Hi I am a newbie. I am 34 years old and I receive B12 injections for functional B12 deficiency. These were started in May 2017 and I get the injections every 3 months.
So my symptoms are currently causing me concern - joint aches and pains, fuzzy head, slow thoughts, weight loss, dizziness, heavy periods, dry skin, loss of appetite, cold feet and hands, low motivation and unbelievable tiredness. I know it's not my vitamin B12, it's quite good at the moment so any other advice would be ideal. Maybe my folate? Ferritin was sorted some time ago with an infusion. Thank you.
Dec-2018
FERRITIN 324 (15 - 150)
FOLATE 4.1 (2.5 - 19.5)
VITAMIN B12 1443 (190 - 900)
Written by
J_Louise
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I think more bloods needed too. Vit d folaye thyroid. Inflammatory markers Your folate low and ferritin very high. What has your doctor said? You can get more frequent injections. Usually go by symptoms. B13 isn't usually tested whist on injections. Are you on supplements. I think a review with your doctor. Book a double appointment so not rushed. Hope you get something to work with and rectify
Ferritin was corrected with an iron infusion last year. Inflammatory markers always come back low. Only thing that was of concern was that my cholesterol was high.
I take 100mcg levothyroxine, 5mg folic acid and 800iu vit D.
Sadly Drs don't understand this condition and if you have a functional B12 deficiency then you will have to have much more frequent jabs and your B12 level will need to be off the scale (>2000) to feel OK. You will also need to supplement with folic acid and other things.
For more information about functional B12 deficiency please see the excellent replies by Gambit62 - go to her profile by double clicking on her name and look under the heading "replies".
You may have to read down through the list to find all you are looking for but it is well worth it.
As you increase your frequency of jabs you will get an improvement in your symptoms and it is important that you have as many jabs as you need until the symptoms stop improving. You will need to supplement with folic acid but it is important to get your B12 right for you first as it is the most important and folate (as folic acid) can mask the symptoms of B12.
Clivealive's replies are very helpful on folate and Foggyme's will have pertinent information for you too but there are lots of other great contributors here as well. Sleepybunny provides lots of information on how to try to get more jabs from your Dr but if they won't give them to you then you can do like many of us do and self inject, with help from replies by Wedgewood, beginner1, etc.
Many people find they benefit from a broad spectrum multivitamin and mineral supplement as well with extra potassium and magnesium from their diet. An inexpensive supermarket A-Z multivitamin and mineral supplement is as good as any and better balanced than many expensive branded ones.
I will try to give you links to the people I mentioned in replies below.
if you are receiving injections for functional B12 deficiency then serum B12 levels are irrelevant.
Functional B12 deficiency is to do with not enough B12 being available in your cells and there is no obvious relationship to theB12 levels in your Blood. The only way to really manage B12 deficiency in this case is to go by symptoms.
Your ferritin is very high - suggest that you speak to your GP and ask for a full iron panel
Hi J Louise. I have some similar symptoms to you and more B12 does not help so I’m convinced it is not the problem. I had a comprehensive digestive stool analysis done and found several overgrown pathogenic bacteria and parasites which goes along with B12 deficiency which is a gastric disorder. I have been treating this with herbal anti microbial and diet changes and on retesting I am able to see this has improved although not entirely where it needs to be. There’s emerging research on the role of pathogenic bacteria and the interplay with chronic disease and autoimmunity and further research is needed to define a causal link. Joint aches is thought to be one of the things pathogenic bacteria can cause. I have seen enough of the evidence in treating my own conditions to continue with the protocol but we are all different. That said your ferritin looks quite high and you need to check your serum iron, transferrin saturation and TIBC to know if you have iron overload. The symptoms of that are the same for iron deficiency and include joint aches and pains. Let us know how you get on.
"I receive B12 injections for functional B12 deficiency"
How often are you getting your B12 injections?
How many loading jabs did you get at start of treatment?
UK recommended b12 treatment for B12 deficiency without neuro symptoms is...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months.
UK recommended B12 treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better (could mean every other day jabs for weeks even months) then a jab every 2 months.
I don't know if there is a separate treatment protocol for Functional B12 deficiency.
Do you have or did you have neuro symptoms eg tingling, pins and needles, numbness, tinnitus, restless legs syndrome, tremors etc?
Fuzzy head, dizziness, slow thoughts would usually be considered neurological.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
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Can B12 deficiency symptoms relapse after ongoing treatment? 
Symptoms returning. What's next?
Ongoing gastric problems
Weird symptoms- B12 deficiency? 
