@Mbabazi How has your journey been with it? If you don’t mind me asking what’s your treatment plan?
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Positive GAD antibodies but told type 2
- Thread starter Jas_99
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Metformin and Glicazide. My doctor will be repeating my GAD and also another antibody test to rule out type 1. I am not convinced of the diagnosis because I had all the symptoms of a type when upon diagnosis - DKA, slim, bmi of 21, sudden onset of symptoms. Honestly I feel hopeless and my disease and diagnosis has completely consumed me. My bloog sugars range from 12 to 15 in the morning and just now I checked after having one egg and one slice of multi grain toast and my post meal number is 18.7 from 12.8 before the meal. I am concerned that something sinister is going on in my nody and I am not getting the help I need. Keep in mind that I skipped dinner last night. Right now, I feel like I am going to stop testing and just hope for the best and have just two small meals a day. My repeat antibody tests are in 2 weeks. I have asked for a repeat c peptide but have not got a response.
Just read your other thread and it sounds exactly like my story however I didn’t go into DKA. I’m about to start taking my metformin and reduce my insulin soon so I know when that happens my levels will start going up :/ i completely understand what you’re going through it feels so lonely and exhausting like you’re fighting a loosing battle but we know our bodies so we need to keep fighting! Buy yourself some ketone strips either using the meter or the pee sticks and keep an eye on them especially with your levels so high. Then maybe if you begin to get some ketones go straight to the hospital… you never know there might be a new doctor working there that actually listens? My doctor isn’t repeating my cpeptide for another year so you may be waiting for a while. It’s so frustrating how they want to categorise you into a “type” and ignore everything you’re telling them!!! Commonly ketones aren’t present in type 2s so I don’t understand why they have dismissed it? Keep trying to eat normally, I know it’s hard. Maybe try and push for some insulin even if it’s a small dose to correct your levels if they don’t come down after food… type 2s can use insulin so surely they don’t really have an argument there? Good luck, please keep me posted, if you want to chat more then I’m here ☺️
melissaginty13
Active Member
- Relationship to Diabetes
- Other Type
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Heya sorry for jumping on here after so long but having read your story I’m very similar. I’m 26 but was originally diagnosed with type 2 at 15 ,My c pep testing was 1000mmol and negative for t1 antibodies but have severe insulin resistance. I’ve been trying to get an insulin pump from my consultant but as I’m not classed as t1 so I can’t get it . I’ve been told I’m not type 2 either but my feeling is I maybe a mix between 1&2 or even type 3 c . It’s so so frustrating when they don’t listen what u tell them about your own body and when they are stubborn as they stick to the guidelines of saying your not type 1 if you don’t have the antibodies. I see you now have type 1 in your bio I’m just wondering how you got to that diagnosis ☺️
Hi! 🙂
So… since my last post I’ve since started Metformin alongside Gliclazide i take these twice a day with my morning and evening meal… this seems to be working so far. I have stopped my fast acting insulin and I am currently reducing my long acting insulin. The diabetic nurse doesn’t know what type I am it’s more of a trial and error. (On my clinical notes it says I’m type 2 I’ve just not updated my profile). I see my consultant again in June and he will then take me of the libre because they don’t like giving out any form of tech to other types. I completely agree fighting for anything as type 2 or 1.5 feels impossible it’s so exhausting!
I would suggest if your insulin resistance is so high speak to your Diabetes team and ask for an increase/change in any medication you’re taking. (unsure if you’re on any insulin/medication) As well as this maybe you could ask for a repeat of bloods to see if your insulin production has reduced. Depending on the outcome of this maybe you could speak to your doctors about starting a low dose of long acting insulin to try and combat those highs.
As far as I am aware type 3C is due to your pancreas being damaged/removed due to other medical issues/trauma to the pancreas?? I read your thread about your thyroid potentially being the cause for this but I don’t know much about type 3C??? I believe I may have LADA also known as type 1.5 where your pancreas still dies and you effectively end up as a type 1 diabetic but it can take years???
Also getting a pump for type 1s is very rare as they have to meet a very specific criteria so I would imagine your doctor probably won’t even consider this to be an option for you? However I am in no way a medical professional this is purely advice/my experience!
Re my treatment they plan on repeating the cpeptide and antibody test for me again after a year to see if anything’s changed.
I think the issue is there is so little research around diabetes and doctors (particularly consultants) are very rigid/narrow minded in their thinking so just box you into type 1 or 2 which then disadvantages people like us
melissaginty13
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- Relationship to Diabetes
- Other Type
- Pronouns
- She/Her
Yeah I’ve tried metformin and it didn’t agree with me at all , I was originally down as type 2 with my clinic but they said as I was only 15 at the time it’s unlikely cos I was so young. I think they started me on metformin and that didn’t work then I was on diaglyic and that wasn’t working so was put on insulin for a little while but then I was taken off it as that must’ve been a background insulin taken in the morning. Ah that’s a pain that they are taken the libre off you cos even tho I’m not classsed as t1 I still get a cgm although it may be different here in Ireland . Currently I’m on 2 types of insulin novorapid and xultophy so that’s injecting sometimes 5, 6 7 times a day which is why I want a pump . But yeah type 3c and lada are something that I think is similar to myself cos I feel like I’m a mixture of 1&2 , I had the c pep testing and antibody testing done around 6 months ago and I still produce loads of insulin so that rings true w them not being sure about t1 along with having negative antibodies. There’s actually a test for adults I think it’s called the Elsa study that you can see what your chances are of getting or having t1 in the future I just think it’s interesting. I really don’t think clinics know a lot about diabetes and like you say they go with putting u in a box of either 1 or 2 . I believe I’m a mixture of t1&2 like I said so type 1.5 . Doctors and consultants make you feel like a nuisance when you try and demand knowing more information about your condition it’s really so frustratingHi! 🙂
So… since my last post I’ve since started Metformin alongside Gliclazide i take these twice a day with my morning and evening meal… this seems to be working so far. I have stopped my fast acting insulin and I am currently reducing my long acting insulin. The diabetic nurse doesn’t know what type I am it’s more of a trial and error. (On my clinical notes it says I’m type 2 I’ve just not updated my profile). I see my consultant again in June and he will then take me of the libre because they don’t like giving out any form of tech to other types. I completely agree fighting for anything as type 2 or 1.5 feels impossible it’s so exhausting!
I would suggest if your insulin resistance is so high speak to your Diabetes team and ask for an increase/change in any medication you’re taking. (unsure if you’re on any insulin/medication) As well as this maybe you could ask for a repeat of bloods to see if your insulin production has reduced. Depending on the outcome of this maybe you could speak to your doctors about starting a low dose of long acting insulin to try and combat those highs.
As far as I am aware type 3C is due to your pancreas being damaged/removed due to other medical issues/trauma to the pancreas?? I read your thread about your thyroid potentially being the cause for this but I don’t know much about type 3C??? I believe I may have LADA also known as type 1.5 where your pancreas still dies and you effectively end up as a type 1 diabetic but it can take years???
Also getting a pump for type 1s is very rare as they have to meet a very specific criteria so I would imagine your doctor probably won’t even consider this to be an option for you? However I am in no way a medical professional this is purely advice/my experience!
Re my treatment they plan on repeating the cpeptide and antibody test for me again after a year to see if anything’s changed.
I think the issue is there is so little research around diabetes and doctors (particularly consultants) are very rigid/narrow minded in their thinking so just box you into type 1 or 2 which then disadvantages people like us
Hi all! Just a quick update for anyone who’s following… just seen the consultant. I am now off all insulin and am on oral medication only and my levels seem to be stable. The consultant has now changed my official diagnosis to type 2 and is now stopping my libre and referring me back to my GP. Partially happy as I no longer have to rely on insulin but partially overwhelmed as this is another new but final diagnosis to get my head around. Type 2 also seems to have a lot of stigma attached to it especially being a 24 year old! I know it’s silly but I feel a lot more shame with this diagnosis as it’s my fault my pancreas is dying. Not sure if anyone can relate. The consultant also wants to change my Gliclazide to semaglutide tablets as believes it will be more beneficial. Has anyone had any experiences with this? Thanks 🙂
Not sure if anyone can relate. The consultant also wants to change my Gliclazide to semaglutide tablets as believes it will be more beneficial. Has anyone had any experiences with this? Thanks 🙂I think that’s brilliant that you have managed to come off insulin from a pretty high dosage. I’m a type 2, on insulin, but eat very low carb so i never have to take much. I’ve just asked to be put on metaform and taking less insulin every day and blood sugar is very low. Why are you ashamed? I’m a healthy weight, always done lots of exercise and ate healthy home made food. My husband eats the same as me plus more carbs and sweets and he doesn’t have it. My dad was always slim and active and he got it too. My diabetic nurse said I’m just unlucky. I’m really hoping, like you, I can completely stop insulin.Hi all! Just a quick update for anyone who’s following… just seen the consultant. I am now off all insulin and am on oral medication only and my levels seem to be stable. The consultant has now changed my official diagnosis to type 2 and is now stopping my libre and referring me back to my GP. Partially happy as I no longer have to rely on insulin but partially overwhelmed as this is another new but final diagnosis to get my head around. Type 2 also seems to have a lot of stigma attached to it especially being a 24 year old! I know it’s silly but I feel a lot more shame with this diagnosis as it’s my fault my pancreas is dying.
Thanks for the update sounds a similar journey to mine in that treatment has switched to tablets. My endo who i finally saw after 14 months would not commit to type 2 in my case when asked. She said presented as type 1 but responding to type 2 treatment. I get the guilt thing. The guilt though in my opinion is firmly at the door of the media and some in the medical practice that cannot be bothered to sometimes dig deeper. I am not overweight and I exercise but so what. We are all different shapes and sizes and can move from Type 2 to type 1 if our pancreas finally burns out. High blood glucose does not care if you are type 1 or 2. The important thing is your on the right treatment. For the numpties who think we can all be cured by a soup diet and a bike ride then think again.
Dragonheart
Well-Known Member
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- Type 2
Despite sometimes having insulin as a treatment in common Type 1 and 2 are different conditions. (Albeit in a few cases hard to establish for sure which). Type 1 is autoimmune destruction of the insulin producing cells. Type 2 is metabolic and about insulin resistance and therefore relative insufficiency rather than necessarily absolute deficiency of insulin.
Type 2 doesn’t ever become type 1 even if the pancreas fails to supply enough, or eventually stops producing, insulin and it’s needed to be injected as it does in type 1. In theory a type 2 might also develop type 1 (anyone can develop autoimmune issues regardless of their pre-existing conditions) but in reality it would likely be written off as worsening type 2 and not likely to be identified as such with antibody testing etc in many cases.
Then there’s other types including 3c which is similar to type 1 in that it’s about lack of insulin but caused by surgery, medication, trauma etc rather than autoimmune.
Thanks for that. Agree the point about insulin resistance in type 2 but you can also still produce insulin in type 1 and be resistant to it? My main contention though is whilst Type 1’s are vindicated by common perception Type 2 are vilified. There is an assumption that the cause is know and proven but in all cases unfortunately it does not fall into a neat category. I prefer to think of diabetes more as a spectrum of which we are on potentially in different places and sometimes without known causes.
Inka
Well-Known Member
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- Type 1
Type 1s produce none or minuscule amounts of insulin @JamietDE6 Our insulin-producing cells have been destroyed by the auto-immune attack. So, no, we can’t be resistant to our own insulin - because we don’t make any! Prior to the discovery and purification of insulin, Type 1 was a terminal illness.
Dragonheart
Well-Known Member
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- Type 2
Small amounts can be produced by type 1 but resistance I understood came from the injected insulin more than the tiny amounts of endogenous insulin. As I said there’s nothing to stop a type 2 gaining an autoimmune condition including type 1 , there’s also nothing to stop a type 1 having metabolic issues as well as their autoimmune one and much more likely to be identified than a type 2 gaining type 1. Presumably the type 1 takes precedence in terms of diagnosis in this situation, possibly with added notes of double diabetes or insulin resistance
And I agree the perception in the media, the public and even too many medical professionals, is that type 2 was bought on ourselves whereas type 1 is just bad luck. There may be elements of truth in some cases with regard to diet and lifestyle but it’s very much not the whole story when you consider poor nutritional guidance, genetics, comorbidities, and misdiagnosis let alone more unusual circumstances. I very much agree that it’s not all neat categories and that type 2 seems to be a melting pot of anything that doesn’t fall clearly into other categories. There may be some themes and some large groupings in common for many (excess weight, sedentary life, high carb consumption) but we are very definitely not all the same not all fall into those tidy little slots.
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