Early onset Altzeimer's testing: Hi - can I ask... - Thyroid UK

Thyroid UK

137,148 members160,828 posts

Early onset Altzeimer's testing

clarabelle17 profile image
40 Replies

Hi - can I ask my GP for a APOE test if I am concerned about my memory, or does it have to run in the family before they will test? Are there any specific tests I could ask for? I have just turned 60, and have to think carefully now about what to do with everyday things - pour milk in a cup etc, it just doesn't come as naturally as it used to. I can't remember what i have said to people so keep repeating myself, I really struggle to remember what I have done short term, words and thoughts suddenly disappear from my mind, I have to write most things down so I will remember. I don't have a problem typing this, or with driving, but sometimes when I leave the house in the car, I have to actively think about which direction I am going, and where to. I did mention it to the GP, and he just said "I wouldn't worry, you are probably fine, those with early onset Altzeimer's or dementia, are blissfully unaware they have it, the fact that you are concerned, you probably haven't got it, but I am still concerned. Any suggestions please as to how i could get tested, and what tests are available? Thanks.

Written by
clarabelle17 profile image
clarabelle17
To view profiles and participate in discussions please or .
Read more about...
40 Replies
SeasideSusie profile image
SeasideSusieRemembering

Clarabelle

I would wait and see what the results of your Medichecks test are like. Do the UltraVit so you get all your important vitamins and minerals tested too. Those symptoms you mention could purely be that you are undermedicated

clarabelle17 profile image
clarabelle17 in reply to SeasideSusie

Thanks - am just so fed up feeling horrible, I just want to get to the bottom of it, and I do have concerns about the memory more lately.

sweetsusie profile image
sweetsusie in reply to clarabelle17

Also, low B12 can cause memory loss and Alzheimer's-like symptoms....

SmallBlueThing profile image
SmallBlueThing

Do you have high blood pressure?

The risk and awareness of vector-borne diseases, including Lyme, is increasing, and may be something you should consider.

clarabelle17 profile image
clarabelle17 in reply to SmallBlueThing

Thanks for the reply - no my blood pressure is always "perfect", that's what the nurses always say any way - I am getting some private thyroid tests done though, (am already on Thyroxine and have been diagnosed with Fibromyalgia, although I think they have just told me that because nothing "out of range" has shown up in previous blood tests, and they can't work out why I am so tired and exhausted), so will see what they say first - but I have been more concerned about my memory lately.

Marz profile image
Marz in reply to clarabelle17

Low B12 can be the cause of memory issues. Have you seen the video about brain shrinkage and low B12 ?

clarabelle17 profile image
clarabelle17 in reply to Marz

Thanks - no not seen the video - where would that be?

Marz profile image
Marz in reply to clarabelle17

youtube.com/watch?feature=p...

Professor Smith starts to talk 4 minutes in on the video :-) Really worth the watch.

b12deficiency.info/signs-an...

Good link above about B12 - scroll down for the neurological signs ...

clarabelle17 profile image
clarabelle17 in reply to Marz

Thanks Marz :-)

sweetsusie profile image
sweetsusie in reply to Marz

Just watched the video, Marz. Very interesting. I had very low B12 a couple years ago. My doctor put me on B12 shots (once a month) for a full year. My B12 level right now is 593 pg/mL and now that I've see the video, I want it higher. I'm going to ask my doctor if he will prescribe shots for me, but if he won't I'll do it orally, although you have to to lozenges because Vit B12 doesn't absorb well through the stomach. Anyway, thanks for sharing!

Marz profile image
Marz in reply to sweetsusie

You can buy B12 shots on-line as thousands do. You can check out the PAS Forum here on HU - they will give you all the information. I live in Crete so I can buy over the counter - and the syringes - for pence. 3 phials and 3 syringes - under 5 euro ! Cannot understand what all the fuss is about in the UK. I wonder how many people reading this thread have read the link above detailing all the neurological signs of Kiw B12 ?

Only 20% of your B12 result is available to be transported to the cells where it is needed. Hence why levels need to be optimal !

sweetsusie profile image
sweetsusie in reply to Marz

Thanks, Marz...yes...I forgot you guys get yours over there over-the-counter...here in the US...no way. So, yes..I'll order or there's a clinic down the street from me that is offering Vit B12 shots with no prescription..I'll check them out, too.

clarabelle17 profile image
clarabelle17 in reply to Marz

Have just checked my Vitamin B12 test result from March - it was 640 ng/L (normal range being 181-910), so doesn't look like I am low.

Marz profile image
Marz in reply to clarabelle17

Looking good. Were you supplementing at the time ?

clarabelle17 profile image
clarabelle17 in reply to Marz

No, I wasn't so at least that's ok - am down on Vit D though (which I know about, and keep saying will have to start taking).

Marz profile image
Marz in reply to clarabelle17

drperlmutter.com/five-thing...

This has just popped into my Inbox - I have Dr Perlmutters Newsletters and have his cookbook !

Caroline888 profile image
Caroline888

Hi clarabelle,

My mother had dementia, possibly Alzheimer's, but this is not easy to diagnose definitively before death. Your doctor is quite right, at least in my mum's case and also in my grandmother's case. Neither of them recognized that they had memory problems, despite constantly losing things and repeating themselves ad infinitum! My mum was happily unaware of her situation and cheerful to the end.

Perhaps, though, you could be assessed so as to put your mind at ease. If you are worrying about something like that, it can be very exhausting and may, to an extent, explain your tiredness.

My mum was referred to the local memory clinic (part of the hospital). There they tested her memory through asking her to complete simple tasks and remember simple instructions. Not invasive at all and the results are very indicative of whether or not you have a problem and, if so, the extent of it. I don't know whether you could persuade your GP to refer you, just for your peace of mind, though really I guess your symptoms could come under the heading of "brain fog", which many people with underactive thyroid complain of when undermedicated.

I think, as others have stated here, that you would do well to get your vitamins and minerals tested as any deficiencies can cause problems and, as Marz says, specifically a deficiency of vitamin B12 can be associated with poor memory.

I hope you feel somewhat reassured by all the members' comments. There are lots of reasons for a bit of forgetfulness and you can probably do a lot to help yourself.

All the best

Caroline

clarabelle17 profile image
clarabelle17 in reply to Caroline888

Thanks Caroline - yes there are some really helpful comments - thanks for your input too, will pluck the courage up to go back to the GP - I just don't want to sound like a hypochondriac - I hate feeling like I am wasting their time!

clarabelle17 profile image
clarabelle17 in reply to Caroline888

Have just checked my Vitamin B12 test result from March - it was 640 ng/L (normal range being 181-910), so doesn't look like I am low.

Caroline888 profile image
Caroline888 in reply to clarabelle17

That's good. Have you checked your iron levels? Lack of iron as in anaemia can also cause memory problems and even confusion.

Incidentally, through caring for my mum, I met a lot of people with dementia and not one of them was aware that they were repeating themselves.

Best wishes

Caroline

MCT oil is very good for the brain function also turkey tail mushroom I take both. They help clear the brain pathways.

clarabelle17 profile image
clarabelle17 in reply to

Thanks - have never heard of either of those! Are you in the USA?

in reply to clarabelle17

No but last year watched an 8 part series on the subject which had experts from all over including the US and I bought the package to study. I am in the UK just return from living in France.

clarabelle17 profile image
clarabelle17 in reply to

Thanks - can you get either of these things in the UK online, and if so, where?

in reply to clarabelle17

Yes both, If I were you though I would get my thyroid, vitamins and minerals sorted out first, it could be that you require higher or lower levels in these.

First things first it's a very slow process. Good luck.

The fork is the most important items in most peoples lives. What you put in your body etc etc. Both my parents lived into their 90's and never had any heart or brain function problems.

clarabelle17 profile image
clarabelle17 in reply to

Thanks - will do - can you message me though please (or let me know here if allowed), as to where you get those two items from?

in reply to clarabelle17

Yes, I will do it in the next two days, I am having new windows fitted today and tomorrow OK? I will PM you.

sweetsusie profile image
sweetsusie

Hi, clarabelle17: I had the APOE testings done many years ago and found out I have APOE3 and APOE4, which gives me a 50% chance of developing Alzheimer's. My Mother and several other female relatives have/had it. It's very scary and having the testing done really did nothing to help me. Am I glad I did it? Well...at this stage (I'm 70), I just really don't know! Since having the testing done, that's basically all I can think about everytime I cannot remember something or whatever. Just make sure you're ready for the answer. There's nothing doctors can do about it anyway...no drugs help to slow it down so far, so the testing may be pointless? Anyway, good luck and keep me posted if you like.

clarabelle17 profile image
clarabelle17 in reply to sweetsusie

Aw thanks for that Susie - yes I suppose it could be pointless, I think would like to know though - and you never know - there could be a drug coming up that could slow it, and also it's still only a 50 per cent chance, so all is not lost. I haven't (as far as I know), got any relatives who have had it.

sweetsusie profile image
sweetsusie in reply to clarabelle17

Well..then go for it, I say! I've just finished watching a video about low Vit B12 and how that can cause Alzheimer's disease. Doctor starts speaking about 4 minutes into the video. VERY INTERESTING!! I'm going to ask my doctor to give me Vit B12 shots once a month. I had to have them a couple of years ago due to low Vit B12. I believe they will help slow down Alzheimer's. Here's the link: youtube.com/watch?feature=p...

clarabelle17 profile image
clarabelle17 in reply to sweetsusie

Thanks for the info Susie - i have just found my last Vitamin B12 test results - done in March, and they are in normal range (mine was 640 ng/L and the normal range is 181-910), so probably not that.

sweetsusie profile image
sweetsusie in reply to clarabelle17

Mine was 360 or something like that...too low for my comfort! Glad yours is up there!

My mother had vascular dementia and my grandmother senile dementia. Whilst my grandmother never knew she had it and would happily sit and talk gibberish for hours, my mother was very careful to hide it at first. She gradually stopped going to social events, always with a good excuse. It took me a while to realise she wasn’t coping and then she admitted she couldn’t keep up with the numbers at bingo or find her place in the hymn book. I’m trying to pluck up courage to get tested, although I blame a lot of my problems on my thyroid and my AF.

Caroline888 profile image
Caroline888 in reply to

Hi Hylda

I'm not sure you can be tested for vascular dementia or senile dementia (now actually called "age-related memory loss") unless you have symptoms.

My mum was initially diagnosed with age-related memory loss at the Memory Clinic. Another doctor there said it was vascular dementia which often occurs as a result of mini strokes or transient ischaemic attacks (TIAs). My grandmother certainly had TIAs and became a little more confused after each one.

I'm in the same position as you but don't worry too much about it, as, according to the literature, dementia is not an inherited disease. There is a gene involved in Alzheimer's which can be passed on but it is rare.

My family history puts me most at risk of a stroke but I truly believe that eating well and getting plenty of exercise is the best we can do for ourselves.

All the best

Caroline

Pascha1 profile image
Pascha1

My Dad had alziemers and I was thinking I had it over a year ago, the gp did some simple tests and said don't worry you haven't got it ye we will keep an eye on you and retest every year ,

it turns out my tretament for hypo was not right as when i had T3 added most of my memory problems are not nearly so bad,

I have since found out I have 1 fault in genetics to get Alziemers which isn't a huge shock with my father having it so i know i have a 50/50 chance of getting it .

I didnt deliberately test Alziemers genetic test!

I had a 23andme genetics done and that came up in it so have many other things ,

tBH what is the point worrying about it , it won't stop it happening , having the fault doesn't mean you def get alziemers anyway, its more likely to happen if it runs in your family.,

So if you found out you do have the gene what would you do about it ?

I also have low vit B12 and folate but not low enough for them to consider treating it even though my father definitely had Alziemers! ,

I have carpal tunnel raynauds and no leg and ankle reflexes, sciatica and back problems that have been diagnosed by MRI, , frozen shoulder and even with all this the Gp is refusing to give me B12 injections so good luck on getting them as I have seriously tried

B12 injections for all this as in convinced i have a deficiency but GPs do not and they call the shots on this one

i get is sent to nerve clinic for carpal which confirms I have it then offered an operation for it which I don't want !

, now i am getting refered for no reflexes to nerve clinic what will I get for that if confirmed by nerve machine what the will they do ? legs cut off and still refuse me B12 injection

My raynauds was diagnosed and confirmed by aGP and then ignored !

I have the MFTHt genetic fault where i cant metabolise Folate but Gp doesnt believe in genetics ! the Drs are quite unconcerned about any of my symptoms and do not really care by the looks of it ,

Do I trust GPs with anything they say or do these days , do i hell!

in reply to Pascha1

Like you have had carpal tunnel and both shoulders frozen. Had carpal tunnel operated on under a local anaesthetic many years ago. No problems since. I take a sublingual B12 tablet.

Di

clarabelle17 profile image
clarabelle17 in reply to Pascha1

I'm don't trust doctors either - I hate going as they don't seem to care or want to help you in you have anything that isn't easy to diagnose - or things that are chronic - how did you find the 23andme test what type of things does it test for? I keep thinking about getting a genetic test, I don't really worry if I have the Alzeimer's gene, just would like to know if I did or didn't have it.

Pascha1 profile image
Pascha1 in reply to clarabelle17

There are thousands of gene s they tear but most is raw dqyaso if you are wrong to do it Ohave quite a lot of bad genes which are homogyois both parents gave to me ...anymore but most of it is raw data so you have to do own research on most of it or pay LiveWello interatateit for you, it’s interesting as long as you won’t feel worried on findings x

Pascha1 profile image
Pascha1

The 23andme testcost around 150 quid ,, I think the NHS get ripped off on their tests,, The Alpoe gene is on the report and not in raw data, well mine was but they no longer test the DIO2 gene but they do the Dio1 test , but that I found in raw data.. its quite interesting looking it all up, but there will be things that scare you so if you scare easy dont do it, I dont look at cancer ones as I know I will get that as runs in both sides of family.. I got hemocromatosis gene from each parent so have a very high risk getting that , but I dont have it and would of started ten years after i stopped periods,, so by having fauly genes does not mean you get it, so ptobably not worth testing it ,, I have double celliac as well and do not think i have that. im full of faukty genes me lol

Pascha1 profile image
Pascha1

I also have a double porthyria gene thats a rare blood disease king henry the 5th had , my dad had that but that happens in 50s if im going to get it, thats not good,,and the scariest one I have is huntingtons one fault from each parent they never had it so they were carriers but i have high chance of getting it,, so bit worried on that one.. so becareful if you do it that you dont get scared when you see things like this.. I have MTHFT gene where cant methalate folate but old gp doesnt beieve it means anything even though folate is at bottom end of range,, GPs dp not read sience im afraid :(

You may also like...

Early menopause / Hypothyroidism advise on blood test results.

I have just been told I am in early menopause (at 37) FSH is75 and lh 36, could this be due to...

Early morning blood test

can anyone tell me if having a blood test at 5.30 am would be a problem for tsh ft4 and ft3? would

Is an early morning blood test on an empty stomach just for a higher TSH?

Hello, can I just ask is it just B vitamins you don't take a week before your blood test? I've...

early morning blood test

I have a check up blood test for 8.30 am Uk time and have spent ages trying to find the information...

Early menopause / Hypothyroidism advise on blood test results.

I have just been told I am in early menopause (at 37) FSH is75 and lh 36, could this be due to...