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Seriously underdiagnosed Type 2

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

MikeWeatherley

New Member
Relationship to Diabetes
Type 2
Hi,
I was diagnosed a couple of years ago, but put on diet-control. However, my annual 14 hour fasting blood glucose - tested by the local hospital - was always 9-10. My GP and practise diabetic nurse (who was also a diabetic) were not worried about that, though, as they both said that my HbA1C result was 6 or below - so that was okay. I'd always doubted the logic of their complacency, as it makes no sense that a fasting blood glucose can be 9-10 if the 'average over the last 3 mnoths' can be as apparently low as 6.🙄 Anyway, for my last annual check, before Xmas, the diabetic nurse was off on long-term sick-leave, as she'd had a series of bad strokes, and will not now be returning to work. As a result, I was seen by a 'locum' diabetic nurse, who was so concerned about my blood glucose being 9-10, that she gave me a blood glucose monitor to take home (I'd never had one before). I started measuring it myself, and found that it was always a minimum of 9-10, going as high as 14 after meals.

Then I started to wonder: I was born anaemic - it's Spherocytosis, a form of heamolytic anaemia - which means that my blood cells don't last as long as 3 months, as in most people. So I wondered about the validity of the HbA1C test. Surely, if my blood cells don't last 3 months, then they won't accumulate as much glucose, and will be giving a false-low result for my long-term blood glucose? I mentioned this to my GP - who had my medical history - including the anaemia - in front of him, but he insisted the HbA1C was the thing to go on. I also mentioned it to the - by now - new permanent diabetic nurse, who had also not been made aware in her training of any complications involving anaemia. However, she did arrange for an extra blood test with the hospital - Fructosamine - to double-check. This is a non-routine test, and it measures average blood glucose over the last two weeks (where it's attached to blood plasma proteins, rather than red blood cells). The result came back 1.5 times the normal upper reading - equivalent to blood glucose of 9-10, confirming all my actual glucose measurements.

With the nurse's help, I then persuaded my GP that I needed to go onto Metformin tablets (which he was still reluctant to prescribe) and the results were dramatic. I'm now on one tablet three times a day, and my blood glucose is 5-6 before meals and 8-10 after. I would therefore like to urge all Type 2s who are also anaemic to ask their GP for a Fructosamine test, as - otherwise - they may be seriously under-diagnosed, and may be sleep-walking towards blindness. My annual retinal scan had already noticed the first signs of retinal damage the previous year, but my GP had not been concerned, as the HbA1C was okay. But actually, it wasn't.

Regards,
Mike
 
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Hi Mike

Thanks for sharing your experiences and welcome to the forum. I've moved your post into a thread of its own so that it doesn't get lost.

M
 
Hi Mike, welcome to the forum 🙂 I am very surprised that your doctor and nurse were not aware of the way anaemia can affect the validity of the HbA1c test. If you look at the bottom of Diabetes UK's page on the test ( http://www.diabetes.org.uk/en/Guide.../Glycated_haemoglobin_HbA1c_and_fructosamine/ )it clearly states that a fructosamine test should be done if anaemia is present.

Good for you for sticking with it and getting the tests and treatments you need, and for spotting and questioning the anomaly of your previous tests 🙂
 
Hi Mike.

I have read about the fructosamine test for aneamic patients. It's a shame your GP was so pig-headed about his own version of reality.🙄
When the Hba1c relies on long lived red blood cells and your are short lived, you'd think it would be obvious to a medically trained professional.

I'm pleased you managed to persuade the nurse or you may have ended up with some very serious complications. Well done for that. 🙂

It's something that a few of our members may want to review. I'm happy to have a low Hb and Im not going to let anaemia take any of the credit, but it is a very serious issue to keep in mind if someone else has higher BGs than their Hb suggests.

Rob
 
Hi Mike, Welcome to the forum 🙂. I am shocked and dismayed by your GPs attitude. You are correct if anyone suffers from a disease that makes their RBC last less than the average 12 weeks then the HbA1c is not an accurate measure of control... I would put a complaint into the practice manager so that is does not happen again.
 
Welcome to the forums MikeWeatherley 🙂

Well done for being stubborn with your GP!
 
Hi Mike - what they said, especially Carol (cazscot)

Thank the Lord for a decent nurse.

I agree, it is utterly logical, but I certainly didn't know it. And I've therefore never thought to ask anyone on the forums I inhabit, if they are anaemic, either if they are struggling/doubtful.

So very useful indeed, and if Mike everydayupsanddowns hasn't already posted a link to this thread 'somewhere else' - then I will !
 
Hi Mike - what they said, especially Carol (cazscot)

Thank the Lord for a decent nurse.

I agree, it is utterly logical, but I certainly didn't know it. And I've therefore never thought to ask anyone on the forums I inhabit, if they are anaemic, either if they are struggling/doubtful.

So very useful indeed, and if Mike everydayupsanddowns hasn't already posted a link to this thread 'somewhere else' - then I will !
Which is why I am reading it! I did know, it was mentioned ages and ages ago but one tends to forget, so thanks for reminding us! I am now thinking of someone in particular it may apply to.
 
Welcome to the forum Mike 🙂 So sorry to hear the trouble you had with your GP, glad to hear you stuck with it and got through to them!
 
Hi everyone,

Thanks for the positive comments. And I certainly would have lodged a
complaint with the medical practise had my GP not caved-in about letting
me start on Metformin. But I think everyone there - certainly all the nurses,
and probably the other GPs - are now aware of my case, and so it should
not recur with anyone else. They have all been very helpful since the
problem was highlighted. No doubt they were only too aware that I *could*
have lodged a formal complaint after the misdiagnosis. The reason I wanted
to mention it here is to reach a wider audience, as there are doubtless a
lot of other GPs (& diabetic nurses) who are similarly unaware of the problem.
So don't anyone here be too afraid to ask them about it.

Actually, I did suspect that my GP's general reluctance to prescribe anything
was linked to saving the NHS money. He has a bit of a history of that. It was
actually the previous diabetic nurse who persuaded him to put me on tablets
for high blood pressure a couple of years ago, when he thought my blood
pressure was (in his words) 'normal'... So, knowing how having high blood
pressure & diabetes together is even more dangerous, that's why I wasn't
going to let go about being put on tablets for the diabetes. And lo-and-
behold, when I took my new prescription into Boots, prepared to pay for it
(as I had been doing for the blood pressure tablets) the African student
doctor behind the counter looked at it and said: "If you're diabetic, you
shouldn't be paying for your prescriptions". Now, neither the GP nor the
practise nurse had mentioned that, and the annoying thing is, I would have
been perfectly happy to pay for the Metformin, for the benefit I would get
from it. But diabetes is one of the list of conditions which qualify you for
free prescriptions (or in other words, the government/NHS pay for them).
But it left a suspicious thought in my mind that the reason my GP was so
reluctant to prescribe it for me was as much to do with saving money for
the local health authority/his practise as his own incompetence/ignorance...:(

Then, of course, I logged into Diabetes UK website, and read in the news
section how Metformin/Insulin prescriptions are at a record level, and are
costing the NHS so much money. As you'd expect, the government minister
talked only about the need to get costs down, while the Diabetes UK comment
was about how urgent it was to prescribe these drugs, as a preventative
measure. That's because it of course costs the NHS far more to treat
somebody who's lost their eyesight or legs than to supply them with
preventative medicine.😎 But of course, in the short-term, penny-pinching
mentality of the current establishment, cutting costs today (rather than
tomorrow) is all that matters. Which is another reason why I was persistent
about getting my Metformin prescription now, because, if it's this hard to
persuade a reluctant GP to give you the tablets you need already, you can
only shudder to think how impossible it will be once the planned cuts/re-
organisation of the NHS take effect in years to come, with GPs being even more
responsible for the money they spend on their patients...😱

This isn't intended to be a political comment, but the fact is, if the government
really wants to save the NHS money in the long-term, then the way to do it is
to allow *more* preventative medicine (in the form of drugs) rather than less,
since the alternative will result in more expensive hospital/nursing-home
treatment for us all in the future). The logic just speaks for itself.😉

Regards, Mike
 
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Welcome Mike! Thanks for posting that, I hope it is useful for lots of others too. Well done for battling with your GP to get your prescription 🙂
 
I'm glad you got what you need in the end and well done for keeping after them. Your comment about preventive medicine is right on the money. It's so obvious to everyone but the Government.
 
Thank you for sharing your experiences. Sometimes it is hard to get doctors to see what is right before their eyes. It took me ages to get diagnosed and even then it was because of a health check that had been happening at work and half of the work had been done for my doctor in a way he couldn't argue with...
 
Hi again,

Yes, it was the occupational nurses at work who originally noticed
both my high blood pressure and high blood sugar, too. They told me
to go see my GP (who said the BP was 'normal') and then told me to
go back again after I'd told them what he said. Of course, the nurses
at work have a vested interest in not having anyone croak at work
from a heart attack (it's embarrassing for the company - and expensive
on the life-insurance) so I guess that made them extra persistent. 😉

It's interesting, but I've got another perspective on the subject of
NHS reluctance to prescribe medicines, as my employer is actually
a drugs company. No names, no pack-drill (I'm not advertising) but
15 years ago, we developed an Alzheimer's drug which was a virtual
cure, allowing people to remain at home and live a normal life. But
NICE (or 'Not-So-Nice', as I prefer to call them) refused to allow GPs
to prescribe it on the NHS, due to cost. I think that a single tablet
a day would have been about ?1. That's ?7 a week. And if you
compare that with having to put someone in a nursing-home, because
they can no longer even remember their own name, you're looking at
almost 100x that amount. I mean, the facts speak for themselves,
yet try getting NICE to see reason...:(

Anyway, the moral of this story is to be persistent if you think that
something in this world isn't right. We would all like to assume that
the so-called professionals who are tasked with looking after us
not only care about us but know what they are doing. Unfortunately,
it's not always true, but then, having chatlists like this can help to
spread awareness of any problems. 🙂

Regards,
Mike
 
Hi Mike, welcome to the forum. I'm sorry to hear about the frustration. I can't believe a medical professional didn't think anaemia would have any influence on HbA1C tests! Stories like these make me so angry. I'm so glad you stuck with it and managed to convince them, good on you!
 
Mike

ISTR that according to the British National Formulary the cost of metformin is approximately 1p per tablet.
 
Mike

ISTR that according to the British National Formulary the cost of metformin is approximately 1p per tablet.

Patti,

That's scandalous 🙂 And of course, I'm on three of the little gadgets
every day, so it must amount to a fortune... upwards of ?10 a year😱
But then, my GP was probably calculating that, once I'd gone onto free
prescriptions for Metformin, that would automatically give me free tablets
for the blood-pressure as well - a further cost. Of course, he was happy
to prescribe me Buscopan tablets for my gall-stones last year (another
side-effect of the anaemia) at ?7.20 a packet, when you can get them in
Tesco for a couple of quid. Hmmm... There definitely seems to be a
theme developing here 🙄

Regards,
Mike
 
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Ooops... just checked, they are actually 3.25p each! LOL!

But yes, you're right, as soon as you are on meds for diabetes it does make all your scripts free which will indeed cost the state money, but presumably you are paying NI?
 
Yeah sure. Though I'm self-employed, so I pay my Class II NI contributions
quarterly. Anyway, I've payed them all my life before getting ill. The thing
is, the NHS is funded through general taxation, not just the NI scheme.
Though I believe the amount of new road-building/repair per year in no way
accounts for all the money collected through road-tax, with the surplus
just going into general taxation. So all drivers are also funding the NHS, in
addition to paying their NI. It's also reckoned that smokers fund their
eventual treatment for lung-cancer with the tax they pay on fags. Which
has always seemed poetically satisfying to me. The next thing to watch-out
for will be a tax on chocolate & cakes for diabetics...:D

Regards,
Mike
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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