Has anyone contested a mis-diagnosis?

[Preparedforjobnottolast]

Hi,

I appreciate the NHS is in crisis

Two issues

First, I don't believe I'm a diabetic (on metformin) and recent events have made me not want to play the reverse game or be on meds wrongly - I was confirmed as type 2 in December 2019 have yearly appointments with a diabetic nurse - all times though I have had normal bloods come back and I remember my chemist saying actually with the readings I was just on the cusp in their opinion in January 2020; it has always bothered me to the point of during Covid sent a letter to attend a 'pre-diabetes' course and in 2021 issued a blood test form for 'pre diabetes' check.

Second issue - ongoing back pain, which is getting worse and has now lasted 6 weeks. I get this has the ability to ruin my life for some time.
I paid a private physio on 19th December who said I had tweaked my back and recovery would take 7 days, on 26th December I knew something was really up.
I do the exercise recommended including walking and swimming but it just exhausts me, my legs give way (seen by parents who try and care for me) and I find I'm getting worse not better. I know I'm on Saxena but the serious risk stuff like gallstones, gallbladder, pancreatitis just don't match what I experience.

I have also now gained access to my records which mention my GP stating query slipped disk?

I can see he has tried to refer me to the hospital, however, they just found my self referral to physio and said that will do in medical speak - I went to physio last Friday but they did not go anywhere near my lower back and were very careful not to say what it is to the point of saying he felt the private physio was just ambitious in time given to recover - I said why are my fingers and stomach numb with no answer, but looking into 'slipped disk' numb hands are a symptom. With the way the Physio acted on Friday, I don't see them referring me on easily.

Do I complain to the physio nhs contractor? or my GP surgery? or the hospital who replied?

Thanks for any help on what to do. Any insight in disputing the diabetes.

I have a slipped disc. GP referred me for MRI last April. I had the MRI in September and got results November. Bulging disc x 2 and trapped nerve.
The trapped nerve causes me numbness down the leg.
Before the MRI I went to a private physio who would do nothing without scan.
At the initial GP appointment he gave me advice in case of rare complication (Cauda Equina) Symptoms include legs giving way and incontinence, loss of sensation around the pelvis. Said if that happens go to A&E.

I have asked for a second opinion before which is what I think you might do about your diabetes diagnosis. A GP can arrange it. In my case I didn't agree with my rheumatologist. I would never complain about a doctor unless there was serious error. In this case I just thought he was lazy and patronising and I didn't want to see him. I was very tactful about phrasing why I wanted the second opinion and it went well.

Thank you for replying and for guidance Snowsilver, I will try and keep calm. Thank you again.

I have had CES ruled out because I can feel myself when wiping with tissue.

All things have gone through my mind from eating disorder to everything inbetween.

Update I’ve ended up admitted to Hospital. Had MRI. Thanks Colchester General A&E for listening. Dad spoke to a chiropractor who said I ain’t touching her (me) and recommended insisting on an MRI for the Cauda Equine Syndrome.

After a finger up the bum twice, blood tests and then getting a catheter inserted an MRI happened today.

The pain all along was caused by my neck needing attention due to an inflammation and decompression needed. Feel bit of a fraud but if I stay as an inpatient rather then discharge myself I can get seen quicker by a specialist from sister the Ipswich Hospital re. the neck.

Thanks so much for listening again.

WRT diabetes, do you test your blood glucose?

You could come off the metformin and if your blood sugars climb/stay within range, then you have your answer.

Sounds like you have got a diagnosis re: back pain which is great. Often they can't do much except give it pain relief and time.

No at the very start I was told not to bother buying any home test machine which always made me suspicious to begin with if I was going to be one of the amazing reversal stories because I was never truly a diabetic/to quick a diagnosis. The nurses have also confused me at times whether it was one or two metformin daily with recently the pharmacy and nurse from A&E previous time making a face and asking how I find Metformin. (I also understand it used as a fertility type drug)

Alas being in hospital I have been corrected majorely in the excitement yesterday, the hospital laid of the metformin and then had to give me this medication at midnight when the diabetes result climbed for first time I have ever really known from the finger pricking.

I spoke to the Diabetic nurse saying do I have to take metformin before arriving in A&E and it was yes and in fact now I’ve had this episode of ill health they will be making the annual yearly checks three monthly.

Definitely an experience being in hospital as a diabetic, had never really give it any thought.

What is your HbA1C? That’s the simplest and most inarguably way of seeing if you are actually diabetic.

Metformin is very commonly prescribed and an extremely safe and useful drug. It helps your body overcome insulin resistance and is used in PCOS and gestational diabetes as well as type 2. There’s also very strong evidence that it acts to lessen that likelihood of arterial and thrombotic diseases and provides some protection against certain cancers. It’s also had anti inflammatory properties. It’s one of those incredibly useful multipurpose drugs like aspirin. The NHS is on its knees and I f it’s been prescribed to you, you probably need it because they’re certainly not throwing medication around like sweets. Personally if I had the option of taking Metformin I’d take it.

This is going to sound rude but I can’t help that. Your posts come across as you having a massive stroppy attitude, and that really doesn’t go down well in a hospital setting.

Thanks this is interesting. Totally turn on the head today.

Hospital Diabetes nurse just been round asking if can do proper blood test to check again.

Said she saw my notes and in 2021 blood test taken would indicate I’m not diabetic.

Mentioned number 47 is really good.

I’ve also reiterated being on Saxenda (which they see on my records as I allowed chemist to notify GP which they did do) so I’m really trying to get myself sorted and leave no stone unturned.

I only give the attitude I get given.

Honestly I can’t recommend Metformin enough, it can give a mild upset stomach (wind and squits mostly) but you can get a slow release one that helps with that.

47 will probably be your HbA1C, 42-47 is prediabetes so that is good. It can be incredibly frustrating being a patient, I do get it just grit your teeth and nod and smile.

Aha thanks I do hear you about the numbers given. 👍

I’m just finding it really hard because I’m not this ward’s particular type of patient and I’ll appreciate 15 years of living alone probably makes me very difficult and I don’t accept being not right/unwell easily. Yeah there are a couple of bad snorers on the ward which means I don’t sleep well but the snorers are of an age which needs respect and don’t feel I can turn on hospital tv. Only me and one other girl who I think is the same age roughly who they’ve placed us now opposite each other now there is confirmed COVID on ward. I asked Dad to get me some fybogel as the lactolose they have me on isn’t working and that nearly turned into a rokus to the point my independent/brought in from home medication has been locked up (I’d read on a support group you could still take Saxenda but I now really don’t think nurses do just turn a blind eye)

I seem to have made some mates of the hotel service cleaning team who are exceptionally lovely so that is something to see them every so often during day.

My number is 47 and I am still being treated as diabetic.

I hear you about the snorers, I’m very lucky that my local hospital only has single rooms, but I’ve experienced it. If you ask the HCAs a lot of hospitals will have ear plugs which do help a lot. I also live on my own now and am a right gobby cow when riled and it is bloody hard being told what to do so I tell myself the more I comply the sooner I get home to my own bed.

Under 42 is normal
42-47 is prediabetic
a reading of 48+, at any time, means you’re considered diabetic

so if you are at 47 whilst on medication, your blood sugars are fairly well controlled for a diabetic although they’re still too high compared to a normal person, who would be under 42. It sounds likely that your hba1c as 48+ before medication and so you are diabetic.

if you have access to your records check your hba1c when diagnosed to see if it was 48+, if it was then yes you’re diabetic.

Thank you very much, they came along with blood trolley this morning on ward and should get result Thursday. They have eased of the whole repeated finger pricking to twice daily.

Make sure you get your kidney function done whenever you have your bloods done, Metformin put my dad in to kidney failure &he died from it. He had no kidney problems until he started on it, started being ill about a year after being on it & got a phone call to tell him to stop taking it, no explanation. It was only when I found a letter from the hospital which said stage 3 kidney disease & I googled the connection we found out. Looking at his blood tests his HB1ac results were only 37-40, never any higher so he didn't even need it.

Saxenda increases insulin secretion which lowers blood glucose level. This may be masking your type 2 diabetes. Make sure the diabetes nurse is aware you are taking it. It may not have been addled to your inpatient drug chart. If you are not taking it while in hospital you glucose levels may be higher than normal.

Oh lord, I’m so, so sorry about your Dad.

Well once they transferred me to another hospital I never spoke with the hospitals diabetic nurse.

Today I have become aware of an appointment booked with the nurse at my gp surgery who diagnosed me as diabetic in December 2019 for 15th Feb.

I’ve never hidden the Saxenda (having a conversation during 2021 diabetic review when they said Great we wouldn’t be able to prescribe for you on nhs) plus when I order online I allow for the chemist to notify my GP.

Whenever anyone tries to hail Metformin for my ‘well controlled’ diabetes I make it known I’d been doing Saxenda too and about weight lost. At one point I was concerned that maybe there was an element of actual silent pain going on for other issue that landed me hospitalised in first place that was attributed to Saxenda but I’ve been off of it nearly 2 weeks now.

Could go either way I guess 🙏 bet I’m in for a telling off about Saxenda.

Update sadly it came back I still am classed a diabetic - my gp surgery argued the hospital was not in receipt of my latest bloods so now I’m on metformin and liraglutide. The hospital wouldn’t have seen notes due to being in a neighbouring county but I’m surprised they didn’t clarify when my last review was.

My brother who also suffers spinal probs but as result of injury had been in the past week diagnosed as type 1. To close for my liking!

I badly want to get rid of the diabetes if I can so going to continue losing weight and hope for the 3 month check again. 🙏

If your brother has just been diagnosed as a Type 1, I would ask for testing for yourself, you could easily be in the honeymoon phase, which often mimics Type 2.