Is it at all possible to have some form of anaemia, even though blood results dont support that or are inconclusive? I havent felt well now for 4 years and have driven myself to distraction trying to pin down what is going on-convinced myself I was hypothyroid but Im not. Ive just had blood tests again and they are my usual pattern-
Vit D was 81 (50-375)
B12-411 (197-771-ng/L)
Folate-9.1ug/l (3.8-26.8)
Ferritin-58.99 ug/l (10-120)
Vit D is better than usual-normally its insufficient or deficient but Ive taken oral spray now for a year. Folate is always about 9. In the full blood count the only thing that came up as abnormal was an MCH count of 32.3 which registered as slightly high and which Ive had before, but wasn't seen as indicating anything. I have had constant tingling in my hands and feet now for 2 years. My normal tinnitus has worsened considerably in 2 years. I cannot cope with the cold at all, my hands are so cold I cant do anything unless I put them in hot water or sit with a hot water bottle-so Im often really clumsy. I frequently get electric shocks in my neck if I turn my head. I feel tired out of all proportion to any exercise. Often have dizzy spells and a few attacks of vertigo. Feel like Ive had sinus type eyes/congestion/headaches now for a year. This winter has been horrible and has really got me down, but these blood tests dont show anything that the GP will action. I would value any thoughts-thank you.
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ValDee88
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I can see your folate result is below the middle of the range. Have you asked your GP if you would benefit from taking a folate supplement with RDA (recommended daily amount) in it? Local pharmacist might be worth talking to about this.
There are other iron tests besides ferritin. Might be worth asking GP for a set of iron tests.
You might want to look into Functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.
MMA, Homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.
Has your GP got a list of all your symptoms?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
I used PAS list below and added extra symptoms at bottom.
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neuro symptoms
You mention various neurological symptoms eg
tinnitus
electric shocks (Search online for "LHermitte's sign B12 deficiency")
clumsiness
dizziness
vertigo
I suspect you probably have others.
Here's some of the ones I had
tingling, pins and needles, limb jerks (periodic limb movements), eyelid flickering, migraine, tremors, dropping things, problems with proprioception ( awareness of where body is in space), incontinence, twitching muscles, difficulty getting right word out (nominal aphasia), memory problems, brain fog etc....... there are many more in the symptoms lists I posted.
Worth looking a bit more into proprioception as I always struggle to explain this one.
If your balance is worse when eyes are closed, it's dark or your view is blocked that may indicate proprioception problems. For example I used to fall off the pavement if someone walked directly towards me and blocked my view of what was ahead.
If neuro symptoms are present in someone with B12 deficiency, I would expect GP to use the following treatment pattern.
A B12 loading injection every other day for as long as symptoms continue to get better then a maintenance B12 injection every 2 months.
The GP can find this treatment pattern in their BNF (British National Formulary) book Chapter 9 section 1.2 or in online BNF entry for hydroxocobalamin.
If you have a PA diagnosis or suspect PA, worth joining PAS.
PAS membership is separate to membership of this forum.
On March 6th 2024, a new B12 deficiency guideline was published in UK which your GP may not be aware of. I suggest you have a look at it when you're able to.
Vitamin B12 deficiency in over 16s: diagnosis and management
NICE is the National Institute of Health and Care Excellence.
The new guideline is being discussed in other threads on the forum at this moment.
I think it's also worth trying to track down the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland as your GP is likely to look at these for guidance on treatment/diagnosis
These local B12 deficiency guidelines will probably be reviewed soon due to new NICE guideline so they may change. Keep an eye on them if you have the time as changes don't always mean better treatment.
B12info.com
Website is run by a UK campaigner on B12 deficiency issues and has lots of useful information.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
It's vital to get adequate treatment. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord may be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
If GP dismisses possibility of SACD due to normal range serum B12 level, may be worth showing them article mentioned below.
A search online for "Turner SACD Functional B12 deficiency" will show an article where a patient developed spinal damage due to B12 deficiency despite having normal serum B12 levels.
Thread about Patient Safety, has links for those in UK having difficult health experiences with B12 deficiency.
Some UK forum members turn to treating themselves if NHS treatment is not enough. Some get extra injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort try self injection (SI). There is a pinned post that mentions SI.
I'm not medically trained.
I'd usually write more for a new forum member but suffering RSI at moment and can't write so much.
I saw my doctor today and she said I have some anemia but it's not bad. She said my B12 levels have gone up and my homosystene level has gone way down and all of the other bloodwork came back to her satisfaction and not to worry about anything.
Gosh ValDee88, your experiences are exactly the same as mine at the moment so I can totally empathise, it is so difficult to deal with. I am hypothyroid and thought that my increase in symptoms meant that my thyroid had worsened but with the help and guidance of this forum and also Thyroid UK I now believe that I have a B12 problem. My serum B12 was 349 (GP) and active 45 (Medicheck) and fortunately a GP has ordered a MMA test which I will have in about 10 days. Thank you Sleepybunny for the invaluable information.
This flowchart suggests that doctors should think about continuing B12 treatment in people whose symptoms have improved even if results of secondary tests such as MMA, homocysteine and Active B12 (holotranscobalamin) are negative or normal range. See bottom right of flowhchart.
"Is it at all possible to have some form of anaemia, even though blood results dont support that or are inconclusive?"
B12 deficiency and Folate deficiency can lead to red blood cells that are larger than normal (macrocytosis)
Iron deficiency can lead to red blood cells that are smaller than normal (microcytosis).
A person who has B12 deficiency(and/or folate deficiency) with iron deficiency may appear to have normal sized red blood cells on the Full Blood Count (FBC) as the effects of the iron deficiency can mask effects of the B12 deficiency (and/or folate deficiency).
You may want to look into macrocytic anaemia and microcytic anaemia.
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