Doctors appointment (call) tomorrow am - help with prepping

[Mbabazi]

Hello friends,

Thank you all for how helpful you have been the last few weeks and days especially. I have a follow-up appointment with the doctor tomorrow morning following the discussion about my antibody and c peptide test results on Monday. The test showed I was still making some insulin but low and also antibody test positive. True to form, my bgs have been erratic with mid-teen waking numbers which last most of the morning.

Anyway, I am wondering what I should keep top of mind as I go into this appointment. Below are some of what I have.

-A plan for managing the high numbers (even in the interim), metformin is not working and I can only startve myself and cut carbs so much. I actually noticed I have become accustomed to hunger headaches. At some point today I was hungry and checked to find 13.2.

- What I can expect in terms of timelines between getting these test results and being taken care of at the diabetic clinic. Does anyone recall how long it took for them.

- How I can go about asking for testing gear, whether finger pricks or cgm

- A general sense of the treatment plan - something tangible and long-term to wrap my head around.

- Eye test.

Is there anything else I have not considered? I am concerned there might still be no treatment plan for me because I prompted this appointment, not the doctor.

 

[Inka]

I would start with telling the doctor your blood sugar results and stressing in detail how you’ve been starving yourself and hardly eating yet your blood glucose is still high. So, the small amount of insulin you’re making clearly isn’t enough. Don’t just say you haven’t been eating much because they don’t always take that in. Tell them exactly how little you’ve been eating (raw veg and eggs?) and how your blood sugar has stayed high. I’d be tempted to eat a normal carby meal before your appointment so they can see the results of that (a proper meal with normal amounts of carbs) on your blood glucose.

I’d repeat the facts - your age, your slimness, your activeness, your previous DKA, your low C Peptide and your positive Type 1 antibodies and ask the doctor to confirm your diabetes type.

I’d then ask for insulin (I think you had some before but stopped it?).

When I was diagnosed with Type 1, I was admitted to hospital on the verge of DKA and given insulin. This was the same day. As I think I already explained, although I was still making some of my own insulin, I stayed on the insulin from that day onwards. Other people I know who’ve been diagnosed with Type 1 have started on insulin that day or within a few days, depending on whether they were admitted or sent back to their GP. The consultant prescribed my insulin in hospital. I then took that and stayed on it and had a follow-up clinic appointment a few weeks later.

If you’re Type 1/LADA you should be entitled to a glucose meter and a Libre, presuming you’re covered by the NHS. Do make a point of saying you need these as else they might assume you already have them or that someone else is organising it.

You should automatically be added to the eye service list by your GP but it would do no harm to check this.

If you’re Type 1, the treatment plan would simply be to replace your missing insulin with insulin injections and then you can lead a normal life, eat normally and hopefully feel a lot better.

 

[Mbabazi]

I would start with telling the doctor your blood sugar results and stressing in detail how you’ve been starving yourself and hardly eating yet your blood glucose is still high. So, the small amount of insulin you’re making clearly isn’t enough. Don’t just say you haven’t been eating much because they don’t always take that in. Tell them exactly how little you’ve been eating (raw veg and eggs?) and how your blood sugar has stayed high. I’d be tempted to eat a normal carby meal before your appointment so they can see the results of that (a proper meal with normal amounts of carbs) on your blood glucose.

I’d repeat the facts - your age, your slimness, your activeness, your previous DKA, your low C Peptide and your positive Type 1 antibodies and ask the doctor to confirm your diabetes type.

I’d then ask for insulin (I think you had some before but stopped it?).

When I was diagnosed with Type 1, I was admitted to hospital on the verge of DKA and given insulin. This was the same day. As I think I already explained, although I was still making some of my own insulin, I stayed on the insulin from that day onwards. Other people I know who’ve been diagnosed with Type 1 have started on insulin that day or within a few days, depending on whether they were admitted or sent back to their GP. The consultant prescribed my insulin in hospital. I then took that and stayed on it and had a follow-up clinic appointment a few weeks later.

If you’re Type 1/LADA you should be entitled to a glucose meter and a Libre, presuming you’re covered by the NHS. Do make a point of saying you need these as else they might assume you already have them or that someone else is organising it.

You should automatically be added to the eye service list by your GP but it would do no harm to check this.

If you’re Type 1, the treatment plan would simply be to replace your missing insulin with insulin injections and then you can lead a normal life, eat normally and hopefully feel a lot better.

Thank you Inka. You've echoed my thoughts on all these and I will be sure to ask as such. I didn't know that I could outrightly ask for insulin. The doctor has suggested on the last call that sometimes people are given meds in the beginning. I'd rather bite the bullet and start on insulin. I've only used it when I was in the hospital for 4 days with DKA and the doctor then thought I should continue but honestly I fought hard to convince them I could eat super clean and they let me go without it. This wasn't in the UK. I haven't used it since.

I decided to have normal dinner with carbs and later than usual. This 21.8 is a rise from 17 before rhe meal and only 30 minutes or so after. I will see at the 1.5 hour mark. I wanted to see what would happen earing later and actual usual meals. Unfortunately this appointment is a call so they won't be able to test me but I can tell her what I observed tonight.

 

[Inka]

I'd rather bite the bullet and start on insulin. I've only used it when I was in the hospital for 4 days with DKA and the doctor then thought I should continue but honestly I fought hard to convince them I could eat super clean and they let me go without it

I think it’s really important to say that - that you wrongly thought you could treat this with diet and that you chose not to take the insulin even though the doctor thought you should. You can just say that you didn’t fully understand then, or that you were scared or whatever. No-one will blame you. That will show that you’ve taken insulin before; that it wasn’t your previous doctor’s idea to stop it; and that you’ve thought hard about what’s best.

Those are high sugars after your more normal meal as expected. Write down what you ate and the blood sugars ready to tell the doctor.

One thing I will say is that some doctors seem to talk at you and monopolise the conversation. Don’t let them do that. Don’t let them take over your appointment. Politely take control by saying you have a brief list of questions and concerns that you’d like answered. Be polite but push a little if needed.

 

[Mbabazi]

Sadly, I have been informed that the doctor has cancelled my appointment today because she does not have feedback for me. It is very disappointing and I don't understand why she gets to cancel when I still have concerns. The receptionist said that she put in an A&E referral (i think that is what i heard but not sure what it means) on the 11th which was only yesterday and that the doctor would call me with a treatment plan when they have received the advice ( I imagine from the diabetic clinic). The receptionist asked me to tell her what my concerns are and that she would pass them to the doctor. At that point I could not even start to air out what I had been practicing and felt hopeless. All I said was high blood sugars, morning numbers in the mid-teens. I guess I will just wait and keep trying to eat well until they come back to me. The uncertainty is overwhelming. It has been hard to go back to sleep after I pee in the night, usually twice, both times my mind races thinking about all this. I won't call them again, I will just hope they call me soon but not hold my breath.

 

[Inka]

At that point I could not even start to air out what I had been practicing and felt hopeless. All I said was high blood sugars, morning numbers in the mid-teens.

@Mbabazi It’s completely understandable that you couldn’t think when you were put on the spot like that. What you could do is give the receptionist a call back and explain that you felt flustered and so didn’t pass on your concerns accurately which are….and then have a brief list ready to read out for the receptionist to write down and pass to the doctor.

To my mind, your concerns are that you could have Type 1, you’re unable to eat hardly anything at all because your blood sugars are running so high, and you’re concerned about DKA, which you suffered from in [insert date/place] and feel you might need insulin. Or something along those lines at least.

 

[Mbabazi]

I was able to communicate some of this to them and the doctor called me later and told me that she understands all of that and is hoping to hear from the specialists in a few days so possibly in this new week. She also shared with me that she is a gp with an interest in diabetes and not necessarily a specialist which is why she needed the other's interpretation to go ahead. For now, we agreed to up the dose to 2 tablets of metformin. I am running out of testing strips with only a day's supply. I haven't been able to find the ones compatible with my glucometer so I will have to buy a whole new set. Since I don't know when the diagnosis will kick in and all the benefits of a cgm, it might be best I buy a new metre. If anyone knows an affordable brand I could try please share. I am feeling optimistic about the week and have prepared to have a good week of eating clean and fasting until I can get on insulin. My post and pre meal numbers were in the high teens through this weekend but Ive decided, I am doing the best I can so there is nothing more I can do and that mindset has lifted my rather low spirits.

 

[Inka]

I still think this is negligent @Mbabazi Nobody should be walking around with high sugars and starving. If you’d continued with the insulin as advised by your doctors in the other country, you would be able to eat and you’d have arrived here on insulin, which would just have been prescribed for you automatically.

I really hope you get some support from the specialist very soon x

 

[Mbabazi]

I still think this is negligent @Mbabazi Nobody should be walking around with high sugars and starving. If you’d continued with the insulin as advised by your doctors in the other country, you would be able to eat and you’d have arrived here on insulin, which would just have been prescribed for you automatically.

I really hope you get some support from the specialist very soon x

In hindsight yes, I should have taken the insulin then. At the time though, without the anti-body test and a borderline cpep, it looked like I had agood chance of reversing my diabetes and I tried hard. I am making plans to have a friend bring me over insulin from abroad in the next few weeks. That is my next plan of action.

 

[Inka]

I wasn’t criticising @Mbabazi 🙂 More saying that if you’d stayed on the insulin there, you’d have been prescribed it here without a thought, but now they’re delaying.

 

[Mbabazi]

I wasn’t criticising @Mbabazi 🙂 More saying that if you’d stayed on the insulin there, you’d have been prescribed it here without a thought, but now they’re delaying.

Ah I see. I did wonder about the procedure if i had carried a prescription. I wish I had. I am going to sign up for a libre freestyle trial and hoping a week's data can be useful in demonstrating to them that the metformin is not working and faster attention. How would one go about sharing such information? Book an appointment with the doc or some kind of email to the main Gp line.

 

[Mbabazi]

small update - I have been called to have an appointment with the doctor on Thursday. This is at my GP though so that makes me think the Diabetes Clinic decided not to take me on or that maybe my anti-bodies were not high enough or c peptide low enough for a type 1.5 diagnosis? I am anxious because I thought the next step was to be asked to go to the diabetic clinic to begin my treatment there as a Type 1.5. Any experiences with this? I have my talking points ready for the appointment but anxious about what to expect.

 

[Inka]

Perhaps the GP just wants to check up on you @Mbabazi or maybe they’ve even got some advice from the clinic. Don’t worry - just make a list of your questions or things you want to emphasise to the GP and take that with you. I always underline or highlight important things so I can make sure I don’t forget them and prioritise them if I’m short of time.

 

[Mbabazi]

Perhaps the GP just wants to check up on you @Mbabazi or maybe they’ve even got some advice from the clinic. Don’t worry - just make a list of your questions or things you want to emphasise to the GP and take that with you. I always underline or highlight important things so I can make sure I don’t forget them and prioritise them if I’m short of time.

thank you Inka, I will let you know how it goes.

 

[Mbabazi]

Back from the doctors,

She says that because of my normal insulin levels, they are going to treat me as a type 2 and then since metformin is not working, they have added a prescription for Glicazide 2 tablets a day. They said that I have the GAD antibody but it is not high enough so they will repeat the GAD and also do another anti body test to rule out type 1 completely. For now, I am a type two. I don't know what to make of it all but I guess I should just accept it. When I weighed myself, Id lost more weight and it must be from all the fasting. On this new treatment plan, I am going to eat normal and take those meds. I don't know now whether to try and reverse my diabetes or not. Also, why do I have the anti-bodies in the first place if I am a type 2, why? The doctor could not answer than but said that they make a decision based on reviewing everything. I do not think they have taken into consideration my DKA and how I presented on admission because that did not happen here or is not in their records. I also tried to show them the detoriation of the c peptide level even if it is still higher than usual. Anyway I am not sure how to proceed. I will take the meds because they should help bring my numbers into normal range. this morning's was 13.4 even though i skipped dinner.

i asked if I could show my paper work to the diabetic clinic and the doctor said she will write me a referral and it will be the clinic to write me a letter to give me an appointment. I suppose this is how it works? They did give me a metre and a prescription for strips so I am glad for that. I will reschedule my anti-body test and based on those results will see someone at the diabetic clinic. I am happy to accept the type 2 diagnosis if they can explain why I have antibodies and why metformin or all the dieting and fasting would not work. I actually teared up in the appointment because all of it does not make sense.

 

[Mbabazi]

I just went onto Google to try and understand c peptide better. Apparently there is urine c peptide and plasma.
Take a look at one of mine. The ratio is 0.3 which is supposedly low. I feel like the doctor and I are looking at different results.

 

[Inka]

Most GPs know very little about Type 1 @Mbabazi Did the doctor refer to any feedback/answers from the diabetes clinic that they’d received? The fact they’re doing a proper full antibodies check shows they must have some doubt about your diagnosis.

As far as I understand, you’re right about your C peptide ratio as you quoted above. The Exeter lab pages say:

“Intermediate insulin secretion
MODY should be considered where a patient with young onset 'type 1' diabetes has C-peptide in this range >3 years from diagnosis

• <% of adolescent onset and <6% of adult onset type 1 diabetes will have persisting C-peptide in this range after 5 years from diagnosis
• Most patients with type 2 diabetes will have a C-peptide above this”

 

[Inka]

Gliclazide is fine if you’re Type 2 but not ideal for Type 1/LADA as it can prematurely exhaust the remaining beta cells. Whatever you do, you clearly need to eat properly as you can’t continue to starve like this.

 

[Mbabazi]

Gliclazide is fine if you’re Type 2 but not ideal for Type 1/LADA as it can prematurely exhaust the remaining beta cells. Whatever you do, you clearly need to eat properly as you can’t continue to starve like this.

thank you Inka for all your support and helpfull advice.
My plan is as below.

Pick up the glicazide and start taking it.
Eat normal meals
I cant wait to see normal waking numbers, in the last few days its been between 12 and 15. I cant remember when i last saw a single digit.
I am hoping the referral to the diabetic specialist will be soon. I saw that my doctor put one in. I think she was irritated that I was questioning their diagnosis. My app says to only call after mid March if they have not called me.
I have a repeat GAD and some other test scheduled. What I really need is a repeat c peptide though so will ask for that if I have a chance to see the diabetic specialist. Do you know what the routine is for A1C? I am curious also to see what has hapenned since my last one mid november so id like to have that in mid Feb. Honestly I am anxious about glicazide but feel I have no choice. I can't keep walking around with these numbers.
I hope the antibody tests are conclusive. I imagine the glicazide would counter the c peptide by showing I was making more insulin since that is what it is meant to do so maybe a c peptide after starting it is pointless. I imagine though that it would not affect any antibody testing, right? What do you think?

 

[Inka]

The Gliclazide won’t affect the antibodies test 🙂 I’m not sure about the C Peptide. I wouldn’t worry too much about the HbA1C test. You’ll ‘see’ that as you test day by day - ie you’ll see how your numbers are doing. The proper antibodies test is key, I think. That and you eating normally - not just for your own health and well-being, but to give the doctor an accurate picture of what’s happening.