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After advice from those in the know?

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T

Tahero

Member
Relationship to Diabetes
Type 1.5 LADA
Pronouns
She/Her
Hi there,
After your advice really? I was diagnosed with LADA the middle of last year. This was immediately after 16 weeks of intravenous steroids and high dose steroid tablets for Thyroid Eye disease. My blood tests two months before the steroids showed diabetes blood levels in normal range. After the steroids it was through the roof.
Anyway the Dr diagnosed LADA even though I asked could it have been the steroids? They did the anti-gad antibodies test which was in excess of >2000. I asked if this could be because of the thyroid and thyroid eye disease...... I never got a definitive answer.
I was put on basal insulin at a start rate of 11 Lantus and bolus of 2 Novorapid with each meal. This proved way too heavy. So 16 months later I take 8 units Novarapid and no bolus as it proves too heavy. I am relatively low carb as my job was as a professional dancer and singer.
In the past 18 months I have also been more sedentary as I lost a lot of my eyesight due to the thyroid eye disease, but after multiple ops, now have some back. The thing is I am now more active and even 8 units is too high. In fact even if I don't take the insulin, as long as I'm. Active it never rises out of range. But I have to stop activity because levels crash out. That sounds mad to me!
So I had an experiment of not taking any insulin for a week. Nothing changed. Levels were the same as they are with insulin. In fact slightly lower.
The only results of C-peptide I have are:
April 20th 2024 9am: 674pmol/L
September 24th 2:45pm 388pmol/L

But not taken same time of day. And both obviously after Novarapid in system?
T just doesn't feel to me like they have the full picture. As I say, when I don't take insulin I'm able to do a lot more and my levels go even lower. I am always at least 95% if not 100% in range on the libre 2 monitor, and that's with some cars administered.
Surely if natural exercise can keep it in range this makes more sense than insulin that crashes even if I walk down the road, even on four units basal and no bolus. #confused.
Confused on treatment and diagnosis with it being perfect before steroids then allegedly LADA three months later?
Ideas? Thanks in advance.
 
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Can you clarify which insulin you are taking as your long acting basal insulin and which you are taking with meals because it sounds like you are injecting NovoRapid as you basal, which will not work as it is a fast acting mealtime insulin. Hoping you have got muddled up whilst you are typing and not actually injecting NovoRapid as a basal insulin.
 
Hi there , that was my mistake. I take no bolus. As what I eat any bolus just makes me feel like rubbish and then crashes and I take lantus in the morning as basal. But even sometimes four units of that and no bolus is too heavy. Also the other antibody tests came back negative. The only positive one was the gad antibody test which may be positive because I also have thyroid and thyroid eye disease. Also to have perfect levels and no sign of diabetes and then 12 weeks of daily IV and tablet steroids which ended in May last year ,.....which was when this all kicked off?
Now......I'm not Poirot but?
 
Thanks for pointing it out Barbara, I've changed it.
 
Phew! That is a relief that you haven't been injecting the wrong insulins for the wrong purpose!!

If you can keep your levels in range without insulin then personally if I was in that situation, I would stop taking it, especially if you are having problems crashing during exercise or activity. I would however suggest that you continue to monitor your levels closely if you do stop and resume insulin if your levels start to rise.
I don't know if the Thyroid issues would cause a positive GAD but that is obviously very positive. Who was it that diagnosed you with LADA. ie a GP or a consultant diabetologist. Steroid induced diabetes seems a reasonable shout if you didn't have diabetes before you started the steroids and now that you have stopped taking them, you are able to achieve in range readings without the insulin. I wonder if someone has jumped the gun? The most important thing about managing diabetes with insulin is to err on the side of caution with regard to insulin doses to avoid hypos, so you lower the doses to prevent hypos. If that means you end up not injecting insulin then that seems perfectly reasonable. If you are currently only taking 4 units, I would perhaps take it down to 2units which is still a valid dose and then 1unit if 2 is still too much, before considering stopping altogether.
 
Yes I understand if I was doing the insulin the other way round. In fact with my situation I would think I'd be dead from insulin overdose even at that level.
Yes that was my understanding that insulin is there to lower levels, I was just checking that it didn't have any other greater power.
Yes originally it was the GP that diagnosed, I do see a diabetes nurse who is great, but confused with the situation, and a consultant who is also confused with the situation.
I keep telling them I am not moving around as much because even low levels of insulin cause hypos, but they don't seem to get if I don't take insulin I get lower readings due to more activity.
I've always been very active until as I say I lost my sight, but now I have a bit of that back I can do a bit more.
Also I read on here that to be diagnosed type 1 or LADA more than one of your antibodies has to be positive. If only one is positive that can also be thyroid or rheumatoid arthritis. The first one which I've had for most of my life.
But thank you for your wisdom it has really helped.....and no I haven't injected the wrong one , that was my sponge brain when typing, but thank you for pointing it out.....I may have been, so thank you. X
 
@Tahero The Novorapid/Lantus won’t affect your C Peptide as the test is looking for your own insulin not external insulin. However, it would have been easier to compare them if the two C Peptide tests had been similar (ie same time, same stimulation). The second result is a fair bit lower though.

What is the thyroid eye disease? Is it auto-immune?

What do you eat in an average day? If you’re eating minimally then that will confuse the picture. Your Lantus dose doesn’t seem particularly low for someone recently diagnosed. If you had steroid induced diabetes, I think you’d see a lot of insulin resistance, which you clearly haven’t got.
 
Hi Inka,
Yes thyroid eye disease is autoimmune as is the thyroid itself. Graves disease.
My levels are higher when I take the insulin and then just crash (but always under 10). They usually sit at about 5-6 then crash out hence why I don't use the bolus.
If I don't use insulin (basal) my levels just stay between 4-7.
I eat three meals a day, so cooked breakfast, and then the other two meals are either a salad for lunch and a roast for dinner. I have only ever eaten unprocessed foods due to having to be high protein and no refined carbs due to having to carb stack for the dance side of work. So apart from the fact I don't carb stack nothing is any different. I have never eaten bread, or cereal or anything die to being coeliac and gluten free products.
Better off with meat , veg ,fruit, and balanced carbs all unprocessed.
And the fact that my readings were 31 on an HB1AC two weeks before steroids and 79 at the end of them.
 
I remember you from your earlier threads @Tahero 🙂 My advice is still the same, and my opinion too - that you could be Type 1/LADA. I’ve just found an older thread of yours so you don’t have to listen to me repeat myself:D EDs are insidious and cunning. I think they can muddle your thoughts about food even when recovered because there’s a horrible little voice that can still pop up sometimes.

My advice would be to eat normally (nothing wrong with carbs); use your insulin as needed, including halves of units if necessary; and see if you can get a C Peptide that will give you a better comparison as to whether yours is declining/low. Here’s the previous thread I mentioned:

T

Thread 'Thoroughly Confused'

18 months ago I had eye surgery for thyroid eye disease as I was losing my sight. I also had graves disease which was treated 18 years ago with RAI knocking it under active. 3 months after surgery of which I had been on intravenous steroids and high oral doses of prednisolone I was found to have blood sugars in the 20s after going to the drs with the usual symptoms. Thirst etc etc. The Dr then tested me for anti-gad antibodies of which it came back in excess of ^2000. I was diagnosed with LADA , though I pointed out I had had no problems before surgery etc.
I was started on Lantus 11...

.
 
Tahero said:
Hi Inka,
Yes thyroid eye disease is autoimmune as is the thyroid itself. Graves disease.
My levels are higher when I take the insulin and then just crash (but always under 10). They usually sit at about 5-6 then crash out hence why I don't use the bolus.
If I don't use insulin (basal) my levels just stay between 4-7.
I eat three meals a day, so cooked breakfast, and then the other two meals are either a salad for lunch and a roast for dinner. I have only ever eaten unprocessed foods due to having to be high protein and no refined carbs due to having to carb stack for the dance side of work. So apart from the fact I don't carb stack nothing is any different. I have never eaten bread, or cereal or anything die to being coeliac and gluten free products.
Better off with meat , veg ,fruit, and balanced carbs all unprocessed.
And the fact that my readings were 31 on an HB1AC two weeks before steroids and 79 at the end of them.
Click to expand...

With auto-immune thyroid problems and coeliac disease, your risk of Type 1 is increased, as I’m sure you know, so that fits too. Type 1 does appear quickly. Things are fine, then they get to a tipping point where around 80% of the beta cells are lost and the remaining ones can no longer control the blood sugar so it shoots up.

I have non-coeliac gluten sensitivity and I eat GF cereals and bread and naturally GF things like rice and potatoes 🙂
 
Thanks Inka. I suppose my thoughts are if it now doesn't go out of range and yet I can assure you though not high carb, I now eat carbs. I'm not going to start eating more carbs to take more insulin, that would be counter-productive?
 
Inka said:
With auto-immune thyroid problems and coeliac disease, your risk of Type 1 is increased, as I’m sure you know, so that fits too. Type 1 does appear quickly. Things are fine, then they get to a tipping point where around 80% of the beta cells are lost and the remaining ones can no longer control the blood sugar so it shoots up.

I have non-coeliac gluten sensitivity and I eat GF cereals and bread and naturally GF things like rice and potatoes 🙂
Click to expand...
 
It depends what you call high carb, I guess @Tahero 🙂 I eat anywhere from 150-230g+ carbs per day. I remember thinking a bit like you when I first got Type 1 - kind of like I could starve it out, that I’d beat it and trick it by not eating carbs and by keeping on the move all day burning up calories.

Actually, control is easier if you eat a reasonable amount of carbs. By carbs there, I mean beans, lentils, fruit, bread, cereals, rice, etc, not the tiny amount of carbs in broccoli or tomatoes (they aren’t counted in Type 1 usually).
 
I understand it appears quickly but for the other antibody tests to not be positive. Only the one? Where as on here someone was saying usually two have to be positive, and my others were negative?
I also believe that the Cpeptide tests should be done same time of day, as difficult to analyse things when you are not using the same 'ingredients' so to speak.
I also eat potatoes as like yourself, just not rice, as I just don't like rice .
I suppose in short I'm just not willing to accept the LADA type one diagnosis when there are too many discrepancies , and things that haven't been fully looked into.
Yes I did have a stage where once again I was miserable with food, as I had got back to the point of eating 'notmally' and then this occurred , but currently I eat three full meals a day with no bolus and carbs in each meal.
 
It might have been me that said that about the antibodies @Tahero However, that’s just one part of the diagnostic process. I didn’t have antibodies testing until 25yrs after diagnosis. My Type 1 diagnosis was made on the basis of my age, weight, insulin sensitivity, etc.
 
Also the list of food above, I have never eaten in my life.....therefore not about to start now. I eat beans, potatoes, and eat between 80-150g of carbs a day. Sometimes now 80 in a meal. And still stays within range with no insulin?
 
I suppose what I'm trying to say is even the consultant isn't sure it is type 1.
 
You’re not taking any insulin at all now (no Lantus, no Novorapid)?
 
Tahero said:
I suppose what I'm trying to say is even the consultant isn't sure it is type 1.
Click to expand...

Are there others in your family with diabetes? I’m wondering about genetic diabetes, aka MODY.
 
No. Not immediate family. And I stopped taking all insulin two weeks ago and my blood readings are lower without it? That's what I don't get? I stopped it as two weeks ago had several operations for the thyroid eye disease, and didn't start it up again? I have an uncle who does years ago who was a type 2 diabetic and an aunt with gestational diabetes? Both on maternal side. Mum and dad none though or grandparents.
I'm not being argumentative with yourself as I know not a lot but it just doesn't seem ......quite right.
 
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