In limbo: waiting for antibody test result

[TwilightMidna]

Hi everyone,

I'm a new member but I have been reading this forum for over a year now. This is probably going to be a bit rambly and jumbled, but I have to talk to someone who understands. To preface this, I have always been at the lower end of a "healthy" weight, and am now officially underweight. Hopefully, I have successfully managed to add any relevant numbers to my signature.

Last summer my HbA1c was extremely close to the diabetic level. Having read here about lowering carbs, I cut my daily carb intake to around 130g. I also started walking more every day. Mid-june this year I had a few days where I felt rough (weak, tired, absolutely ravenous even though I had just eaten) so I thought I would check my blood glucose. I was convinced that my blood sugar would be low (I didn't really understand how diabetes worked at that time, as I "only" had prediabetes and had not been given any guidance, besides don't eat sugar). I was shocked to see that my blood sugar was 7.2. I thought, okay, I'm probably still prediabetic and just having a bad day. I continued to test over the next few days and to my horror I saw even higher numbers; the highest waking being 10 and the highest postprandial being 14. After that reading of 14 I stopped testing because it was making me so stressed out and anxious about eating anything, and I cut my carbs even more (increasing my fat and protein intake).

Two weeks later I had my HbA1c test. It came back as 58. I get a call from my doctor and he says that as I'm "quite slim" we should check for type 1 (I'm assuming LADA rather than "regular" type 1). I realise I have lost ~10% of my body weight since the start of the year (although I don't realise this until after my call finishes with the doctor). I see the diabetic nurse for a follow-up and she tells me she will be extremely surprised if the antibody testing doesn't come back positive, but that they want to wait for the test result to determine which medication to put me on. Pressumably, this is because my numbers aren't as alarming as they were (waking: 5-6, postprandial up to 9, have had a couple a bit higher than that), now I have lowered my carb intake. As a result, I've been in limbo for the past three weeks. I'm having a really hard time just sitting here watching my body waste away. Does anyone know how long the anti-GAD result takes to come back?

Whether it's type 1 or type 2, I am thinking that I will have to start medication as I don't seem to be able to hold on to or put on weight on a) a lower carb diet, and b) without aggravating my blood sugar. The nurse mentioned that if the antibodies come back negative they may send me for a scan of my pancreas. I'm not really sure why I'm writing all of this or what kind of response I need, but thank you to anyone who reads it. Hopefully I'll have some answers soon...

 

[Tdm]

Not knowing is probably the worst.
If you are t1 you will need insulin sooner or later. I'd suggest sooner has its advantages. I know i remember hoping i didn't need the pancreas scan, but i think t1 / lada is more likely. You have quite low a1c still, so t1, so thats good...probably helped by the low carb.
It will be insulin for t1. Its not too bad, you get used to the injections really quickly, then if you want you can go normal carb which will also help you put on weught.

 

[TwilightMidna]

Not knowing is probably the worst.
If you are t1 you will need insulin sooner or later. I'd suggest sooner has its advantages. I know i remember hoping i didn't need the pancreas scan, but i think t1 / lada is more likely. You have quite low a1c still, so t1, so thats good...probably helped by the low carb.
It will be insulin for t1. Its not too bad, you get used to the injections really quickly, then if you want you can go normal carb which will also help you put on weught.

Thank you so much for your reply. You have no idea how much comfort your understanding and encouragement has brought me. Yes, not knowing is really hard! Hopefully I’ll hear something soon. I’ll keep you updated. Thank you again x I just noticed you have LADA - is there somewhere I can read your experiences with getting diagnosed and what lead up to that?

 

[Lucyr]

How long ago did you have the test? Sorry if you mentioned it, I got lost in the timeframes.

I had one a few months ago, I waited a month before I called for the results but they were back by then. If the results are positive that makes an easy conclusion but if negative it can take a while.

As I said, I had mine a couple of months ago, and appointment to decide what it means and whether any further tests are needed is the end of March.

 

[TwilightMidna]

How long ago did you have the test? Sorry if you mentioned it, I got lost in the timeframes.

I had one a few months ago, I waited a month before I called for the results but they were back by then. If the results are positive that makes an easy conclusion but if negative it can take a while.

As I said, I had mine a couple of months ago, and appointment to decide what it means and whether any further tests are needed is the end of March.

Hi! Thank you for sharing your experiences - that’s so helpful and it’s good to talk with others who understand. I knew I would forget to mention one detail or another! I had the antibody test on 13th July, so I’m still within a month. My GP surgery use an app where the results appear when they are back, so I’m just keeping an eye on that. Good to know it could only be one more week or so before I hear. Thank you! I will try to read back on your posts and catch up on your journey x

 

[Inka]

Welcome @TwilightMidna 🙂 Don’t let the LADA worry you. It’s just adult-onset Type 1, which comes on more slowly than Type 1 in children. In fact, my consultant rarely uses the term. If you are Type 1/LADA then you’d be better off having insulin. Early introduction of insulin can support remaining beta cells, extending their life.

In your position, I’d be buying some Ketostix (urine dipsticks to test for ketones). I’d also avoid low carb, eat healthily and monitor your blood sugar very closely, particularly after meals. This is because eating low carb masks Type 1/LADA and can delay you getting the treatment you need. You don’t need to wait until the antibodies test comes back.

Contrary to popular belief, Type 1 isn’t just a childhood condition. More people are diagnosed in adulthood and your age is a common age to be diagnosed. You’re not alone 🙂

 

[Tdm]

Yes, to be honest 1 normally say type 1...i only used lada on here as shorthand for 'not been dealing with this since childhood'
What i would say is try not to think too much about what will happen til you have your results as you will run yourself ragged thinking about all the possible outcomes.
Whatever the result is, whatever the treatment options, within a couple of months is will be on its way to being second nature.
Its often a bit tough at first, but it gets easier

 

[kellie01]

Hi everyone,

I'm a new member but I have been reading this forum for over a year now. This is probably going to be a bit rambly and jumbled, but I have to talk to someone who understands. To preface this, I have always been at the lower end of a "healthy" weight, and am now officially underweight. Hopefully, I have successfully managed to add any relevant numbers to my signature.

Last summer my HbA1c was extremely close to the diabetic level. Having read here about lowering carbs, I cut my daily carb intake to around 130g. I also started walking more every day. Mid-june this year I had a few days where I felt rough (weak, tired, absolutely ravenous even though I had just eaten) so I thought I would check my blood glucose. I was convinced that my blood sugar would be low (I didn't really understand how diabetes worked at that time, as I "only" had prediabetes and had not been given any guidance, besides don't eat sugar). I was shocked to see that my blood sugar was 7.2. I thought, okay, I'm probably still prediabetic and just having a bad day. I continued to test over the next few days and to my horror I saw even higher numbers; the highest waking being 10 and the highest postprandial being 14. After that reading of 14 I stopped testing because it was making me so stressed out and anxious about eating anything, and I cut my carbs even more (increasing my fat and protein intake).

Two weeks later I had my HbA1c test. It came back as 58. I get a call from my doctor and he says that as I'm "quite slim" we should check for type 1 (I'm assuming LADA rather than "regular" type 1). I realise I have lost ~10% of my body weight since the start of the year (although I don't realise this until after my call finishes with the doctor). I see the diabetic nurse for a follow-up and she tells me she will be extremely surprised if the antibody testing doesn't come back positive, but that they want to wait for the test result to determine which medication to put me on. Pressumably, this is because my numbers aren't as alarming as they were (waking: 5-6, postprandial up to 9, have had a couple a bit higher than that), now I have lowered my carb intake. As a result, I've been in limbo for the past three weeks. I'm having a really hard time just sitting here watching my body waste away. Does anyone know how long the anti-GAD result takes to come back?

Whether it's type 1 or type 2, I am thinking that I will have to start medication as I don't seem to be able to hold on to or put on weight on a) a lower carb diet, and b) without aggravating my blood sugar. The nurse mentioned that if the antibodies come back negative they may send me for a scan of my pancreas. I'm not really sure why I'm writing all of this or what kind of response I need, but thank you to anyone who reads it. Hopefully I'll have some answers soon...

My Hba1c was 141 when they tested it last month at the cataract clinic, so j have a long way to go to get it down to a safe level. I had a ultrasound on my abdomen and pelvis the other week, not sure if thag was to check my pancreas as my gp and the hospital all denied organising it lol x

 

[TwilightMidna]

Welcome @TwilightMidna 🙂 Don’t let the LADA worry you. It’s just adult-onset Type 1, which comes on more slowly than Type 1 in children. In fact, my consultant rarely uses the term. If you are Type 1/LADA then you’d be better off having insulin. Early introduction of insulin can support remaining beta cells, extending their life.

In your position, I’d be buying some Ketostix (urine dipsticks to test for ketones). I’d also avoid low carb, eat healthily and monitor your blood sugar very closely, particularly after meals. This is because eating low carb masks Type 1/LADA and can delay you getting the treatment you need. You don’t need to wait until the antibodies test comes back.

Contrary to popular belief, Type 1 isn’t just a childhood condition. More people are diagnosed in adulthood and your age is a common age to be diagnosed. You’re not alone 🙂

Thank you for the support and advice. I will definitely look into the ketostix! Maybe I’ll ask for some for my birthday next week I feel a bit anxious about increasing my carbs because of that 14 reading. I know we’re all different but is there a number that I should be particularly concerned about after eating (I.e. if I got 14 again would that be a problem, whilst I wait for this result?). I sincerely appreciate this insight and your advice. The nurse did say to me that if I was finger pricking and getting 20s they would have put me straight on insulin. I do wonder if I hadn’t caught that 14 reading and drastically cut my carbs, whether I would have reached that cut off of 20! Thank you again for the support x

 

[TwilightMidna]

Yes, to be honest 1 normally say type 1...i only used lada on here as shorthand for 'not been dealing with this since childhood'
What i would say is try not to think too much about what will happen til you have your results as you will run yourself ragged thinking about all the possible outcomes.
Whatever the result is, whatever the treatment options, within a couple of months is will be on its way to being second nature.
Its often a bit tough at first, but it gets easier

I am absolutely running myself ragged. I can’t think straight or about anything else! I will definitely take your advice and try to switch off and just wait to see what happens. Sharing here has helped so much already!

 

[TwilightMidna]

My Hba1c was 141 when they tested it last month at the cataract clinic, so j have a long way to go to get it down to a safe level. I had a ultrasound on my abdomen and pelvis the other week, not sure if thag was to check my pancreas as my gp and the hospital all denied organising it lol x

It’s so sweet of you to respond when you’re going through so much yourself (I’ve been following your posts). Gosh, 141 is high. I hope the insulin helps and you feel better soon. If you feel comfortable doing so, let us know how the results of the scan are. Thanks again for replying and sharing with me. You take care x

 

[EmmaL76]

Hi, and welcome to our community 🙂 You are certainly not alone in your plight. There seems to be an increasing number of oddly presenting diabetics on here these days. Me
Included. The great thing is that you seem to have been receiving the correct care from the outset which is amazing. My case is extremely similar to yours apart from I was a little older at diagnosis but suffered with elevated blood sugar for over 20 years only
Creeping into diabetic numbers around 3 years ago at the age of 43, I was diagnosed over the phone as type 2 and told to exercise more and cut the carbs and do intermittent fasting. As I was already very slim and ran miles every day I started to push myself to the extreme. I ended up with a BMI of 17.8 at my lowest and could have easily auditioned for the walking dead. Seriously though, it was brutal and I never want to go back there, desperately trying to stay in range and punishing myself for every deviation of that. In the end my gad antibodies were shown as elevated (took around 2-3 weeks for mine) and I was prescribed insulin. Various consultants have come and gone each one disagreeing with the other about my type, I was told I must have fatty organs, was scanned… zero fatty organs, I was also sent for a scan of my pancreas. It was fine.
I have spoken to professors and private consultants and been tested for MODY. Officially on paper im a LADA. I take my insulin and I live my life far better that I did before. The professor I spoke to said there is so much we don’t understand yet about the mechanisms behind diabetes, and even if a skinny type 2 tests negative for antibodies they will usually always require insulin in the not to distant future. MODY could well be a consideration for yourself, but it’s notoriously difficult to get tested and takes months and months for those results. I got around this by paying private at a cost of around £180 to see an endo who then pushed the testing through the NHS. I wish you all the best and never stop advocating for your own health.

 

[kellie01]

It’s so sweet of you to respond when you’re going through so much yourself (I’ve been following your posts). Gosh, 141 is high. I hope the insulin helps and you feel better soon. If you feel comfortable doing so, let us know how the results of the scan are. Thanks again for replying and sharing with me. You take care x

The scan came back clear but i don't really know what they were looking for. I feel a lot better already, my energy levels are, coming back, even managed to do housework yesterday and clean out fishtanks today, something i haven't really had the energy to do for a while. It is nice to have other people to talk to so you don't feel like you are the only one going through this. You take care of yourself too x

 

[Inka]

Thank you for the support and advice. I will definitely look into the ketostix! Maybe I’ll ask for some for my birthday next week I feel a bit anxious about increasing my carbs because of that 14 reading. I know we’re all different but is there a number that I should be particularly concerned about after eating (I.e. if I got 14 again would that be a problem, whilst I wait for this result?). I sincerely appreciate this insight and your advice. The nurse did say to me that if I was finger pricking and getting 20s they would have put me straight on insulin. I do wonder if I hadn’t caught that 14 reading and drastically cut my carbs, whether I would have reached that cut off of 20! Thank you again for the support x

A tube of Ketostix is around £5 or so @TwilightMidna and a bit of a sad birthday present. Put nicer things on your list 🙂

Yes, you’ve thought right above 🙂 The idea is you increase your carbs for two or three days to reasonably normal amounts, get the high glucose readings and get the treatment you need. I’m awful for names but there have been a number of people here who did similar to you - going low carb when suspected to be Type 1/LADA. Particularly when you’re dealing with GP surgeries, this just delays and confuses things. As you’re underweight, then it’s even more important.

 

[Leadinglights]

Thank you for the support and advice. I will definitely look into the ketostix! Maybe I’ll ask for some for my birthday next week I feel a bit anxious about increasing my carbs because of that 14 reading. I know we’re all different but is there a number that I should be particularly concerned about after eating (I.e. if I got 14 again would that be a problem, whilst I wait for this result?). I sincerely appreciate this insight and your advice. The nurse did say to me that if I was finger pricking and getting 20s they would have put me straight on insulin. I do wonder if I hadn’t caught that 14 reading and drastically cut my carbs, whether I would have reached that cut off of 20! Thank you again for the support x

The Ketosticks to test your urine are only about £5 from the pharmacy so it would not a very generous b'day gift. But worth having available if your blood glucose is in the high teens.

 

[Pumper_Sue]

even managed to do housework yesterday

No swearing on the forum please 🙂

 

[TwilightMidna]

Hi, and welcome to our community 🙂 You are certainly not alone in your plight. There seems to be an increasing number of oddly presenting diabetics on here these days. Me
Included. The great thing is that you seem to have been receiving the correct care from the outset which is amazing. My case is extremely similar to yours apart from I was a little older at diagnosis but suffered with elevated blood sugar for over 20 years only
Creeping into diabetic numbers around 3 years ago at the age of 43, I was diagnosed over the phone as type 2 and told to exercise more and cut the carbs and do intermittent fasting. As I was already very slim and ran miles every day I started to push myself to the extreme. I ended up with a BMI of 17.8 at my lowest and could have easily auditioned for the walking dead. Seriously though, it was brutal and I never want to go back there, desperately trying to stay in range and punishing myself for every deviation of that. In the end my gad antibodies were shown as elevated (took around 2-3 weeks for mine) and I was prescribed insulin. Various consultants have come and gone each one disagreeing with the other about my type, I was told I must have fatty organs, was scanned… zero fatty organs, I was also sent for a scan of my pancreas. It was fine.
I have spoken to professors and private consultants and been tested for MODY. Officially on paper im a LADA. I take my insulin and I live my life far better that I did before. The professor I spoke to said there is so much we don’t understand yet about the mechanisms behind diabetes, and even if a skinny type 2 tests negative for antibodies they will usually always require insulin in the not to distant future. MODY could well be a consideration for yourself, but it’s notoriously difficult to get tested and takes months and months for those results. I got around this by paying private at a cost of around £180 to see an endo who then pushed the testing through the NHS. I wish you all the best and never stop advocating for your own health.

Thank you for the warm welcome and for sharing your journey with me. Gosh, I'm so sorry you had to go through all of that before you got the treatment you needed. I'm glad you eventually got some kind of answer and are doing better with insulin. I can relate to a lot of what you have shared about how you were trying to deal with the diabetes before insulin. I did wonder about MODY as my mum also has diabetes (type 2). Maybe that's something I'll look into once I know a bit more about what's going on (not sure I could cope with any more waiting right now!). Appreciate your support and encouragement so much x

 

[TwilightMidna]

The scan came back clear but i don't really know what they were looking for. I feel a lot better already, my energy levels are, coming back, even managed to do housework yesterday and clean out fishtanks today, something i haven't really had the energy to do for a while. It is nice to have other people to talk to so you don't feel like you are the only one going through this. You take care of yourself too x

That's so good that you're starting to feel better already. Hopefully everything continues to move in the right direction for you. Goodness knows you've gone through enough already. If you ever want to chat you're welcome to message me. I'm sure I'll see you around in the comments either way! Hugs

 

[TwilightMidna]

A tube of Ketostix is around £5 or so @TwilightMidna and a bit of a sad birthday present. Put nicer things on your list 🙂

Yes, you’ve thought right above 🙂 The idea is you increase your carbs for two or three days to reasonably normal amounts, get the high glucose readings and get the treatment you need. I’m awful for names but there have been a number of people here who did similar to you - going low carb when suspected to be Type 1/LADA. Particularly when you’re dealing with GP surgeries, this just delays and confuses things. As you’re underweight, then it’s even more important.

Ahh, I see what you're saying. Thank you for the advice and for recognising how important this is. It's very validating. I will have a look around and see if I can find the posts of those low-carb LADA people. I'm sure I could learn a thing or two from their experiences!

 

[TwilightMidna]

The Ketosticks to test your urine are only about £5 from the pharmacy so it would not a very generous b'day gift. But worth having available if your blood glucose is in the high teens.

So I think what you and @Inka are saying is I need to put that expensive perfume I've been eyeing up on my birthday list... :-D