I was diagnosed with T2 Diabetes about 10 years ago, so I have bloods taken frequently. A few years ago (5, maybe?) I was told my B12 was low [this is a side effect of a diabetic med], so I was given the injections and recovered.
Two years ago I start feeling like a pile of wet spaghetti, and when I was having bloods taken I told the nurse I felt terrible, so she tested for B12 and again it was low. Thing is I'm not on that diabetis med any more. Then I remembered that my mother has to get B12 injections, so I went online, and started searching for information and came across the PAS site.
Now, I've been ill since my mid-teens, and have never been diagnosed with anything – I know it wasn't anorexia, bulimia, diabetes, epilepsy, a brain tumour...eventually they gave up. The description of PS that was on the site at the time was almost a word-for-word description of what had put me in hospital all those years ago. Eurkea I've figured it out!! So I downloaded the list of symptoms, printed it out and took it to the doc – to save time I use a highlighter pen to mark all the symptoms I have, or have had. And I 'ticked' 24 of the 33 symptoms listed (I've noticed the list is slightly different now).
Doc dismissed the idea out of had without reading a word of the list.
The injections I was given in 2016 had little to no effect on me. I'd had a UTI in 2015, and I've been feeling like death warmed up ever since (it raised by blood sugars to dangerously high levels). I got my blood sugar under control but I'm still feeling ill. A few weeks ago blood tests revealed my B12 is low again
I've had one jab so far, but there's a shortage of B12 in Ireland at the mo'...so I've got to wait till supplies get here. First jab had a slight effect on me, but not much, my brain fog isn't as dense as it has been but my hands are giving my gyp, I'm getting bad palpitations, having problems breathing – and my blood sugars have started to go up again because I'm stressing like mad about everything...
So I'm going to try bringing up the subject of PA again and see if she'll pay attention to me this time (no I can't change docs, small town, one clinic).
Wish me luck!
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Saoirse2016
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Not an ideal situation but please be aware that within the EU it is possible and legal to import drugs for personal use when you cannot obtain them locally. Many of us on this forum based in the UK import injectable B12 for personal use from Germany using on-line pharmacies based in Germany where injectable B12 isn't a prescription only medication. The injections can be done subcutaneously rather than intermuscularly if that is easier.
B12 deficiency can operate at a number of levels - it can be caused by absorption problems but in a few people it can be operating at the cell level if they have some specific (and uncommon) genetic variants that mean processes in their cells don't run properly. It may be that you are one of these people but that the situation has subsequently been exacerbated by metformin and possibly the general effects of diabetes and aging (which can lead to a reduced ability to absorb minerals and vitamins anyway). If this is the case then you would be someone who not just needs B12 in the normal range but needs them to be high for your cells to have enough B12 to run the processes. If this is the case then you might find that high dose oral - eg sublinguals - might do the trick for you - and these aren't prescription only. I use a company called detox people but lots of people also get supplements on line eg from healthfood suppliers on amazon.
Thanks, yes Republic of Ireland, I think the chemist is trying overseas for supplies, it seems the whole of RoI is in need of B12 these days! i hope I can get some soon, it's playing havoc with my hands at the mo'.
I'll mention the genetic variant to the doc and see if she'll listen to me [this time!] I'm sure my mother has been on the injections for over 20 years, she also takes something for her thyroid, and folic acid. I've had my thyroid checked a hundred times (only a tiny exaggeration!) and nothing ever shows up, but I did get a low folic acid one time...
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
If you suspect PA, may be worth joining and talking to PAS. Do you have any blood relatives who have been diagnosed with PA or other auto-immune conditions? PA can run in families.
Based in Wales, UK but has members from around the world.
Have you ever been tested for PA.In UK, this would usually be an IFA Intrinsic Factor Antibody test.
Your doctor may not be aware that it is possible to have a negative or normal range result for IFA test and still have PA. See BSH Cobalamin guidelines link for more info about Antibody Negative Pernicious Anaemia.
Do you get copies of all your blood test results? I learnt to after beingt old everything was normal ans then finding abnormal and borderline results on the copies.
In relation to b12, I look particularly at B12, folate, ferritin and full blood count results.
Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?
If yes, diet as a cause of low B12 becomes less likely and it becomes more likely that there is an absorption problem. See Risk factors section.
Coeliac Disease
Have you ever had tests for Coeliac disease? This can lead to b12 deficiency.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
Info in above link is based on NHS info. NHS info puts emphasis on anaemia caused by b12 and folate deficiencies. Some doctors may not be aware that it is possible to have severe B12 deficiency without any anaemia.
Thanks, I've been on the PAS site for a couple of years.
I'll go through the links and see what information I can gather for the doctor. I do have stomach problems so it may be an absorption problem, I do eat fish, chicken, and veg.
I don't know about anyone else in my family as we don't talk about these things!
Hi Saoirse2016 was your Folate (Vitamin B9) level ever checked?
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
May know which guidelines on B12 deficiency are used in Republic of Ireland.
Do you have any neurological symptoms eg tingling, pins and needles, tremors, memory problems, balance issues, tinnitus?
If yes, in UK people with B12 deficiency with neuro symptoms are supposed to get more intensive B12 treatment in order to prevent severe neuro damage. See BNF, NICE CKS and BSH Cobalamin link for more info.
In UK, for patients with B12 deficiency with neuro symptoms, it is recommended that doctor seeks advice from a haematologist.
My personal view is that a neurologist might be a better bet. Lack of understanding of b12 deficiency can occur in specialist doctors as well as GPs .
I have the tingling, pins and needles, tremors, brain fog and balance problems (and have done for decades). I have previously asked for a referral to a neurologist, but the GP didn't even respond
Trouble is nowadays I don't drive, and the bus service here is rubbish, I can't afford a taxi, and it's hard to find someone who's able/willing to take a day out of their life to take me to, wait, then bring me home from the hospital...
Keep at your doctor or try another one , I'm keeping a diary as of last month and have been doing my own research too , they hate it , but I feel they have missed this , b12 with me , for years they sent me to see reumatoligy , and there was nothing there , so I got discharged , it quite clearly is neurological , and something to do with b12 , I wish there was more research done on this , as its us effecting many , and doctors need to listen to patients symptoms more .
I asked for my medical records when I was leaving Scotland and was refused. AFAIK they have never been sent over here, so there's a lot of information missing from my medical history - which doesn't help my efforts!
It's possible that some info was sent to your doctors in Republic of Ireland. If you get a complete set of medical records perhaps there would be some info from your time in Scotland. Not sure how much this would cost though.
"I have previously asked for a referral to a neurologist, but the GP didn't even respond"
Have you considered putting your request for a referral to a neurologist in a letter?
Next link is about writing letters about under treatment of b12 deficiency with neuro symptoms. Some info in this link may be UK specific.
1) Click on section "Diagnosing B12 or Folate Anaemia"
2) Scroll down page until you get to "Referrals" section.
3) Under heading "Haematologist" it clearly states that a patient will be referred to a haematologist if they have neuro symptoms.
It also mentions potential referral to a gastro-enterologist if absorption problems are suspected eg PA, Coeliac disease plus others.
PAS (Contact details in post above)
If you join PAS,they may be able to pass on useful info. They might know what B12 guidelines Republic of Ireland uses. you don't have to live in UK to be a member of PAS (Pernicious Anaemia Society)
"nowadays I don't drive.. bus service ... is rubbish ..can't afford a taxi....hard to find someone who's able/willing to ....take me..."
If you do an internet search for "community transport " in your area then it might show some groups who can offer transport to appointments.
If you contact your Local Health Office (details in link below), they can hopefully tell you about local providers of hospital/community transport
"going to try bringing up the subject of PA again and see if she'll pay attention to me this time"
Some forum members who were not getting adequate treatment for B12 deficiency with neuro symptoms have passed info to doctors about Neurological Consequences of B12 deficiency (including PA).
There is a useful article in PAS articles/leaflets section called "An Update for Medical Professionals: Diagnosis and Treatment" This is only available to PAS members.
If I were you I would have my T3 and T4 thyroid hormones checked, because your symptoms could be related to hypothyroidism. Usually doctors check only the thyroid stimulating hormone (TSH), which is terribly misleading on many occasions. Often people with B12 deficiencies are also hypothyroid and they also have high blood glucose readings. Try to find a doctor who has an open mind on thyroid testing. If you find you have hypothyroidism, then come back to this forum to consult on meds. Best of luck.
I was at the GP's yesterday getting my most recent B12 injection [supplies finally having come in!] they are making a difference this time, my hands and feet are much better than they were.
I asked the nurse what my B12 had been when it was tested in March and she said 104...I have no idea what that means, but hopefully some one here can enlighten me!
GP has decided to test my blood again in August to see what level it's at and then go from there as to whether I need a jab monthly or quarterly. I did point out that my mother has to have B12 injections three or four times a year, and the nurse did listen to me!
So fingers crossed I'm on the road to proper treatment this time!!
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