Steroid-induced diabetes - permanent or temporary?

taks

Newbie
Messages
2
Hi everyone,

First post here. I'm looking for people who have experience with steroid-induced hyperglycemia. I'm trying to figure out how to know if it's temporary or not. I'm wondering if anyone had any insight into my experience?

I had an organ transplant yonks ago, for just bad luck reasons. No diabetes or other health conditions. I've been on between 1mg and 5mg of prednisolone for 10 years. Recently, that was increased to 40mg to treat some acute rejection. A week or so later I presented to the ED with blood glucose reading of 28. I was immediately put on insulin as an inpatient, then given long and short acting insulin to use at home while self-funding Libre. The doctors don't know if it'll be temporary or if they've unmasked Type 1. But, GAD is negative. C-Peptide was around 650. No insulin antibodies. HbA1c levels probably contaminated by the prednisolone induced high blood sugar.

Do you know what else they might do to decide if I'm Type 1? I'm worried that I'm being diagnosed with something I don't have, and won't have a chance to prove it. I'd like to go off insulin once my pred is weaned down again, and measure my baseline glucose levels on a normal day. Do you know what the normal proceedure is?

I've found it quite okay to keep my levels between 4 and 10 (mostly under 20g carb per meal) and my pred is now down to 15mg per day, so the spike in the afternoon is less pronounced (and covered by my lunch time insulin dose).

What does someone without 'everyday' diabetes' glucose pattern look like if they are on insulin therapy? For instance, if you have temporary gestational diabetes, can the glucose pattern spike just as high and low and someone with Type 1? But then go back to normal when insulin is stopped?

Would love to hear other people's experiences. Thank you.
 

xfieldok

Well-Known Member
Messages
4,182
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Welcome to the forum.

Tagging @JohnEGreen for comment.

I am weaning off prednisolone from 40mg, currently on 12, moving towards 10, so I feel your pain. It took months to get proper help from the surgery . My glucose was going sky high and it took insulin to beat it into submission.

I believe in some people the diabetes can go away. It is the luck of the draw.
 
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JonB100

Member
Messages
5
Hi,
I've just joined the forum in an attempt to reply to the initial post(er), who has a transplant, is a long time user of steroids and is newly diagnosed as diabetic.

This is a fairly unusual series of combined conditions, which to a large extent mimic my own.

I'm at present trying to follow a new steroid regime due to secondary adrenal insufficiency, to replicate normal circadian levels, in my case, hydrocortisone.

I was diagnosed as diabetic two years ago and too placed on insulin. I've been trying to combat frequent morning hypoglycaemia, and am hopefully now succeeding. Tomorrow I'm again reducing my once a day insulin injection and will be recording glucose levels every two hours.

Post transplant diabetes is an 'interesting' subject, so rare that it's difficult to get any useful advice, even from medically informed folks.

I would like to hear from others in a similar leaky boat ...
 
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xfieldok

Well-Known Member
Messages
4,182
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Welcome to the forum @JonB100. We are a mixed and varied bunch. I was dx T2 in 2017. In may 2019 I was diagnosed with myasthenia gravis and put on prednisolone whilst the immune suppresants took ffect. The first type was doing my liver in and they changed it to mycophenolate wich is a post transplant drug. I am aiming to get down to 10mg but it has been a hard road. The staff at the local surgery were like deer in the headlights and took months of fighting to get what I wanted ie insulin.

Fortunately, I was testing anyway, as I had done from first dx. What those tiny tablets do to you is horrendous. I also find that as reducing them, they give you a couple of days and then they stick it to you with a huge spike. Pesky little beggars.
 

JonB100

Member
Messages
5
Welcome to the forum @JonB100. We are a mixed and varied bunch. I was dx T2 in 2017. In may 2019 I was diagnosed with myasthenia gravis and put on prednisolone whilst the immune suppresants took ffect. The first type was doing my liver in and they changed it to mycophenolate wich is a post transplant drug. I am aiming to get down to 10mg but it has been a hard road. The staff at the local surgery were like deer in the headlights and took months of fighting to get what I wanted ie insulin.

Fortunately, I was testing anyway, as I had done from first dx. What those tiny tablets do to you is horrendous. I also find that as reducing them, they give you a couple of days and then they stick it to you with a huge spike. Pesky little beggars.


Are you taking 12mg prednisolone? Are you trying to wean off this med or just reduce it? Is it necessary due to other health conditions?

I have a great deal of experience of with prednisolone and eventually changed to hydrocortisone. Pred is seen as four times as strong as hydrocortisone and has effects on the body for that last a great deal longer and so it is near impossible to use in an attempt to replicate a 'normal ' daily cortisol leve(s).

12mg is equivalent to 48mg of hydrocortisone, the normal range is seen as 15mg to 25mg.

Perhaps you know most of this ... it's interesting to hear of others experience of a potentially life saving but also dangerous drug! And then how it influences blood glucose ....
 

xfieldok

Well-Known Member
Messages
4,182
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Usual dose is 60mg but I couldn't tolerate more than 40. Weaning down to 10 and it will be up to the neurologist whether I reuce further. It could take until April for the mycophenolate fully kicks in. MG is auto immune.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
My late father was a steroid induced diabetic. His steroids were administered intravenously-venously to suppress the condition that eventually claimed him. We were told at the outset this is what would happen, as his underlying disease was so very aggressive in its presentation.

Whilst my father never actually progressed on to insulin, despite his ginagerous doses of steroids, he managed himself very well with diet and one drug, which I believe, although now couldn't prove to be Metformin. I can only guess he had very few other factors for a general diabetes diagnosis.

The only reason I type this, @taks , is to illustrate how diverse the conditions and outcomes for steroid induced diabetes can be. For each of us, there is a personal back-story with pros and cons towards a diagnosis with diabetes anyway. Add in a dollop of luck, good or bad, and you have your personal circumstances.

That you have do antibodies and it looks like plenty of your own insulin, it looks like a T1 diagnosis wouldn't be on the cards, right now, but who knows what the future holds for any of us. To be clear, I am not making ny form of diagnosis there, but just interpreting your statements, which may not be the whole story, depending on so many other factors in your life, such as whether you have any other autoimmune conditions in your life already.

Clearly, you have to manage your health in the round, and sometimes that means some aspects steal the intellectual spotlight, and others go slightly to the background, t gain some balance in your life.

Many people, of all sorts (except for T1s) arrive here taking insulin and are able to reduce or remove it from their lives, by making adjustments to their lifestyle, but not everyone can. Nobody's can tell who will be lucky and who will be less so.

So, having hope of reducing or dropping your insulin is healthy, but having an expectation would not be sensible at his time.

Take it steady, and good luck with it all.
 

JonB100

Member
Messages
5
Taks I had a liver transplant nine years ago, for PSC, an autoimmune condition. As you know a consequence of taking strong long term anti rejection drugs such as Tacrolimus, is a number of other unfortunate health conditions.

Two years ago I was diagnosed as diabetic and put directly on insulin, Humilin I twice daily. PTDM is unusual but more common soon after transplant. After transplant my colitis, a feature of my liver condition, became very active, hence the use of prednisolone and consequential secondary adrenal insufficiency.

Often folks on long term corticosteroids suffer from high blood glucose levels, and this could be a related explanation of my eventual diabetes. But other than perhaps many years ago my steriod use has been well managed and I don't think this explains my current diagnosis.

Three years ago I luckily caught PTLD in it's infancy, Burkitts lymphona, an extremely aggressive cancer. By chance this was identified while undertaking an experimental voluntary colonoscopy. Otherwise I wouldn't be here typing this. I strongly suspect, or hope, that my diabetes was a consequence of the drug regime experienced to eradicate this B cell cancer, Rituximab.

Only in the last week have a realised that my diabetes has been confounded by my hydrocortisone use. For six years I've taken this drug twice daily, in the hope of completely weaning off it. This has meant frequent morning hypoglycaemic events.

So now I'm splitting my cortisol three ways, taking a first 10mg dose at 6 a.m. I'm taking blood glucose readings every waking two hours. I can see the morning gluconeogenesis process raising my levels before breakfast. I'm now dropping my insulin slowly by two units per week, today at 12 units once a day.

I'm hoping to eventually be insulin free and to have resolved my diabetes.

Strange how optimistic I am, - we will see.
 

taks

Newbie
Messages
2
Hi everyone,

I just want to say thank you so much for your very considered replies. I'm still quite overwhelmed, so I tried to avoid the forms for a bit. I'm on 10mg of prednisolone now, and managed to convince my DSN to let me come off Levemir in the evenings as my overnight blood sugars stay flat all night at just under 5mmol/L. My next experiment is slowly reducing my lunchtime fast-acting, which at the moment is 6 units to combat the slight raise I think I still see from the prednisolone. I'm pretty much in target the whole time now.

The problem I have right now is that my next diabetes appointment at the hospital is in April - do I really have to wait that long to see someone in person? I really want to do more experiments to see whether my pancreas still produces insulin. I have received no evidene to suggest that my pancreas isn't fine. I can't wait till I can discuss with them going off insulin completely and intensively watching with my Libre what happens.

Thank you for all your good wishes. I am so hungry. I've gone to 10-20g carbs per meal, and no snacks inbetween. I'm being strict because I think it's the best way to keep my transplant kidney healthy. The DSN's though think I could be more flexible, but there's not much communication between them and my renal doctors. I'm sort of running blind when every appointment has a month gap and my latest C-Peptide test seems to be lost in the system somewhere. I just want to eat a pastry at 3pm.

Thank you.

Edit:
C-Peptide: 628 pmol/L
GAD: 'Negative'
Insulin IgG Ab: 3.4 mg/L 'Negative'
Islet Antige 2 (IA-2): <9.9 IU/mL 'Negative'
HbA1c: 41 mmol/L (would still include high blood sugar from steroids before control with insulin)
Insulin regime: 2, 6, 4 units fast acting; 9 units long acting. Each meal about 10-20g carb. Mostly always in range. Hungry.
 
Last edited:

Tophat1900

Well-Known Member
Messages
2,407
Type of diabetes
Type 3c
Treatment type
Other
Dislikes
Uncooked bacon
Hello,

I'm a double lung transplant recipient. So, steriods are part of that treatment along with Tacro. Tacrolimus inhibits insulin secretion on it's own, and we all know what prednisone does to bg levels, it impairs beta cell function. I'm on 7mg a day, I take levimer and split the dose.

My transplant was in 1997, so have been on pred ever since. I have been on insulin for the last 3 years, the drugs just basically wear down the production of insulin over time. And I do low carb/keto to do my best to manage it.... and that may well of prolonged the introduction of insulin. Everyone at the lung transplant clinic I attend is diabetic. I should point out I have no idea what their diet is like. This does play an important part in the development of steriod induced diabetes.

The dietician is a believer in continuing to eat the same foods as before that certainly contributed to the development of diabetes. Believes sweet potatoes and wholegrain bread is perfectly healthy and a good choice. I think this is absolute rubbish. If your pancreas is having a hard time with the drugs then it makes no sense to be provoking it further with foods that require a lot of insulin. The other thing is if you are a TOFI of not, this I think is important. It is much harder for a TOFI to deal with high carb stuff like bread for example then it is for someone who can store a lot of fat. The work load on the pancreas is just greater and imo you can become a diabetic much quicker.

The anti-rejection medications increase the risk of heart disease, and prednisone really elevates the risk. This info has most likely been collected from people taking these meds and following the SAD (standard awefull diet). Which I think makes diet and avoiding all the high carb foods and rubbish really important. Just my thoughts on it.
 

JonB100

Member
Messages
5
If interested please see my original post above introducing myself, issues and background - regarding a liver transplant and newly diagnosed diabetes + adrenalin insufficiency / long term steroid use.

Anyway to be short and to the point, after two years on Humulin I insulin, I am no longer a diabetic. I have weened myself off insulin, have steady glucose blood levels and normal HbA1c readings.

I've also lost and stabilised my weight at 72kg, a reduction after stopping insulin of about 3.5 kg (half a stone).

It took about 12 weeks to slowly reduce my insulin intake from 18 to 0 units, by about 2 units per week. For those on steroids who my be interested, a took and still take daily 20mg of hydrocortisone but have moved from a dose of 10mg twice daily to 10mg at 6:00 am, 7.5mg at 12:00 and 2.5mg at 18:00. This is most likely a simple physiological substitution, similar to the level my body would produce not adrenalin insufficient.

One of my real problems was consistently very low blood glucose levels in the morning. I experimented by testing my blood glucose on waking (often high 3's to low 4's) and then at least one unit higher twenty minutes after taking 10 mg of hydrocortisone. So one aspect of my diabetes was instantly resolved by simply taking my forstvdoes of steriod early in the morning. This replicates what happens to non diabetic folk, when a morning surge if cortisol pulls glucose stored in the liver and so raises blood glucose levels in preparation for the days activities.

Anyway six months later I still no longer take or need insulin and can eat anything I desire ....