Memory issues

[Tori-Hermione]

Hi all,

Wasn’t sure where to post this. Type one for 4 years but had a really gradual onset for almost a decade. Totally missed and the gradual onset came from Sepsis that almost killed me and a mix of medication due to a mistake and being left on a drug for far too long. Truth is I suffered for ages and due to other things the doctors concentrated on, it got overlooked. I’ve made my peace with that now, but with anything it, it hasn’t been easy.

Main reason for posting is I don’t know any other diabetics (sad I know) but I have been noticing a decline in my memory.

Short and long-term.

I am also dyslexic and since my diagnosis it has got worse I can no longer scape by without it being noticed. Guess you can say I’ve been hiding it for an eon, but now it is prevalent even in my vocal word selection.

I wonder if anyone else has suffered with their memory, and what if any actions you have been able to take?

I am in Exeter and find the diabetes care here unbelievably poor. While we have a great research centre the general everyday care I have found substandard, so I guess I am hoping to find others experiences to understand anything about pathways or the right things to be asking for. Otherwise I will be caught in an endless loop - I fear!

Any help or direction I would appreciate endlessly 🙂

Tori

 

[rebrascora]

Hi Tori and welcome.

So very sorry to hear that you were misdiagnosed. Sadly it happens all too often and we spot quite a lot of suspect cases here on the forum. It is very unfortunate and sad that yours got to such a critical stage. Which insulins do you use and do you have Libre sensors on prescription or other Constant Glucose Monitoring (CGM) system?

As regards the memory loss, that is worrying and not something that we see associated with diabetes directly but can be associated with Statin use which is often prescribed to lower cholesterol in diabetic patients as well as the general population of course.
Do you take statins?
If so, you need to talk to your doctor about a change, asap. It can take quite a long time for full memory function to return, if it is a statin which is responsible, so the sooner you stop it and find an alternative the better.

 

[Tori-Hermione]

Thank you, @rebrascora (Barbara) - I really appreciate your response

I have a combination of Abasaglar for my basal/long acting and NovaRapid for my quick action. And yes, I have been lucky enough to have a Libre for 3 years now.
As soon as my doctor realised I was 40 he insisted I went on Statins and prescribed a LIPTOR, it massively spiked my blood sugar, so went off it, and refused to take it after a few months.

Couldn’t quite fathom why they prescribed it as my cholesterol management is really good. But the doctor said it was a must, and felt very counterintuitive to me. As the side effects were terrible. And increased sugar levels are one of the biggest I still can’t understand the choice.

So sadly it isn’t a Statin. But can certainly say my doctor has been hard to deal with since.

He is a very black and white individual - so while that is good in some circumstances- if a book says it, it must be correct.

Partly why I face issues - as if it doesn’t say T1D and memory are a thing, then he won’t listen.

And to be honest they might not be related - although I do see some alarming increases in numbers of those whom have T1D and higher rates of Alzheimer's etc.

While I am managing currently I am noticing it more and more.

And while I assume like me most people suffer with it during high and lows, I am noticing it all of the time now.

 

[Lucyr]

As soon as my doctor realised I was 40 he insisted I went on Statins and prescribed a LIPTOR, it massively spiked my blood sugar, so went off it, and refused to take it after a few months.

Couldn’t quite fathom why they prescribed it as my cholesterol management is really good. But the doctor said it was a must, and felt very counterintuitive to me.

It’s UK guidance to prescribe statins for all type 1s over 40

 

[rebrascora]

Yes, as @Lucyr says it is NICE guidelines but we all have a choice as to what we put in our bodies and I have refused statins as I do not feel I need them as my cholesterol levels are not high, but they are consistently just above the 4 they prefer people with diabetes to be under. It is my choice and I have discussed it with my consultant and nurse and told them that I am happy to review my decision if my cholesterol goes up but at the current levels and with my diabetes well managed, I don't wish to take them and they respect that. I am sorry to hear that your doctor is a bit old fashioned in his approach to patient care and doesn't feel that you should have an informed input or choice about your treatment.

I am guessing that you were on Metformin for quite a while if you were initially misdiagnosed Type 2. That can interfere with Vitamin B12 absorption and this can impact the nervous system, so might be worth looking to see if your B12 levels have been checked and are OK. Usually that affects sensory faculty like numbness or balance or pins and needles, but maybe can affect the brain and memory too.
Yes, too many hypos can cause issues but also wondering if you may perhaps have had a mild TIA at some point which you perhaps weren't aware of, but has impacted your memory. Or perhaps it is residual damage from your sepsis and DKA. It must be very worrying.

 

[Tori-Hermione]

Thanks @Lucyr - yes I am aware also.

I asked my doctor for the studies he referenced to recommend the STATIN (LIPITOR) and when I read it, it had a big impact on type 2, but the sample size and impact on type 1 was unproven.

I also came across another study several months after making the choice to stop (https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04691-6#:~:text=In a study of T1D,in T1D patients [45]) and felt reassured post it.

I saw huge spikes in my sugar and wasn’t surprised as LIPITOR literally stands for the attached. And I went from 90% in range to 65% - I knew it wasn’t right for me either.

 

[Tori-Hermione]

Yes, as @Lucyr says it is NICE guidelines but we all have a choice as to what we put in our bodies and I have refused statins as I do not feel I need them as my cholesterol levels are not high, but they are consistently just above the 4 they prefer people with diabetes to be under. It is my choice and I have discussed it with my consultant and nurse and told them that I am happy to review my decision if my cholesterol goes up but at the current levels and with my diabetes well managed, I don't wish to take them and they respect that. I am sorry to hear that your doctor is a bit old fashioned in his approach to patient care and doesn't feel that you should have an informed input or choice about your treatment.

I am guessing that you were on Metformin for quite a while if you were initially misdiagnosed Type 2. That can interfere with Vitamin B12 absorption and this can impact the nervous system, so might be worth looking to see if your B12 levels have been checked and are OK. Usually that affects sensory faculty like numbness or balance or pins and needles, but maybe can affect the brain and memory too.
Yes, too many hypos can cause issues but also wondering if you may perhaps have had a mild TIA at some point which you perhaps weren't aware of, but has impacted your memory. Or perhaps it is residual damage from your sepsis and DKA. It must be very worrying.

Thanks again @rebrascora 🙂

No, my kidney and liver failed briefly during the sepsis - so the doctors didn’t even pick up on the diabetes in any form.

They rushed to give me surgery after leaving me on a drug called decapeptyl for close to two years and got the sepsis as part of the surgery. So they missed the tiredness, fatigue, and lots of other symptom's as they thought it was to do with the drug. And due to the surgery and sepsis it was seen as a hormonal and after effect of this for years.

I had blacked out by that point numerous times and was really suffering - once behind a car wheel on a motorway. And still they were too busy looking at who I was and what I had been through vs. really what I needed. The statin scenario also felt similar to this.

So went totally untreated for an a long time until I was in DKA and very poorly.

Lucky really so I am thankful to even still be here.

So the memory thing is scary yes, but I’m still thankful even if that sounds silly .

 

[everydayupsanddowns]

Sorry to hear you had such a rough and turbulent ride through your diagnosis @Tori-Hermione

How are your levels these days? Have you managed to claw back some of those percentage points of TIR?

Sorry you had such a reaction to Lipitor. I delayed starting a statin for a few years, but having gone onto Atorvastatin I have seen zero negative effects, just a gentle steering of my lipids into the target ranges.

Some on the forum got on better with Rosuvastatin than Atorva, but it works great for me 🙂

 

[Tori-Hermione]

Sorry to hear you had such a rough and turbulent ride through your diagnosis @Tori-Hermione

How are your levels these days? Have you managed to claw back some of those percentage points of TIR?

Sorry you had such a reaction to Lipitor. I delayed starting a statin for a few years, but having gone onto Atorvastatin I have seen zero negative effects, just a gentle steering of my lipids into the target ranges.

Some on the forum got on better with Rosuvastatin than Atorva, but it works great for me 🙂

Thank you @everydayupsanddowns - it’s okay. I’ve completely made my peace with it. Why hold on to it, as it will only weigh you down.

They are. I am lucky that my cholesterol lipids are well within range, as have my sugars been since diagnosis. Mainly as I am a vegan and live pretty healthily. Not for everyone but have been for a very long time.

Yes. I tend to be in the 85%+ in range mark. I use to be 95% plus but have eased off somewhat. Mainly as my nurse had multiple goes at me, saying I was risking hypos being so tightly controlled. Although the stats would suggest otherwise.

So when I dropped so rapidly due to spikes I was pretty sure it was the Statin. It also spiked my insulin tolerance.

Ah, it’s all so complex isn’t it. And we are all so different. But it certainly is nice to speak to others who experience the same things.

Appreciate your response 🙂 endlessly.

 

[Tori-Hermione]

Hi all - just wanted to bump this up in the hope that someone might have experienced the same or anything similar?

I did a lot of research and while my management is decent I am finding my recall issues getting worse and worse - all research states that the brain can get scared from highs and lows. So starting to think the damage was already done. But as I get my daily highs and lows the impact is potentially already there and getting worse.

Feeling quite despondent about it today. And totally lost.

Not like me, usually. But a tough day

 

[Lucyr]

Have you spoken to your GP about your memory issues? I know you said he doesn’t want to know about T1D causing memory issues but I think it’s only you that’s decided the memory is due to diabetes? Has your GP done any tests to see if it’s something else causing it?

 

[Tori-Hermione]

Hello - yes I’ve mentioned it before multiple times. It’s been fogged off for a while. About 18 months now. And it is getting worse.

When I mention these things my doctor he tells to speak to my T1D nurse on call as his standard response, he doesn’t understand type one diabetes and at the hospital they send me back to my doctor in an endless loop- as my management is decent saying I shouldn’t be concerned. As they only look at the libre - nothing more.

And I have been unable to find a pathway to be able to be seen.

Its only really got bad since just before and since diagnosis. And most noticeable since I had my second seizure in Feb. I wasn’t seen post this as the services passed me off between each other.

A good cry is probably what I need I think.

 

[Inka]

Are these hypo seizures you had @Tori-Hermione ? Could they be contributing to your memory issues?

Could it be perimenopause? That can cause some unpleasant and unexpected symptoms in some women.

I’m sorry you’re struggling so much x

 

[Leadinglights]

Could your memory symptoms be menopausal so hormone related, the medication you were on could have affected normal hormone levels. People say they get brain fog during menopause.

 

[Leadinglights]

Are these hypo seizures you had @Tori-Hermione ? Could they be contributing to your memory issues?

Could it be perimenopause? That can cause some unpleasant and unexpected symptoms in some women.

I’m sorry you’re struggling so much x

I had come to the same conclusion having looked up what the medication the OP was on.

 

[Tori-Hermione]

Are these hypo seizures you had @Tori-Hermione ? Could they be contributing to your memory issues?

Could it be perimenopause? That can cause some unpleasant and unexpected symptoms in some women.

I’m sorry you’re struggling so much x

Appreciate the concern allot. Up with hypos tonight after a stressful day and high blood yesterday.

They have been hypo related, yes. And often at periods during high stress.

I had one in Feb after a period of prolonged stress with an horrific employer. Both times I have had them so far I have struggled to get anyone to see me post them. And they were (both times) coupled with a big spike in insulin resistance.

They’ve been pretty horrific and scary both times as the fallout from them has been immense. I remember the first time I had one - while I barely remember it triggering, I have never forgotten the fallout. One of the scariest things I’ve been through to date.

Last time in Feb came with a large spike in Keytones.

As they have been isolated, the diabetes team couldn’t see much wrong versus other patients, in my Libre readings. And is partly why I think the level of care I have experienced in Exeter since I’ve been here for little over a year has been sub-standard. It’s been very generic with no duty of care.

Simply passed off between services and bounced around.

I reported it to the integrated care board and got nowhere except worse off with my doctors. I complained to no avail really and wasted a lot of energy. Versus finding a solution to my issues.

It all got conflated with a grant battle I have also had with the doctors this year, as they refused to endorse a grant I applied for heating improvements this year. As I have been living without heating this winter.

And I do worry due to my previous experience with doctors I am fighting in the wrong places (mainly based on my experiences). And no idea how to find a pathway.

And sadly not menopausal. I have experienced it 3 times as I am on HRT. And having to stop taking it multiple times with surgery in the past.

I certainly opened the flood gates this evening. Which was needed :’)

 

[Tori-Hermione]

Could your memory symptoms be menopausal so hormone related, the medication you were on could have affected normal hormone levels. People say they get brain fog during menopause.

I really wish it was something like this and been praying, really.

I was in the car this evening and for 5 mins couldn’t remember where I was going. While that example is minor I am barely scraping by at work now in a new job and having to rely on writing everything down constantly..

The memory recall issues are becoming more frequent and noticing them more and more.

My ex told me to get off my pity potty this evening. While I get what they are saying - it is hard to explain to someone that isn’t experiencing it.

 

[Inka]

I hope you’ve escaped from that horrific employer @Tori-Hermione ! Stress like that can be absolutely overwhelming and change who you are. If you can stop that stress, you’ll feel a lot better even if it doesn’t solve the problem.

I’ve had a couple of hypo seizures and they’re terrifying. I didn’t have any memory problems afterwards but they really shook me up for months afterwards. Do you know what caused the hypo each time? Eg did you give a correction dose of insulin beforehand, did you miscalculate your carbs, etc? Presuming you have a Libre, did it warn you or was the drop too fast? What do you have your Low alert set at?

One of my children has epilepsy and I always wonder if some people have more of a propensity to seizures even if they don’t have epilepsy. You mention the 5 minutes memory loss in the car. Could you be having absence seizures? There are also what are often referred to as non-epileptic seizures. These can be caused by a number of things but a big cause is stress.

When was your first hypo seizure? I know you’ve said you don’t think it’s connected to the HRT but a friend had a severe reaction to HRT and they thought something was seriously wrong with their brain. Have you tried different types? For my friend it was the type of progesterone that did it. It would be worth ruling out. Also, is the HRT ‘strong enough’? You mention swinging highs and lows, which is what I was getting in peri before I started the HRT. That is, could it be your natural hormones causing it and breaking through the HRT?

Looking positively, I think you have a chance of sorting this with a bit of detective work and changes to your routine, or at least improving things x

 

[mikeydt1]

Tori just seen this post i have been getting dyslexia probs since been on epilepsy meds and then was discussing this with a practice pharm and apparrantly she goes to an opticians seems there are now glasses available to ease the dyslexia symptoms might be something to consider.

with memory issues going on i would consider a call to the doctors as there are certain tests they carry out better to be safe than sorry.

 

[Lucyr]

I was in the car this evening and for 5 mins couldn’t remember where I was going.

I do hope you were a passenger and not driving, as your hypo seizures have to be reported to the dvla and will mean losing your driving licence.