Uncontrolled and waiting for an appointment - UPDATE pg3

Hi all,

I haven’t posted here in the longest time. I was doing so well with my diabetes - type 2 (steroid induced) I did so well I got my HbA1c down in the 40s and was then taken off all diabetes medication. It helped as my steroids were also lowered too.

Since then I caught covid, had a Vasculitis flare and ended up back on high dose steroids. My blood sugars has been creeping up but to be honest I wasn’t aware as I’d stopped monitoring at home as I was still following a low carb diet. I still am following a low carb diet but I hadn’t had my HbA1c done for a long time with the pandemic.

I had it done two weeks ago and I was floored. It was 82. I had a long discussion with the GP and he felt it was the steroids, Vasculitis and Covid combined. He went over my eating habits and felt this was overall good. He also mentioned it could be progression of the diabetes.

He didn’t feel able to prescribe me medication as he feels I need insulin or something such as Ozempic but because I have multiple conditions (including stage 3B kidney disease due to Vasculitis damage) he felt I needed specialist input. So he has referred me.

I have lot of pressure at work recently too so combined with this news, I had a bit of an emotional break down at work yesterday. I’ve been in tears and had to stay off work. I feel so upset and stressed that it has come to this.

I don’t know why I’m posting really but I need to let it all out. With the GP advice, I have started testing my sugars again so I have something to show the specialist and my numbers are shocking.

I just don’t know to how cope with everything right now. I have multiple conditions and starting on insulin seems so terrifying.

JAT1 said:

Oh my!! So much to deal with!! I hope the tears and the day off relieved some of the stress. Sharing your feelings on this website is good. There are so many helpful people here. About insulin, as a Type 1 user, I can assure you that insulin is frightening you unnecessarily - it is easy to use and becomes routine. The needles are tiny. I never feel them. Many hugs to you.

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Thank you. I think it’s a combination of work related stress, health worries and now this - I think I’m going to speak to the GP about it and take some time off work before things mental health wise get to breaking point again.

I appreciate the reassurance about insulin, I really do. I’m just more worried about it being another drug to manage. I already have to inject twice per day (anticoagulation). I’m more concerned about having the time to inject insulin during the day, monitor sugars etc.. I barely get time to have a drink at work barring a 30min lunch break.

I am sure you’re right though and it will become routine.

Lamont D said:

Having numerous conditions myself, though not as severe as yours is understandable and unsettling. As far as I can see you are doing your preparation for your referral brilliant. Finding the best ways to get the answers you need and want is so beneficial.
As far as getting support for your worries, posting a rant, is very cathartic and the more you talk about it, will help, just being positive about it going forward is best. I won't give you specific advice but the control is key to your own individual goals, your experience in what has worked for you before, maybe, just doing something different, adjusting your day, diet, exercise and talking will all help. If you need help, get it. Your GP is there to help you mentally and physically.
And if you do need meds or more tests, more battles to fight.
I have got through (ish) my anxiety, depression, battled my RH, controlled my shaking, do my exercise for my arthritis and conquering my battles with what life gives me in the future.
Be prepared to consider your options, ask for alternative ideas and treatment, research it, then decide.
If I had followed the first advice without spending significant time with research, experimenting, testing, writing everything down. I would probably not be here! It is your health and you need help with it. So keep battling, keep asking, keep searching for answers and keep positive about yourself.

Keep safe.

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Thank you for such a detailed and thoughtful reply. You seem to have had your fair share of troubles too, but I am pleased you are coping and managing them so well.

I’m trying to be as prepared as I can for seeing the specialist. I am unsure what they will recommended but my GP seems to think it is not uncommon for those with low kidney function and being on steroids to be started on insulin until the steroid can be reduced (unfortunately, it wouldn’t be withdrawn unless some miracle happens).

I do agree I perhaps need more support with my mental health and thus far, haven’t asked for it. I think maybe some counselling or therapy might help just to talk things through.

I’m trying to focus on one day at a time right now as anything more seems to make me feel overwhelmed and I know stress isn’t helpful for the blood sugars either.

Lamont D said:

Always baby steps, in your own time, you have some good days, some bad, some in the middle. It is up to you how you handle it. I had two lots of counselling, one with Age UK, the other with Mind, both taught my the tools to use in certain situstions, different days and how to cope with a lot of my issues. It is not easy, it can be good some days, not so good others. Having a positive spin on those issues, can help, counselling, talking, having a rant, even, at the wall, television, window, the rain, the clouds, the sun and so on. The idea is to make you not bottle things up. I have a rant every day when the news comes on! It does help!
Lastly, don't beat yourself up about it all, learning from your experience with all and help you get through it all.
it can be done, it is well worth it, and you never know, life could be a little kinder in the near fugure.
Never give up, there are some brilliant people that will help if you ask and tslk.
My GP was brilliant through the really bad time for me, and that was through the time when in lockdown with covid.
Baby steps, take it easy, take care.

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Sounds like such sensible advice. I think I’m stuck in reaction mode at the moment so everything feels overwhelming. I think just need some time to get to grips with everything and decompress.

Although work won’t be happy, I do intend to take a few days off so I can properly process everything and get my health (mental and physical) back on track.

EllieM said:

Do you have a union? Your workplace are supposed to make reasonable allowances for your diabetes management. That includes giving you time to do injections, blood tests etc. And if you do have to go on insulin I suggest you ask your doctor if you can have a glucose sensor (probably libre or dexcom) so that you don't have to do so many blood tests. You may or may not get one (it's only mandatory for T1s) but worth asking all the same.

Good luck.

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I don’t have a union unfortunately. I have had good support from occupational health over other health issues but work declined to make the reasonable adjustments suggested by them previously which wasn’t great.

I do think some of the stress I’m experiencing right now is work related as well as health related which doesn’t help as it is a double whammy so to speak.

I will ask about a CGM if insulin is prescribed, and if I can’t be prescribed one, I may well self fund as it will certainly make my life much easier.

EllieM said:

Is there a union you could join?

My understanding is that at least as far as diabetes is concerned, they are legally required to make such adjustments.

Diabetes in the Workplace | Your rights, laws & regulations

Diabetes is a uniquely personal condition; how it affects someone and how they manage it varies from person to person.

cpdonline.co.uk

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I could join a union but I think they don’t cover you for pre-existing issues if I remember correctly - I’ll look into it though.

Yeah I was told they’re legally required to make adjustments previously as I was covered under the equality act by occupational health but as I said they advised they couldn’t accommodate them as a business (occ health suggested flexible working, flexible start times etc) but it’s all something I’ll need to look back into once I’ve had my appointment and I know what’s expected of me.

Thank you for the link, I’ll have a read

Lamont D said:

In my old job a good twenty years ago I had a team member who had to inject, a half hour before eating, it was my responsibility to ensure he got the time to do it.
also, my travelling companion in my last job, had to inject, once in the morning and at tea time as well, it should not be an inconvenience to anyone to allow anybody the time necessary or the facilities to do so.

best wishes. If you require to join a union, do so, I have been a union member for over fifty years.
And yes, get a cgm!

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It shouldn’t be a problem and I’d hope it wasn’t. But it’s still a worry and a source of stress at the moment as I work in a very target driven environment.

I’m planning on speaking to the GP first about my stress and how I’m feeling in general as just feel so overwhelmed with work and my health - I think I’m burnout right now and it’s hard to find the capacity to deal with everything. I’m also going to ask work for counselling as I do think we have a scheme for it via work as I think the wait on the NHS will be quite a while.

I appreciate all the advice and support though. Talking through things a little is helping me feel calmer.

Lamont D said:

The first thing I noticed about your last couple of posts, is the more positive outlook you are feeling.
You need a bit of respite and some way to offload had helped.
If you don't get the help first, there are always options open to you, it can and will be sorted. To how you want it to.
Keep positive.
Best wishes.

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Thank you, I think you’re right - some kind of outlet for all this and some respite is needed. I think it will all help me to process things, feel less overwhelmed and start to get to grips with things.

Just posting and speaking to people here has been an immense help.

Juliarolo said:

I can really relate. I had v good control of my bs and after 10yrs was only on 500mg a day. In September I was diagnosed Parkinson’s disease. I commence medication. In January I had my six monthly HbA1c test and was horrified to find it a grown-up by more than 50% to 72. I have since been taking Semaglutide tablets which have not been an easy passage. The nausea they’ve caused has been horrific and years I’ve lost weight, mostly because I could barely eat. The nausea is now wearing off and I’m hoping that the half dose I am on will be sufficient. I am due another blood test in May. I have recently got myself a continuous glucose sensor so I can check my blood sugars as often as I need to. I am finding this very reassuring. However it is not sustainable as they are expensive. But the peace of mind it is giving me is worth the money at the moment.

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I am so sorry you can relate and it is such a shock when it happens due to things beyond your control. Low carb had really been a godsend for me previously and I am devastated it is no longer working as well.

I am sorry you’ve had terrible side effects too. It is another worry of mine but I haven’t even got an appointment to get mine sorted yet.

Another thing I’ve found really upsetting is that I had surgery scheduled which is much needed and I’ve been waiting for two years for - this has now been cancelled based on my HbA1c now being too high. I’d had my pre-op and have been told everything was fine aside form the blood sugar so the pre op is good for 3 months.. if I can get my blood sugar down to 65 or less then they will re-appoint my surgery but if not then I’ll have to go back on the waiting list which could mean a delay of another 6-12 months

It just feels so much pressure and stress that when combined with some work related stress I feel completely burnout with it.

I am glad to hear you are finding the CGM helpful but it is so expensive and it’s not something that anyone can fund for a long time I’d imagine.

My overall BG today is 9.9 on 24g of carbs.. frustrating isn’t the word!

On waking 6.2 (fasting BG) then two hours after I took my steroids with no food consumed 15.8

Scared to eat at this rate for fear of pushing it even higher.

Lamont D said:

Have you noticed this before?

As long as you eat low carb, then it shouldn't make much difference.

The only thing I could think of, is, did you drink anything?
Or, if you see a rogue reading, you must wash hands and retest!

If it happens again, you need to speak to your doctor. That spike is way too high!

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No drink, (only water to take medication) two tests, 0.3 difference, washed hands. This spike happens every day for me right now - as soon as I take steroid medication, within two hours I’m getting double digit readings.

By the evening, the readings are coming down so this evens out the day and overall I end somewhere near 9-11 which is still too high.

Already discussed with GP, and already been referred for specialist input - awaiting a date for this. GP felt unable to prescribe anything as apparently I’m a complex case (autoimmune disorder, multiple meds, stage 3B kidney disease, heart issues etc)

I did eat, 15.4 pre, and 2 hours post 15.6 so at least my meal was good.