Rather angry. Newly diagnosed. Lost eyesight.

[CharliePBC]

I have a very long story!
But as I introduce myself I’ll keep it as short as I can, missing out huge chunks of my story
I have an autoimmune disease AIHA where red blood cells are eaten by my immune system.
I receive blood transfusions about 1 per week one ( of the many) drugs I take for this condition is STEROIDS which we know affects blood sugars. I kept asking for my levels to be tested ... they ( medical teams) failed, eventually in October 21 a HB1AC showed 48 ...there was no followup, more steroids taken.
On 5 Jan 22 I was taken to A& E with BM of 33 put on insulin driver to stabilise, 4 nights in AMU then discharged as a drug ( Steroid) induced diabetic.
On 23 Dec I awoke with a suddenly blind left eye, and a diminished sight right eye.
What’s now clear is that my diabetes caused my semi blindness
I will never drive again, I struggle to see my screen, I have suffered life changing issues.
On Novamix30 starting to get stable results, and unable to continue to work at our BnB with my wife.
I am rather angry.
Considering a medical negligence claim.
Hi to all my new diabetic friends!

 

[EmmaL76]

Oh my goodness. I’m so glad you have joined us but so sorry to hear the circumstances that brought you here. There are a few steroid induced diabetics on here. There are also quite a few who have issues with the treatment they have received, me included. I can’t offer any advice about the eyesight situation but I do know that many of us, if not most have suffered some degree of eye related problems, usually it’s temporary, have you been given an official diagnosis of what your eye condition is? This sound like an awful situation for you especially not being able to work along side your wife, that must be very distressing

 

[CharliePBC]

Thanks for the warm welcome, eye doctors say my eyes will not regain sight, a VRBO ( form of blood clot) is the culprit for left ( totally blind) eye.
TBH I am taking this in my stride, I did say I have a long story, from being very fit and active all my life up to about 58 I got PBC ( autoimm7ne disease attacks liver bile ducts) liver transplant in 2014, then AIHA in 2020, 14 weeks in hospital, hundreds of blood transfusions, very fatigued and weak, but battling on keeping cheerful and living as best I can. ( what else to do? ) now this added complication!
When I was in the midst of liver transplant, I kept sane by reminding myself most of the rest of the world would happily swap places with me! I imagine that is still true today, but as more bits keep falling off the wagon one day the balance might be less tipped in my favour!

What’s your diabetes story?

 

[trophywench]

Very very tricky as a normal HbA1c test is just never going to provide reliable results when you have AIHA.

Red blood cells usually last between 90 and 120 days so the test relies on that. Your red blood cells don't do normal things.

 

[EmmaL76]

Thanks for the warm welcome, eye doctors say my eyes will not regain sight, a VRBO ( form of blood clot) is the culprit for left ( totally blind) eye.
TBH I am taking this in my stride, I did say I have a long story, from being very fit and active all my life up to about 58 I got PBC ( autoimm7ne disease attacks liver bile ducts) liver transplant in 2014, then AIHA in 2020, 14 weeks in hospital, hundreds of blood transfusions, very fatigued and weak, but battling on keeping cheerful and living as best I can. ( what else to do? ) now this added complication!
When I was in the midst of liver transplant, I kept sane by reminding myself most of the rest of the world would happily swap places with me! I imagine that is still true today, but as more bits keep falling off the wagon one day the balance might be less tipped in my favour!

What’s your diabetes story?

Well it sounds like your taking it all very well I must say. Half the battle I think to keep the mental side intact even if we are dropping to bits!
My story, probably A rather long one too, that most folks on here are probably sick of hearing so will keep it short. Type 2, then type 1, then type 2 again now type unknown. I’m kinda used to not knowing but I’ve just been left in limbo because I don’t have a type I don’t really get and specific treatment. I have no consultant and non of my tests make sense even if I did. Like you was fit as a fiddle but now due to diet I’m way too skinny and suffer extreme fatigue daily. Apart from that I’ve got no complaints lol

 

[CharliePBC]

Very very tricky as a normal HbA1c test is just never going to provide reliable results when you have AIHA.

Red blood cells usually last between 90 and 120 days so the test relies on that. Your red blood cells don't do normal things.

I am aware that HBA1C reads crystallized sugar attached to red blood cells, and that I have about half as many RBCells as a normal human!
Perhaps ( roughly) you need to x 2 my HBA1C result to “ normalize” it?
Any rate my medics should have sat up with a reading of 48, not left me untested until I ran onto the rocks!

 

[CharliePBC]

Well it sounds like your taking it all very well I must say. Half the battle I think to keep the mental side intact even if we are dropping to bits!
My story, probably A rather long one too, that most folks on here are probably sick of hearing so will keep it short. Type 2, then type 1, then type 2 again now type unknown. I’m kinda used to not knowing but I’ve just been left in limbo because I don’t have a type I don’t really get and specific treatment. I have no consultant and non of my tests make sense even if I did. Like you was fit as a fiddle but now due to diet I’m way too skinny and suffer extreme fatigue daily. Apart from that I’ve got no complaints lol

Hi, you sound like you have also got your head straight, as you say, at least half the battle.
I was told I has type 3 by nurse in Hospital, my nurse daughter and doctor son said there is no such thing! But t’internet does sort of mention it, not sure what I am?
Keep on keeping on!

 

[Lily123]

You really have been through it! The eye issues could be down to something diabetes related like retinopathy or it could be unrelated

 

[Kaylz]

There most definitely is a Type 3C diabetes and there are a few members here with it but it generally involves the same treatment as a Type 1 (but with some extras) it can be caused due to an illness or condition that affects or damages the pancreas or if you've had part of/all of your pancreas removed, some nurses and doctors don't know much about Type 1 so I doubt they would be knowledgeable on Type 3C

 

[silentsquirrel]

I think in some quarters it is unofficially known as 3e. Not 3c.

 

[Leadinglights]

There is an alternative test you can have instead of the HbA1C if you have any haemoglobinopathies as it would potentally be inaccurate. I believe it is called a fructosamine test

 

[Leadinglights]

There is an alternative test you can have instead of the HbA1C if you have any haemoglobinopathies as it would potentally be inaccurate. I believe it is called a fructosamine test

 

[CharliePBC]

There is an alternative test you can have instead of the HbA1C if you have any haemoglobinopathies as it would potentally be inaccurate. I believe it is called a fructosamine test

Hi, thanks for that info, will discuss with my consultant!

 

[CharliePBC]

You really have been through it! The eye issues could be down to something diabetes related like retinopathy or it could be unrelated

On and around 22 December, the day I lost my eyesight, I was always thirsty, I have so many meds ( 35 pills a day sometimes) I put it down to other meds ... over the next few weeks ( over Christmas) I was drinking pints of Ribera ( yes I know! ) I mean pints after pint after pint mind you I was not eating ANYTHING . I was asleep all day ( awake for about 2 hours on Christmas Day) continued to feel fatigued ( liver transplant, AIHA with lowbloods) I am used to being tired, but this was something else, and finally I get blood sugars tested and I am 33 .. my HBA1C was 72
I am confident my eyes were due to diabetes.
I wonder how easy this will be to prove?
They should have reacted to my HBA1C at 48 in September though!

 

[Lily123]

On and around 22 December, the day I lost my eyesight, I was always thirsty, I have so many meds ( 35 pills a day sometimes) I put it down to other meds ... over the next few weeks ( over Christmas) I was drinking pints of Ribera ( yes I know! ) I mean pints after pint after pint mind you I was not eating ANYTHING . I was asleep all day ( awake for about 2 hours on Christmas Day) continued to feel fatigued ( liver transplant, AIHA with lowbloods) I am used to being tired, but this was something else, and finally I get blood sugars tested and I am 33 .. my HBA1C was 72
I am confident my eyes were due to diabetes.
I wonder how easy this will be to prove?
They should have reacted to my HBA1C at 48 in September though!

Was the 33 on the day you lost your eyesight?

 

[Flower]

Hi and welcome @CharliePBC

I'm sorry to hear what you've been through/are going through.

Have you been referred to a hospital ophthalmology/retina clinic for the damage to your sight?
I lost my sight suddenly overnight first in one eye then in the second. Have you been told if there is any treatment you can have. Retinal haemorrhages from proliferative retinopathy can totally or partially obscure the vision by fragile abnormal blood vessels in the retina bleeding into the jelly of the eyeball and blood diffusing through the jelly obscuring any light and vision.

I've had the jelly removed from both my eyes so all the trapped blood is also removed. I needed a lot of laser to seal off the leaking abnormal blood vessels in my retinas and am blind in one eye, partial sight in the other.

After diagnosing the blood clot as the reason for blindness in your one eye did you get any treatment plan for the other eye with reduced vision? I hope you can get some timely help & diagnosis and treatment if appropriate. Best wishes

 

[CharliePBC]

Was the 33 on the day you lost your eyesight?

No, it was about 10 days later, but I was feeling exactly the same for 10 days, totally fatigued, asleep and desperately thirsty.
You might ask why the extreme fatigue did not take me to doctors ( over the Christmas new year period) answer, I get pretty bad fatigue from AIHA, but this was something else!
I have been really desensitised to symptoms from what I go through every month.

 

[CharliePBC]

Hi and welcome @CharliePBC

I'm sorry to hear what you've been through/are going through.

Have you been referred to a hospital ophthalmology/retina clinic for the damage to your sight?
I lost my sight suddenly overnight first in one eye then in the second. Have you been told if there is any treatment you can have. Retinal haemorrhages from proliferative retinopathy can totally or partially obscure the vision by fragile abnormal blood vessels in the retina bleeding into the jelly of the eyeball and blood diffusing through the jelly obscuring any light and vision.

I've had the jelly removed from both my eyes so all the trapped blood is also removed. I needed a lot of laser to seal off the leaking abnormal blood vessels in my retinas and am blind in one eye, partial sight in the other.

After diagnosing the blood clot as the reason for blindness in your one eye did you get any treatment plan for the other eye with reduced vision? I hope you can get some timely help & diagnosis and treatment if appropriate. Best wishes

Gosh, you sound just like I am!
Blind in one, pretty poor vision in other.
It’s all a bit recent!
Got two eye drops and an appointment in 8 weeks at eye hospital to find out more, but prognosis was eye will not get better ....

 

[Lily123]

No, it was about 10 days later, but I was feeling exactly the same for 10 days, totally fatigued, asleep and desperately thirsty.
You might ask why the extreme fatigue did not take me to doctors ( over the Christmas new year period) answer, I get pretty bad fatigue from AIHA, but this was something else!
I have been really desensitised to symptoms from what I go through every month.

Constantly thirsty is one of the symptoms of diabetes so you might have brushed the thirst aside as a side effect of one of your other medications?

 

[trophywench]

I meant that your red blood cells do not live anywhere near the expected time, therefore I am entirely unsure what blood - or other! - test could possibly diagnose that you have diabetes. I am only absolutely certain that a standard HBA1c test cannot be reliable. #

I would expect an endocrinologist specialising in diabetes to know that in cases of anaemia, a fructosamine test could be used - but haven't the vaguest idea who else either might or should.