This is my first post on HealthUnlocked, I had my first B12 injection 3 months ago due to low B12, how many would I need to get rid of all my symptoms please? I also have underactive thyroid but these results I have been told are normal. List of symptoms below
Hard stool
Memory loss
Pins and needles
Tiredness
Blood rushes from standing from sitting or kneeling
Irritability
Rumbling in ears/head
Tinnitus
Breathlessness
Clumsiness
Weight gain
Muscle pains and cramps
Heavy periods
Hair loss
Anxiety
Serum B12 156 (180 - 900 pg/L)
Thankyou
Written by
Violet34
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Firstly you serum B12 @156 (180 - 900 pg/L is very low. Presumably this was measured before the injection you had three months ago?
When are you scheduled to have your next injection?
Your thyroid problem may put you at risk of developing a B12 deficiency
What is your diet like? Are you able to eat meat, fish, seafood, eggs, poultry and dairy produce as it is from these foods that we obtain B12 naturally?
Was your Folate level tested?
Have the symptoms you listed improved after the initial injection and then got worse?
I am not a medically trained person but if you can answer some or all of the questions there are others on here who will be able to give you good advice
Thankyou I am in uk, I was scheduled to have the next injection in August but I haven't had it yet and B12 was measured before injection was given.
Diet is usually pretty good and I eat fish and eggs and dairy etc daily. Folate is 2.3 (2.5 - 19.5 ug/L) and GP said just under range so nothing to worry about.
It is also important that your Folate level is improved as this is essential to process the B12.
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 and your B12 and Folate levels are both "bumping along the bottom" of the ranges.
Your doctor should be treating your symptoms not just looking at the computer screen.
Make a list of your neurological symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below.
Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I'm not a medically trained person but I've had P.A. (a form of B12 deficiency) for over 45 years and I wish you well.
where are you based and did you only have one B12 shot 3 months ago?
treatment for B12 deficiency/absorption problems varies from country to country but generally there should be some sort of loading regime - involving a number of more frequent shots and then on to a maintenance regime unless the original absorption problem was treatable (eg h pylori infection).
I think you probably need to write to your GP and then follow up with an appointment (accompanied by a friend), drawing their attention to current guidelines and asking why your treatment does not appear to be in line with that guidance. Keep it polite and focus on asking for information rather than making demands.
They can access the BCSH guidelines through the BNF but they are also available here
Current clinical practice within the UK is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn.... Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternate day therapy after 3 weeks of treatment.
You may also want to think about formally joining the PAS and contacting them for support if your GP doesn't respond well
you should also query the response on folate treatment - whilst it is true that you may not have signs of megaloblastic anaemia your result is in the deficient range and unless your diet is deficient in folate, that indicates that you have an absorption problem so would need to supplement.
Treatment of folate deficiency
The dose of folic acid necessary for treatment depends on the cause of the deficiency. A meta-analysis showed that daily doses of 0·8 mg or more of folic acid are typically required to achieve the maximal reduction in plasma homocysteine concentrations produced by folic acid supplementation (Homocysteine Lowering Trialists’ Collaboration, 2005). Doses of 0·2 and 0·4 mg are associated with 60% and 90% respectively, of this maximal effect (Homocysteine Lowering Trialists’ Collaboration, 2005). However, more recently, a dose of 0·2 mg/d over at least 6 months was shown to have optimal effects (Tighe et al, 2011).
Folate deficient megaloblastic anaemia (due to dietary insufficiency, pregnancy or antiepileptics): 5 mg of folic acid daily is taken for 4 months, except in pregnancy where it is continued until term, and up to 15 mg daily for 4 months is suggested in malabsorptive states.
Chronic haemolytic states and renal dialysis: the prophylactic dose suggested is 5 mg daily to weekly, depending on the diet and rate of haemolysis.
Pregnancy: the prophylactic dose suggested is 200–500 μg daily.
When the Thyroid is unable to produce adequate hormones other things suffer in the body - as you have demonstrated with the low B12. We need good stomach acid levels to digest food adequately and when the thyroid is low then stomach acid can be low along with around 300 other symptoms
Many symptoms of B12 deficiency and low thyroid do over lap as your list of symptoms suggests. The rush of blood on standing - POTS - may suggest some adrenal issues too.
Do you have copies of the Thyroid results with ranges ? Always good to obtain copies of test results so you can monitor your own health and pick up on things that are missed at GP level. Being told you are fine by your GP is an opinion rather than a result . It is possible only the TSH was tested - which tells you so very little about the thyroid as it is a Pituitary hormone. The tests required are TSH - FT4 - FT3 and the Thyroid anti-bodies TPO & Tg. Also results required for Folate - Ferritin - VitD.
Are you taking any other medications ? When you have your thyroid results you can post them on Thyroid UK here on HU for advice and suggestions ....
What does your GP think is causing your B12 deficiency?
If your diet is good with plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs then it becomes more likely that you could have an absorption problem.
Have you had an Intrinsic Factor Antibody test?
This can help to diagnose PA (Pernicious Anaemia). The IFA test is not always reliable and it is still possible to have PA even if IFA result is negative/normal range.
Do you get copies of all your blood test results? In relation to B12, I look at B12, folate, ferritin and full blood count.
Outlines when PA and Antibody Negative PA should be diagnosed in UK. Makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment. whether B12 is low or within range.
Outlines recommended B12 treatment in UK. All UK GPs will have access to BNF, probably a copy sitting on their desk. Also possible to get own copy from good bookshop or popular internet retailer.
Standard UK treatment for B12 deficiency without neuro symptoms is 6 loading injections over 2 weeks then it's an injection every 3 months.
UK treatment for B12 deficiency where there are neuro symptoms is a loading injection every other day for as long as symptoms continue to get better (this could mean loading injections for weeks even months) then it's an injection every 2 months.
UK b12 treatment info is also in BSH Cobalamin and Folate Guidelines.
"have only had one B12 shot three months ago"
I am puzzled as to why you have only had one shot rather than a set of loading injections.
Do you have any neuro symptoms eg tinnitus, tingling, pins and needles, memory problems, balance issues plus other neuro symptoms?
B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.
UK B12 blogs
There may be stories relevant to you on Martyn Hooper's blog about PA and B12 issues.
Have you got paper copies of your recent blood tests? I learnt to get copies of all my blood tests after being told everything was normal then finding abnormal/borderline results on the copies.
See "Access to Medical Records"
If you look a copy of b12 result there may be a note from the laboratory that carried out the test that an Intrinsic Factor Antibody test should be ordered due to low result.
If you suspect PA is a possibility it may be worth joining PAS. If you have other auto-immune conditions the chances of developing another one increases.
PAS can offer support and info about PA. In some cases they can intervene on behalf of PAS members.
PAS members can access details aboutPAS support groups. There are several in UK.
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