Bit despondent at diagnosis type 2

[Drakey]

I wondered what the JAK was and could it possibly be triggering high BG levels.

Hi, I take a JAK inhibitor as I have severe Rheumatoid Arthritis, it's called Xeljanz and switches off part of my immune system. It's been a game changer as before taking it I couldn't turn over in bed, walk function at all really as my joints felt like they had been hammered. I can run around after my grandsons, garden which I enjoy, and generally live a happy pain free life. It does have loads of side effects, raises blood pressure, cholesterol etc, more prone to cancer etc but it gives me a good quality of life.Feel lucky but diagnosis of diabetes has been bit of a hammer blow still early days! Thanks for your help.

 

[Inka]

I wondered what the JAK was and could it possibly be triggering high BG levels.

Some reports suggest it might contribute to hypos in people with diabetes, and others mention it has been shown to stop the auto-immune insulinitis.

 

[Drakey]

Morning. Just to say I had a face face appt with diabetic nurse today. My finger prick fasting blood was 11, she said it could be worse. She said having looked at everything it could be LADA as I was a complex case so plan is to continue Metformin and look at blood results end Feb. If I haven't responded will do appropriate blood tests. She said I don't need Consultant to approve. Also got to go on a drug beginning with g which quickly lowers blood sugar for short period so guess I should up carbs when taking this as she mentioned hypos. Any advice, ie shall I eat potatoes, bread? She said I should eat cereal, pasta all the time but really want to nail this so reluctant to follow this bit of advice. Thanks so much for your message yesterday as helped enormously with appt today. Promise not to bother you too much. Also gave me blood glucose meter, ordered scan of pancreas, so feel NHS care really good.

 

[Inka]

End of Feb seems too long to me. I suspect the drug beginning with g is gliclazide, which, if you are Type 1/LADA, will squeeze the remaining life out of your beta cells. Not good. As the tests to look for Type 1/LADA take weeks to come back, if you’re suspected to be LADA it makes sense to do them now.

Should you eat bread, pasta, etc? Well, you’ll have to eat some carbs with the Gliclazide (if that’s what you’ve been given). Personally, i’d follow her advice, test lots over 2 or 3 days and then speak to her again with your results.

 

[rebrascora]

Good to hear that your nurse is reasonably well informed and open minded about your diagnosis and you now have a meter.
I continued to eat progressively lower carb after I was started on Gliclazide because I don't remember anyone telling me otherwise and presumably, because my pancreas was on it's last legs, it wasn't able to produce any more insulin anyway so the Glic had no obvious impact on my levels at all and not a hopeof dropping low enough to hypo. Of course that is not to say the same will be true for you and you would need to proceed cautiously if you continued low carb and sometimes going very low carb can confuse the medical professionals because it is a very powerful tool in lowering BG, especially if you have just enough insulin production left to cover the very basics ie basal needs (liver output of glucose) to keep you alive.
I agree that Feb seems a long way off when we are only mid Dec but hopefully she will be in regular contact with you and review the situation and sanction earlier testing and review if there are concerns. I just find it concerning that we are approaching the holiday period when there will be less access to her, but not a lot you can do to change the time of year and we will be here to support you on the forum if you have any concerns/difficulties.

Did she give you a means of testing for ketones? If not ask next time you speak to her or if necessary buy some over the counter at a Pharmacy. They are called Ketostix and are about £5 for a pot of 50 and you use them to dip in your urine when your glucose levels are persistently high... mid teens or above. Ketones with high BG levels turn your blood acidic which becomes toxic and can lead to a very serious condition called DKA (Diabetic KetoAcidosis) Type 2 diabetics are not generally at risk of this, but if you are Type 1 or LADA it is possible, especially if you were ill (thinking Covid here but any other illness can also cause problems with high BG levels and ketones). It is very unlikely, but you should have a means of testing for ketones to be safe.

 

[Drakey]

End of Feb seems too long to me. I suspect the drug beginning with g is gliclazide, which, if you are Type 1/LADA, will squeeze the remaining life out of your beta cells. Not good. As the tests to look for Type 1/LADA take weeks to come back, if you’re suspected to be LADA it makes sense to do them now.

Should you eat bread, pasta, etc? Well, you’ll have to eat some carbs with the Gliclazide (if that’s what you’ve been given). Personally, i’d follow her advice, test lots over 2 or 3 days and then speak to her again with your results.

Thanks. Yes

Good to hear that your nurse is reasonably well informed and open minded about your diagnosis and you now have a meter.
I continued to eat progressively lower carb after I was started on Gliclazide because I don't remember anyone telling me otherwise and presumably, because my pancreas was on it's last legs, it wasn't able to produce any more insulin anyway so the Glic had no obvious impact on my levels at all and not a hopeof dropping low enough to hypo. Of course that is not to say the same will be true for you and you would need to proceed cautiously if you continued low carb and sometimes going very low carb can confuse the medical professionals because it is a very powerful tool in lowering BG, especially if you have just enough insulin production left to cover the very basics ie basal needs (liver output of glucose) to keep you alive.
I agree that Feb seems a long way off when we are only mid Dec but hopefully she will be in regular contact with you and review the situation and sanction earlier testing and review if there are concerns. I just find it concerning that we are approaching the holiday period when there will be less access to her, but not a lot you can do to change the time of year and we will be here to support you on the forum if you have any concerns/difficulties.

Did she give you a means of testing for ketones? If not ask next time you speak to her or if necessary buy some over the counter at a Pharmacy. They are called Ketostix and are about £5 for a pot of 50 and you use them to dip in your urine when your glucose levels are persistently high... mid teens or above. Ketones with high BG levels turn your blood acidic which becomes toxic and can lead to a very serious condition called DKA (Diabetic KetoAcidosis) Type 2 diabetics are not generally at risk of this, but if you are Type 1 or LADA it is possible, especially if you were ill (thinking Covid here but any other illness can also cause problems with high BG levels and ketones). It is very unlikely, but you should have a means of testing for ketones to be safe.

Wow you really know your stuff and your info from yesterday helped hugely at my appt today..I will take your advice and get some Ketostix as want to continue low carb as my gut says this is the way forward. Your advice has been invaluable, thank you. Have a telephone appt booked with diabetic nurse on 29th and filling in blood sugar meter readings in the meantime. Thanks again and Happy Christmas

 

[Inka]

Happy Christmas to you too @Drakey 🙂 Do try a couple of days of normal carb eating before you speak to the nurse on the 29th. The ‘danger’ of having suspected LADA and eating low carb is that it can mask the symptoms and delay the correct diagnosis.

With LADA, early introduction of insulin can preserve the remaining beta cells, which is a big benefit. It also protects you from a sudden decline in insulin production leading to DKA, as referred to above. Too many people with LADA have had their diagnosis delayed, causing stress quite apart from the physical effects.

Choose two non-Christmas days, and eat a normal healthy carby diet as recommended by your nurse. Your blood sugars from this will be informative. Doing this doesn’t in any way commit you to a certain diet in future. It’s so that you can get a correct diagnosis quicker rather than be subject to unnecessary delays. Once you have the correct diagnosis, you can eat what you choose.

 

[Drakey]

Happy Christmas to you too @Drakey 🙂 Do try a couple of days of normal carb eating before you speak to the nurse on the 29th. The ‘danger’ of having suspected LADA and eating low carb is that it can mask the symptoms and delay the correct diagnosis.

With LADA, early introduction of insulin can preserve the remaining beta cells, which is a big benefit. It also protects you from a sudden decline in insulin production leading to DKA, as referred to above. Too many people with LADA have had their diagnosis delayed, causing stress quite apart from the physical effects.

Choose two non-Christmas days, and eat a normal healthy carby diet as recommended by your nurse. Your blood sugars from this will be informative. Doing this doesn’t in any way commit you to a certain diet in future. It’s so that you can get a correct diagnosis quicker rather than be subject to unnecessary delays. Once you have the correct diagnosis, you can eat what you choose.

 

[Drakey]

Morning. Quick question, I see if you don't take insulin you can't get test strips and lancets for free. Just ordered from GlucoRX which is meter I was given. With postage nearly £25. Any tips for cutting costs? Thanks

 

[Windy]

Morning @Drakey I was recommended the Gluco navii or the Spirit Healthcare Tee2 by @janw as the test strips are cheaper. The lancets you can buy to go with the navii lancet pen as long as they fit the pen. I got some 28g lancets to go with mine. Didn't buy the same ones as came with the kit, and they still fit.
I don't know anything about the glucoRX, but the ones for the navii are less expensive.
Cheers, Sarah

 

[Windy]

also, if the diabetes nurse didn't give you one, you'll need a sharps bin to put the used test strips and lancets in. I asked the nurse at my practice if I can give the full bins to reception at the surgery to dispose of, and she said yes. My local council don't collect them. Some pharmacies take them, apparently, but I haven't asked my local one.
She also offered me a sharps bin, but I'd bought some from amazon.

 

[Leadinglights]

Morning. Quick question, I see if you don't take insulin you can't get test strips and lancets for free. Just ordered from GlucoRX which is meter I was given. With postage nearly £25. Any tips for cutting costs? Thanks

Test strips for monitors given out by GPs or 'free offers' are often more expensive so in the long run cheaper to buy a monitor as suggested as you will cover the cost quite quickly because of the much cheaper strips GlucoNavil strips £13 for 100 from Amazon.

 

[grovesy]

Morning. Quick question, I see if you don't take insulin you can't get test strips and lancets for free. Just ordered from GlucoRX which is meter I was given. With postage nearly £25. Any tips for cutting costs? Thanks

That is not uncommonly somestrips to cost that much and a bit more. Unfortunately the strips are not universal.

 

[Drakey]

Thanks all for your great tips. Didn't know about sharps bin. X

 

[janw]

I got my sharps bin on prescription, no questions asked, picked it up from the chemist's (who will take them when full - as you said, something else you need to check regarding disposal once full). I'm one of the naughties, only test 1 - 3 times a day now unless trying a new food, so only change lancet occasionally.

 

[grovesy]

I got my sharps bin on prescription, no questions asked, picked it up from the chemist's (who will take them when full - as you said, something else you need to check regarding disposal once full). I'm one of the naughties, only test 1 - 3 times a day now unless trying a new food, so only change lancet occasionally.

Sharps disposal varies from area to area.

 

[Drakey]

Morning All, Firstly can't tell you how much I value this site and forum. Would have been lost without it, Burgen bread, who knew, a slice tasted like nectar with my haddock this morning after no bread for 3 weeks at only 13g carbs. Been doing low carb mediterranean eating for 3 weeks, lost weight, feel really energetic and well. Seeing the numbers coming down on my bs monitor has been a real incentive, down from morning fasting of 14.2 to 6.5 today. Before lunch yesterday 5.3, after 7.3, after dinner 7.5. Think these aren't too bad? Expect Metformin kicking in now too but never took Gliclazide in the end cos my pharmacy took 3 days to get them in and then I got a really heavy cold and felt pants. Numbers coming down now so decided to wait to my DN phones me next Weds, hope she's not too cross. I am on blood pressure pills, JAK inhibitor for Rheumatoid and Metformin so just don't want to add to cocktail of drugs unless I have to. This isn't to say if you're reading this I think you should ignore NHS advice. Hav e a great Christmas everyone, the no longer despondent Drakey. X

 

[rebrascora]

Many, many congratulations @Drakey You are clearly making amazing progress and if your nurse isn't absolutely delighted with you then she should be sacked. Will be interested to see what your next HbA1c result is but I predict a very big reduction! Yes, the information on the forum helps, but putting it into practice involves a lot of effort and hard work on your part at least initially, so do allow yourself to be very proud of your achievements. Hopefully you will find that the effort becomes negligible after a while and that all the benefits more than pay off that initial hard work. It sounds like you are already experiencing those benefits. Good on you, well done and thanks for posting this because it will also help to motivate others who are at the start of their journey!
Wishing you and your family all the very best for the Festive Season!

 

[Drakey]

Aah thank you for the pat on the back. With my HbA1c at 109 I knew I had to do something and fast. Luckily I have no sweet tooth, am very much a savoury girl consuming loads of crackers cheese and Branston and munching mindlessly on vats of crisps pre diagnosis. I love fish and cooking so this has helped. My top tip is always eat something you enjoy, swop starchy carbs for roasted cauliflower, green veg etc. Make eggs a breakkie friend along with tomatoes, mushrooms etc. Someone wrote on here swop beige foods for green and this really helped me along with spades of determination caused by panic at initial diagnosis. Just need to keep the halo in place during the festivities, step away from the pringles!

 

[Windy]

You've done so well, with turning your diet around, getting your BG levels down and being in a much better place mentally and physically, I can't imagine the diabetes nurse will have anything but praise for you.
Proud of you! Sarah
Happy and peaceful Christmas and new year to you.