Oral spray B12

[foxglove]

Can b12 spray be used indefinitely? Husband (age 78) type 2 diabetic (on metformin) he also has been diagnosed with Alzheimer's His b12 in range but at the bottom, doc. says alright as in range. I have been giving him spray b12 and level has risen from 186 to 218, not a lot and I feel I may be doing harm

[PAS-admin Partner]

What a shame (and that's an understatement) the doctor did not see fit to treat him with a B12 of 186, which he should have done with the symptoms. Was this a consultant/specialist or the GP? I would try the other one then and try and get him on injections. As there is a link between homocysteine and Alzheimer, maybe ask to get that tested including folate and B6, as deficiencies in those can raise homocysteine (besides a B12def and other causes)

IMHO the spray is not very good. And from what I see of the blood level it's not getting anywhere. I would advice, if injections are impossible to get, to take a good quality supplement. Nose spray would I think be handy in your situation, or sublinguals if that is possible for your husband.

Please have a look at the second video from the PAS conference with Prof Smith, an expert on the subject: pernicious-anaemia-society.... (he starts around 3.30 minutes)

[Gambit62 Administrator in reply to PAS-admin]

welcome foxglove - nice to see you on the PAS forum.

It can be really difficult for diabetics to get B12 problems recognised - GPs understand (sort of) diabetes so they focus on that and B12 means little if anything to them so it is totally overlooked.

The change in your husband's levels is not really significant and is probably in the range of uncertainty for the assay method being used. It sounds as if your husband does respond to the spray from what you described on the post on DRWF. However, the method of delivery isn't going to be very efficient. It certainly isn't going to be doing him any harm.

I manage to get my mother to use a nasal spray ... but she also has a carer. It would be more efficient than the spray on the food which is the method you are using at the moment - and is going to be working by using the 1% of passive absorption in the gut outside the ileum. On a very high dose this does work for some.

There are a number of studies that have shown that B12 can be effective in treating diabetic neuropathy .... though don't know what methods were taken to rule out the possibility that it was actually treating an undiagnosed B12 deficiency.

The other thing to make sure you keep an eye on is his folate levels.

There would be no harm in using the spray on food more frequently if that seems to sustain the improvement in your husband - I have my mother on using the nasal spray 2-3 x a day ... and use a lot more B12 myself.

How was the diagnosis of Alzheimer's made? Was it done by a specialist - and do you know if it included a proper evaluation of bloods?

The EFSA (European Food Standards Agency) does not have an upper limit for supplementation with B12 because it couldn't find any evidence of negative effects from long term use.

More likely that it is your GP's attitude in dismissing and refusing to treat your husband's low B12 levels that is doing the damage.

You can find a full list of symptoms of B12 deficiency here

pernicious-anaemia-society....

I know that you joined PAS because of your husband about a year ago but looking briefly through your profile spotted a number of things that suggested to me that you may also have issues with B12 - the swallowing problems particularly had me wondering ... and I also used to have problems with a cold nose and feet ... Guess that you are probably using methyl as recommended on TUK - although it works for lots of people - like most B12 things it doesn't work for everyone - so if you are using it yourself might be worth looking into an hydroxo nasal spray for yourself as well.

[foxglove in reply to Gambit62]

Good detailed reply esp. the idea that I can spray on more B12. I fess to doing that but then I worry. Alzheimer's WAS diagnosed by bloods and a CT brain scan ....didn't seem to be much doubt about result but I keep thinking (although not intuitive ) that something has been missed - clutching at straws??? No diabetic neuropathy, husband's circulation better than mine . I have Raynaud's

Will write in more detail tomorrow, you've given me a lot to mull over and I'm grateful you are including me as well as husband. My B12 folate ferritin, all good though ferritin maybe not as high as I would have liked tested a few years back

[Gambit62 Administrator in reply to foxglove]

Unfortunately the many affects of diabetes also include dementia because of the effects on the cardio-vascular system in the brain so, although B12 being low definitely isn't helping - B12 probably isn't the only thing going on.

How recent was the diagnosis of Alzheimers? If it wasn't that long ago then it might be possible to get hold of the blood test results and see what B12 was at that time v what it is now ... and could demonstrate a significant fall over a relatively short period of time. It was this in my mother that got her GP to treat B12 - test in early august over 300 but a few months later it was under 200.

Dementia in someone close is really difficult to deal with - sorry that you are having to wrestle with it along with everything else - take care of yourself.

[foxglove in reply to Gambit62]

Will try to find out about B12 results from before but I was told before CT scan that bloods were "FINE" and that no infection either which could be causing confusion. To be fair to medics I think at that point everything that could be checked (including for depression) WAS checked. Agree that everything connected - difficult to know what leads to what, sort of chicken and egg. I do my best to look after me, and am going to do some tidy up in garden now...THERAPY!

[Gambit62 Administrator in reply to foxglove]

enjoy the garden.

unfortunately interpretation of b12 is pretty poor as it isn't really about the test results. If there was a significant drop between first set and second that might convince GP that there is an absorption problem so even though he may not believe that there is currently a deficiency that may be enough to convince him to start on the grounds that its strongly heading towards deficiency. It worked with my mother's GP so ...

Hope garden is tamed soon. Had a go at some ivy in the front garden this morning as it was heading towards the front room window.

[foxglove in reply to Gambit62]

did enjoy garden but had to stop to attend to more mundane chores, laundry, shopping etc. although (sad isn't it? ) I actually like ironing

Know how the ivy is a challenge, I used to have a sort of "grove " at bottom of garden but ivy is in control now, it is out of sight and even if I know it is there doesn't matter. It is a lovely little retreat and my last cat's grave is there so I have meaningful discussions with him. You probably think I'm weird ?

I fully intend getting GP to at least consider maybe B12 shots worth a try, after all it only took 2 years to convince him that husband's cognition was something very removed from old age symptom's. It surprises me even now how many people tell me he's (husband, NOT GP, though that well maybe so) just forgetful then when they suss the situation don't want to know, have had people cross the road to avoid me, used to upset but don't let it anymore. It is only me who can upset me..... I've had to work out a new normal and those who matter understand

Bit of a ramble - sorry - hope you enjoy rest of what is a lovely evening with you too

[Gambit62 Administrator in reply to foxglove]

Actually you sound really together - realising that only you can upset you is so important - though sometimes quite difficult to live by.

I'm a cat person and couldn't live without one - my garden is lovely for cats - small but plenty to climb. My big battle is with grapevines though - replaced an arch that one was growing over during the winter and it's not quite as supported as it should be - so it's bend double to avoid all the grapes at the moment.

Its years since I touched an iron - tend to be careful how I leave things to dry.

The joy of my day has been finally having a fridge-freezer again - just been to iceland and brought lots of frozen veg - have so missed that over the last few weeks - broke down and took them ages to admit that it wasn't going to get repaired and arrange a refund (was less than one year old) so I could get another one!

[foxglove in reply to Gambit62]

Pleased to have met up with another cat/ garden person, our garden lots of climbing spaces too and we have a lot of visitors

The reason Nicky was our last cat (we had 4 at one point.) is we thought it wouldn't be far to get another because of our age - cat would probably outlive us

It is difficult AND HOW for me to be without a cat but in a strange way I still feel Nicky is there for me. He was a one person cat and I was his as much as he was mine....now you'll know I'm weird but as a fellow cat person I'm taking a chance you understand

Your Iceland shop sounds healthy - enjoy

Wishing you a good rest and pleasant dreams

Cheers Chris x

P.S it is husbands shirts that need ironed, he is very old fashioned . I iron nothing of my own

[Gambit62 Administrator in reply to foxglove]

I have the ashes of a previous cat that I was close to upstairs next to my cello and quite often talk to him before I do my daily (short) practice. He was named Ate (pronounced ateh) after one of the greek deities associated with chaos and disorder. I was working on the principle that I have never had a cat who did anything but the opposite of their name. He was the soppiest animal imaginable. One of his predecessors was named Mir (Russian for peace). She used to love fighting - had to wear very thick base-ball type gloves though

[foxglove in reply to Gambit62]

Loved your cat tales (tails?) and the names Part of the attraction of cats I think is that they are always their own being. Nicky was the only cat we had with an ordinary name we had a Miskak, Mistral, Mesostophiles - among others, excuse spelling, Nicky got his name because my first cat, a stray found when I was 1 year old was a Nicky

[foxglove in reply to PAS-admin]

thanks for reply, it was gp who is adamant that B12 has to be under 150 before supplement needed. It is also husband who is stubborn he likes this doc .and believes in him (which of course matters) The only reason I use the spray is because I can add it to food without telling. There was an article in daily Mail (a bible of my husband) about a lady who was ill and treated wrongly when she was deficient in B12 He actually said maybe that was what was wrong with him...HALLELUJAH but hasn't mentioned it again. With the Alzheimer's I have to be careful not to upset him as I bear the brunt. Believe me it is hard

[PAS-admin Partner in reply to foxglove]

I understand, I have a family member with dementia. You have to pick the right moment to talk, (if at all possible, I cannot say of course from here) maybe a sublingual can be added to his daily meds as a medication? If it's not possible, talk again with the GP or go to a consultant (if he still has to go) and aks for a trial treatment with injections based on the low value. Tell the doc that you've been supplementing but that it obviously does not increase blood value much, and injections would therefor be much better. Tell the doc you just want the best possible care for him, and refer to the research done by Prof Smith on Alzheimer and B-vitamins. (and get folate and B6 tested and homocysteine if possible) Hopefully the doc will see the light...

Gambit has said the rest, I agree with that.

[Marz]

Hi foxglove - I realise you are a well read lady so this is just a thought about hubby. As he has Type 2 diabetes - could he possible also have a thyroid problem ?? Especially as LOW B12 goes hand in hand with thyroid. Diabetes 2 is yet another endocrine condition like the Thyroid - so I like to compare the Endocrine System to an electrical system - when one plug/socket fuses - the whole lot goes down. It may be worth having him tested - thoroughly - the TSH - FT4 - FT3 and the Anti-bodies - Anti=TPO and Anti-TG.

Also the health of the gut is connected to other auto-immune conditions in the body. Oh gosh isn't it complicated ? Happy to help if possible.

[foxglove]

Hi Marz, complicated just isn't the word!!! Hubby's thyroid results excellent and I mean EXCELLENT. Even his cholesterol brilliant in spite of him not caring tuppence about his diet - not fair. Can't remember if I've told you he has been diagnosed with Alzheimer's which explains my main concern re. Vit b12 esp. as he's on metformin. Also prostate prob. which is being dealt with, he attended Urology for biopsy, couldn't be done as he was constipated, at re-scheduled appt. he had diarrhoea so he couldn't even take him to hosp. 3rd appt. made so hope 3rd time lucky, I'm a bit sorry for "poor me" as nothing seem to be getting sorted, just about to go into garden and work of negativity by attacking the weeds!

[Marz in reply to foxglove]

Only just picked up your reply as I didn't receive an alert. So was his FT3 result excellent too ? I only ask as my hubby had a prostate issue and his PSA plummeted when he went onto T3. Also as Docs rarely check the FT3 it can be a problem as the TSH and FT4 can be optimal but the FT3 can be low. Happened to me today with my son-in-laws results.

Cholesterol not linked to diet - at least 85% is produced in the liver for a reason - we need cholesterol. The brain is 25% cholesterol - and is needed for the production of all hormones as well as the synthesis of VitD in the skin.

As we have said before - ain't life complicated

[foxglove]

Don't know about FT3 and don't really want to ! The life we are in at the moment has enough for me to handle !!!

[Ruthi]

On the question of cats, have you come across the Cinnamon Trust? They help the elderly and disabled keep their pets, and rehome or care for any that are left behind. They are often looking for homes for older cats who have lost their owners. And cats(pets) are SO therapeutic for everyone.

[foxglove]

Lots of cat charities do this I have connections with Cat's protection but the trouble with taking on an older and possibly not very well cat would be one would have to go through the inevitable parting again. I am full of admiration for those who do and thank you for trying to help. lots of cats live by us and I have appointed myself surrogate aunt and cat stroker. very enjoyable and enough for me in my present circumstances