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Off mess

Nurse rang me and said they don't do glucosamine tests. She said if my readings could be false be then could also of been at the diagnosis. I am so depressed right now lying in bed crying
 
I felt so tired today been a while since felt that tires or that down do you think the metformin has been helping everything. I came of social media won't speak to anyone and just crying
 
Tanmc said:
I felt so tired today been a while since felt that tires or that down do you think the metformin has been helping everything. I came of social media won't speak to anyone and just crying
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Hugs. There are other tests they can do besides glucosamine [Edit: I meant to say fructosamine] or HbA1c. The Glucose Tolerance Test (GTT) would seem the next step.

It is absolutely possible to get an accurate diagnosis and good treatment plan. Please keep posting and we will help you through this.
 
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I think you mean the Fructosamine test rather than glucosamine. My surgery doesn't do them either. Very few do. Did you mention an OGTT (the test where you have a glucose drink).?
 
Bluetit1802 said:
I think you mean the Fructosamine test rather than glucosamine. My surgery doesn't do them either. Very few do. Did you mention an OGTT (the test where you have a glucose drink).?
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Correct, Fructosamine testing is not usually done and it's not necessary because the OGTT is fine for this purpose. I had the OGTT done at the start and it wasn't even necessary in my case. At a pinch, you can do one at home, but it's better done in the lab.

As an aside, Fructosamine is used to test for diabetes in dogs and cats as their systems works a bit differently to ours.
 
Hi @Tanmc

To summarise the info given so far in your thread:

Yes, you can get reliable testing of your blood sugars even though the HbA1c is not reliable because you have pernicious anaemia to a degree that you need injections to treat it.

The easiest way is to do a fingerprick test at home. A fasting test first thing in the morning is recommended. Also, a test before a meal and two hours after is also very useful. You could do one of these tests at the next meal.

Your nurse or doctor should immediately request an OGTT (see above posts). This is done in the lab and takes at least two hours to do.

Your nurse should have explained on the phone that an OGTT is needed, not a fructosamine test at this time. I'm sorry to hear she did not. They make mistakes sometimes.

Please let us know if you are still upset, because I believe we can help you feel more reassured about what is happening.
 
Jenny15 said:
Hi @Tanmc

To summarise the info given so far in your thread:

Yes, you can get reliable testing of your blood sugars even though the HbA1c is not reliable because you have pernicious anaemia to a degree that you need injections to treat it.

The easiest way is to do a fingerprick test at home. A fasting test first thing in the morning is recommended. Also, a test before a meal and two hours after is also very useful. You could do one of these tests at the next meal.

Your nurse or doctor should immediately request an OGTT (see above posts). This is done in the lab and takes at least two hours to do.

Your nurse should have explained on the phone that an OGTT is needed, not a fructosamine test at this time. I'm sorry to hear she did not. They make mistakes sometimes.

Please let us know if you are still upset, because I believe we can help you feel more reassured about what is happening.
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I did a morning reading before got out of bed and it was 8.8
 
Tanmc said:
I did a morning reading before got out of bed and it was 8.8
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Hi @Tanmc, good to hear from you again. It's great that you took a fasting blood glucose reading. That will help when you see your GP, and I think it would be good to see them as soon as soon as you can. If you can take a few more fasting and other readings like those we discussed earlier in the thread that will help, too.

At 8.8 your fasting test is above the level of 7.0 that is considered diabetic. The good news is that you are not above the line by much, so that can make the goal of getting it down under 7.0 a bit easier than if it was higher.

I believe the decision to stop your meds may have been based on HbA1c blood tests that were inaccurate because you have pernicious anaemia. I think the easiest, quickest way forward is to make an appointment with your GP to discuss all this. If your GP sends you for an OGT test:

https://www.diabetes.co.uk/oral-glucose-tolerance-test.html

...then once they get that test result they will know whether to discuss if you want to go back on medication now and how much. There are some great food tips on this website and people are only too happy to help with that side of things.

Depending on what is happening with the management of your pernicious anaemia, I think future decisions about reducing or stopping meds may have to be based on further OGT tests, or maybe your home testing, I don't know. Your doctor will be able to discuss this with you.
 
Jenny15 said:
Hi @Tanmc, good to hear from you again. It's great that you took a fasting blood glucose reading. That will help when you see your GP, and I think it would be good to see them as soon as soon as you can. If you can take a few more fasting and other readings like those we discussed earlier in the thread that will help, too.

At 8.8 your fasting test is above the level of 7.0 that is considered diabetic. The good news is that you are not above the line by much, so that can make the goal of getting it down under 7.0 a bit easier than if it was higher.

I believe the decision to stop your meds may have been based on HbA1c blood tests that were inaccurate because you have pernicious anaemia. I think the easiest, quickest way forward is to make an appointment with your GP to discuss all this. If your GP sends you for an OGT test:

https://www.diabetes.co.uk/oral-glucose-tolerance-test.html

...then once they get that test result they will know whether to discuss if you want to go back on medication now and how much. There are some great food tips on this website and people are only too happy to help with that side of things.

Depending on what is happening with the management of your pernicious anaemia, I think future decisions about reducing or stopping meds may have to be based on further OGT tests, or maybe your home testing, I don't know. Your doctor will be able to discuss this with you.
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I have a blood test 13th July. I did another reading after breakfast and that was 8 xx pernicious anaemia is controlled with regular injections xx
 
Tanmc said:
I have a blood test 13th July. I did another reading after breakfast and that was 8 xx pernicious anaemia is controlled with regular injections xx
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When you are having the injections for your anaemia, the timing of your blood test (if it is another HbA1c) is crucial. If it is shortly before your next injection is due, your anaemia may be returning as you are ready for the next injection. Do you know which blood test it is? Is it an OGTT? I hope so.
 
Is this the best scenario then. It's conflicting information. One nurse said I would of had a high reading when diagnosed as I was due my injection of B12 the following week which I understood, then another nurse said it would of given me a lower reading which then confused me. I accepted my illness after weeks of tears all I need now is the right information so I can manage it?
 
Tanmc said:
Is this the best scenario then. It's conflicting information. One nurse said I would of had a high reading when diagnosed as I was due my injection of B12 the following week which I understood, then another nurse said it would of given me a lower reading which then confused me. I accepted my illness after weeks of tears all I need now is the right information so I can manage it?
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It is a fairly reasonable assumption that your HbA1c of 38 was inaccurate, based on your original diagnosis and all your home testing. That is my opinion, and the best test for you is an OGTT. It is a pity your nurses are giving conflicting advice, but an OGTT would solve it.

All I can suggest is you follow a diet suitable for T2 diabetes as best you can, and that means reducing carbs and keeping records of what you eat and what your levels are before and after (2 hours after) you eat. If your levels rise more than 2mmol/l from before to after, there were too many carbs in that meal for your body to cope with, giving you the chance to reduce them further. You can show these records to your nurse. Every little bit of evidence will help.
 
Tanmc said:
Is this the best scenario then. It's conflicting information. One nurse said I would of had a high reading when diagnosed as I was due my injection of B12 the following week which I understood, then another nurse said it would of given me a lower reading which then confused me. I accepted my illness after weeks of tears all I need now is the right information so I can manage it?
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I don't see the need for HbA1c tests that may or may not be reliable depending on when they are done and when your B12 injection is given, when the OGT test is always reliable, is cheap and is almost as convenient and easy to do. Another advantage is that it could be done, and treatment changes put in place within days, not weeks/months. I wish you well.
 
Hi everyone I have been off metformin and have been living normal life eating what I want as instructed by nurse so she could get a true reading. My HBA1C came back and I was 45 any thoughts on this I am been retested again in 10 weeks
 
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