So update is after today’s appointment that I’m being referred to endocrinology (may take a while) in the meantime, I’ve been prescribed a very low dose of slow release metformin just in case. More bloods will be taken in about 8 weeks. So appreciative to be listened to and have agreement that my self testing didn’t make sense with the Hb1ca result. I’m in no way saying I don’t have diabetes but it does seem odd to go from 36 to 58 in 18 months and no family history. Hopefully will get to bottom of things eventually! And if nothing else I will have clarification one way or another. was told to keep testing some mornings, some before and after lunch, some before evening meal and after and some bedtime for the endocrinologist to look at.
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Hb Variants
- Thread starter Sous123
- Start date
And so it continues! Referral has been rejected. Ongoing between referral team and surgery, referral saying surgery can do tests, surgery what tests should we do!
In the meantime had private blood tests done (all above board and UKAS accredited lab used) three tests done, results of two back. HbA1c 22! Fasting glucose 5.1 still waiting for fructosamine result. HbA1c seems strangely low although my surgery has commented that I used to be in the 20’s prior to the January 2023 result of 36. If nothing else I think it shows that the hbA1c test appears unreliable for me. We await the fructosamine test results, who knows they could be high and that would confuse the situation even further!!
In the meantime had private blood tests done (all above board and UKAS accredited lab used) three tests done, results of two back. HbA1c 22! Fasting glucose 5.1 still waiting for fructosamine result. HbA1c seems strangely low although my surgery has commented that I used to be in the 20’s prior to the January 2023 result of 36. If nothing else I think it shows that the hbA1c test appears unreliable for me. We await the fructosamine test results, who knows they could be high and that would confuse the situation even further!!
- Relationship to Diabetes
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Ugh! That sounds really frustrating for you @Sous123
Hopefully the fructosamine will provide a helpful benchmark against which to understand the apparent discrepancy between fingersticks and HbA1c?
Thanks it is, but prepared to do battle over my own health. I’m so grateful for your response, this website is without doubt very helpful and it’s great to be able to write down your frustrations and others to give their advice and their own experiences. My concern has been, and still is, not that I have diabetes because I’m fully committed to dealing with that but being over prescribed medications that I may not need. We continue to fight another day, onwards and upwards! Take care everyone and have a good day.
- Relationship to Diabetes
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Fingers crossed you get some clarity and understanding going forwards. And don’t have different HCPs refusing requests from each other next time!
Had an update appointment a few weeks ago, since there were already doing a follow up HbA1c test in march they agreed to add on fasting plasma glucose, fructosamine and gad test, previously I had said I was waiting for a private blood test for fructosamine test which came back as 245 which they said was normal (anything under 300 normal) all private tests said I didn’t have diabetes or pre diabetes. Some results back from nhs, fasting glucose was 4.8, they confirmed they couldn’t get a result on the HbA1c (think they used a lab at a different hospital) fructosamine has come back at 256 which they say is over normal at their cut off point is 236! At the same time had a private test with a lab who assured me no inference with result and HbA1c was 34 which I relayed to my doctors surgery and they asked me to send it over so it’s now on my medical notes. Still waiting for the gas test results and phone call again from surgery next week. I appreciate just being able to get it off my chest here and appreciate everyone for listening. Who knows what we would do without the support of this forum. I may not post on this website, apart from this thread but do read the posts and experiences of other members x
rebrascora
Well-Known Member
- Relationship to Diabetes
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Goodness, you are having a real runaround with this. It looks to me like you probably were not and perhaps never have been diabetic but have an anomaly with your blood causing the HbA1c testing to be inaccurate or inappropriate. It must be very frustrating. It sounds like you are doing the best you can to improve your health though through diet and paying for additional testing. It shouldn't be necessary but at least as you say, your GP practice staff are now looking at the bigger picture and listening to you and not just palming you off.
I think it may also be helpful to others here whose HbA1c results don't make sense, to read your results here so thanks for posting them as I am sure we can all learn something from your situation.
I think it may also be helpful to others here whose HbA1c results don't make sense, to read your results here so thanks for posting them as I am sure we can all learn something from your situation.
I think it is important to note that when we say things like " It looks to me like you probably were not and perhaps never have been diabetic", that we have no medical qualifications and this is just a layman's point of view
Whilst it may be true, we should take care not to mislead a new member into believing we know more than someone with years of study.
Whilst it may be true, we should take care not to mislead a new member into believing we know more than someone with years of study.
Thank you, I appreciate your comments. If even one person can he helped by my situation then it will all be worth it. If I hadn’t started monitoring by finger pricking glucose and the free libre trial I would never have known any different to what they were telling me and would no doubt been on a few medications by now (so monitoring your own blood glucose at home is definitely worth it for many reasons regardless that nhs says type 2 don’t need to test unless on certain medications) if something doesn’t feel right, go with your gut instincts. Although challenging the nhs is exhausting you have to continue to push through if you can. Wishing everyone a lovely weekend, the sun is shining, keep on smiling. X
Didn’t feel “misled” at all