Testing B12 and Pernicious Anaemia

[lnjdevereux]

Hi there,

Pretty sure this is my first post but I've been lurking and reading for a couple of months... I've managed to convince my dr to retest my B12 levels as they were low last time. I can see my results now but I don't have a consult with my dr until next week. Historically she has not been understanding of my thyroid disease or the B12 levels so I just wanted to know if anyone could look at these panels and tell me what I need to push for (if anything at all) - injections, tablets, nothing, etc. I don't want to be fobbed off if I can help it!

Thanks!

[KimberinUS]

Hi there,

If these are all of the test results then your doctor did not test b12. This test shows your mcv is getting high and folate and/or b12 can cause high mcv. Research shows that appox 25% of people with a b12 deficiency will not get an out of range mcv. Mine never got above 95. The reason for this can be because if either nutrient, b12 or folate, is high it can "mask" the other's deficiency. Meaning if b12 low but folate high it can give a "normal" or in range mcv test.

Please ask your doctor why he/she did not test b12 as agreed to.

This test was to fob you off and say all is normal.

If you have prior similar test and your mcv was lower than it is now, i would demand b12 and folate testing at your appointment.

[lnjdevereux in reply to KimberinUS]

Hi, B12 and folate are at the top of the list folate mid range and b12 below.

[KimberinUS in reply to lnjdevereux]

Sorry, thanks for pointing that out. I did not see them. Yes your b12 is low. Ask for b12 loading injections.

If you have neurological symptoms your loading doses should be longer than the usual 2 weeks. Until no further improvement, then ever 2 months.

Prior to injections ask for intrensic factor testing, as testing after injections can skew the results to an already unreliable test.

[lnjdevereux in reply to KimberinUS]

It's no problem, I had to cut the title of that lot of tests off to get the whole panel into the viewing pane so I can see why you missed them

I don't think I have any of the neurological symptoms, but I have hashimoto's disease so there is a lot of crossover in symptoms and it's hard for me to determine which ones are caused by which issue!

[Gambit62 Administrator]

B12 below range

MCH above range - indicating that your red blood cells are rounder than they should be - this is a classic symptom of B12 deficiency

Esinophil probably indicates some sort of infection - frequent infections are another classic symptom of b12 deficiency.

If your Thyroid problem is autoimmune (hashimotos) then there is a much increased probability of developing PA, the most common form of B12 deficiency. Even leaving this aside there are a number of ways in which hypothyroidism can cause absorption problems - though the first mineral/vitamin to be affected is usually iron.

A mix of iron deficiency and B12 deficiency can make interpreting blood tests very difficult as iron deficiency tends towards smaller red blood cells whereas B12 deficiency tends towards larger and rounder red blood cells. However, that would tend to mean that RDW (red blood cell distribution width) would be raised which doesn't appear to be the case in the above.

This is a link to the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders

onlinelibrary.wiley.com/doi...

your GP can access them through the BNF assuming you are UK based - if not different standard will apply.

list of symptoms

pernicious-anaemia-society....

If you have neurological symptoms you should be pushing for treatment to start asap

and the correct treatment in UK would be loading shots 3xweekly until symptoms stop improving followed by maintenance every 2 months, as opposed to the less aggressive regime where there isn't neurological involvement.

[lnjdevereux in reply to Gambit62]

Thank you. Yes you are correct, I have hashimoto's. I was in the midst of an antibody flare up at my last thyroid panel last month so it may still be ongoing. As a result I am unsure if my carpal tunnel type symptoms / loss of strength in my right hand, is a thyroid issue or a b12 issue.

Think the infection might be a cold I came out with yesterday morning (bloods were taken on Monday).

So are you saying that, either way, I will require injections if the symptoms are not neurological? Or will the sublingual spray I bought a few months ago suffice? I used this for a week in February but then was told to stop supplementing until the tests had confirmed a deficiency in case it skewed my results into the normal range!

Sorry for all the questions

[Gambit62 Administrator in reply to lnjdevereux]

if you are in the uk you should be on injections - it is just that the regime is more aggressive if you have neurological symptoms.

if you don't have neurological symptoms the regime is 3xweekly for 2 weeks then 3 monthly maintenance ... though I don't think I've really come across anyone that actually managed to cope on that - a reflection not just on this forum but also on those I know in real life with B12 absorption problems

[lnjdevereux in reply to Gambit62]

Thanks - this is really helpful. I know what to aim for when speaking to her on Monday now. I won't leave without an appointment for injections!

[Janeylou69 in reply to Gambit62]

Hi gambit just wanted to ask you , with pa can you still lose weight if you don’t have the diorreah coz it feels like I’m losing weight every time I go to the toilet but it’s normal thanks .

[Gambit62 Administrator in reply to Janeylou69]

you will loose weight if you aren't taking in enough calories.

Diarrhoea won't necessarily result in weight loss.

Not having the right sort of calories or having problems extracting calories from the food you are taking will result in weight loss.

Suggest you speak to your GP

[Janeylou69 in reply to Gambit62]

Ok thanks gambit I’m undergoing tests at the moment, having endoscopy and colonoscopy next week , which I’m very worried about what will come of it x

[Gambit62 Administrator in reply to Janeylou69]

try not to worry though I know that is hard - even if it turns out to be a nasty there will still be options but wait until you know more.

[Janeylou69 in reply to Gambit62]

Yes I’m very worried about it coz the weight is coming off quickly ,it did slow down but in the last 2 weeks it’s come off quickly and I’m 8 weeks pregnant but my doctor thinks that coz of my health issues the baby is taking it all and that’s why I’m losing weight quickly well I hope so , I try not to worry but it creeps back up on me again and I sit there crying coz I just want to know what’s wrong with me ,I’ve waited months and it’s been a struggle to deal with it everyday because my family think it’s all in my head and that I’m worrying too much .

[lnjdevereux]

Thank you. Yes you are correct, I have hashimoto's. I was in the midst of an antibody flare up at my last thyroid panel last month so it may still be ongoing. As a result I am unsure if my carpal tunnel type symptoms / loss of strength in my right hand, is a thyroid issue or a b12 issue.

Think the infection might be a cold I came out with yesterday morning (bloods were taken on Monday).

So are you saying that, either way, I will require injections if the symptoms are not neurological? Or will the sublingual spray I bought a few months ago suffice? I used this for a week in February but then was told to stop supplementing until the tests had confirmed a deficiency in case it skewed my results into the normal range!

Sorry for all the questions

[Foggyme Administrator in reply to lnjdevereux]

Hi Injdevereux. The answer is yes, you will require B12 injections even if you don't have neurological symptoms.

Sometimes people are surprised at exactly what constitutes neurolgical symptoms - here's information about some of the common ones (just so,you can check):

Balance Problems

General unsteadiness including bumping into walls (the ‘shoulder bumps), and difficulty putting on underwear (the knicker dance), and having to hold on to something whilst showering. Inability to stand up straight with closed eyes or when it is dark

Dizziness/Feeling Faint

Numbness/Tingling/Pins and Needles

These are usually experienced in the feet and hands though they can appear anywhere. Some patients also experience a crawling sensation in their face ‘spider crawling’.

Burning Legs and/or Feet

Known as Grierson-Gopalan Syndrome.

Neuropathic Pain/Fibromyalgia

Usually only on one side of the body.

Vertigo

The inability to cope with heights and wide open spaces. Patients will need a visual reference to compensate with what is probably damage to the brain’s balance mechanism. Often this will mean the patient will have to look at the floor while walking.

Tinnitus

This is extremely common in patients with PA and is probably due to slight nerve damage to the brain.

Sensory Impairment

Loss of smell, taste, touch

[extracted from the symptoms list in the second PAS pinned post to the right of this page - or at the bottom if using a mobile phone]. Here's a link to that page in case you want more information about other symptoms:

healthunlocked.com/pasoc/po...

If you do not have neurolgical symptoms, the treatment regime is 6 x loading doses given on alternate days and then an injections every three months.

If you do have neurolgical symptoms, after the six loading doses injections should continue on every other day until no further improvement - sometimes for many months. And then injections every eight weeks.

Having the right treatment regime is important to effect the best chance of recovery...and it's vitally important where neurolgical symptoms are concerned (under-treated B12 deficiency can lead to potentially irreversible neurological damage).

NOTE: your serum B12 level is very low - and just in case your GP recommends it, treatment with B12 tablets is not recommended (unless the cause is know to be dietary related). We can give more information about that if your GP suggests this.

Also note - the sublingual spray you took for a month in February is likely to have raised your B12 level, so there's a distinct possibility that it may have been lower than the current recorded level.

I do wonder why your GP did not treat you when your previous serum B12 test showed a deficiency. Bit naughty.

Also worth reading all the PAS pinned posts - lots of information there to help you understand what (and not what) your GP should be doing for you (including not re-testing B12 once treatment has started - meaningless since levels will be high because of injections and no indicator as to efficacy of treatment - at this stage, GP should look at symptoms, not serum B12 blood test results.

It also worth noting that the eight week or three month maintenance regime is not frequent enough for some people to get and stay well. If symptoms return before the next injection is due and then are relieved by the next injection, this is an indicator that more frequent injections are needed. GP's who are well-informed about B12 deficiency do not have a problem prescribing more frequent injections if needed - but they are a rare minority so...keep this in mind and post again if you need more help if this happens to you and your GP is reluctant to help with more frequent injections.

Good luck

👍

P.s. Carpel tunnel syndrome is a know symptom of B12 deficiency, but as you say, position complicated by the cross-over with hypothyroid symptoms.

[lnjdevereux in reply to Foggyme]

Thank you, this is exactly the info I need. Now I know what to expect on Monday and if it isn't offered I have some information to back me up.

The B12 came back low last time and was flagged as abnormal but, as is typical these days, I only had a telephone consult so the time allocated was short and she didn't even address it. I brought it up in my next face to face consult and said i was concerned as my mum also has a deficiency and needs injections. It's only because I've pressed about it that I've had this B12 test and FBC - they still didn't test my IF though.

[Sleepybunny]

Hi,

I think raised eosinophils can sometimes be a sign of parasitic infection eg fish tapeworm.

Has GP excluded possibility of this?

I am not medically trained.

[lnjdevereux in reply to Sleepybunny]

Hi,

Eosinophils are low rather than raised...

"An abnormally low eosinophil count can be the result of intoxication from alcohol or excessive production of cortisol, like in Cushing’s disease. Cortisol is a hormone naturally produced by the body. Low eosinophil counts may also be due to the time of day. Under normal conditions, eosinophil counts are lowest in the morning and highest in the evening.

Unless alcohol abuse or Cushing’s disease is suspected, low levels of eosinophils are not usually of concern unless other white cell counts are also abnormally low. If all white cells counts are low, this can signal a problem with the bone marrow."

So I think I'm parasite free

[lnjdevereux]

Update:

I picked up a script for 5 ampoules of Hydroxocobalamin this morning and my first loading doses are booked for tomorrow, Thursday and Tuesday!

Dr said she asked for the test for antibodies which shows if i am not absorbing b12 and it came back negative but my blood cells were becoming enlarged and close to anaemic.

V. apprehensive as I hate needles but happy to be getting seen to properly.