Recent Type 2 Probable Type 1 Diagnosis

[Proud to be erratic]

Dr Google says "Carbohydrate antigen (CA) 19-9 is a type of antigen released by pancreatic cancer cells. It can also be referred to as a tumor marker."

The HPB Dept that looked after me from (provisional diagnosis in Nov 2019) to way beyond surgery (signed off Jun 2020) didn't do that test. I asked, because at the time I was weighing up major surgery (Whipples Procedure) against other treatments. The senior Consultant said I had clear symptoms and a scan was more informative - since the test threw as many false negatives as true positives (and vice-versa). The HPB Dep't collectively didn't trust that test. Because the scan clearly showed the tumour, he suggested removal was a high priority and even if not Pancreatic Cancer it should be done (but he thought it was PC).

I mention this not cause alarm, just maintain perspective and manage expectations.

This sounds outside the scope and capability of a normal GP Surgery and I certainly agree with @Lucyr, ask (insist) on an Urgent referral to a Hospital Diabetes Centre. They will routinely cross-check with Surgical if they suspect anything else. Nothing in the original posting resonates with me as PC; but I am not medically qualified - just researched around my own circumstances. The test was no doubt well-intentioned, trying to exclude other possibilities and the GP wouldn't have the insight of a senior HPB Consultant.

 

[Bruce Stephens]

The senior Consultant said I had clear symptoms and a scan was more informative - since the test threw as many false negatives as true positives (and vice-versa).

Which makes sense. If you've got symptoms there's likely not so much value in this test. My guess was there weren't any symptoms suggesting pancreatic cancer so they weren't that concerned about that possibility, but the blood test was a low risk test which (if it was abnormal) would be really valuable.

 

[Val1133]

I thought I would give an update.

I was referred to the hospital following the high antibody test results and had my appointment last Wednesday afternoon.

My HbA1c has come down to 47, which I am pleased with 🙂 I have just had a blood sample sent away for a c-peptide test to determine Type 1 or Type 2 diagnosis.

The Dr wasn't sure whether or not to put me on insulin because my HbA1c was so good, however, he took the decision to start me on a very low dose, which I started 2 days ago. My dose is currently 4 units of of Tresiba at night and I am to inject with 2 units of Fiasp if my BG reading is above 12 before meals.

I now have a Freestyle Libre 2 and love it. I am still trying to get my head around the differences in the Libre 2 readings and BG monitor, however that will come with time.

I am getting excellent support from the hospital team. I had an appointment on Thursday morning with the diabetic nurse connected to the hospital. She spent almost one and a half hours going over everything to make sure I understood how to take the insulin and also how to use the CGM. I was very fortunate that my husband was able to come with me to this appointment as it now means he understands the condition much better and was able to ask questions that I would not have thought of.

He has been very worried about me since I was diagnosed, but much happier now that he understands more and that this condition is very manageable.

I am not allowed to drive or ride my horse for 48 hours after starting the insulin and have contacted the DVA and my car insurance to let them know I am now on insulin.

I have already had a review with the diabetic nurse at the hospital this morning over the phone and have to phone her on Thursday fora follow-up.

My next appointment with the hospital doctor will be scheduled once the c-peptide results come in (about 6 weeks)

Although it is very early days, I am much happier now that I have the tools and support to control my condition.

 

[rebrascora]

So pleased to hear you have insulin and good support and that both yourself and your husband are feeling a bit more confident of managing things.
I am very surprised that the Dr was unable to make a diagnosis of Type from that GAD result! I think many doctors have no idea of the power of a low carb diet in reducing BG levels and it confuses them when an HbA1c reduces dramatically without insulin. In some respects making significant dietary changes can actually work against you, if you are a slow onset Type 1, because the doctors are used to people eating a normal diet and ending up with a high HbA1c and obviosly needing insulin to bring it down.
I would encourage you to eat a normally, healthy diet and use the insulin as needed.

 

[trophywench]

Fine you've told your car insurer BUT has anyone told you that you must notify the DVLA that you are now using insulin? - cos the Law definitely says you must.

 

[rebrascora]

Fine you've told your car insurer BUT has anyone told you that you must notify the DVLA that you are now using insulin? - cos the Law definitely says you must.

OP states in that post that she has contacted "DVA" and her insurance. Maybe your speed reading is too speedy Jenny! 🙄

 

[Val1133]

Thanks @rebrascora, my diabetic nurse has said the same, so I am now trying to incorporate more carbs into my diet.

I am waiting for the DVA to send out the form so my Dr can sign it.

 

[Lucyr]

Is the DVA you mention the same as the DVLA? There should be a form you need to complete first not your doctor. They may ask your doctor for extra information.

 

[Val1133]

It's called DVA in Northern Ireland for some reason. And the form is coming to me to give to my Dr to sign. I'll have a look on the website to see if I can download something, but the lady I spoke to said she would send the form out.

 

[Lucyr]

It's called DVA in Northern Ireland for some reason. And the form is coming to me to give to my Dr to sign. I'll have a look on the website to see if I can download something, but the lady I spoke to said she would send the form out.

Might be that it’s a different process there then, in England you fill the form in online

 

[Val1133]

I looked again on the website and this time found somewhere to tell the DVA/DVLA about my medical condition, but it won't accept Northern Ireland Post Codes, so I'll just have to wait for the form to be sent to me.

I started using the Libre 2 last week and am having trouble sleeping with it on my left arm..

I normally sleep on my left side, but when I do, the low warning alarm goes off. I am trying to sleep on my right or on my back, but cannot get comfortable.

I am looking forward to getting my new one in and putting it on my right arm (only 10 days to go!)

I suppose in hindsight I should have worn it on my right arm for the first time, but since I am right handed I thought it would be easier for me to manage.

I hope I'll get used to this 🙂

 

[rebrascora]

If you place the Libre more towards the back of the arm it should be less of a problem lying on it. However your body does seem to learn to take it into consideration whilst you sleep after a while.... at least mine has.... in a similar way to learning not to roll out of bed whilst you sleep, but it does take time. I used to wake up a lot in the early days of using insulin in fear of having a nocturnal hypo when I didn't have Libre and then it was a question of getting up and going into the bathroom to test, so that I didn't disturb my partner, and then climb back into bed, so without the Libre you might have been waking up for other reasons. Hopefully it will be easier with your next sensor on the other arm but you should eventually adjust and learn not to sleep on it or find a slightly better placement.