im new ! hello!! having blood tests to check b12 ...

[lynn81]

if my levels are low but over the requirement would I still be given injections if I ask for them?

what else can I do if I don't have low enough b12?

My background!

Im 35yrs old , over 20yrs of severe fatigue, brain fog, migraines, dizziness , ibs and more recently infertility . In that time I have been told i'm suffering with anxiety, depression and all sorts but if I wasn't soooo tired all the time I wouldn't be so anxious about getting things done ! I recently qualified as a personal trainer but have to limit my clients as I need to sleep in between , I cant take part in races etc because I cannot control my bowels when i'm running . we have been trying to conceive for 6 months, I have had 2 early miscarriages and a chemical pregnancy. im very pale , itchy dry skin , brittle ridged nails. I don't get short of breath but do hold my breath a lot which I have done since I was a child. my brother has crohns disease and inflammation. I have had a colonoscopy and biopsy all clear (phew). tested for coeliacs was also clear.

[Sleepybunny]

Hi Lynn,

I'm too tired to write long reply but have on other recent threads so if you search for my name it might show some useful info.

"if my levels are low but over the requirement would I still be given injections if I ask for them?"

In the UK, my understanding is that people who are symptomatic for B12 deficiency are supposed to be treated even if b12 blood levels are within normal range. sadly many people have a real struggle to get treatment.

bmj.com/content/349/bmj.g5226 See 5th summary point.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

I found it helpful to read the whole "BCSH Cobalamin and Folate guidelines". It has details of recommended uk b12 treatment and also a diagnosis flowchart for B12 deficiency that shows the recommended process doctors should follow with someone they think may have B12 deficiency.

B12 books

Found these two books invaluable

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS (Pernicious Anaemia Society). its up to datew ith UK guidelines

"Could it Be B12" by Sally Pacholok and JJ. Stuart. very comprehensive book about B12.

Link about B12 and pregnancy

b12deficiency.info/b12-and-...

There may be stories on Martyn hooper's blog that are relevant to you.

martynhooper.com/

Another B12 blog

b12deficiency.info/blog/

I am not a medic, just a person who has struggled to get a diagnosis.

[lynn81 in reply to Sleepybunny]

that's really informative and helpful, thankyou so much. Are you having injections? Do they help at all ?

[Sleepybunny in reply to lynn81]

I had to resort to self treatment after many years of trying to get treatment from NHS. IFA tests were negative. Some of my neuro symptoms have disappeared.

[AngelaJG]

Hi Lynn81,

My b12 reading was above the minimum guide lines, I have many symptoms of b12 deficiency & Pernicious Anaemia, my doctors unfortunately will not listen to me, and in desperation I took matters into my own hands and started self injecting.

I hope that you get things sorted with your doctor and that they will listen to you and take on board your symptoms and act accordingly, as it is far better to have the Doctors working with you than to be out on your own,

good luck and best wishes.

[Gambit62 Administrator]

If you are in the UK then the standards that should be applied to your treatment are those produced by the BCSH, which are quite clear that B12 deficiency is not something that can be diagnosied and treated purely on the basis of the serum B12 test results as it is known that the test is not a good enough guide and that delaying treatment on the basis of tests can result in irreversible nerve damage. Look at the pinned posts and try and get your GP to treat you in relation to these guidelines.

The pinned posts contain a lot of other useful information to try and use in getting a diagnosis and the PAS website also has an area particularly aimed at helping medics to learn more about the condition

pernicious-anaemia-society....

Different regions within the UK do have different protocols but the job and professional duty of a doctor is to use their professional judgement, not blindly follow protocols. I'd also recommend joining the PAS as a member (note: I'm a member but I'm not an employee and I certainly don't get commission :)). They have a wealth of resources and offer various levels of support - which can include getting support in getting your GP to really understand what B12 deficiency is and how it works and needs to be treated.