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Very Low Blood Sugars, Not Increasing With Carbs

Have just been back and read this thread. Astonishing! I am so glad they managed to get to you and start treatment. The relief you must be feeling to get a diagnosis. I googled to read the symptoms and very low sugar levels are indeed one of them. And many of the other problems you were having too. Hopefully the treatment works and you eventually start to feel something like your old self and able to get on with your life. Wishing you all the best.
 
Thanks for the update.
I can feel the relief of a diagnosis which is really positive.
I wish you all the best in your recovery to better health and times.
It is great to finally get your life back, I promise you that.
Best wishes.
 
Thank you all so much, and I can't tell if it's the relief of having a proper diagnosis or the new medication working, but thinking about it, it must be a bit of both as I'm feeling unbelievably better already after just 4 days of treatment, the main thing is my chest pains that I've been having for 20+ years has stopped. I really thought they were normal, and everyone ells too has heart palpitations and chest pains all day long, as mine stopped on the second day, also the burning and nerve pains have stopped which I was diagnosed with fibromyalgia, but this has stopped, along with the brain fog.

My face blindness and not remembering friends family has mostly stopped, and I can now remember what I did yesterday fully. I've been writing down every thing I eat, every medication I take, every call I make, basically everything I do for some years now as I can't remember most of it, I was told by a GP it was part of getting old when I was 45, just 2 years ago, I've had to record all important calls too, I probably keep doing this

I just add, I received a letter from my endocrinologist, and he wants to see me in 3 weeks, I'm wondering what he will ask me, or what if any tests will be done apart from bloods? And he asked me for all my recorded notes etc, and all type 1 diabetes in my family, he was especially interested in my nieces and nephews? As he asked me in hospital, and now in this letter, so I need to ask my 2 or maybe 3 siblings who have children with type 1, for their permission for their medical records, along with my dad's permission, and also my late mum was diabetic, but I don't know how I sort this one out...

And I'm now wounding if I can get my driving licences back, but I know I'll need to wait 6 months of no black-outs etc, but I'm not trying to jump the gun.
 
I feel so good !! As I now want to do things again, but I'm still too weak to go out to far, or do too much, but today I started deep cleaning my kitchen, I got about half done, tomorrow I should finish it, then bit by bit I work my around my flat, I've filled a 120lt bin today with tin cans and rice paster etc, all 2–7 years out of date, but things I could not stomach to eat.

I'm getting stronger every day, and my will to do things has returned, depression has gone, and I never suspected it was because of very low cortisol levels, so maybe I can come off some of my meds?

And to just let you know, the 30 minute test, a synthetic analogue of ACTH is injected, if below 500 after injecting 250 micrograms of tetracosactide confirms Addison's, mine was 310, and after my secund retest some hours later it was 370

My 9am cortisol test was just 18, when is should be 420 to 700+. With my 3 other 9am cortisol tests being 70 to 73.

I really wonder what it will be in 3 weeks... But now it's time for bed, as I feel like I've just run the London marathon.
But I really feel like I'm in my 20s again, I never expected this.

 
Thank you for the positive feedback. It really does bring me happiness knowing that this forum is full of caring people, and I'm so glad I found this place But what do you make of this? This is A1c testing this year, every 3-4 weeks.

I've just read a letter from my endocrinologist to my GP saying I have diabetes, and something about how I'm not able to control it properly: "he has poorly controlled diabetes"

Can anyone explain to me how I'm diabetic, when my A1c levels range from 28 to 48 mmol/mol, when it looks like it needs to be much lower, like 6.7 mmol?

Also, mine changes from 32, 28, 30, 33, 38, 38, 32, 40, 38, 42, then just 2 days later it was 48, how can that be if it's meant to be an average of 12 weeks? And I'm getting tested every 3-4 weeks.

I know I'm seeing the endocrinologist in just 2 weeks. What should I ask him? I'm really confused now.

 
48 is the current figure for diabetic diagnosis. A1c range isn't stable hence poorly controlled is by guess 20mmol difference. Doesn't matter imo of label) name or anything else for that matter as long as treated and hopefully able to be managed which will take a little bit of time to get used to. Remission is classed something like 2 tests 6months+. In 'range'. Just focus on questions on how to continue to improve more energy etc focus attention on what can help you with treatment plan options etc to get yourself settled into a new norm that works for you.

There is a heavier weight towards last few weeks for hba1c.. it doesn't measure a true average over the last 8to12 weeks instead measures corilation between really isn't worth stressing over labels. Hbà1c measures glycation of haemoglobin.

Best wishes
 
Your chart shows American A1c measurements, not in mmol/mol, which would be 48 (or 6.5%) for diabetes, or 42 - 47 for pre- diabetes, and under 42 as normal. I am also confused by a diagnosis based on one result of 48 mmol/mol, the others lower, but you'll have to ask your endocrinologist to clarify. Now that you are being treated for Addison's, does your CGM show spikes after carby meals? A1c is an average, so doesn't reveal extreme fluctuations. How are you feeling btw?
 
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Hmm, that is definitely something to ask your endo about.

Apparently Addison's can have a link with T1 diabetes ?

Type 1 diabetes and Addison's disease | Diabetes Australia

Conditions such as type 1 diabetes, coeliac disease, hypothyroidism and Addison's disease are autoimmune conditions. Being diagnosed with one may increase the
www.diabetesaustralia.com.au

Autoimmune diseases love company?

But my guess is that he either hasn't read your notes properly or is concerned by the relatively rapid increase in hba1c?
I guess technically an hba1c of 48mmol/mol just pushes you into diabetic territory? (Though I thought that you usually needed 2 readings at that level before the diagnosis came in?)

It's great that you are seeing the endocrinologist in two weeks. Hopefully by then you will have some sort of idea of what your blood sugars are actually like when you are no longer having acute Addisons symptoms.

If you want an average blood sugar test that ranges over a few weeks rather than 3 months you could get a fructosamine test, which is something they used to give pregnant women before cgms were invented, so as to detect more recent blood sugar levels.

How the Fructosamine Test Is Used in Diabetes Testing

The fructosamine blood test measures average blood glucose levels over the two or three weeks prior to when the test is performed. It is sometimes used instead of A1C tests.
www.verywellhealth.com

Good luck with it all.
 
Hi all, a little update, around 2 weeks ago I reduced my Hydrocortisone from 40mg to 20mg in one day like I was instructed by the hospital and next day started feeling unwell, and fell asleep missing my last dose, well I woke up in the start of an Adrenal crisis, luckily I had someone with me to call a doctor as I didn't know what was going on, but 20 minutes after taking an extra 20mg of Hydrocortisone I was feeling nearly normal again, and for the first time in my life I had a doctor have a really bad go at me about missing my dose! I mean, he was shouting at me. I now understand how serious my condition really is, and now properly learnt about the sick day rules and signs etc, and that I can't take any chances, the doctor put me back up to 40mg per day until I saw the endocrinologist, who I saw last week.
The appointment with the two endocrinologists went very well, but I was given the wrong instruction to cut the Hydrocortisone by 50% in one go, it was meant to be over 4 to 6 weeks, so now this is what I'm doing.

Now I've a new problem, my left leg from my knee to my hip lost all feeling about 4 days ago, it felt like it was asleep, so I think it's Peripheral Neuropathy, but last night it really started hurting, and today it's killing me, it feels like when a nurse hit my sciatic nerve when giving me an injection some years ago, tramadol and some diazepam stopped the pain for around 4 hours this morning so I could get a bit of sleep, but now I can't walk on it, as I have little feeling down to my foot, and my right foot has lost most feeling now too, I'm going to see my GP in the morning, that's if I can move, my sister who is type 1 gets Peripheral Neuropathy, and said it sounds like what she has had when her BG are high or something like that, but my BG is around 5 to 7 today.

I was thinking of taking an extra tramadol and diazepam tonight so I can get some sleep, but that will take me over what I'm prescribed. So, can anyone advise me what I can do that will relive the pain? I'm thinking of drinking some strong cider, just to help me sleep, but I don't want to start drinking too much again, but the pain is really killing me, it feels like my leg is on fire, and that tendons are snapping inside. Maybe a cool or warm bath? or is there any creams etc that can help?
 
Sorry to hear above sending hugs. Some people have a little luck with tens machine for pain which can act as a distraction might be worth trying. Only as you've mentioned creams something along lines of voltrol but tbh don't think that would likely help too much. You can get pain patches such as lidocaine they are only good for surface pain which is a other option worth considering. Gl
 
I only saw your post now.

Have you seen a doctor with your leg?

Such a sudden onset of symptoms should be taken seriously, and this is not how peripheral neuropathy usually presents.
If you haven't seen a doctor yet and the symptoms persist, I'd urge you to at least call 111 for advice.

Please let us know how you are!
 
Thank you both, my GP and a diabetes doctor both checked me over today, and can see that my left leg has swollen up a lot, but wouldn't even tell me what they think it is. They asked me to do stretching, and keep taking my tramadol along with hydrocortisone and diazepam on waking, so before I try and move too much, take them.

They have sent a letter/email to my endocrinologist asking for advice and to bring my appointment forward, as my next appointment with them is in around 3 weeks, about when I have the MRI. Also, they made an appointment for the diabetic doctor to see me again in 6 days. I really hope I get a little info, as not knowing again is stressful.
 
Research edema see if any similarities and possible questions have for treatment if rings true
 
if your not able to wait for your appt. i would suggest perhaps going to a&e at the hospistal where the specialist consulatant your seeing is based if at all possible. sending more hugs hoping you find something helps to ease the pain and hopefully a more perm solution is found quickly
 
It's not edema, lower leg and foot is normal, but I had a little swelling on my right ankle after starting hydrocortisone, but thats gone now. This was in the most pain I've ever thought possible this morning, it's like my nerve endings were on max pain, I was shouting and screening for about 2 hours after waking up, only after taking 200mg of tramadol, and 20mg of hydrocortisone did the pain ease away, but still felt like a blow touch was burning my upper front leg. A GP came and saw me, and said he was going to put me on Oramorph, but could not because I had taking tramadol, so he reminded me to take 10mg of Diazepam which really helped, I had forgotten to take it, as I just couldn't think with that much pain, I'm still in much pain, but at least I can now think and talk ect.

What I've been advised by the GP to do is call an ambulance next time as the doctors are new closed, as the GP thinks they will need to do a scan of my back and leg. And he was a little shocked to see that I have around 50 Lipomas in that part of my leg where the pain is, with one new one the size of a golf ball, and on that leg my Lipomas follow my nerves down my leg, and then groups of them make sort of half circles.
People say Lipomas don't hurt, but many of mine really do, but this pain feels like sciatica pain, but on the top and side of my thigh, not the back, and this is on another level to when I had sciatica, and I was bed bound with that for 2 weeks before I could walk again.
 
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