In Jan I had various blood tests and I was told by the haematologist that I probably had Pernicious Anaemia as I tested positive to parietal cell antibodies. They then tested my B12 which was 130 (200-900).
I saw my GP who said yes I was a bit deficient in B12 and she told me to start taking supplements. I bought some one-a-day 1000ug B12 tablets and have been taking them since Jan.
Last week I had blood tests as I have lots of symptoms of overactive thyroid and I asked the GP if she could also check my B12.
The blood tests show I have an overactive thyroid and I have been started on medication but my B12 was back in range 227 (200-900) and my GP said this was now fine and as I'm not vegan I dont need to take supplements anymore.
Do you guys think this is ok or should I continue with supplements to be on the safe side? Can you have too much B12??
Thanks all
Lols
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No , you cannot overdose on B12. If you are not vegan , how did your B12 get so very low -130.? Are you free now of B12 deficiency symptoms?
Testing positive for Parietal cell antibodies would indicate Pernicious Anaemia, the treatment for which is B12 INJECTIONS,not tablets , FOR LIFE .( there is no cure ) If the Haematologist passed on the results of your test to your GP , I can’t understand tablets being prescribed . Sorry to ask you so many questions . Also your present B12 reading of 227 is not “ fine” if you are still experiencing B12 deficiency symptoms . Best wishes .
Thanks for the reply. I have been having so many different symptoms for so long I dont know whether its B12, Vit D or my thyroid!!
My GP thinks B12 at 227 is fine. I will keep with the oral supplements, I've got my levels up from 130 to 227 with them so maybe i can absorb B12 after all.
No mention of injections at any point by my GP, i didnt know it was a thing until I saw this forum!
I am seeing an Endocrinologist when clinics restart so I'll mention it then.
Definitely kept up tour supplements. No idea though if getting to cell level. Did theh di homocysteine and MMA I didnt have this tests but did get injections because of severe symptoms.
Log your symptoms .
Preventative is much better than damage or possible cure.
I know symptoms overlap but work through it if everything else gets treated . Also they often come together.
I had a diagnosis of pa in 2007 and have been on b12 since then. My gp has now informed me I wont be having injections again! He said my original levels were in the low 200s which is fine but I disagree. I will have no option but to source my own supplies online
If you're in UK then my understanding of UK guidelines is that you should have been put straight onto b12 injections due to your very low level.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents, info about UK B12 treatment and other B12 info which you might find helpful.
Some parts of UK are using out of date local guidelines. If you're in UK, I suggest tracking down local guidelines for NHS or CCG in your area and comparing them with national guidelines.
NHS and CCGs in some parts of UK have produced guidance for doctors to use during the pandemic. Many UK forum members have had B12 injections stopped/delayed or changed to oral tablets.
"I dont think I had any neuro symptoms back in Jan"
Have you got any neuro symptoms now?
Neuro symptoms include
tingling, numbness, pins and needles, burning sensations, insect crawling sensations, tinnitus, muscle twitches, muscle fasciculations ( a ripple like movement), flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), forgetfulness, word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space), strange behaviour eg putting car keys in the fridge.
Do you have any symptoms of peripheral neuropathy?
Does your GP have a list of all your symptoms, especially any neurological ones?
I am still concerned that you were not put on injections.
Symptoms Diary
Some on forum keep a symptoms diary where they track changes in symptoms from day to day and when treatment received. It can be helpful to keep a diary as it should show over time whether symptoms are improving or deteriorating.
This is amazing thank you!! I did go to the GP back in November and said I was worried I was getting dementia cos whenever I was talking, the wrong word would pop out of my mouth! It was weird cos I knew what i meant to say but my mouth said something different!
I have had vertigo for years, i dont know whether this is related.
I think when things are calmer i will ring the PAS. I have not had Intrinsic Factor test, just PCA.
'Losing' words/talking gobbledeygook and increasing dizziness (vertigo) were and are some of my symptoms, along with utter exhaustion at the end of the day, and I have PA so I think Sleepybunny is right, keep an eye on it and talk to PAS. As Nackapan said, prevention is better than attempting a cure when it comes to the damage this condition can do. All the best!
If you are developing neurological symptoms now, it could mean that you are being under treated. It's important for your GP to rule out other causes of neuro symptoms.
Consequences of under treatment can be severe , there's a possibility of the spinal cord being permanently affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord, access for PAS members only.
Have you requested a referral to a neurologist? A haematologist? A gastro enterologist if you have gut issues?
Please think about joining PAS ; their members helpline should be open even during pandemic. Don't delay seeking support.
If you have queries about your treatment. I suggest putting them into a brief, polite letter to GP. See letter writing link in my post above.
In UK, letters to GP are supposed to be filed with medical notes so letters are less likely to be ignored. I feel it's helpful to have a paper trail in case there is a need for complaint in the future. A letter to GP is proof that the issues were raised.
Letters could contain symptoms list, test results, dates of diagnosis, relevant personal and family medical history, extracts from UK documents, referral requests.
There are many causes of B12 deficiency besides PA eg diet, Coeliac disease, H pylori infection, Crohn's disease, fish tapeworm infection, exposure to nitrous oxide etc. Has GP considered other causes besides PA?
Keep taking the supplements, they are why your B12 is back in normal range if you haven't had any other course of treatment, eg injections. And no they cant do you any harm, any excess will just be peed out.
My understanding is that your current reading of 227 does not necessarily mean that you are getting b12 into your cells - the testing for b12 is much more complex than just a number. If you do the reading suggested above, you will understand more about more effective ways to test whether your body is able to utilise the b12 from oral supplements, but I would question why with 1) A b12 of 130 and 2) A positive parietal cell antibody result you were not put straight onto b12 injections. A bit of gentle probing from your GP would have uncovered your neurological symptoms too and directed you onto the right course of treatment. Unfortunately many GP's lack understanding in this area and you have to do the research yourself. I am sure the heamotologist would back you up and encourage the GP to look at and digest the latest guidelines for B12 treatment as currently they are not being followed.
"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 does not show updated BNF info. See BNF links in my other post.
"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.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
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