheumatology bloods have just shown up a HBA1c of 160 something (didn't catch the last number on telephone appointment, maybe 8, probably doesn't make any difference tbf).
So determined to prove it wrong (always!), bought finger test kit yesterday, 26.7 two hours after food and 17.8 first thing this morning. Contacted best friend who is a medical biochemist to ask how the lab could make such a mistake, to be told its absolutely not a mistake, a result like that would have been re checked by a different person in the lab and signed off by a manager before sending out.
A couple of years ago I was in the pre diabetic range briefly, which I quickly sorted with lifestyle. My mother is a late onset type 1 diabetic.

So, having spent a couple of days in denial, I'm ready to take on any advice and hit the head on.
 
Clare153 said:
Hi, New to the forum so thought I would say hello.
Rheumatology bloods have just shown up a HBA1c of 160 something (didn't catch the last number on telephone appointment, maybe 8, probably doesn't make any difference tbf).
So determined to prove it wrong (always!), bought finger test kit yesterday, 26.7 two hours after food and 17.8 first thing this morning. Contacted best friend who is a medical biochemist to ask how the lab could make such a mistake, to be told its absolutely not a mistake, a result like that would have been re checked by a different person in the lab and signed off by a manager before sending out.
A couple of years ago I was in the pre diabetic range briefly, which I quickly sorted with lifestyle. My mother is a late onset type 1 diabetic.

So, having spent a couple of days in denial, I'm ready to take on any advice and hit the head on.
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Those are really high numbers, Clare and you really need to get them down. You haven't posted anything under 'Relationship to Diabetes' so have you had a diabetes diagnosis and been prescribed meds?
 
Hi and welcome.

An HbA1c of 160 odd may be a forum record high and is very serious indeed and requires quite urgent medical attention. How are you feeling? If you start to feel unwell then you need to get to A&E pronto. Do you or your mother have any Ketostix to test your urine for ketones? If not please get some, either from a nurse or they can be bought over the counter for about £5 for a pot of 50. These are used to dip into your urine when your blood glucose levels are persistently above 15 to check for the presence of ketones and if they go above 1 you need to seek urgent medical help because you are at risk of Diabetic KetoAcidosis. A pear drop smell on your breath can be an indication of ketones and symptoms could also include abdominal pain/vomiting or respiratory distress.

You should not have been left with such a high level and no immediate referral for treatment.

You mention that this came about as a result of blood tests at the Rheumatology department. Are you on steroid treatment for a rheumatology issue. Steroids can cause diabetes but also wondering if you are being treated for an autoimmune condition like RA or PMR if you might also be a late onset Type 1 like your mother. Autoimmune conditions are unfortunately gregarious and like to meet up and wreak havoc in the same body and Type 1 is also an autoimmune condition.

Anyway, the priority is to get an urgent appointment to be started on treatment pronto, if you haven't already and get a means of testing for ketones to keep yourself safe because with levels that high you are at risk of DKA and need to be able to monitor that risk.
 
Martin.A said:
Those are really high numbers, Clare and you really need to get them down. You haven't posted anything under 'Relationship to Diabetes' so have you had a diabetes diagnosis and been prescribed meds?
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Thanks for the response. I know they are very high. Only found out on Monday, and waiting for rheumatology team to send a further blood form for second check as per NICE guidelines. No diagnosis yet, but coupled with family history and the fact I have other autoimmune disorders, a good guess in late onset t1.
 
In my opinion, the rheumatology department should have sent you straight down to A&E with one HbA1c that high.... or at the very least rang the diabetes clinic and sought some advice as there are very few if any Diabetes Specialist Nurses who would let you leave the building without treatment at that level.
Your finger prick confirms your levels are dangerously high, so there is really no need for a second HbA1c or any delay to get one. A second test (as per NICE) might be performed if your HbA1c was borderline at say 48-55 but we are talking 3 times that level and well into the danger zone and a simple finger prick, which you have clearly done, would corroborate that HbA1c result.
Do you have any symptoms..... Tiredness/fatigue, thirst and frequent toilet trips and any unexplained weight loss?

Drinking plenty of water will help to flush some of that glucose out through your kidneys. Don't be tempted to drink fruit juice or milk or anything which contains carbs (sugars or starches) as that will raise your levels further.

Hope you get some support soon but please be prepared to be pushy. Maybe get an urgent appointment at your GP practice and get your blood checked there. DKA can develop suddenly and become dangerous very quickly. There should not be any delays in starting treatment at this level.
 
Hi @Clare153

As others have said those levels do not need a second test. They need urgent action.
If you do not have ketone test strips I would suggest that you go directly to A&E. if you have ketones they are dangerous and need immediate treatment (insulin). Tests later might be needed to determine whether you are T1/LADA or T2 but reducing the levels and checking for ketones in the priority.

Please let us know how you get on.
 
rebrascora said:
Hi and welcome.

An HbA1c of 160 odd may be a forum record high and is very serious indeed and requires quite urgent medical attention. How are you feeling? If you start to feel unwell then you need to get to A&E pronto. Do you or your mother have any Ketostix to test your urine for ketones? If not please get some, either from a nurse or they can be bought over the counter for about £5 for a pot of 50. These are used to dip into your urine when your blood glucose levels are persistently above 15 to check for the presence of ketones and if they go above 1 you need to seek urgent medical help because you are at risk of Diabetic KetoAcidosis. A pear drop smell on your breath can be an indication of ketones and symptoms could also include abdominal pain/vomiting or respiratory distress.

You should not have been left with such a high level and no immediate referral for treatment.

You mention that this came about as a result of blood tests at the Rheumatology department. Are you on steroid treatment for a rheumatology issue. Steroids can cause diabetes but also wondering if you are being treated for an autoimmune condition like RA or PMR if you might also be a late onset Type 1 like your mother. Autoimmune conditions are unfortunately gregarious and like to meet up and wreak havoc in the same body and Type 1 is also an autoimmune condition.

Anyway, the priority is to get an urgent appointment to be started on treatment pronto, if you haven't already and get a means of testing for ketones to keep yourself safe because with levels that high you are at risk of DKA and need to be able to monitor that risk.
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Thank you for the very detailed response.
Only had steroids a couple of times so probably not the cause, but yes my rheumatology diagnosis is one of the auto immune ones, clearly my stupid immune system is bored of bothering my joints and thought my pancreas could be next.

Just on the hunt for some keto stix now, we are currently on holiday in the UK, but considering coming home early now.

Not really symptomatic, maybe just a bit in hindsight but nothing that made me very worried.

I've left messages for my GP to get in touch but not heard anything yet. I'm prepared to be pushy, my rheumatology team have unfortunately let me down a few times, " slipped the net" as they put it, so I don't trust them with this.

Also I believe the NICE guidelines are to repeat within 3 weeks, which is not the same as repeat at 2 weeks.

I'm a nurse, who doesn't specialise in diabetes. So know enough to be worried but not enough to really be sure about what's going on.
 
Good to hear you are scouting for Ketostix. Unfortunately some pharmacies don't routinely stock them. They can also be bought online, but obviously that will be a day or two to get to you and I think we would all be happier if you had some today. Really sorry you are away from home on holiday but at least still in the UK. Of course, if you present to A&E wherever you are in the UK and they admit you, it means you are kind of stuck away from home until they are ready to release you and I can't imagine they would let you walk away with an HbA1c of 160+ Really surprising that you don't have obvious symptoms at that level. You must be a tough cookie! I was weeing for England on 114 and drinking water like a fish, literally one pint glass of it after the next. I won't ever forget that raging, unquenchable thirst. Thankfully I didn't develop ketones.... possibly because I drank all that water, but getting up 5-6 times every night to wee and drink meant I was like a zombie after 2 weeks when I eventually went to the docs and got tested. At 160 you are at much greater risk of DKA. I think we have a couple of members who hit 150s but I can't remember seeing anyone get a 160! It is impressive!! .... but not in a good way!
 
rebrascora said:
Good to hear you are scouting for Ketostix. Unfortunately some pharmacies don't routinely stock them. They can also be bought online, but obviously that will be a day or two to get to you and I think we would all be happier if you had some today. Really sorry you are away from home on holiday but at least still in the UK. Of course, if you present to A&E wherever you are in the UK and they admit you, it means you are kind of stuck away from home until they are ready to release you and I can't imagine they would let you walk away with an HbA1c of 160+ Really surprising that you don't have obvious symptoms at that level. You must be a tough cookie! I was weeing for England on 114 and drinking water like a fish, literally one pint glass of it after the next. I won't ever forget that raging, unquenchable thirst. Thankfully I didn't develop ketones.... possibly because I drank all that water, but getting up 5-6 times every night to wee and drink meant I was like a zombie after 2 weeks when I eventually went to the docs and got tested. At 160 you are at much greater risk of DKA. I think we have a couple of members who hit 150s but I can't remember seeing anyone get a 160! It is impressive!! .... but not in a good way!
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This is why I'm trying to find some keto stix, no intention of staying in a hospital away from home. None in any pharmacy near here but can get some tomorrow, a local Boots is getting some. I truly feel fine, quite well tbh having had a couple of days rest from work! The annoying thing is, I've got some keto stix at home!

As my HBA1C indicates that I've been this high for the last 3 months, and haven't had a major problem yet, plus I feel fine, nah perky! My pee and breath do not smell sweet or of ketones, I'm gonna brave it over night. I really do appreciate all the advice given, and am taking it into consideration, tomorrow we shall go home early and stare people in the eye to get what I need.

And yes, I'm deffo a tough cookie. If you saw my list of confirmed diagnosis you would expect a sick person but on meeting me you wouldn't think there was anything going on most of the time! I'm kinda proud of that!
 
I think that is a sensible plan.
I appreciate that your levels have likely been very high for a while but once you hit the tipping point where not enough insulin is being produced, DKA can happen very quickly, although some people have a greater disposition for it than others. Thankfully I don't seem to be prone to it and hopefully you are similar, but better to be safe than sorry.

Sounds like you have a great attitude both in dealing with illness and managing conditions but also to advocate for yourself and appropriate treatment. We all know the NHS is struggling so it is important to learn as much about your condition as you can, so that you can have informed conversations with clinicians and get appropriate referrals when the primary care staff are out of their depth..... Sadly many GPs and practice nurses still believe that Type 1 only develops in children and young adults, so that they insist you must be Type 2 if you are a mature adult. They don't realise how dangerous it could be to misdiagnose a Type 1 as Type 2. We have quite a few people who come to the forum in this situation. Obviously the rheumatology staff have very little understanding of diabetes to discharge you with that reading without seeking an urgent referral for you, but it isn't really their job to know about diabetes and I would say that to a certain extent they have misinterpreted NICE guidance.
 
rebrascora said:
Sadly many GPs and practice nurses still believe that Type 1 only develops in children and young adults, so that they insist you must be Type 2 if you are a mature adult.
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Seems things are changing regarding T2, as reported in the media today:-

www.theguardian.com

‘Alarming’ rise in type 2 diabetes among UK under-40s

Figures underline growing prevalence of conditions related to obesity in younger demographic, says head of Diabetes UK
www.theguardian.com www.theguardian.com
 
rebrascora said:
I think that is a sensible plan.
I appreciate that your levels have likely been very high for a while but once you hit the tipping point where not enough insulin is being produced, DKA can happen very quickly, although some people have a greater disposition for it than others. Thankfully I don't seem to be prone to it and hopefully you are similar, but better to be safe than sorry.

Sounds like you have a great attitude both in dealing with illness and managing conditions but also to advocate for yourself and appropriate treatment. We all know the NHS is struggling so it is important to learn as much about your condition as you can, so that you can have informed conversations with clinicians and get appropriate referrals when the primary care staff are out of their depth..... Sadly many GPs and practice nurses still believe that Type 1 only develops in children and young adults, so that they insist you must be Type 2 if you are a mature adult. They don't realise how dangerous it could be to misdiagnose a Type 1 as Type 2. We have quite a few people who come to the forum in this situation. Obviously the rheumatology staff have very little understanding of diabetes to discharge you with that reading without seeking an urgent referral for you, but it isn't really their job to know about diabetes and I would say that to a certain extent they have misinterpreted NICE guidance.
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My GP surgery has responded, and said that as they didn't request the bloods it's not their problem and referred me back to the rheumatology team. This really isn't acceptable and I shall be taking this up with whi ever I can tomorrow.
I mean, I feel like I'm fairly able to advocate for myself, imagine if some one wasn't?
 
Clare153 said:
My GP surgery has responded, and said that as they didn't request the bloods it's not their problem and referred me back to the rheumatology team. This really isn't acceptable and I shall be taking this up with whi ever I can tomorrow.
I mean, I feel like I'm fairly able to advocate for myself, imagine if some one wasn't?
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That is dreadful but I suspect they do not have access to your blood results which is why they have referred you back. You could call 111 and ask for advice. Just remembered you are not at home.
 
Not all bloods done by the hospital are available to GP, I had bloods done following a faint and head trauma 6 weeks ago, and 10 days later I had my regular Diabetic Bloods, one of these needs repeating, and I mentioned this to the nurse and said they don't get a copy of the hospital bloods.
 
grovesy said:
Not all bloods done by the hospital are available to GP, I had bloods done following a faint and head trauma 6 weeks ago, and 10 days later I had my regular Diabetic Bloods, one of these needs repeating, and I mentioned this to the nurse and said they don't get a copy of the hospital bloods.
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I've been through this scenario re bloods with the GP surgery before. Previously I know mine had access to the system where hospital blood results are kept, but weren't alerted to them being available and as they routinely used a different electronic patient record system, it is un reasonable to think they could just check the other for every patient, just in case, before ordering bloods.

However they can check when the patient says there are results available. I've had this discussion before with them, when they just wanted to repeat bloods because it was easier for them, had to insist and talk about unnecessary invasive procedures. Systems might have changed since then, but I can only assume they have done this as the message they sent gave the name of the Dr who requested them and the date taken, which I didn't tell them.
 
Funny how diagnoses seem to happen at birthdays or Christmas for many of us. My official diagnosis of diabetes happened the day after my birthday and the day before Valentines day. I didn't get to celebrate either with nice food or chocolate! 🙄
 
rebrascora said:
Funny how diagnoses seem to happen at birthdays or Christmas for many of us. My official diagnosis of diabetes happened the day after my birthday and the day before Valentines day. I didn't get to celebrate either with nice food or chocolate! 🙄
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If one more person asks me how I'm planning on celebrating I might scream! Clearly the cake and champagne is on hold this year.

Hoping the phlebotomist sings happy birthday to me, that would really make me laugh!
 
No reason why you can't have the champagne.... that is almost zero carbs.... and a small chocolate eclair is only about 10g carbs, so that is a popular treat for those celebrating a special occasion.
 
rebrascora said:
No reason why you can't have the champagne.... that is almost zero carbs.... and a small chocolate eclair is only about 10g carbs, so that is a popular treat for those celebrating a special occasion.
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Champagne not on the banned list? Really? That's amazing! And has cheered me right up. I have so much to learn!

And a chocolate éclair? Today is going to be better than I thought. Thank you!
 
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