I had blood test end of August this year due to feeling unwell with fatigue, pallor and faintness , exercise intolerance.
Previously fit and regular runner. I was also experiencing headaches, mouth ulcers and visual disturbance in left eye which optician told me was most likely optical migraine after I went and had eye test and scan. Pins and needles in hands and feet and moments of balance loss. I did not realise at the time that symptoms were indicative of b12 deficiency. I assumed I was working to hard , stressed and pre menapausal as I am 49 (despite regular periods).
Test came back without extact number but b12 less than 125. Not anemic but low ferritin.
had 2 week loading doses in beginning of September but still felt awful , signed off work for a month . GP put me on iron tablets 3 times a day which has reduced my “pallor” but still exhausted , pins and needles and get out of breath on any mild exertion.
GP said likely to be linked to hormones and want to start me on HRT . I tested negative for IF and they were not going to give me any more b12 injections. I spoke to GP and pointed out test not reliable and that I eat dairy and fish and did not think it was dietary so they reluctantly agreed I could have another injection next month.
However insisted on retested me last week(I was also tested for oestradol levels - which were normal ). I was also tested for CA 125 which has come back at 54 so raised - I am being retested for this again next week . So another worry!
My B12 was unsurprising “normal” at 671. However I was wondering if this should maybe have been higher given that I only finished my loading doses ?
any thoughts advice appreciated as to how I should approach with GP as I am scared that Oral b12 may not be effective for me . I have bought some sublingual 1000 mg but have not taken them yet as I knew they would be retesting me and I did not want to skew any results.
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Dartyfact
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You mention several symptoms that would be considered as neurological eg
migraine
pins and needles
balance loss.
I would expect you to be on the second treatment pattern for those with "neurological involvement" which is
a B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every two months
There is no set time limit in BNF as to how long the every other day loading injections can continue for if neuro symptoms present, could be weeks even months of them.
I would definitely expect you to have more than two weeks of loading injections.
Another link that explains treatment for B12 deficiency in UK
Has your GP got a list of all your symptoms especially every neurological symptoms and definitely any that affect your spinal area? See symptoms lists below.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Link above has letter templates covering a variety of situations linked to B12 deficiency.
Point 1 is about being under treated for B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Point 5 mentions Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the patient develops symptoms of B12 deficiency.
Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages).
Local B12 deficiency guidelines
I urge UK forum members to track down the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
CCGs (Clinical Commissioning Groups) were replaced by ICBs in July 2022.
If you can't find your local B12 deficiency guidelines online, you could submit a FOI (Freedom of Information) request to ICB or Health Board website asking which B12 deficiency guidelines are being used locally and for a link to or a copy of the guidelines.
Read blog post below if you want to know why I urge UK forum members to do this.
Do you have recent results for folate, ferritin (and other iron tests) and Vitamin D?
Forum members often report deficiencies in these as well as B12.
Vital that if a patient has both B12 and folate deficiency, both are treated.
B12 treatment would be started first.
Treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.
Full blood count (FBC) results can also be helpful.
Low B12 (and low folate) may lead to enlarged red blood cells (macrocytosis).
Low iron may lead to smaller red blood cells (microcytosis).
A person with B12 deficiency (and/or folate defic) with iron deficiency may appear to have normal sized cells on the Full Blood Count tests as the effects of the iron deficiency can mask the effects of the B12 (and/or folate) deficiency.
Some forum members have met doctors and other health professionals who have misconceptions about B12 deficiency.
I think it's useful to know some of the common wrong ideas in case you meet a health professional who has some of them....I met both GPs and specialists who had misconceptions.
Here' some articles that you could pass on to any ignorant ones you meet.
B12 article from Mayo Clinic in US
It's detailed and aimed at researchers and health professionals.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
I hope you get the treatment you need and that your doctors are kind and good listeners.
Some of us on this forum don't get the treatment we need.
Some UK forum members who can't manage on NHS levels of treatment, turn to treating themselves. I see this as a last resort but I had to when NHS refused to treat me.
Some try using high dose oral tablets but this doesn't work for some people...it doesn't work for me.
Others have used nasal drops, some get extra injections from private GPs or beauty salons and some turn to self injection.
There are moves across UK to put more people onto high dose oral tablets as an alternative to B12 injections.
Gloucestershire's treatment algorithm already appears to put most people onto high dose oral tablets.
Keep an eye on your local B12 deficiency guidelines, these can get reviewed at short notice.
Challenging GPs
Sometimes it's necessary to challenge GPs especially if treatment is inadequate and some of them don't respond well to this.
Have a look at this thread I started about Patient Safety which has lots of useful links for people who've had bad experiences.
I think being treated inadequately is a patient safety issue.
I was tested for celiacs also and FBC normal, iron normal 15 but ferritin low at 23 indicating reduced stores. Liver function test normal also
Vitamin D normal - 65
I was not told my ferritin was low and advised my iron was a bit low but normal and not anemic so up to me if I wanted supplements.
When I kept going pale and faint after loading doses GP put me on ferris sulphate 3 times a day which seemed to initially help a bit but then levelled off and I’m feeling more tired again and going pale. I did note that my stools went black instantly ( which is common I know) but I am having watery black stools and not convinced I’m absorbing it properly?
I will speak to GP again next week and push again to have it confirmed they will reinstate b12 injections as per NICE guidelines. I will also see if I can find what local policy is. I am in England.
I have informed them of all my symptoms following having loading doses and was told I should be feeling better now and that it is likely menapausal symptoms.
Large irons doses taken every day counterintuitively reduce iron absorption. Research has found that lower doses 20-80mg taken on alternate days have a better effect in terms of increasing iron levels. Iron Bisglycinate is easiest on the stomach and has good absorption.
Were you told they were normal or did you check your results yourself?
I learnt from bitter experience to always check my own results even if told everything was normal/no action. I found abnormal and borderline results when I got hold of my blood test results after being told it was all normal.
Look for trends in the results. Results that are increasing or decreasing over time may be significant even if still within normal range.
Ferrous fumarate may be better tolerated. .I also take Spartans snd solgar gentle iron alternating .
Ferritin took Mr zcyesr to stabilise at around 45-58 on maintenence iron.
Don't get fobbed off with menopausal symtoms.
I was post menopausal and symptoms changed !!
It was my trigger for absorbtion problems though
Are you in the UK? I had my B12 tested at end of August. It was low end normal at 189 but it showed that I had lost about 95% of the increase in level I had 2.5 years ago after a year of injections. GP agreed to let me take an oral b12 supplement then re-test to see if I am absorbing. I had the test at end of October but the lab didn't process it as it was less than the guidelines of 3-6 months between tests but it seems your test was also under 3 months yet was processed? Is that the case? I'm wondering if this is a local thing rather than a national thing!
B12 level post injection is worthless. It only proves you've had the injections. The oral B12 won't harm you. The negative IFAb proves nothing either. More to follow!
"I will also see if I can find what local policy is."
If you struggle to find the local policy and don't mind people knowing your ICB (Integrated care Board) someone on the forum might be able to help you find it.
I do think people should be careful with their privacy.
1) An online search with "name of ICB B12 deficiency guidelines".
If this does not work, substitute the word "guidelines" with "management" or "treatment algorithm".
Try using the name of the previous CCG when searching as well. It's likely that ICBs will have taken on the clinical guidelines of the CCG they replaced.
2) Submit a FOI (Freedom of Information) request to ICB website, asking which B12 deficiency guidelines they use locally and for a link to or copy of the guidelines.
Put Freedom of Information in search box on ICB website which should show a page explaining FOI process.
It's also possible to submit a FOI request to GP surgery website...might irritate them.
Threads from Health Unlocked can appear on NHS website.
If you want to change the setting of your post to a more private setting where only visitors to this forum can see it....
1) Go to original post, click More then click Edit.
2) Scroll down post to Share. Click Community Only then click Post.
If this has worked, the next time you log in to this thread you should see the word private in the webpage address.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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