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Any advice appreciated

S

stjohn

Member
Messages
13
Location
Auckland, New Zealand
Type of diabetes
Type 1
Treatment type
Insulin
Firstly I would like to say that I'm so glad that I have found such a
wonderful and supportive forum.
I've been type 1 for 23 years.
I am originally from the UK but have been living in New Zealand for
the last 12 years.
I would very much appreciate some advice regarding my problems.
My ability to focus and concentrate on anything has become virtually
non-existent. Memory has become progressively worse, I sometimes
can't remember my own phone number. I feel like a complete Zombie most of the time.
Dreadful brain fog, very low energy. I have also come to realise that my personality has
really changed over the last few years.
I have had various tests for thyroid problems,celiac disease, vitamin
deficiency etc but all have come back normal. I was also prescribed
anti-depressants which had no effect whatsoever.
I was taking novorapid and protophane before being switched to lantus
around 5 years ago. The problems have become more pronounced since
switching to Lantus, although my control is generally pretty good.
I have read quite a few posts on the forum regarding problems that some people
have experienced whilst taking lantus.
Thinking back, a year or so after starting
insulin, I noticed what I can best describe as a feeling of "not being quite with it".
To start with it was very subtle....hardly even noticeable. But gradually over
the years that sensation has worsened, particularly over the last few years.
I constantly try to achieve very tight control which doesn't go down
particularly well with the diabetes clinic. I have also over the years paid
the price for this and have had some quite severe hypos, some resulting in seizures.
I am due to see the endo at the end of this month and I am thinking
of asking to have my insulin changed but feel as though I'm going to
have a real battle on my hands.
Anyway, I would really appreciate any ideas, advice or suggestions.

David.
 
Hi David

Welcome! It is a great forum isn't it? I've been t1 13 tears and i have to say am a tired & exhausted diabetic! We are always being told we can have 'normal' lives, and do everything just like 'everyone else' which is true...but it was only the other week, when I met 3 other ladies at the pump clinic, that I jokingly said how knackered I was all the time. It really struck a chord- we all said how nice it was to hear that it was 'normal' to feel that with diabetes.

Whenever I have a real go at tighter control, hypos become part of the scenery. Like you, this never goes down well with the clinic, but adamantly I thought it just comes with the territory, but have to admit, I'm sure I have damaged my mental capacity somehow. I too have real trouble remembering stuff, can never get words out, can't remember what happened yesterday etc. I honestly reckon continual hypo's cause mental trouble/fog. You say you've had seizures from hypo's, do you think your hypo's have contributed to the way you feel? After all our brains are starved of glucose when we're low?

I may be way off...I'm just thinking out loud, and of course am not a medical professional. I have been tested for a myriad of things because of feeling 'off', and things just not being right. maybe it's just the constant surfing of lows & highs that just knock us down over time?

Never considered it could be because of the insulin!?

Would be interesting to see what others make of your situation.


Sent from the Diabetes Forum App
 
Hi, I have only been diagnosed type 1 for a year and I am also on novorapid and Lantus. I also feel tired a lot and my memory is terrible to the point were I had to ask my husband what the song was for our first dance. I've asked my diabetes nurse about this and she says it's not to do with the diabetes but could be stress. I've been having a lot of typos recently as well as I have been trying to get better control. I have noticed that my mood can change very quickly I go from being in a really good mood to wanting to cry for no reason. I suppose that could be down to my feminine hormones. I also suffer from seizures and I'm being tested for epilepsy but my neurologist thinks it's anxiety and this apparently could also he what is affecting my memory.

So just a thought but maybe worrying about everything could be having an effect. Believe me I worry about everything but I am trying to calm it down so we'll see if that helps.

I hope you get some answers.


Lucy
 
Hi. I was also diagnosed type 1a year ago. I have noticed that my memory is significantly worse since diagnosis. I have another type 1 friend also diagnosed as an adult who has said the same thing. Diabetes nurse is adamant it has nothing to do with the diabetes but I'm not so sure... very interested to see if this is a common theme!

Good luck!
 
My memory dreadful too.
Was sent to stroke clinic years ago because the doc didnt know what was wrong.
Clinic found I was low B12 and folic - pernicious ansemia.... Then had monthly, them 3 monthly injections. Moved to wales and because levels raised gp stopped injections. Ended up paying privately for an intravenous infusion of vitamins.
Back in Midlands now, where B12 is still on low side, but not low enough for injections...memory and tiredness is **** again!! I just put this down to being so busy all the time. I do have B12 special tablets, but they only just keep me in the low normal levels.
I too was on lantus, but just novorapid through pump now.
I am a believer that all drugs can affect other parts of our body, not just the ones they are meant to help.
 
I have the vitamin b12 injection every 3 months as well and it hasn't helped with my memory, but I can tell when I'm getting low on it as I get really tired.

Lucy
 
How interesting! And odd. I was tested for b12& folate (b12 & something anyway..) the other day. Presuming it isn't low or my surgery wouldve called (mind you, presume nothing!)


Sent from the Diabetes Forum App
 
You can feel tired and awful at less than 300 or so on the b12 scale.. But you wont get injections unless below.. ( i think) 167...

There are numerous other things that can contribute to tiredness, memory problems, depression etc ...Not just diabetes. It could just be that uou are doing too much/too little and that your brain needs more or less stress/stimulation... Or it could be PA or low vit D or loads of other medical causes.
I'm so active nowadays, that I just have to live with making lists for everything, literally lists are everywhere.. But just know that docs will not give me B12 again till I drop low...
To try and help my tiredness, I do take multivitamin, additional B and D and calcium on top of the multi vit tabs. Also take a fish oil, selenium and coq10..
I also eat chicken as my main meat in 90% of meals, fresh veg or salads everyday and a yogurt and a piece of fruit. So I try to do everything healthy.. Still forgetful, tired ( despite good bgs), so just had to accept that this is me now...
 
Hi David,

I'd say that if you suspect the Lantus is not good for you, then swapping to something else must be a good idea.

I gave up Lantus a month ago, after 10 years. I really didn't have any suspicions, but my DSN & I were changing both my insulins (Humalog and Lantus to Actrapid & Insulatard). That didn't quite work out and I went back on the Lantus, only to discover it had been causing my sleep issues. Waking up at 3am and lying awake for an hour and a half, for the last 3 years.

Now I feel great. My mind is definitely clearer. There are a host of small niggly things that seem to be getting better, some mental, some physical. I used to sometimes tail off mid-sentence, and that seems to have stopped. Yes, I know it could be due to just having a good nights sleep, but somehow the changes in me feel a bit more basic that that. I have noticed I now have earlier warning of low blood sugars. I was getting warning about 2.8, now I get them about 4.2, which is a bonus.

I hope your Endo isn't against the idea of you changing insulins. I don't know the system in NZ - do you have to pay for your medicines?
 
Wow a huge big thanks to everyone who has taken the trouble and responded to my post :D
It has been so interesting reading everybody elses perspectives.
It really is a reminder that you're not alone out there trying to deal with all of this stuff.


Weeezer
I agree that the hypos could be contributing to the poor memory, and that that the constant swings are probably not good for our brains.
It's as though you're continually walking or trying to balance along a tight rope.
I know people 20 years+ older than myself who can run rings around me, both physically and mentally.
I too had not really considered the insulin to be the cause of these
symptoms but after a little research it became clear that different
insulins affect people in different ways.

Lucy
I also did see a neurologist regarding my seizures a few years ago
and he ran some tests to check whether or not I was epileptic. He
concluded that I had a lowered seizure threshold. my BS when taken on
three occasions that I had had seizures during the day was in the low 2's. Most of my seizures have occurred at night (no alcohol involved). Daytime seizures mainly seemed to happen the following day after a fairly late night, usually involving a few beers.
The Neurologist suggested taking anti-convulsant medication to try to prevent this from happening in the future. When I weighed it all up and looked at the potential side effects, I Decided to give up acohol instead as there seemed to be a pattern there. Since then my bs can very occasionally drop to 2 (obviously not good) without a seizure.
I'd never have thought that anxiety might cause a seizure though.
I agree that the constant worry wears you down and can't help the situation either, I try as hard as I can to avoid it.

donnellydogs
That must have been a great relief to have found out it wasn't a stroke.
I too was tested for b12 and iron deficiency, both came back normal, B12 was 860. I've also tried the multi vitamins, minerals, coenzyme q10 etc. Like you I try to stick to a pretty healthy diet.

Czj
I can identify with much of what you've said regarding the lantus. I
too tend to wake up anywhere from 2-5am and I'm unable to get back to
sleep for ages.
I often feel quite challenged to hold a normal conversation......struggling to find the word that I'm looking for etc. This only seems to have become really apparent to me since starting the lantus.
Fortunately New Zealand does have a funded health service similar to the NHS. Prescriptions are subsidised too.

Mimling
I don't think that my memory was affected initially, it seems to have worsened over time. But I think that there sure seems to be a common theme here. I too am hoping that we can eventually find some answers to benefit everyone.
 
Slightly off topic but where about in New Zealand are you. My sister moved over there about 2 years ago to be with her husband who is born and raised there they are in Waikai.

Lucy
 
Lucyturner said:
Slightly off topic but where about in New Zealand are you. My sister moved over there about 2 years ago to be with her husband who is born and raised there they are in Waikai.

Lucy
Click to expand...

I have to honest I've never actually heard of Waikai, is it in the South Island? I'm in Auckland in the North Island. My former wife is a New Zealander.
 
Hi
Just wondering if you use the Greenlane Clinic? I have been in Auckland for 4 years and they have done very little for my Type 1 apart from make my life difficult.

I find them obstructive and arrogant and unable to listen to my point of view or move from their own standpoint. Also their administrative processes are bad and will book conflicting appointments etc.

When I used to live on the North Shore I found them much better.

I'm back to the UK next week to live though so will have to start building new relationships there.
 
I know you've been tested for Coeliac but often you can get a negitive and still be positive? why not try gluten free for two weeks and see how you feel?
 
Hello David in NZ

Ive just read your first msg in this thread and I think you have given the answer to your problems.....

Change from Lantus to another background insulin. There are loads of msgs on the forum all from diabetics having problems with hypos and mental trouble and Lantus usually is the culprit. Levemir is usually much better in its background action but for most diabetics, they need to inject it twice per day instead of lantus being just once.
 
Auckland Canary said:
Hi
Just wondering if you use the Greenlane Clinic? I have been in Auckland for 4 years and they have done very little for my Type 1 apart from make my life difficult.

I find them obstructive and arrogant and unable to listen to my point of view or move from their own standpoint. Also their administrative processes are bad and will book conflicting appointments etc.

When I used to live on the North Shore I found them much better.

I'm back to the UK next week to live though so will have to start building new relationships there.
Click to expand...


Yes I do also go the the Greenlane Clinic
For the most part I've got to say that I've found them to be really good. I think that maybe I've been a little fortunate. I have to admit though that one Nurse in particular could be very overbearing whenever I saw her. On more than one occasion I left feeling like a naughty schoolboy!!!
I hope that you are able to find a more helpful clinic back in the UK.
 
Engineer88 said:
I know you've been tested for Coeliac but often you can get a negitive and still be positive? why not try gluten free for two weeks and see how you feel?
Click to expand...


Yes I've read that testing is not always accurate.
I did actually try giving up gluten several years ago. My goal was for a month but I think that I lasted around 3 weeks. I certainly didn't find it easy. Unfortunately it didn't seem to make any difference.
Anyway thanks for the suggestion and if all else fails I might give it another try.
 
iHs said:
Hello David in NZ

Ive just read your first msg in this thread and I think you have given the answer to your problems.....

Change from Lantus to another background insulin. There are loads of msgs on the forum all from diabetics having problems with hypos and mental trouble and Lantus usually is the culprit. Levemir is usually much better in its background action but for most diabetics, they need to inject it twice per day instead of lantus being just once.
Click to expand...


Yes I agree iHs, I have read quite a few of the posts on the forum regarding the various problems people have experienced. I feel deep down that lantus could well be responsible. I'm planning to try and convince the Diabetes Clinic of this and hope that I'll be able to try another insulin.
 
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