Wrongly given steroids and now diabetic

[Keith_Jordan]

I went to see a GP because of a headache. He said I had Temporal Arteritis and gave me scrip for 60mg of Prednisolone daily. What he should have done is give one day dose at 60 mg to see if this made the headache disappear, referred me to Opthalmology at hospital, who would then have sent me to a Rheumatologist who would have booked a Temporal Artery Biopsy if he suspected the condition was positive. He would then have commenced steroid treatment.

Due to this procedure not being carried out and I did not get to see the right people for a few days, the steroids skewed the blood data, but the examinations carried out showed there was sufficient doubt to confirm Temporal Arteritis. I agreed to the stresses of the biopsy which confirmed negative. However I was now on a course of high volumes of steroids which would take a year to get off them.

A blood sample showed I was now diabetic. This may go or may not when the steroids have finished. However I now have Cellulitis, low Folic Acid and Potassium levels and indications that I may need some heart tablets. 7 weeks ago I was fit and active and now with legs and ankles like miniature tree trunks I cannot mobilise without a stick, the pain is excrutiating and there is no support from the medical community since I mentioned legal action. Indeed on Sunday a Consultant came to see me about this in an almost threatening manner. He said "How do you think the poor GP would have felt if he had not prescribed Prednisalone and you had gone blind or had a stroke. You should consider this poor man" I replied " Yes but if he hadn't I would not have diabetes, I would be walking and not have all the other ailments" He looked at me with an arrogance I have never seen before in someone who is supposed to care and said with his nose in the air before walking away without right of reply, " Well this is one of the side effects of steroids and you should just accept it.

WELL THIS MAN WON'T! I WILL TAKE THESE ARROGANT EVIL PEOPLE TO COURT IF IT IS THE LAST THING I DO ON THIS MORTAL PLAIN.

 

[Nicksu]

If you are constantly on steroids you need to be weaned gradually off them - you can't come straight off them - not at that dose. They are quite correct in saying that it will take time to come off them - its usually done by a drop of 5mg every few weeks - my diabetes is steroid induced so I've been down this path before.

 

[Keith_Jordan]

If you are constantly on steroids you need to be weaned gradually off them - you can't come straight off them - not at that dose. They are quite correct in saying that it will take time to come off them - its usually done by a drop of 5mg every few weeks - my diabetes is steroid induced so I've been down this path before.

I understand the step off process, it is the fact that I was wrongly put on them in the first place that makes me angry. I woul not be in this position now if correct procedures had been followed. Thank you for your reply.

 

[Resurgam]

That seems a bad place to be - I hope that you can get some redress.
All I can advise from my own experience, is that rather than using the least assistance to walking - a single stick, that you take as much strain as possible off your legs, even if it means using two crutches, as it might make you more mobile, which might just help give you an advantage, over time.
I was hit by a car last year, no bones broken but some tissue damage and swelling and found that using two walking poles made a difference to my stability and subsequent recovery.
How is your diabetes being treated?

 

[Keith_Jordan]

That seems a bad place to be - I hope that you can get some redress.
All I can advise from my own experience, is that rather than using the least assistance to walking - a single stick, that you take as much strain as possible off your legs, even if it means using two crutches, as it might make you more mobile, which might just help give you an advantage, over time.
I was hit by a car last year, no bones broken but some tissue damage and swelling and found that using two walking poles made a difference to my stability and subsequent recovery.
How is your diabetes being treated?

My treatment at the moment is 4 Metformin tablets and three Gliclazide per day. This will change as the steroid dose lowers. Blood sugar can almost reach 30 even at this dose but comes down to around 6 by morning. This is with no sugary foods.5tt

 

[Resurgam]

You are avoiding carbohydrate foods - not just sugar I hope.
Carbohydrates are broken down and absorbed as simple sugars, so they put up the blood glucose levels.
Eating a low carb diet is quite a powerful diuretic - I wonder if that could help with the swollen legs, though the Gliclazide indicates that the diet should be adjusted slowly.

 

[Keith_Jordan]

You are avoiding carbohydrate foods - not just sugar I hope.
Carbohydrates are broken down and absorbed as simple sugars, so they put up the blood glucose levels.
Eating a low carb diet is quite a powerful diuretic - I wonder if that could help with the swollen legs, though the Gliclazide indicates that the diet should be adjusted slowly.

In hospital I was fed the "correct " food. On one occasion this consisted of a lot of mashed potato followed by a sweet apple crumble and fruit juice. I have been sorting my own food now with lowest possible sugar and carb content, I have also used this site to look or inspiration and have found some good recipes. My problem is that I love hot spicy food. I have been known to add Scotch Bonnets to Vindaloos on occasion as I have found them on odd days to be bland, how weird is that for a 64 year old?

 

[leslie10152]

I went to see a GP because of a headache. He said I had Temporal Arteritis and gave me scrip for 60mg of Prednisolone daily. What he should have done is give one day dose at 60 mg to see if this made the headache disappear, referred me to Opthalmology at hospital, who would then have sent me to a Rheumatologist who would have booked a Temporal Artery Biopsy if he suspected the condition was positive. He would then have commenced steroid treatment.

Due to this procedure not being carried out and I did not get to see the right people for a few days, the steroids skewed the blood data, but the examinations carried out showed there was sufficient doubt to confirm Temporal Arteritis. I agreed to the stresses of the biopsy which confirmed negative. However I was now on a course of high volumes of steroids which would take a year to get off them.

A blood sample showed I was now diabetic. This may go or may not when the steroids have finished. However I now have Cellulitis, low Folic Acid and Potassium levels and indications that I may need some heart tablets. 7 weeks ago I was fit and active and now with legs and ankles like miniature tree trunks I cannot mobilise without a stick, the pain is excrutiating and there is no support from the medical community since I mentioned legal action. Indeed on Sunday a Consultant came to see me about this in an almost threatening manner. He said "How do you think the poor GP would have felt if he had not prescribed Prednisalone and you had gone blind or had a stroke. You should consider this poor man" I replied " Yes but if he hadn't I would not have diabetes, I would be walking and not have all the other ailments" He looked at me with an arrogance I have never seen before in someone who is supposed to care and said with his nose in the air before walking away without right of reply, " Well this is one of the side effects of steroids and you should just accept it.

WELL THIS MAN WON'T! I WILL TAKE THESE ARROGANT EVIL PEOPLE TO COURT IF IT IS THE LAST THING I DO ON THIS MORTAL PLAIN.

Fingers crossed @Keith_Jordan, I hope it goes well for you.

 

[DCUKMod]

In hospital I was fed the "correct " food. On one occasion this consisted of a lot of mashed potato followed by a sweet apple crumble and fruit juice. I have been sorting my own food now with lowest possible sugar and carb content, I have also used this site to look or inspiration and have found some good recipes. My problem is that I love hot spicy food. I have been known to add Scotch Bonnets to Vindaloos on occasion as I have found them on odd days to be bland, how weird is that for a 64 year old?

Keith - I love spicy food too, and on the low carb way of eating, I still have lots of delicious meals. If you're a curry fan, is the issue the rice that goes along with it, or something else?

If you can help us understand what you like and what you find tricky, there'll be lots of people able to help.

I appreciate we're going a bit off topic to your original post, but for any of us in the T2 group, what we eat and drink is pretty important, and most would agree important in getting to decent outcomes.

 

[Dark Horse]

Did you have any visual symptoms? What makes you think that you were prescribed prednisolone wrongly?

 

[Hoddington]

My Sympathies, my T2 resulted from a similar pathway following a misdiagnosis for Cancer....

 

[Keith_Jordan]

Keith - I love spicy food too, and on the low carb way of eating, I still have lots of delicious meals. If you're a curry fan, is the issue the rice that goes along with it, or something else?

If you can help us understand what you like and what you find tricky, there'll be lots of people able to help.

I appreciate we're going a bit off topic to your original post, but for any of us in the T2 group, what we eat and drink is pretty important, and most would agree important in getting to decent outcomes.

Will be studying more and want to learn and restore some quality to my life

 

[linnylinny]

steroids are usually given for inflammation, lots of people suffer from that,

 

[Keith_Jordan]

Did you have any visual symptoms? What makes you think that you were prescribed prednisolone wrongly?

I went to see the "quack" because of a headache. He stated then I had Temporal Arteritis without any tests or secondary advice. The recommended advice is that you should be referred same day to nearest A&E with Opthalmology Specialist who will look at the backs of eyes for any signs of bleeds. A full eye test showed I was having distorted eye sight due to needing distance glasses. I also did not show any other signs to support the prognosis. Due to being put on 60 mg per day all blood tests were nulled. The doctor should have given one days supply of steroids. If the headache had disappeared it was a good pointer to confirm the disease. However I had to call 111 4 days later due to the pain. It was then that I saw the consultants who said I could not have the disease and wanted blood tests. However all tests were nulled by the quantity of steroids. I agreed to a painful biopsy which also confirmed no Temporal Arteritis. A few days later my glasses arrived and the world came back into focus. Had Prednisolone been prescribed correctly and in line with guidance I would not be in this predicament and would not be part of this forum.

 

[Keith_Jordan]

steroids are usually given for inflammation, lots of people suffer from that,

Read the use steroids are used for, particularly the high dose values which can cause many complications

 

[Dark Horse]

I went to see the "quack" because of a headache. He stated then I had Temporal Arteritis without any tests or secondary advice. The recommended advice is that you should be referred same day to nearest A&E with Opthalmology Specialist who will look at the backs of eyes for any signs of bleeds. A full eye test showed I was having distorted eye sight due to needing distance glasses. I also did not show any other signs to support the prognosis. Due to being put on 60 mg per day all blood tests were nulled. The doctor should have given one days supply of steroids. If the headache had disappeared it was a good pointer to confirm the disease. However I had to call 111 4 days later due to the pain. It was then that I saw the consultants who said I could not have the disease and wanted blood tests. However all tests were nulled by the quantity of steroids. I agreed to a painful biopsy which also confirmed no Temporal Arteritis. A few days later my glasses arrived and the world came back into focus. Had Prednisolone been prescribed correctly and in line with guidance I would not be in this predicament and would not be part of this forum.

The advice to refer to ophthalmology the same day is for patients with suspected GCA who have recently developed specific visual symptoms such as vision loss, field defects or diplopia. https://cks.nice.org.uk/giant-cell-arteritis#!scenario Blurring from needing distance glasses is generally slow onset rather than the sudden onset of visual symptoms associated with GCA (although a sudden need for glasses can occur due to undiagnosed diabetes).

British Society for Rheumatology guidelines for the management of giant cell arteritis can be read here:- https://academic.oup.com/rheumatolo...BSR-and-BHPR-guidelines-for-the-management-of

Temporal artery biopsy is not a trivial procedure and the fact that the hospital were willing to do it suggests that it was reasonable to suspect GCA. In this case, the recommendation is to start prednisolone immediately, without waiting for further tests, as blindness can occur very rapidly and, once it occurs, does not improve with treatment. The NICE Clinical Knowledge Summaries suggest that the response to prednisolone be reviewed within 48 hours. https://cks.nice.org.uk/giant-cell-arteritis#!scenario and the BSR recommend temporal artery biopsy is performed within 14 days.

If you want to make a complaint about the care from your GP, you can do this by contacting NHS England https://www.england.nhs.uk/contact-us/complaint/complaining-to-nhse/ They will investigate whether your treatment was appropriate and produce a report guided by the Duty of Candour legislation:- http://www.medeconomics.co.uk/article/1343208/duty-candour-regulation-general-practice

There are some tips about coping with side-effects of steroids here:- https://www.hss.edu/conditions_steroid-side-effects-how-to-reduce-corticosteroid-side-effects.asp

 

[Keith_Jordan]

The advice to refer to ophthalmology the same day is for patients with suspected GCA who have recently developed specific visual symptoms such as vision loss, field defects or diplopia. https://cks.nice.org.uk/giant-cell-arteritis#!scenario Blurring from needing distance glasses is generally slow onset rather than the sudden onset of visual symptoms associated with GCA (although a sudden need for glasses can occur due to undiagnosed diabetes).

British Society for Rheumatology guidelines for the management of giant cell arteritis can be read here:- https://academic.oup.com/rheumatolo...BSR-and-BHPR-guidelines-for-the-management-of

Temporal artery biopsy is not a trivial procedure and the fact that the hospital were willing to do it suggests that it was reasonable to suspect GCA. In this case, the recommendation is to start prednisolone immediately, without waiting for further tests, as blindness can occur very rapidly and, once it occurs, does not improve with treatment. The NICE Clinical Knowledge Summaries suggest that the response to prednisolone be reviewed within 48 hours. https://cks.nice.org.uk/giant-cell-arteritis#!scenario and the BSR recommend temporal artery biopsy is performed within 14 days.

If you want to make a complaint about the care from your GP, you can do this by contacting NHS England https://www.england.nhs.uk/contact-us/complaint/complaining-to-nhse/ They will investigate whether your treatment was appropriate and produce a report guided by the Duty of Candour legislation:- http://www.medeconomics.co.uk/article/1343208/duty-candour-regulation-general-practice

There are some tips about coping with side-effects of steroids here:- https://www.hss.edu/conditions_steroid-side-effects-how-to-reduce-corticosteroid-side-effects.asp

Thank you for your reply. The GP initiated daily 60mg doses which is against the guidelines I have read and also senior doctors agree. He could have given one dose and sent me immediately to Opthalmology where the backs of my eyes would have been checked for bleeds. In fact my eyes were pronounced healthy. His referral was for a few days time but three days after his "diagnosis?" I was still suffering headaches and 111 sent me straight to hospital. Here the first consultant said it would be unlike to be Temporal Arteritis as steroids would have stopped the pain within one day. I then went for the eye check up and the consultant there said he didn't think it was Temporal Arteritis as there were no signs of it, in addition I wasn't displaying any other symptoms. The next day, I saw the Rheumatologist who expressed grave doubts as to the diagnosis. He suggested I had the biopsy merely to prove I didn't have the disease. This was done a couple of days later and came back conclusively negative. Since the onset of diabetes, fall in Potassium, reduction of platelets, large volume water retention, need for a heart scan, contracting cellulitis requiring intravenous antibiotics at home from a District Nurse, I am utterly at a loss how such a situation could be allowed to be caused by a General Practitioner who had the arrogance to prescribe before seeking advice. Our surgery is very up-to-date and if you need an emergency appointment on the same day you get one.

The only report the NHS and the GP Practice will be getting is one from the solicitors with whom I am in touch and who have started to put together their basis of facts with respect to procedures for this disease based upon NICE and other guidelines. These are being drafted by Medical Professionals and the case is only going ahead as they have found a number of areas of doubt as to the suitability of treatment etc. at the early stages.

Once again, thank you for your reply.

 

[Dark Horse]

Thank you for your reply. The GP initiated daily 60mg doses which is against the guidelines I have read and also senior doctors agree. He could have given one dose and sent me immediately to Opthalmology where the backs of my eyes would have been checked for bleeds. In fact my eyes were pronounced healthy. His referral was for a few days time but three days after his "diagnosis?" I was still suffering headaches and 111 sent me straight to hospital. Here the first consultant said it would be unlike to be Temporal Arteritis as steroids would have stopped the pain within one day. I then went for the eye check up and the consultant there said he didn't think it was Temporal Arteritis as there were no signs of it, in addition I wasn't displaying any other symptoms. The next day, I saw the Rheumatologist who expressed grave doubts as to the diagnosis. He suggested I had the biopsy merely to prove I didn't have the disease. This was done a couple of days later and came back conclusively negative. Since the onset of diabetes, fall in Potassium, reduction of platelets, large volume water retention, need for a heart scan, contracting cellulitis requiring intravenous antibiotics at home from a District Nurse, I am utterly at a loss how such a situation could be allowed to be caused by a General Practitioner who had the arrogance to prescribe before seeking advice. Our surgery is very up-to-date and if you need an emergency appointment on the same day you get one.

The only report the NHS and the GP Practice will be getting is one from the solicitors with whom I am in touch and who have started to put together their basis of facts with respect to procedures for this disease based upon NICE and other guidelines. These are being drafted by Medical Professionals and the case is only going ahead as they have found a number of areas of doubt as to the suitability of treatment etc. at the early stages.

Once again, thank you for your reply.

My advice would be to make the complaint to NHS England first and wait for the results of the investigation before spending money on solicitors. The report would be sent to you and you can then pass the information on to your solicitors, as appropriate.

Bear in mind that guidelines are just that - there is actually a range of acceptable appropriate care.

Good luck with your condition and I hope it resolves as soon as possible.

 

[Keith_Jordan]

My advice would be to make the complaint to NHS England first and wait for the results of the investigation before spending money on solicitors. The report would be sent to you and you can then pass the information on to your solicitors, as appropriate.

Bear in mind that guidelines are just that - there is actually a range of acceptable appropriate care.

Good luck with your condition and I hope it resolves as soon as possible.

I have to send a formal complaint to the GP and wait to see if I get a response. I could forfeit a legal claim if I go down the NHS route and lets face it, they are a disaster!

 

[Dark Horse]

I have to send a formal complaint to the GP and wait to see if I get a response. I could forfeit a legal claim if I go down the NHS route and lets face it, they are a disaster!

I don't understand why complaining via NHS England would forfeit a legal claim. In my experience the NHS has been very professional and thorough when investigating incidents of concern and, what's more, they won't charge you.