I have posted a couple of times on here over the last few weeks regarding my 84 year old mum who had a B12 level of 122 (180 - 914) and thanks to the guidance and kindness of fellow members I have been able to deal with her GP with confidence due to the knowledge I have gained from you all.
I cant tell you how grateful I am to people on here for sharing that knowledge and giving me the ammunition to be able to fight my mums corner which, today, has resulted in the "standard" treatment being ditched and the correct treatment being given - two/three weekly injections until neurological symptoms cease and then every two months thereafter. She may not be able to have three a week due to the availability of district nurses on a Saturday but I am hopeful that this will be overcome somehow by her GP.
Thank you all once again for your kindness and your response to my calls for help as it has been much appreciated and not wasted.
Moggie x
Written by
Moggie
To view profiles and participate in discussions please or .
I dont think I would have been so well armed without Marz linking me to your "Summery of B12 document" so thank you very much for taking the time and trouble to educate the less educated in all things B12 related.
You are most welcome. I may be a scientist that understands this stuff, but I still get 'mind fog', so I put the summary together for me to use when I saw the haematologist. Putting it on the web after was no trouble at all.
Ahhh the dreaded brain fog - I think it is the worst symptom of thyroid illness and add my low B12 to that I am often left fumbling for words (my spelling can also be dire). Will be going back to your summary to see if I can use the information to jog my own GP along although, unfortunately, my B12 levels are just in range unlike my mums.
Thank you once again.
Moggie x
Great news Moggie. I'm so pleased for you and your Mum. You are a great daughter. Hope life becomes a bit easier for you from now on.
No not an example just someone who can take good advice given by others and use it to her advantage. I found, on the thyroiduk site, so many people who were unable to take on board what other sufferers were telling them and there is no one better to advise that someone who has been there, done that and got the t-shirt, advice that is given freely and willingly. I have no trouble disregarding what a doctor may be telling me but to disregard the wise words of a fellow sufferer would be foolish and that is why sites like this one is so valuable.
It's so good to get such a positive post and I'm so pleased your Mum is going to get the treatment she needs and well done you for getting it "sorted". Purrfect!
How witty are you - that was intentional to link Moggie (cat) to Purrfect wasn't it.lol. You have made me smile this morning so two reasons to say thank you, one for the "well done" and one for the smile.
Brilliant, it's nice to find someone who has retained their sense of humour on a site like this as illness can take that away from you. You have a good day too.
LOL. The people on this site seem to have a multitude of talents and the wonderful ability to make you smile (which is priceless). Very clever reply Sleepybunny and much appreciated, as is all your previous input on the subject of my mum.
Clivealive seems to have started something now.lol. Notice I am not trying to reply to either of you in the same vain - I am just not that clever/witty!!!!
Congratulations! What a lovely daughter you are and I pray your mam to benefit from this. I have just written [via email] to my local MP and the health minister asking for B12 to be raised again! [gave them both a linc the the PA website [lets hope they can read] I will continue to do so until they relent I will not bend. Lets all do it....we shouldn't stop until we win. I know they have been approached in the past but I'm approaching them again. {ha ha wish us all luck!} [The BuzzyB12's] lol
Hi Moggie B12 ... In general its for everyone. I feel so sorry for people with this problem that they have such battles to get the help they need with this. Not just on this page buts of others too. I only discovered it a few months back for myself that it could be my problem also. It was when I seen how hard it is for sufferers to get help I decided I would write to these ministers its disgusting to say the least. I'm on a mission lol....I will write to J K Rowling, and the Duchess of Cornwall both have had parents with memory problems. They may need help for themselves who knows are they aware of how important B12 is for this problem too? I will just knock on as many doors I can it may have been done by others I don't know, but mine will be another hand that knocks. Warmest wishes
I admire your energy and commitment. Unfortunately energy is lacking in a lot of sufferers and they tend to put what little energy they do have into fighting their own personal battles - which in itself can be daunting.
Wishing you well on your quest and I truly hope you get results.
Hi Moggie ...Thank you. I understand what some people are going through with this but the PA must be hell for them. Someday's are rubbish I was sitting in my jammies all day a few months before Christmas it started to get worse then after Christmas I thought my end was coming during Jan & Feb honestly. I was feeling horrendous so very tired I couldn't even get my mind into 'kilty' to go to the doctors it was that bad. I couldn't be bothered with no one nothing, every thought of getting ready to do something was a mountain. I hardly ever went out. At this time I was on PPI's I have taken them for years, and my GP wanted to reduce the dose without even seeing me this was going to be done during a telephone repeat prescription procedure, I had suspicions as to why she would want to do this. (knowledge from my past employment kicked in) It came up on my web pages that very week that PPI's could be the cause of memory problems! ??? (now kidney problems too) My curiosity got me woken up to do some research I was so desperate this is how I got to B12. I started B12 1000 for a few weeks then increased it up to (5000 Jarrow brand) I feel alive! and progressing. My fingers were covered in warts too (12 of them, one was like a cauliflower on the end of my finger the nail was rising up from the nail bed I though I was going to lose the nail it was bad) Now only one more to go and the're gone I have had a mole thing on the top of my leg for over 40 years its shrinking! Is this another problem that B12 addresses? They say warts are to do with immune system? I believe a massive investigation into B12 should be done. If it has been done they have missed something, time to look at it again. My family have noticed my skin too is looking good I look healthy the grey deathly look has gone. I feel a lot better than I did for certain not 100% but better. Maybe the injections would be better but I don't know if I could do them well see. Best wishes
PPI's do a hell of a lot of damage to the gut so I wouldn't mind betting that you are low in other things as well - have you had your iron, ferritin and vitd checked!!!!!! My Gastro wanted me to take PPI's but I nearly flipped my lid (lost my temper) and told my GP where she can put them!!!!! PPI's should be taken with real caution. The trouble is that low stomach acid has the same symptoms as high stomach acid and without detailed investigations you can be put on them unnecessarily and once you are on them it is so very difficult to get off of them again.
Well done you for doing your research and finding the cause of your illness but please dont stop looking as usually if you are low in one vitamin then others will follow.
Jay-46 - B12 is also involved in osteoporosis - so you may like to remind the Duchess of Cornwall on that one. She also has Crohns so will have absorption problems and as she smokes her TSH will be suppressed so will not reveal a possible thyroid problem Smoking will also affect her B12 along with a tipple or two !
Have you seen the campaign to sign to make B12 available OTC .... ??
Just signed it Marz - are you a fan of The Duchess of Cornwall or something as you seem to know an awful lot about her.lol. none of which I have ever come across.
I was once treated by an Indian Doctor in London. He wrote several books - one of which had a Foreward by Prince Charles. I think he treated him too. He was the one that told me she had Crohns - possibly to make me feel better The rest - about osteoporosis - was in the press - along with the fact she smoked. Am not a particular fan - am just nosey by nature
I remember when I was diagnosed with Gut TB back in the 70's - one of the nurses telling me Petula Clark also had TB - was that supposed to make me feel better too
Marz- Hi thank you I will have any info for this I'm not a fan either but if anyone can help all the better for the sufferers of this. Do you remember the name of the Doctor who treated Charles? May be a good linc into this as well I will look at any door as long as it gets it opened.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Smoking will also affect her B12 along with a tipple or two !
Good morning people and Thank you all
A thousand thank yous 
Thank you Health Unlocked & Pernicious Anaemia Society & B12 Deficiency Support group
Just want to apologize and say thanks.
