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Rude NHS diabetes nurse - new diagnosed with Steroid Induced Diabetes

M

missdingking

Newbie
Messages
1
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hi All,

I hope everyone is doing well and is having a lovely week, or at least trying to have a lovely week.

I recently got diagnosed with Type 2 through taking steroids and suppressants for a rare disease - which clearly didn't work as the rare disease spread more and now I have Type 2! It's been very emotional and traumatic experience to say the least. Unfortunately I have had 3 different diabetes nurses, and they all have been rude.

I wasn't even pre diabetic before taking steroids, no family history of diabetes - I was on a plant based diet and lost 10 stone through weight training over 8 years before taking steroids. I haven't gained any weight from the steroids, I haven't gained weight from starting the depo shot. My weight has been very stable. So you can see why a lot of this makes no sense to me, as I feel I was doing all the right things to be a 'healthier' person for myself. They found out I had diabetes through my bloods - as I don't have any symptoms and still don't.

The nurses I've experienced have been downright rude, insensitive and confusing. I want to make myself clear here, it's very uncommon to get diabetes from steroids. Of course, if you are pre diabetic or diabetic to be careful with steroids, and do whatever your specialist doctor or surgeon prescribing advises you. There is not a lot of education and not much information on Steroid Induced Diabetes. I was not told about it before taking them.

Anyway, rude nurses - I had received very conflicting information too. Today for starters - the drug I'm on, I feel fine on them which is a first as others have made me throw up. I don't care how much a nurse says that's normal, as someone who had been on steroids and got diabetes, that's no longer normal for me. Any side effects are not normal, especially if it last longer than a week. Other drugs made my levels all wonky and so no positive progression. The drug I'm on, I'm down by 25% which I am over the moon about! She wasn't. She just kept on having a go at me, wanting me to go on extra drugs and I said no. If one drug is working perfectly fine and I'm clearly sensitive to a lot of other drugs, why risk it? I said I feel fine on this one, and she like 'well diabetes can make you feel fine'. I was so confused by this. I've also had nurses say steroid diabetes is common, when doctors say otherwise.

I've had multiple apologies from doctors over this complex complication, and frankly I have PTSD from this whole ordeal.

I'm also an activist, I was wondering when I'm in the right head space, what I could do for better education on Steroid Induced Diabetes. It's driving me crazy.
 
Hi @missdingking and welcome to the forum, I’m sorry it’s in these circumstances. I’m afraid I have no knowledge or experience of steroid induced diabetes, but have had steroid injections which as a type 2 raised my blood sugar levels temporarily. I’m sorry you have had poor treatment from your diabetes nurses. I wonder if you could ask your GP to refer you to a diabetes team at the hospital, who I would hope have more knowledge of your condition. I’m guessing the nurses are a bit out of their depth, but that’s no excuse for rudeness.
 
Welcome to the forum and @missdingking. I’m sorry you are having a tough time if it with your medical team. I’m all for your body your choice , after doing your research. When your health is compromised, or ongoing it can be very stressful and draining.

Steroid induced diabetes is a thing. It’s actually a form of secondary diabetes. We actually have a few members with it. Stats Show that between 40 - 56% of people on glucocorticoids will have raised blood sugars causing steroid induced diabetes. Whilst you are taking steroids, they cause the liver to become less sensitive to the effects of insulin secretion, thus raising blood sugars. On a positive note once people come off steroids their blood sugars usually go back to normal.

Edited to add link on steroid induced diabetes.
And a sentence to make my statement clearer.

https://pmc.ncbi.nlm.nih.gov/articles/PMC4112077/
 
missdingking said:
.... nurses say steroid diabetes is common, when doctors say otherwise....
Click to expand...
Do these different opinions really matter? Steroid induced diabetes happens.
A member of my family is treated with steroids for a rare autoimmune disease. He has developed Type2 diabetes as a results. He is not concerned if developing Type2 is usual or not; it is just a fact that one of the side-effects of his treatment for the more serious disease is becoming diabetic.
 
My father became diabetic as a result of steroid medications, used to treat two serious medical conditions. His view was his diabetes was the least of his problems. He was correct, bearing in mind one of his other conditions took his life.

Steroid induced diabetes is not too uncommon, although appears more common where regular blood monitoring takes place - usually to monitor how the patient's body is coping with the package of medications they are often taking for the underlying condition.

Are you still taking steroids? Will any steroids you are still taking belong term, or even life-long?

Honestly, with some lifestyle changes, living with diabetes is fine. The generally recommended way of eating for healthy folks is not always great for those living with diabetes - particularly those who do not take blood sugar lowering drugs.
 
 
Get an appointment with the Specialist team. They are knowledgeable and will write down a script for your treatment to the surgery.
I don't know whether it is GP surgery targets or nurse training but some come across as dictatorial and unrelenting. Some are brilliant and lovely.

Sorry you have had a bad time but I have no experience of steroid induced diabetes.
 
I’m sorry you feel diabetic nurses are giving you a hard time. Like you, I have had several. I think probably 7 or 8 since I was first diagnosed 25 years ago.

Doctors and nurses receive very different training. Doctors’ training is more science-based, nurses get much more experience-based tuition, better suited to the very different job they do. Over the years I have found diabetes nurses can be particularly dogmatic and assertive. It can come across as harshness, but they have specific experience that doctors generally don’t.

If you are the kind of person who doesn’t take to that approach, it can be challenging. I note you say you are an activist. Doctors and nurses can feel threatened by people who ‘know too much’. I have had that problem many times, so I use appointments with medical professionals as an opportunity to listen to their opinions and then draw any conclusions afterwards.

This makes the experience less stressful than using an approach that might include an element of confrontation.

Wishing you all the best for the future.
 
@missdingking - We all have a steroid-induced blood glucose raise every day, when your circadian rhythm triggers a release of Cortisol to get you going for the day.

Cortisol - is a (naturally occurring) Cortico-Steroid, as are all other Cortico-Steroids; we usually just call them steroids (and for some reason distinguish Anabolic Steroids). So yes, unfortunately it's very much a thing, as @Melgar and others have said. The good news is that because you can clearly identify the cause (and it's path through increasing insulin resistance) and be confident that this has been a quick onset; you may take some comfort in the thought that it may also be possible to reverse the situation in the same manner, and that there is much less chance of any long-term damage to your body if you can.

As for the medical staff: diabetes is complicated and unfortunately there is much ignorance and ...let's say... a wide spectrum of open-mindedness.

I see it very much as part of the duty of those of us who have been forced to learn the truth; to try to patiently push back against some of that, in any way we can. One person with a change of heart might persuade a couple more, but one GP can influence thousands.
 
Unfortunately nurses who have a superior attitude who think they are gods gift to Diabetes Management are an ally if they are good and a pain in the **** when they arnt. As type 1 i have dealt with idiots like this for 50 years and most of the time i have more experience than they do. I make the choices that suit me and my Consultant & GP leave me to it. I explain my reasonings why i do things the way i do them or why i choose to add or subtract insulin units from my dosage. 9/10 times they say i made the right choice. DSN Nurses are a law unto them selves. You can take their advice and use medications to help your conditions.
 
Language in the medical world is vital to get right and I suspect as Rach said earlier that they are out of their depth and their inexperience translates to rudeness. In defence of nurses I have only ever encountered kind ones so I think it's the luck of the draw who you end up dealing with but if you're not happy do write a letter of complaint as these things cannot be changed unless this happens first. Best wishes and hope you find a kinder sort on your next encounter.
 
So sorry to hear your experiences. I have very severe asthma and when I have to take steroids to treat it my type2 goes utterly nuts. I can feel suicidal with it.( I've even called my nurse while away on holiday. She and my GP decided I should go as I was recovering from a long bout of illness and they reckoned a week in Norway would do me good! It did but I did feel lousy for most of it! I do wonder if the diabetes is at least in part due to the steroids over many years... There is a history of type 1 and 2 in my family..... Luckily I've had most recently two very sympathetic diabetes nurses and my asthma specialist understands the need for me to avoid getting ill and being careful how we treat me.
I would definitely try to surround yourself with medics who understand and support you. Ask to see a consultant find the GP who knows their diabetes .... And you can contact PALS as well. Anyone else, who is rude, seems ignorant, is tbh a waste of time and adds to stress, which makes diabetes harder to deal with....( I refused years ago to see asthma nurses at the surgery, I don't care they get paid to see me it's a waste of my time as I know far more about my illness and how to treat it than they'll ever know!)
Good luck.
 
Good afternoon or morning.

I take 10 mg of prednisolone daily, a steroid. I have been taking this nasty, but effective little drug as part of my treatment, due to having had a liver transplant many years ago.
The liver consultants use this steroid to bolster my anti rejection drugs.

I was informed by the liver and diabetic consultants that this drug would make it very difficult to control my blood sugars.

Please note I used the term consultants. These are hospital consultants. Not junior doctors or diabetic nurses.

Over the years I have had a few verbal interchanges with junior doctors and diabetic nurses and I have learnt that the best way to treat these inexperienced medical people is to smile, nod my head and ignore them.

Also the worst culprits are GP appointed “diabetic nurses” in my opinion. I ignore them total. If they start to get uppity or nasty, I tell them to stop it pointing out my blood sugar readings and I take Prednisolone and to read up on it.

Please feel free to pm me, if you want to.
 
alf_Josiah said:
Over the years I have had a few verbal interchanges with junior doctors and diabetic nurses and I have learnt that the best way to treat these inexperienced medical people is to smile, nod my head and ignore them.
Click to expand...
I entirely agree @alf_Josiah but on one occasion in 1999 this was an exception in my case, concerning a Junior Houseman:

“Why are you on such an old fashioned system?”
“Because it works.”
“Don't you realise that we do things differently nowadays? Our patients inject four times a day allowing them to eat what they like when they like.”
“That is what DAFNE (Dose Adjustment for Normal Eating, devised by Professor Stephanie Amiel at King's College Hospital) is about, and in 1998 Stephanie Amiel wrote me a very sympathetic letter, understanding my reasons for not wishing to start DAFNE.”
“What were they?”
“Chiefly that at the age of 41, I am trying not to put on weight, and being on the Lawrence Line Weight diet has kept me in trim up to the present day.”
“But that is not how we do things now.”
“Listen, so far you have not given me any concrete reason for switching, other than fashion.”
The way he addressed me irritated me so much that when I got home I wrote a long complaint to the head of the diabetes team. He sent a charming letter back, assuring me that he had spoken to the junior doctor. On the next visit I was seen by Peter who told me that the young man was suitably contrite. Suddenly I felt pity for him. Peter said “When our patients are upset by the way they are received, we have to deal with it appropriately.” As I left the clinic via W.H. Smith, who should be coming the other direction? He just said “Hi.” I hope he has progressed into a first class diabetologist now.
 
Hi missdingking, so sorry to hear of your dealings with rude nurses. Sounds like they thnk your steroids were for other reasons and not prescribed legitimately. Seems most diabetic nurses get grumpy when you question what they're asking you to do. I have over the years agreed with them, whilst I'm there but completely ignored their advice. It worries me that they are giving such bad advice knowing how difficult it is to control bs. You know your own body. After an episode with the diabetic nurse I've decided not to see her anymore. Why? because she told me to stop my bolus insulin completely for a week and just take the background insulin. I checked with my GP and he said it was ok to do that. Really, I thought, but if they think it's safe then I'll do what they say. I started leaving out the bolus insulin on Wednesday, today is Saturday and I'm feeling sick, foggy brain and lethargic. I know what those symptoms are (DKA), so decided to ignore all medical advice and start back on insulin. Feeling better almost straight away. Diabetic nurses learn from books, they don't know how each individual works or how the meds they prescribe works for each person, only you know that. Yes it makes you angry and frustrated when you're being told to do something that you know will upset your bs numbers. Let's all agree to ignore their grumpy remarks. The stress they cause doesn't help bs levels. At least we have this page to vent and it seems by some remarks that most diabetics meet with grumpy and rude nurses. I wish you well, and don't be too hard on yourself. (hugs)
 
Was this advice given because you were having a lot of hypo's @silverbirch
How were your levels when you stopped the bolus insulin, and did you check for ketones when you thought you had DKA?
 
Hopeful34 said:
Was this advice given because you were having a lot of hypo's @silverbirch
How were your levels when you stopped the bolus insulin, and did you check for ketones when you thought you had DKA?
Click to expand...
Yes the advice was given because of having a lot of hypo's. Having said that the Diabetes nurse was treating me under T2 diabetes and not T1. I did tell her that I had changed my diet and ate a carb free evening meal.
My levels are in 28 to 33>. I've lost 8lbs in weight in 4 days. I have had a DKA before so know the symptoms. I haven't felt like that since 4 years ago when I had my first one. No I didn't check Ketones as looking at my numbers, drinking and weeing for England, painful cramps in my legs, plus feeling sick all the time, I thought it obvious. Thank you for responding. Love your questions.
 
Last edited:
Hi @missdingking
I am sorry you are struggling with PTSD following your diagnosis. I can identify with some of the experiences you have, though one difference for me is that I do have close family members with T2 , T1 and LADA diabetes.

Firstly, the steroid meds. I do have a rare immune /allergy condition , and since I was a teenager have had several steroid injections, and have, when I get an upper respiratory tract infection, needed oral steroid meds. I have wondered if these have been a contributory factor in my T2 diagnosis at age 50. Though I accept there is not necessarily a single cause. Like you, I also was obese,( from my mid-twenties, following steroid meds for severe allergy in my case) Despite losing 50kg, I still fall into the overweight category. Which suggests I had /have metabolic syndrome. The definition of this, I do not like, much as it does make me feel I am being blamed for the condition. That does seem to be reflected in the attitude of some, but not all, HCPs. Also popular media, seems to make it all about blame if one has T2.
An article about Metabolic syndrome

Metabolic syndrome - Symptoms, diagnosis and treatment | BMJ Best Practice

Metabolic syndrome is a cluster of common abnormalities, including insulin resistance, impaired glucose tolerance, abdominal obesity, reduced high-density lipoprotein (HDL)-cholesterol levels, elevated triglycerides, and hypertension. Incidence is increasing in line with the number of people who ...
bestpractice.bmj.com

This following article explains steroid induced diabetes better than I can

Steroid-induced diabetes

Steroids can cause high blood glucose (sugar) levels. That’s why some people who take steroids go on to develop diabetes. This is known as steroid-induced diabetes, and is more common in people who are at higher risk of type 2 diabetes. What are steroids? Steroids are also known as...
www.diabetes.org.uk

As for rude nurses, I have met a few, but also so many more who have been quite receptive to the positive info I have to tell them. For me this includes info on how I manage my T2, with the fine balance of need to control my other rare condition with steroid meds, but some 20 years on from diagnosis still have not succumbed to the predictions one nurse made at my diagnosis. (Ever increasing meds insulin, sight loss, etc.) I usually, when encountering a new HCP for diabetes review, go armed with info on my use of Newcastle diet followed by the Low carb approach by Southport GP Dr David Unwin. Some take note, others stick to the mantra, of typical NHS advice.(low fat ‘healthy carb’ diet that doesn’t work for many with T2).

The good thing for me is that even though when I need steroid meds for my rare condition, and I know I will see much higher blood glucose levels for several weeks, these do settle again. Sometimes I just have to accept that the treatment for the most debilitating condition has to take precedence over T2 blood glucose control for a while.

I hope you can get help needed for PTSD, and that you can make use of our forum for support and advice. It is possible to have really good quality of life with diabetes. We all need to find our own best way of living with it. I hope you can, too.
 
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