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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.
 
hardergamer said:
Hi all, I have a major update, and a massive relief for me, as now I have been diagnosed, and I am feeling better after just starting the treatment and just knowing.
I've been talking to my GP about going to Dignitas and ending it, but then a few days later, I couldn't believe I had said this to him. And now I have proper treatment, but it's a life-changing one, which I'm lucky for catching it before it was too late. So an answer for my many symptoms, low BM, very high lymphocytes, excruciating pain in my back gut and chest, immune system crashing, which kept giving my shingles, anxiety and panic attacks, hardly being able to eat at all at times, and only managing some basic foods after starting PPI, and losing around half of my body weight, low blood pressure, tinnitus hearing problems and on and off vision problems, falling over and hurting myself all the time, falling unconscious, steatorrhea and being sick on waking, confusion and anger, not being able to leave my home for weeks on end, losing teeth, ad now needing £10k in work and so much more. But first, I'll explain what happened and what freaked me out yesterday.

I went to my GP for another morning blood test, as the doctor didn't believe my test results from 2 weeks before, and the ones 2–3 weeks before that. The tests went well. So I went home and later went to bed, only to wake up at 11:30 PM with 10 missed calls that I did not recognise and 10 voicemail messages, so half asleep I started listening to them only to find out they were from two doctors and other NHS staff calling me, and they were demanding that I pick up the next call from them as my life could be in danger, this set my anxiety off thought the roof!! Then at midnight, a doctor rang me and said I need to get to the hospital immediately, and as I was talking to him, I could hear the police shouting they are about to break down the door, so I answered the door only to find the police with an ambulance & paramedics, so I had no choice but to go with them to the hospital, and they hammered it all the way there, the driver said he was doing 110MPH at times! Only then was I told why, that my 9 am blood test had shown my Cortisol levels was at just 18 nmol/L, and anything under 150 nmol/L is concerning, and under 50 nmol/L is life-threatening, as I could go into a coma or worse die.
So I had loads of tests and brain scans, seen loads of doctors, then the top Endocrinology doctor in the County travelled a long way just to see me at this hospital, and after injecting me twice and both times waiting 30/60 minutes, I was diagnosed with Addison's disease! Many other things were found to be caused by Addison's disease, too, like swelling in my brain, and my own antibodies were attacking all my organs. They had to give me some big injections, which I need every week now, and they put me on Hydrocortisone 4 times a day. Also, I'm now under this Endocrinology doctor, which is a pain as I will need to travel to his specialist clinic, which is 6+ hours there and back every other week, and I need daily checkups. So I was having an Addisonian crisis, they said.

I'm off to sleep, having been up with them sticking pins in me for 22 hours.
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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.

db1tr.PNG
 
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
 
hardergamer said:
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.

View attachment 73764
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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 ?
www.diabetesaustralia.com.au

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 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.
www.verywellhealth.com

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 www.verywellhealth.com

Good luck with it all.
 
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