New Type 1 (or 2?) - confused!

[wanderingcoda]

Hi all,
I've just joined as I'm feeling overwhelmed and confused.
Went to docs 3 weeks ago with long term recurrent thrush symptoms and on my birthday was diagnosed type 2 diabetes (happy happy birthday!) with a hba1c of 104, she was confused (I'm 107 lbs, 5"1 so verging on underweight) retested and it was 105. I was promptly told I had diabetes type 2, was allowed NO sugar, fell into in floods of tears and was thrown out as GP was running over. In the meantime I found out my dad may have had diabetes and great uncle has it. I had another appointment with a different GP and then was told it wasn't definitely type 2 and could be type 1 and they needed more tests (and that I could have the occasional sugar treat!) which they'll do at my next appointment. Finally the next appointment rolls around, I leave school early and they tell me I missed a doctors appointment (I most certainly didn't I wasn't told of any other appointments) and its the diabetes nurse and she can't tell me anything about my type, run any tests or really do anything since she doesn't know my type.

She tells me I need an urgent doctors appointment tomorrow in the middle of school. Then she runs off to see the duty doctor and comes back saying 'You're type 1.' despite running no further tests and no further input from the doctor, she says she just found it in his notes (which is weird because he told me categorically that he couldn't tell me at the last appointment). She says she'll do the DN appointment as if I'm a type 1 and refer me to a specialist. and defer the appointment with the GP for next Tuesday but I'm just a bit confused and worried - am I actually type 1 or should I take this with a grain of salt? If so should I be on insulin now or can it wait a bit? Should I be having ketones test strips? I've started monitoring my blood glucose and I was happy because at times is been down to 6.6 and it's averaging 10ish which seems better but she's still majorly concerned since there are spikes of 13/16/17/20.
Sorry for the rant but I can get really anxious and have a fear of needles so really not looking forward to the prospect of insulin and just want answers ): I'm worried I'll be waiting another few weeks for an appointment with the specialist and then have to rebook a session with tests and then have to wait for the results and could be months before I know where I'm at!

xxx

 

[Resurgam]

If there is a diagnosis of type one or even a suspicion if it then you should not be waiting weeks - nor should you be being messed around with GP appointments if you need to be seen by a specialist. As you seem to be stuck with a rather ineffective surgery, I can only advise that you keep monitoring your blood glucose levels and if they go high, if you start to feel unwell, that you ring 111 or go to a walk in clinic or A & E. Maybe contact the surgery tomorrow and see if you can get any sense out of them, try to get something sorted before the weekend.
Don't worry - just because your doctor seems to have no idea there are other options if you need them.

 

[VashtiB]

Hello and welcome,

I'm a definite type 2 so no good advice.

My sympathies for the way you have been treated as you really do need to know what type you are.

I think it its a good thing that you are testing- if you start feeling unwell in any way make sure you seek medical advice urgently. It really boggles my mind how doctors can leave someone so stressed.

Good luck- people with more knowledge will be here shortly with some advice shortly.

 

[becca59]

Ring the NHS helpline. They will probably direct you to A&E. if you are indeed a Type 1 you could deteriorate rapidly. It is not a condition to be messed with as your GP practice seems to be doing-a very common occurrence. Had similar experience myself. Gp Wednesday (got a phone call at 6:0pm and told to go to Gp immediately after blood tests) and Metformin given. Sunday admitted to hospital poorly. Do not delay, bypass the ditherers.

 

[mike@work]

Hello @wanderingcoda ,

I agree with becca here above, and wish to add. If your blood sugar values are varying, it could be that your pancreas is still partly working, EVEN if your diagnosis is type 1 - this is called honeymoon phase. There is no way saying, for how long it will pump insulin for you though, so try to be observant on how you feel, and if you start feeling ill, do as @Resurgam is suggesting...

 

[wanderingcoda]

Thanks so much for your responses, I don’t currently feel ill except mentally haha feeling very stressed. I’ll call at 8 and try and get an appointment. How high would you consider “too high” in terms of bloods to go in? Starting out with 105 means every level I get feels “lower” (except my 17 and 20 I got after a day of really healthy eating ) but I’m conscious that my levels are nowhere near normal. I woke up with an 11 which is lower than 17 but is one of the highest of my fasting levels since I started - is this a concern or should I not worry? Should I call 111 and see if I should go into a & e? I’m concerned about my ketones as I haven’t been prescribed a testing kit for this and keep getting “ketones?” popping up.

Thanks so much for all your responses!

Amy

 

[Diakat]

Amy,
The 105 will be a hba1c reading so is in different units.
Personally I would be tempted to just go to a&e with those numbers. Faffing around waiting for a go with no advice or medication is risky. If you are T2 medication can be removed later, if you are T1 not reaching crisis point is a good idea.

 

[wanderingcoda]

I managed to book an appointment so I’ve got that at least. Feeling a bit sniffly but sure that’s just cos I’m walking in the cold but if I feel any worse (worse than crying to my boss which I’ve already done!) I’ll call 111 and go in

 

[JoKalsbeek]

I managed to book an appointment so I’ve got that at least. Feeling a bit sniffly but sure that’s just cos I’m walking in the cold but if I feel any worse (worse than crying to my boss which I’ve already done!) I’ll call 111 and go in

Just wanted to wish you good luck. Heck of a situation to be in!

 

[NicoleC1971]

Amy
Glad you have an appointment. There are some tests to establish your variety of diabetes e.g. a test to show how much insulin you are making (c peptide) and another one to see if you are producing antibodies to your own insulin (type 1 is autoimmune) called GaaD. Those tests aren't always conclusive but it would be a start rather than the rather disorganised 'wait and see' approach of your surgery.
It is common for docs to be phased with a slim person who has elevated bgs but not as acutely elevated as type 1s diagnosed as children.
Do ask for ketone sticks and get to A ^E if you start to feel sick,very thirsty and have high sugar as well as ketones. The point at which bg s are dangerous with high ketones seems to vary but normal bgs are 4-7 and you are running high in general which will make you feel pretty under the weather and see you losing weight.
If you do get ill this can make blood sugars rise a lot so watch out for that curve ball!
It sounds a s if you are making some of your own insulin still so that is good but I think you need to see a specialist to assess if ;you need to start taking extra insulin. If that is the case then it will be lifesaver and tbh the needles are tiny compared to the ones you may have experienced for vaccines etc.
Finally it is totally understandable to be upset and overwhelmed by this and I am sorry your surgery has not looked after you.

 

[KK123]

I managed to book an appointment so I’ve got that at least. Feeling a bit sniffly but sure that’s just cos I’m walking in the cold but if I feel any worse (worse than crying to my boss which I’ve already done!) I’ll call 111 and go in

Hi there, I can see you are overwhelmed by all of this, so sorry for that, but just wanted to say don't just rely on how you feel, before diagnosis I felt wonderful......one day later, in hospital going into DKA. Please keep checking. x

 

[wanderingcoda]

Went in and she couldn't tell me which type or do any tests so she told me to go into A&E tomorrow morning to see an endo! She said I could go tonight but my levels are 8.2 and she thinks if I go with levels that low during the busy period that I'll be waiting all night and probably won't be seen til the morning and it'll just be more stress for me. Tested ketones and they are fine so that's a relief at least!

 

[Resurgam]

So much for type one being in your notes - honestly what are they playing at? It reads as though the sooner you can move your healthcare elsewhere or have it taken out of their hands by a hospital, the better

 

[Daibell]

Hi. You are one of many like myself who have found that many GPs know little about diabetes but won't admit it. Diabetes type diagnosis may not be easy so most GPs will guess T2. If you are thin, a good GP (not like mine) will consider T1 and do the two standard tests for T1 but even these may not always be conclusive. The GAD test if positive will indicate T1 but if negative proves nothing. The C-Peptide measures your insulin level and can be helpful. If low it indicates T1 and if high indicates T2. Many of us will have become late onset T1 (LADA) in adulthood and this may not be urgent but does need the right treatment (insulin). If you remain thin and your blood sugar remains high despite lowering your carb intake then ask the GP for the T1 tests

 

[MollieB]

Did they prescribe you ANY medication? With your body type I would be inclined to think Type 1 or 1.5 is more likely but you could still be Type 2. Yes, people with Type 2 diabetes are often overweight but not always. You can have slim Type 2s and you have heavy set Type 1s. I live in the States so our medical system is different than yours (obviously). If it were here I would say go to a walk in clinic or call and see if you can find a specialist that can see you quickly. Do you have access to "Urgent Care" or a "Walk-in Clinic" the UK? I would say get your test results and park yourself there until someone can see you (or A & E if that is the only option). I would go in and tell them, I have been told I am diabetic. I have been unable to get an answer as to what type of diabetes I have. I was told I have Type 2 and then I was told my chart says I'm Type 1. To my knowledge no tests have been run to conclusively say either way. My A1c was 104. I have been given no medication (?) and very little (or no) guidance. If I am Type 1 I am afraid I could develop ketoacidosis but I have been given no way of checking for that. Can you 1) Run the necessary tests to see if you can determine what type of diabetes I have; 2) Based of the results, can you get me some medication to help me control my glucose. 3) If I do have Type 1, can you get me some ketosticks? I am really scared because I know my glucose is high but I don't have much to go on. I'm worried that if this continues, I could wind up hospitalized.

 

[wanderingcoda]

Did they prescribe you ANY medication? With your body type I would be inclined to think Type 1 or 1.5 is more likely but you could still be Type 2. Yes, people with Type 2 diabetes are often overweight but not always. You can have slim Type 2s and you have heavy set Type 1s. I live in the States so our medical system is different than yours (obviously). If it were here I would say go to a walk in clinic or call and see if you can find a specialist that can see you quickly. Do you have access to "Urgent Care" or a "Walk-in Clinic" the UK? I would say get your test results and park yourself there until someone can see you (or A & E if that is the only option). I would go in and tell them, I have been told I am diabetic. I have been unable to get an answer as to what type of diabetes I have. I was told I have Type 2 and then I was told my chart says I'm Type 1. To my knowledge no tests have been run to conclusively say either way. My A1c was 104. I have been given no medication (?) and very little (or no) guidance. If I am Type 1 I am afraid I could develop ketoacidosis but I have been given no way of checking for that. Can you 1) Run the necessary tests to see if you can determine what type of diabetes I have; 2) Based of the results, can you get me some medication to help me control my glucose. 3) If I do have Type 1, can you get me some ketosticks? I am really scared because I know my glucose is high but I don't have much to go on. I'm worried that if this continues, I could wind up hospitalized.

I am on metformin twice a day. Yeah that's what the GP said to do - just sit and wait in A&E until they let me see an endocrinologist - thanks for this post, I felt kind of guilty going to A&E as if I was wasting NHS time but definitely gives me a script to go off tomorrow! Have to keep reminding myself its better to kick up a fuss now then to get hospitalised and waste A LOT more NHS time!

 

[MollieB]

metformin twice a da

Well that is dumb (on your clinic's part)....if your chart says you are Type 1, as the nurse said, then metformin isn't going to do a thing for you. The nurse should have known that (unless they put you on metformin after you saw the nurse. Which still wouldn't make sense). The nurse should have been: "Uh, doctor the chart indicates Type 1, is metformin really what you want her on?").
Have you seen any changes to your glucose since starting the metformin? It sounds like you have. If that is the case, I would think that either 1) You dramatically changed your diet and that is what is affecting the blood sugars or 2) you are most likely a type 1.5 or 2. (Type 1 isn't totally impossible if they caught it REALLY early and it is in a "honeymoon phase".) Personally, I would also expect your blood sugars to be higher than 13-17 if you were type 1 and not on insulin. Again, it isn't impossible to have numbers like that and be Type 1 on no insulin (particularly if it is early yet or depending on what you are eating) but I would think them to be higher. Did they do a urinalysis of any sort since they diagnosed you? Our general UA check for ketones, if ketones were present/ I would think not because I think they would be a little more alarmed (unless you were eating a keto diet at them time).

 

[wanderingcoda]

Well that is dumb (on your clinic's part)....if your chart says you are Type 1, as the nurse said, then metformin isn't going to do a thing for you. The nurse should have known that (unless they put you on metformin after you saw the nurse. Which still wouldn't make sense). The nurse should have been: "Uh, doctor the chart indicates Type 1, is metformin really what you want her on?").
Have you seen any changes to your glucose since starting the metformin? It sounds like you have. If that is the case, I would think that either 1) You dramatically changed your diet and that is what is affecting the blood sugars or 2) you are most likely a type 1.5 or 2. (Type 1 isn't totally impossible if they caught it REALLY early and it is in a "honeymoon phase".) Personally, I would also expect your blood sugars to be higher than 13-17 if you were type 1 and not on insulin. Again, it isn't impossible to have numbers like that and be Type 1 on no insulin (particularly if it is early yet or depending on what you are eating) but I would think them to be higher. Did they do a urinalysis of any sort since they diagnosed you? Our general UA check for ketones, if ketones were present/ I would think not because I think they would be a little more alarmed (unless you were eating a keto diet at them time).

Sorry for the confusion, I've been on metformin since the start when they thought I was type 2. I'm mostly Keto diet. Went into A&E today as advised and feeling much better - they've done CPEP and GAD test I believe and given me a new system to check my ketones so I don't need to panic every time my reading is over 14 (basically daily lol) and wonder if I need to go into A&E every time. They said that tests should be back in about 3 days so I'll probably have more information next week and might finally know my type. In the meantime they prescribed Glicazide and/or more metformin. I'm slightly confused but basically trialling Glicazide for 1 week to see how it goes and if it lowers my bloods and if it brings it down go back to just metformin but on a double dose. Not sure of the logic of all this and she seemed very relaxed (do Glica or not, double it or don't ...) but I'm just relieved to have the ketones checker/tests done/be in contact with the team!
Thanks all for telling me to go in!

 

[VashtiB]

I'm so glad you will get the information you need. Let us know how you go.

 

[MollieB]

they've done CPEP and GAD test I believe and given me a new system to check my ketones so I don't need to panic every time my reading is over 14

I'm so glad that you are on track to getting some answers!!!