In the 1970s I had severe anxiety and panic attacks: in the 80s I developed ME which lasted into the 90s; then I started with atrial fibrillation which resulted in waiting for years for a diagnosis - prompted by a very junior nurse saying, 'I can't take her blood pressure, her pulse is all over the place.' I am so grateful to that nurse when senior doctors failed me, and a consultant who said , 'We can see it happening but there is nothing wrong with you.'! Diabetes came along in 2016 and I was put on Metformin which depleted my B12 reserves, and I got all the symptoms of fatigue, hair loss, incontinence, etc and became quite ill. I managed to persuade my doctor to test my blood, and it came back as 'normal'. He had only tested the serum levels, and I was poorly educated at the time about testing for active B12. Many months later I have read such a lot about intrinsic factor, parietal cells, antibodies etc. But best of all I discovered why a distant cousin was obliged to eat raw liver - she died young, of Pernicious Anaemia ; also her brother who had 'neurasthenia' and the fact that it sounded as if he too had PA; he died too. And their baby sister / toddler died too. So where do I go from here? Do I go back to my doctor and wave my sheets of findings at him? he obviously won't have time to read them. Should I seek out a naturopath or a dietician? Where do I look for them?
I have to say I am feeling somewhat better now as I have been taking Methylcobalamin and Methyl Folate, but I still lack stamina and energy. Walking is horrendous, and painful in my legs.
Age 75, female.
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24yearsandcounting
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If you think it's the metformin depleting youf b12 . That along with absorbtion slowing down as less stomach acid you may do well on daily oral doses of b12.I'm so glad you've found it helping already.
I take an over 50 multivit
The Intrinsic factor antibody test picks up about 50% of those with PA .
Your G.p should be aware metformin depletes B12 .
If you end up needing B12 Injections its usually s loading dose of 6 over 2 weeks then 2- 3 monthly for life.
Alot of us need a more frequent regime as a maintenence.
Really hope the oral B12 works for you .
1mg has been recommended of B12 but so has 50mcg 3x away by the NHS as has 400mcg folic acid daily .
Do get your bloods done to check iron ferritin vit D
If B12 is done ,do state what supplements you are taking .
Sometimes blood levels can be high but not utilised.
Gps can lack knowledge and training so good you've done your own research
Welcome here. Sleepybunny has given excellent advice and signposted to the organisations that you need to know and be aware of. So, please do read them.
Oh dear, unfortunately the consultant needs to go back to school by saying, We can see it happening but there is nothing wrong with you. They meant, We can see it happening but we cannot figure out why it is happening.
It is quite simple there are new discoveries such as a new mammal and Dark Oxygen. So, seeing as you have had poor Quality of Life for decades, let us get you up and running.
It seems you are responding to oral Methylcobalamin and Methyl Folate. You have a Family History by a cousin, brother and toddler. I am aware that ‘neurasthenia’ can be PA.
Now for the bureaucracy of the NHS :-
1) You live in an area where some people have sat around a table and decided the range for iron deficient, B12 deficient, folate deficient . That also means a cut-off level is given which determines that “You are sick.”
So you need to get those blood results to see what the ranges and cut-off levels are.
Guess what ? They vary wherever you live in the U.K. because of the allocation of a Budget. This is called the Postcode Lottery. How weird that you can be recognised as “Severely Unwell” in East Leicestershire and Rutland CCG but in Bristol, North Somerset and South Gloucestershire Integrated Care Board, you are “Normal” and perfectly healthy.
The easiest and quickest way is to bypass the system but it will cost. It depends on what you can afford but I think after all this time you deserve to be free of pain, have good mobility, be less fatigued, be calm and have a strong, regular heartbeat. This will take time, once on the Road to Recovery.
Scrolling quickly through your earlier posts and the above I cannot help thinking you may have low thyroid. ME is a diagnosis my cousin was given at the start and end of her physiotherapy career. When years later I was diagnosed with Hashimotos she too decided to test and was found to have the condition.
I have no wish to add to your problems but ruling out root causes can be helpful... 🌻
Do you know the name of the person (without naming names) who would be excellent at addressing 24yearsandcounting’s problems ? Looks at them holistically ?
Oh and was hauled over the coals by the General Medical Council for advocating vitamins and minerals on approximately 40 odd occasions. Understands M.E., thyroid disease, autoimmunity. She has written at least 5 books.
I am really fed up with myself; I wrote you a lovely long reply then lost it when interrupted by the phone. DRAT and BOTHER!
Yes, in lamenting about all my other illnesses I totally forgot the low thyroid problem. I was diagnosed with it in about 1980, and was prescribed Levothyroxine. After a few weeks I spoke to the Doctor to say that I didn't feel as well as I thought I should be. He said, 'Well you are 75 on the scale of 50 to 150, and that's exactly half way between: bang in the middle.' Err? I don't think so! I have been on 125 micrograms for a few years now and I seem quite stable.
This wasn't the first time I had bad advice from a doctor: when I was a teenager my then Doctor diagnosed my verruca as hard skin and told me to put lotion on it, that spread it nicely, and we had to pay a chiropodist to deal with it!
Then when I thought I might be pregnant (only about 8 weeks) a nice new doctor looked me up and down and said, ‘Well you don’t look pregnant to me.’ EIGHT WEEKS!
Yet another new doctor diagnosed my ME as, ‘I think it’s just you.’ So I booked a walking holiday in Derbyshire to perk myself up. I have never felt so bad.
My atrial fibrillation took 24 years to be properly diagnosed – ‘We can see that it’s doing it but there’s nothing wrong with you.’ But when I became diabetic type 2 a young nurse was detailed to take my blood pressure and she lamented, ‘I can’t get a reading, the pulse is all over the place.’ The duty doctor got in panic mode and wouldn’t let me go home until he had given me a prescription for warfarin.
The diabetic clinic put me on Metformin which messed up my B12 levels and I quickly showed all the typical symptoms of fatigue, hair loss, brain fog, incontinence, wobbly legs, ridged nails, you name it! So I asked my most recent doctor to test my B12 levels and he found them to be ‘perfectly fine’.
I was a bit ignorant of what to do next, so I researched Dr Google – you tube department – and started learning all about MTHFR gene problems, and Intrinsic Factor antibodies, and loads more, so that when I next go to see him I can ask him to do more relevant tests – active B12 rather than just serum. I scored 448 on a scale of 187 – 883; my folate was 8.6 on a scale of 3.1 – 20.5. Comments: B12 level is greater than 300 so deficiency unlikely. Holo TC not performed. And a reminder to the doctor to interpret the findings in conjunction with the symptoms displayed – like having to squat and wee in the street because the public loos were locked.
I have been taking methyl cobalamin sub-lingual, and methyl folate, and feel a lot better, but I still lack energy and I find walking (especially uphill) very hard work.
Unless I have forgotten anything else, I would like to tell you about my favourite illness: a couple of years ago I developed shingles, I received an instant diagnosis, some sympathy, pills that worked and a probable end-date for my sufferings. Definite beginning, middle and end. I can deal with that.
Am wondering if you have your latest thyroid test results to hand ? TSH FT4 & FT3 ? The FT3 test is the most important test and yet VERY rarely carried out. So many of us test privately to ensure we are optimally treated. How much levo are you currently taking ?
Many of us are also on the Thyroid UK forum where you will be able to add to the great advice/knowledge given here. Myself included. Like you I have had a complicated health journey with a late thyroid diagnosis at 59 in 2005. You can click onto my name and read my Bio ! So many overlaps with thyroid and B12 issues.
Have you had thyroid anti-bodies checked ? How is your VitD ?
I self treat my thyroid and B12 issues and am very grateful for this forum in keeping me updated. 🌻
It looks like oral B12 is working for you but I think you need to take much more. If you have PA you can only absorb B12 via passive absorption which means only 1 or 2% of the oral b12 you are taking will pass into your bloodstream. Oral B12 works for me but I need to take a lot and also take it in a certain way - I dilute sublingual liquid in water and drink it regularly through the day. Maybe one day I will need injections but at the moment I am happy with oral B12.
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How does it feel to have too much B12?
seeing neurologist, advice on b12 injections welcomed…
About German online Pharmacies. — If they follow pharmaceutical rules rules,they are not allowed to supply U.K. with B12 ampoules! 
