Memory problems

Ive recently found this site and it's so reassuring to know PA is more common than I had thought and with many people experiencing such a wide range of symptoms. I've had PA for 15 years now with a real mix of symptoms during this time. What is bothering me mostly right now is problems with short term memory and difficulty thinking straight. Sometimes I seem ok but at others it's as if I wasn't part of the conversation at all as I seem to hear or remember half of the story. I listen without hearing if that makes sense. Hubby often fills in the gaps for me. I'm in my late 50's, low thyroid also so I'm on Thyroxine. It may be an ageing thing or being post menopause or being hypothyroid or having PA. is anyone else feeling the same? I'm on injections every 2 months. Just had my top up today thank goodness, I sure feel ready for it. Thanks again for a great site.

13 Replies

  • Sounds like you aren't getting the amounts of B12 that you really need. Likely to be difficult to ask for B12 more frequently but you could try that - and if not think about supplementing.

    Also, do you know how your folate levels are currently doing? if those are low or falling then that will affect your ability to process B12.

    I doubt I could go for a week without the memory just giving up and I'm mid 50s.

    My mother was recently started on B12 and she was back to hopelessly confused within a week of loading shots (wasn't aware that she had been put on B12 at that point and only found out about it by accident - now have her on a nasal spray 2x a day which seems to have improved her energy etc but she has multiple problems aside from the B12 (cancer of the womb, MODY diabetes with some quite advanced neuropathy - and a really bad ear infection that just doesn't seem to want to go away) so it's a bit difficult to unwrap exactly what is going on.

  • Thanks Gambit62 I will try supplements and see if there's any improvement. I mentioned my concerns today with the practice nurse and she said I could have the jabs earlier if I wanted. Folate levels unknown but the nurse is organising blood tests as I mentioned to her today that my thyroid has not been checked in 18 months but I don't think she is checking anything to do with my B12. You sound like you have a lot going on at the moment with your mum. Hope she does well. I'll try supplements and see how I get on. I appreciate your reply thank you.

  • Hi Barbie - so good that you have been offered more regular injections. I would grab that opportunity. Also as Gambit suggests - add supplements in between injections - either sprays, patches or lozenges under the tongue. Any excess your body does not require will be excreted.

    Regarding your thyroid - what dose are you taking and how are your FT3 levels ? T3 is the active thyroid hormone and the brain has more receptors for T3 than any other part of the body. The gut has the second highest amount - which could explain why so many people with thyroid issues have gut problems too. It doesn't matter how much T4/Levo you are taking- if it does not convert into the Active hormone T3 then it will not be helping you to feel well. The T4 your thyroid produces is a storage hormone and does very little in the body. Many Docs do not test FT3 and this is wrong - very wrong.

    In order for the T4 to convert well into T3 you need good levels of Ferritin - Iron - Folate - B12 - VitD. So those tests and results with ranges would be very helpful for you. I would also suggest you have your thyroid anti-bodies tested - in case you have Hashimotos. Auto-immune issues like to hunt in packs :-)

    I am not medically qualified just a Hashimotos girl who has weekly B12 injections having had the Terminal Ileum removed over 40 years ago !

  • Hi Marz thank you for all your info. I've really no idea on my thyroid levels but I'm on 75 micrograms daily. Everyone seems so knowledgeable on this site I feel like a bit of a novice. I'm realising I need to take more of an interest and subsequent control of my health needs. I'm due some blood tests soon so I will know more then. I'm definitely going to go for the B12 supplements as Gambit mentioned because I do feel a slump after a few weeks and it seems a slog till my next jab. I've decided I'll get my jab every 6 weeks and see how I get on. I used to have them monthly but dr changed it to every 2 months a few years back. I guess I've got a wee bit of research to do on both PA and thyroid issues to get up to speed with what is going on. Loving the site it's so helpful at the moment. Ill hopefully have more news after the results are back. Thanks again for your help.

  • Yes it seems very short sighted of the NHS to reduce B12 jabs - after all it is not an expensive treatment. It used to be monthly - then two monthly - and now every three months. I often wonder what they based this action on....but no doubt its all about cutting costs.

    Please do not feel like a novice - we are all learning new things every day. Just take it a step at a time. Do obtain your thyroid blood test results and any others you may have had. It is your legal right to have copies.... see below. Maybe post your thyroid results with ranges on the Thyroid UK forum of HU and there are around 30,000 people there - so lots of help and support. I have learnt loads :-)

    The above website tells you everything you need to know about the thyroid and more. There are details of Private Testing if your GP does not do as you wish....well worth the money. Also have the other tests done I mentioned in my earlier post to help you unravel the issues that are preventing you from being well.

    You may well need an increase in your Levo - 75mcg is quite a small dose and if your FT3 result is low - then you will definitely need an increase. Please push for the FT3 to be tested - again labs are refusing to do the test if the TSH is in range as it is costly. Your TSH needs to be 1 or under and the FT4 in the upper quadrant of the range. The FT3 in the upper third.....

    Sorry do not mean to overwhelm you - just want you to have the treatment you deserve. Low VitD can also be the cause of memory issues and more.....

  • Hi Marz Thank you so much for such a helpful reply. I will check out Thyroid UK and have a good look around their site. I'm not quite myself and I know I can feel better than this. I'm not too bad today and energy levels holding up thanks to jab yesterday but the feeling will soon fade. I've got lots of homework to be getting on with (I should then be a lot more informed). A big thank you again for taking the time to help out.

  • I echo Marz's comment - make sure you get your ferritin level checked. Iron deficiency has similar symptoms - I had lots of memory problems and difficulty ordering my thoughts when low in iron. And iron deficiency is also a risk with PA because PA is linked to low stomach acid which makes iron more difficult to absorb.

  • Thanks Laura. I see on my blood requests I'm having ferritin and iron plus full blood count checked (as well as thyroid). I was on Ferrograd iron tabs up to June last year. I'd been put on these by the consultant who admitted me when I went into hospital 15 years ago for a blood transfusion (3 pints) to treat my extreme anaemia and then diagnosis of PA. Dr phoned me in June last year and had a chat and said to come off them and see how I go on. I agreed providing he check my bloods every second month which he did up to December last year. He said ferritin and iron and FBC were ok so to stay off the tablets. My hair has begun brushing out now and is thinning. My nails are ok with no flaking. I haven't noticed a big change since stopping the iron but experience tells me how subtle low iron levels can be and how unaware we are to its effects having become very anaemic over some length of time without knowing I was. I'm just hopeful those tests come back ok and I can concentrate on the PA and thyroid. Thanks again Laura.

  • Hi, Marcelle here. I have had such bad short term memory for a couple of years it is horrid. Last week for two days I was convinced it was January and went out to get a present for my old neighbour, and only just before starting a card realised it was not. I go early for appts, late, the other day must have put one on the calander and when they did not turn up rang the office. I had been told I was going to be attending a clinic two weeks ago which I remembered when the nurse rang back. I have had quite a number of falls too. I had a blood test for Dementia which I am waiting to hear from my GP tomorrow about, he does not seem to understand why I am so concerned about PA and tells me there is no such thing as a Consultant for auto immune. Cos they do not seem to know much about it, it is so hard to get things sorted isn't it! Chin up, at least being able to contact others on this site we have like minded people and can share experiences. So nice to know you are not barmey and lots of others are the same, sort of comforting really. Take care.

  • Hi Marcelle, you seem to be battling with memory problems. It can be very scary when you realise what is happening but, yes also comforting to know you are not alone. Fingers crossed your blood test comes back clear and maybe then you will be out on the right path for some help. It's becoming clearer to me that B12 jabs are not the end of the story - PA seems to alter through its course and throw up all kinds of symptoms where the jabs may need increasing/decreasing/adding to with other supplements/getting treatment for new symptoms etc. It's more complicated than I thought. I'm still learning about it at the moment. I hope you have a good result Marcelle and can find some reassurance in that.

  • Thank you for that. The blood tests show kidney problems (only have one) but that should be easy enough to sort. I have been given additional iron tablets and am hoping that may help a bit both physically and maybe memory. Referred to the Memory people at the hospital, as Age UK have taken that over now I should feel at home as I am one of their volunteers so know alot of people already. My doctor seems to think I am obsessed with PA, I doubt if he has bothered to even check this site as I suggested. Now says that my consultant already, Dr Sheen, not only does my liver and kidney etc but is well up on PA. I have never had discussions with Sheen before on this and have been with him about 10 years. I feel I am being fobbed off but as I know and respect Dr Sheen I am sure that either he will be really good or put me on to suitable consultant. I have the Endoscopy booked 28th October but as Dr Sheen will be doing it I am still waiting for an appt with him first. My GP said he has written and reminded him that I am supposed to see him 6 monthly, but I should be aware that appts take at least 4 months now as it is only Dr Sheen and another Dr who is intermittent left in the department. Great stuff. I am baffled by all the things others seem to know and put on the site, I have no idea what level what I am supposed to keep an eye on, and all these injection and supplement names, well I feel such a dope but really not a clue. I have had this for 9 years too! I bought a spray from Holland and Barrett for B12 supplement which I think was starting to help between now 6 weekly injections, showed my GP who looked bemused as to why on earth I bothered, but as I say something might have got through as I now have Ferrous Fumarate 210 mg x twice day on top of my compound vitiman B6. Will keep in touch and let you know how I get on, if I remember !! Thanks again, hope we can all help each other with this awfull PA.

    Kind regards,


  • Like you I am travelling on an unknown path learning all the time about PA. I'm not clued up at all and like you can feel overwhelmed by it all. I hope all goes well with the investigations you are having and that your call for help doesn't fall on deaf ears. Reading around the posts on this site we all seem to be affected differently. Mine is a memory problem at the moment but I'm reading other posts which are giving me a bit of a boost. Hope all goes well with the endoscopy. Best wishes.

  • The hearing problem , is a symptom I experienced when I was peri- menopausalm. I still experience tge hearubg duffuculty is karfe areas alot of peopke and noisey.

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