Go Gentle With Me

[Julie W]

Hello, I am Julie, I am now 53 and Diagnosed Type 2 in February 2020 after flirting with Diabetes for over 7 years (levels staying just under 47) I also have 2 x Brain Aneurysms. 1 coiled and 1 not coiled due to it being on my optic nerve. Also had a heart attack in 2016, as a result I have 3 x bare metal stents in my RCA. I am a non-smoker now (gave up immediately post heart attack (no meds pure will power). I also have IBS. I am also very overweight.

Lockdown happened and nothing was done about my diabetes diagnosis until October 2020. I was given Metformin. This made me feel awful and exacerbated my IBS leaving me in constant pain, diarrhoea and un-ending nausea. Basically for 2 months I was a pain ridden, bloated zombie and pretty blooming miserable. My DN changed the Metformin to the slow release version, same scenario. I was absolutely miserable. DN told me to stop taking it and they would re-assess at my next scheduled blood tests. This was July, blood tests were showing problems with my liver and they were repeated monthly until this month and I was started on Lyxumia injections. So far, 7 days in and I am nauseous, have bouts of diarrhoea, tired and wiped out and it seems to be having no effect in bringing my BG levels down. In fact, they are higher! Within minutes of injecting I have a headache, quickly followed by the intensifying nausea. I know I am only 7 days in but I am seriously miserable and don't know where to turn. My DN is contacting me in another 2 weeks - I seriously don't know if I can go on like this for another 2 weeks, getting a doctors appointment is like winning the lottery.

Sorry for the long post - I am just miserable

 

[Drummer]

Hello and welcome to the forum.
Your situation seems even worse than the few weeks I had on Metformin and a statin - did eating a low carb diet during your years on the edge not help you get control?

 

[Julie W]

Hello and welcome to the forum.
Your situation seems even worse than the few weeks I had on Metformin and a statin - did eating a low carb diet during your years on the edge not help you get control?

Thanks - sadly not - as in those 7 years my aneurysms were diagnosed resulting in 2 brain surgeries - and then I had my heart attack resulting in heart surgery. Lots going on

 

[Inka]

Welcome @Julie W 🙂 You’re perfectly entitled to be miserable - it sounds like you’ve had a huge amount to deal with health-wise.

Regarding the Lyxumia, if it’s making you feel ill, personally I’d phone the nurse this week and not wait two weeks for them to phone you. There might be something that suits you better. Even if you can’t get a doctor’s appointment, I’d hope you’d be able to talk to the nurse or get a callback.

 

[Inka]

Added to that, the advice below re Lyxumia (Lixisenatide) says to speak to your doctor:


Lixisenatide injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• nausea.
• vomiting.
• diarrhea.
• constipation.
• indigestion.
• bloating.
• headache.
• pain, itching, or redness at the injection site.

15 Mar 2017

 

[rebrascora]

Hi and welcome from me too.

Well done on stopping smoking. I am guessing that took a lot of will power but hopefully you will have a little left over to
help you make a few dietary changes. I imagine you have probably been exposed to quite a lot of hospital food in the last few years whilst having those other health problems treated, which won't have helped your diabetes situation. Not sure why hospital food is so carb heavy except of course that carbs are mostly pretty cheap.

So sorry to hear of all your very serious medical issues. The last thing you needed on top of IBS was Metformin. That really must have made life difficult. I am not sure how your current medication works. It is not one I am familiar with. I wonder if it is similar to Ozempic which is also an injectable and can cause nausea in the first few weeks.

How much do you know about diabetes? Many people are led to believe that it is just about sugar, when in fact all carbohydrates raise our Blood Glucose (BG) levels. So one of the most effective things we can do is cut back on all carbs including bread, pasta, rice, couscous, noodles, pastry, batter, breakfast cereals, potatoes including sweet potatoes and parsnips and eat more of the leafy green veg and above ground veg. and go steady on the fruit, opting for a few berries rather than the higher carb apples and pears and oranges and bananas etc. Some of those things might conflict with your IBS but some people find that cutting back on the carbs can improve their IBS so it may be a bit of a balancing act to find what works for you.

I think one of the most useful tools that you can equip yourself with is a BG meter so that you can test your levels at home just before and then 2 hours after each meal to see how your body responded to that meal and use that information to modify your diet. Keeping a food diary alongside those readings will enable you to identify problem foods and figure out which are not worth the BG aggravation and which you just need to reduce the portion size of. Many people here on the forum who have been successful in lowering their HbA1c result into the normal zone find a BG meter an invaluable tool not only in showing them how badly their body responds to some foods, which helps to discourage you from eating them but also hugely motivating when you see your levels start to come down and therefore be reassured that the choices you are making are good ones and having a positive effect on your diabetes.
The 2 meters most often recommended here on the forum for reliability and economy of use are the Gluco Navii and the Spirit Tee2. They are available to buy online and as a diabetic you are exempt from VAT and there is a box to tick to confirm that and remove it from your invoice. If you decide to get a meter, you would be well advised to order at least 2 extra pots of test strips and a box of lancets as you go through a lot of test strips in the early days of figuring out your new diet. This tails off once you build up a repertoire of meals your body can cope with.

Hope that gives you a direction to work in and if you have any questions feel free to ask.

It may be worth asking your nurse if there are any contra indications between taking your new medication and reducing your carbohydrate intake. Eating less carbohydrate can be a more powerful way of reducing your BG levels than most medications especially in conjunction with using a BG meter so that you can see what works and what doesn't, however many health care professionals sadly have no idea of that and may advise against both reducing carbs and testing. It is up to you to decide what makes sense to you but there are some medications for diabetes which would make a low carb way of eating more risky, so do ask or do some online research.

 

[everydayupsanddowns]

Sorry to hear about the tough time you have been having @Julie W

It does sound like waiting 2 weeks really isn’t appropriate for you.

Hope you can book a phone appointment in the meantime. Or maybe speak to NHS111 if you are really struggling to get hold of your surgery?

Would you find it helpful to speak to the Diabetes UK helpline? You can call them Mon-Fri 9-6 on 0345 123 2399 and chat things through.

Certainly sounds like you need a bit more help and support.

 

[Julie W]

Thank you all for the responses and I absolutely take on board everything everyone has said. My DN has just gone on holiday for 2 weeks <story of my life>. Things have improved slightly, but I also now have a bit of an ear infection going on. (I am just one drama after another!) which may be adding to the misery. I will give it to the end of the week and see where I am at with the nausea etc. You are all so lovely - thank you xx

I will check back towards the weekend and see how things are progressing.

Much love x

 

[Julie W]

Update: Like the martyr I am, I put up with the misery for 14 days. The nausea, diarrhoea, constipation, headaches - a new one: cough. The cough was non-existant until I injected and then started within the hour of injecting <sigh>. Coupled with the permanent fog I seemed to now residing within made me even more miserable. My does was due to increase today to 20mgs from the starting dose of 10mgs. I was having major anxieties at the very thought of increasing the dose and the symptoms becoming even worse! My BG was not coming down whatsoever and I was averaging between 10 and 15. Occasionally I would drop down to 7.6 -8.5 but only about 4 times in the two weeks (usually from later in the day testing). Fasting (1st thing in the morning) is stubbornly high at average 11.5 upwards - so today I called my GP practice and had a telephone consultation with a GP and he has told me to cease immediately and arranged a call with my DN next week. As he explained, as there are more & more specialist DN in GP practices these days, GP's become out of touch with the trail of progression. So he is keen to let the DN take the lead as she knows the recent history. Over the 14 days I have injected in the various areas the drug info leaflet advised, I am completely black and blue! I am not new to injecting (both parents Type2 and have injected them both at some point) - so not over zealous injecting or overly rough.

I am thankful I now have a week of hopefully being symptom free (I can now enjoy my lodge break in the Lakes) - but at the same time, I am dreading what is to come. I cannot go through this every few weeks trialing new medications and my anxieties levels at the moment are off the scale

Fingers crossed this can be sorted with no further misery.

 

[Docb]

Sounds like you are making progress. Full marks to the GP for not wanting to experiment so lets hope the DN you talk to gets to grips with things.

Enjoy your stay in the lakes...and don't forget your raincoat, galoshes and umberella! 🙂🙂

 

[rebrascora]

So pleased they have stopped the medication since it was making you feel so ill. I hope you have an enjoyable stay in the Lakes.
I wonder if when you get back, it might be a good time to make a concerted effort with changing your diet to improve your diabetes management. Especially now that you are no longer on any medication which was making you feel so ill. Many of us have reduced our carb intake and feel so much better for it. Diabetes will not generally respond to medication alone, so dietary changes are necessary anyway, to help bring levels down. In fact the right diet can be much more powerful than most of the Type 2 medications. It has to be worth trying, when the medication is making you feel so unwell.

 

[Julie W]

Enjoy your stay in the lakes...and don't forget your raincoat, galoshes and umberella! 🙂🙂

Thanks! I actually live in the Western Lake District where we are all born with webbed feet! Rain coats only come out in extreme weather lol! We are just venturing to central Lakes for a break (despite just having come back from Kos & Cyprus in the last few weeks.) These were all booked pre-pandemic (the Lakes Break is new). I am up for the chat with the DN to see what direction to take now - diet is well managed - weight loss stalled at the moment - so we can surge ahead with things. I just want to feel "normal", whatever "normal" is these days - in my day it was a cycle on a washing machine!

I will check back periodically when things are on the move again!