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Misdiagnosed and now misprescribed

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J

JayType 1

New Member
Relationship to Diabetes
Type 1
Good evening,
I posted previously about being misdiagnosed while an inpatient by an endocrinologist as Type 2 some four to five years ago. 10 months ago, I was put on insulin, Gliclazide and Metformin+ Sitagliptin tablets, which made no improvement whatsoever. Early December I saw an endocrinologist at a diabetic clinic to find out that I had been Type 1 all along.

Although the Diabetes clinic consultant changed my prescription to the new insulin, the Gliclazide and Metformin were continued. Only when a friend went to the chemist for me, a casual chat with the pharmacist resulted in being advised that I shouldn’t be taking the tablets on top of the insulin.

Also, I have gone from injecting one time daily to 6 times minimum, or from 28 times a month to 126. I have run out of needles, blood sugar test strips and keytone strips on more than one occasion including Christmas. The pharmacist informed that they can only dispense what they have been authorised to. They kindly managed to get me an emergency supply. I wrote a letter to the endocrinologist and to my GP asking if I should be taking the tablets and explaining that someone needs to take control of this sorry situation. The endocrinologist called me, to say that I should stop taking the pills. She explained that it wasn’t her fault as she cancelled the tablets on the prescription by computer, then said it must have been the computer’s fault. Not her fault, then she said it wasn’t just her fault, that ‘we’ are all to blame.
Having already been misdiagnosed by one diabetologist, I have now been subjected by another one to the medical equivalent of victim shaming. before being properly diagnosed the diabetic specialist nurse insisted it must be the way I inject or my diet that was to blame for lack of progress!

I am house bound and take medication for other ailments dispensed via a dose-it box/blister pack due to mobility and poor memory issues. Four days after the conversation, my weekly medication arrived. EXACTLY the same, 12 Gliclazide and Metformin+ Sitagliptin tablets wrongly prescribed. No increase in test strips, zero ketone strips. I know have to try to identify and remove 12 tablets from my daily medication.

My readings have been 15.6, 22.7, 5.2 15.3 today. I eat well and healthily and have never been a fan of fast or junk food. I now inject Abasaglar 23 units and Humalog 8+4+4 units daily. I still have greatly fluctuating (mostly high) blood sugar readings, I understand and appreciate that it will take time to find a correct dosage. Also I am learning slowly but surely about carb counting thanks to the great advise and guidance from contributors on the forums. thanks for all the advice.
Has anyone else had similar difficulties and what are my options, I live alone have a real fear for my health and I am desperately afraid that I will be removed from the diabetic clinic for being troublesome.

I am sorry that my post is so long, I am in dispair and don't know what else to do.
 
Arrange a telephone appointment with your GP and ask them to change the repeat prescription immediately whilst on the phone to you to whatever you want and ask them to send an immediate prescription through to the pharmacy for whatever is missing.

Then the next day ring the pharmacy and ask if they have it and check to make sure they'll get it to you.

Having done that write to the Practice Manager at the surgery - and COMPLAIN!

Normally I'd say 'Change your GP surgery' - but if you are housebound I daresay that might be problematic for you - but it's a shame you can't !

Our surgery is good in some ways but useless in others - and it's always on the Admin side they fall down one way or the other, I'd hate to be invited to a booze up at a brewery they'd organised!
 
Hi Jay. That’s shocking. When you can please do as @trophywench has advised. Also it’s my understanding that as you have T1 they should not be limiting your test strips, so ask and if necessary demand more.
 
Unfortunately, I also had a telephone appointment with my GP last Tuesday and sent a complaint letter to my health centre. The GP gave me the same assurances as the diabetes consultant. No action was taken.

Thanks trophywench for your suggestion, I will call the pharmacy that delivers my prescription and post an update afterwards.

I got a friend to open the week's dose-it box to separate and remove the Gliclazide and Metformin from other tablets and I have now sent the tablets by post along with an accompanying letter to the consultant.
 
LOL at the last sentence Jay! You've tried being subtle so I like that action !
 
Hi Jay
I started on insulin about ten weeks ago slowly building up the units and now injecting twice daily. I was kept on Gliclazide until my bg levels dropped into single figures and then the Glic was stopped and has been taken off my repeat prescriptions.
I changed surgery when they failed to inform me that my consultant had told them to prescribe Creon six months prior. I now make sure I have copies of all my consultants letters to my GP. I have to say my current surgery keeps me well informed of any test results.
Have you ever had your GP visit you at home since the misdiagnosis?
 
Also have you ever had your medication reviewed? I regularly have every item on my repeat prescription regularly reviewed along with several blood tests during the year. Strange your GP has never queried your medication or dosage.
 
Sorry to stray. Davein why do need creon? Did your consultant not discuss it with you? When my consultant alters or changes medication with me it is discussed. Then I can go into surgery and sort it out if it’s not been put on my prescription list. If your consultant hasn’t discussed this with you then I would be having a pop at him first Blame needs to be apportioned. start from the source first.
 
MY first appointment with the endocrinologist was at a diabetic clinic only last month. What I think has happened is that the GP surgery has erroneously passed responsibility for my diabetes condition to the endocrinologist. That makes it approximately six weeks since I was properly diagnosed as Type 1 and had the insulin changed and tablets reviewed.

Trophywench, don't encourage me haha
 
Creon production is one of the other functions of the pancreas, so if more of it is affected than simply insulin production, it becomes difficult for the body to digest and absorb nutrition from food, simply.
 
I'd go potty if my diabetes was NOT handled by an endo and team at a diabetes clinic! GPs don't know anywhere near enough about Type 1 to be 'experts' - and they aren't even supposed to be cutting edge expert at any other condition either! They are required to know as much as they can about every condition in the medical dictionary - but present em with a problem and the typical reply is 'What do the hospital say?' LOL
 
Hi Hepato
I went to a follow up appointment with a consultant a few days after having a scan (one of many), and was diagnosed with re-accuring pancreatitis (now autoimmune pancreatitis).I had bloods taken and also a stool sample taken the same day.
Apparently the stool sample test results showed that my pancreas was failing to produce emzymes necessary for digestion due to the damage caused by several bouts of pancreatitis. Thus he wrote to my surgery requesting I be put on Creon. Had I been sent a copy of this letter, I would have chased up the surgery.
If the stool sample had been taken prior to the appointment then I'm sure he would have discussed the results with me then.
When he discovered that I had not been prescribed the Creon at my next appointment, six months later, he actually wrote out the prescription there and then.
At both surgeries I was/am a patient of, they had/have GP's who 'specialise' in diabetes and whilst their knowledge obviously does not match that of a consultant they certainly know more than the average GP.
I suspect this is due to the high number of patients diagnosed with diabetes. Whether or not this is replicated in every surgery, I have no idea.

At present I attend both Gastro and Diabetes clinics so I see two consultants.
 
My own doc is the one that 'specialises in diabetes' and I was quoting what he's always said to me! They do see an awful lot more T2s than 1, 3 or any other sort though so perhaps they are better with them?
 
My old surgery states on their website that they have doctors who specialise in natal. asthma, diabetes and other conditions. Having at least 7 doctors available during surgery hours some of whom specialise in common or chronic conditions can only be a bonus for those of us with those illnesses and take some of pressures on the hospitals. At present, I have a sixty mile round trip to see consultants or attend A & E but only a six mile trip to my local surgery, so the more doctors that specialise in local surgeries can only improve our chances of a better treatment regime.
A super surgery is being built in the nearest town combining 3 existing pratices, No doubt they too will offer specialist services, despite being close to the local (urgent care) hospital.
 
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