Negative type 1 blood result

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J

Jan71

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Good morning everyone. Hope you are all well. I'm a little bit anxious as my husbands blood results showed negative for type 1 but now been asked to do a CT Scan due to these results. My heads going into overdrive as now thinking the worst! Is this a normal procedure? Looking forward to hearing your thoughts and experiences. Many thanks. J xx
 
Hi @Jan71 Your husband had lost a lot of weight, hadn’t he? My guess is the CT scan is to check his pancreas is ok. It’s not uncommon to do this in cases where diagnosis is in doubt. It can give extra information. There’s a type of diabetes called Type 3c which is associated with pancreas damage rather than being auto-immune like Type 1.

I can understand your worry, but try to think of it as a good thing. He’s getting very good care, they’re being thorough, and they’re making sure everything is ok. If anything needs attention, finding it early is good news as it can then receive prompt treatment. If there’s nothing there to find, then you and he get reassurance and the doctors can narrow down his diabetes type/diagnosis.
 
Hi. This sounds unusual but not a problem. If the doc only did a GAD test for T1 that is not enough as GAD anti-bodies are not the only cause of T1 and a negative result doesn't mean much. If they also did a C-Peptide test then that can be more useful. Hopefully the CT scan will help the diagnosis.
 
Jan71 said:
Good morning everyone. Hope you are all well. I'm a little bit anxious as my husbands blood results showed negative for type 1 but now been asked to do a CT Scan due to these results. My heads going into overdrive as now thinking the worst! Is this a normal procedure? Looking forward to hearing your thoughts and experiences. Many thanks. J xx
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It sounds like your husband is in good hands and that they are keen to get to the bottom of his weight loss. I can understand why your head is going into overdrive but try to think of further tests as useful. Keep in touch and let us know how you get on.
 
They told me if my results came back negative i'd be scanned. Its normal proceedure, try not to worry (easier said than done)
 
Thanks everyone. He has actually gained weight since his diagnosis as eating more protein etc which I'm sure is a good sign. Today has been a bad day starting with his phone alerting him at 5am of low levels. So up eating biscuits and orange juice until brought back up. Fine all day until around 7pm when dipped dramatically to below 4! After eating sweet things to bring up it shot back down. Ended up calling 111. After a 40 min telephone conservation which involved stating everything he ate throughout the day it turns out he hadn't been eating enough carbs!!! On a constant roller coaster at the moment. I'm wondering what he will end up doing as he isn't type 1??? This forum is helping me though so thanks again
 
I don’t think you’ve mentioned what insulins he’s on and what his regime is @Jan71 ? If he’s on fixed doses of bolus/fast insulin before meals, he must eat the right amount of carbs for that insulin each day. If he dropped after his evening meal, he didn’t eat enough carbs for that meal. On fixed doses the carbs can’t be varied. The fixed dose will deal with X amount of carbs and too few will mean a hypo, sometimes dramatically so.

Also, has he got the Low alarm set at 5.6 on his Libre? That helps catch any drops.

Whatever type of diabetes he has, if he’s on insulin the same rules apply. When you say “rollercoaster”, do you mean emotionally or do you mean his blood sugars?
 
Hope the scan provides some useful information @Jan71

Diagnosis with diabetes, and getting the classification right can be trickier than one might expect. There are various niche varieties, ams there aren’t really simple straightforward checks that definitely show one way or another - it always ends up being a mix of results and clinical presentation.

Some forum folks haven’t got a definitive classification of diabetes type many years after getting diagnosed!
 
You have to take it with pinch of salt. I've had it 3 out each way. One on each arm one was higher, one lower. Don't forget libra algorithm is interfering. I use libra app and diabox, diabox just tells you number from libra no algorithm. Was .7 out between them last night. I prefer the raw number, you can see what's going on without libra app lag.
 
A positive for antibodies is highly accurate confirming type 1 (with a few rare exceptions).
A negative for antibodies isn’t so accurate for eliminating it ie you can be type 1 and not have antibodies showing.

Now that may be because the test only aimed at a specific antibody (eg GAD) and not a less common one that might be the issue or once the beta cells are destroyed there’s no need for the antibodies any longer or some other explanation but it is frequently discussed that is not an absolute result. That’s one reason they also do cpeptide levels and a fuller panel of less common antibodies.

Of course a person might not be type 1, they might type 2 with very high insulin resistance perhaps or a type 3c that has sustained damage to the pancreas eg by drugs, surgery, disease, accident etc. However I feel it’s important to get as much info as possible at diagnosis if it’s unclear as it can be stubbornly difficult to get reclassified later. In the short term it may not appear to matter if you’re getting insulin regardless but access to specialists and to nhs technologies are all dependent to a significant degree on type. Also the realistic treatment options could be significantly different if you are type 2; eg diet will never put type 1 in remission where medication is no longer needed but it very well might a type 2 where insulin is still high but hugely resistant.
 
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