Hi there, Had the results of my blood tests back my first blood test showed B12 at 93
so here are my latest
Folate 9.6 ug/L 3.1 - 19.9
B12 >1500 ng/L 180 -914
WBC 8.2 4.0 - 110
Hb 140 g/L 130 -180
Pit 249 150 -450
MCV93.1 fl 77 - 101
RBC 4.40 4.5 - 6.0
Hct 0.410 0.40 - 0.52
MCH 31.8 pg 27 -31
RDW 12.7 % 10.9 -15.1
Neut 5.2 2.0 - 7.0
Lymph 1.9 1.0 -3.0
Monos 0.6 0.2 - 0.5
Baso 0.1 0.0 -0.1
VITAMIN D
25 OH Vitamin D (total) 340 mmol/L
Doctor has put me on Vitamin -D3 800lu caps
I asked why I had no improvement in symptoms so she is sending me for a chest X-at and a heart scan along with a hearing test so now after 8 months off work at least I feel she is trying to find out what is a wrong with me. She also gave me a sick note which means I can now go on ESA again instead of having to sign on and search for jobs I know I wont be able to do. I've been self employed for the majority of my working life and I wouldn't give myself a job.
does anything stand out from my blood tests that she may be missing.
with thanks Paul F
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PaulFoster
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Some symptoms PaulFoster take many months or even years before they completely "disappear" - if they ever do, depending on the amount of damage done.
I've had P.A. for 45 years and I still have "dead" thighs to this day and get a return of other neurological symptoms in the run up to my next scheduled injection.
I'm not a medically qualified person but oddly your "high" MCH seems to indicate a B12/folate deficiency??!!
Hopefully there are others on here who will be able to explain more lucidly than I can.
Hi PaulFoster. Improvement to symptoms happens at different rates for different people so it not easy to say how long it will be before you start to feel any better. And neurological recovery takes place more slowly, since the mylin sheath takes longer to repair.
Your B12 level was very very low and you'd been ill for some time.
First - I hope that your GP has you one the neurological regime now that you have finished loading doses (every other day until no further improvement)? It's essential that you stay on this regime because it's likely that a lot of repair needs to take place.
Your GP may assume that you don't need it now your levels of B12 have raosed. Wrong.
Once treatment has started B12 levels are no indicator of the efficacy of treatment - they simply reflect the fact that you have been injected with B12. So you should keep having alternate day injections - for up to two years - until you are sure that there is no further improvement.
There is no question whatsoever about whether you had B12 deficiency. You most certainly did - and still do. A level of 93 counts as one of the lowest I've seen and it's likely that it will take some time to start to recover.
Your last blood results showed iron deficiency anaemia and your ferritin level was very low (should be at least 80 - best at 100 - 110 - to get optimum effect from injections). Did your GP prescribe a course of iron supplements?
And your folate level could do,with being a bit higher. And now that you're having injections, folate will be used more quickly. Many people with B12 deficient take 400mcg (also called ug) of folate daily, some need slightly more and take 800mcg, and some need prescription strength doses (5mg) daily. Perhaps your GP could keep an eye on this, especially as you will be (should be) having alternate day injections.
Also - and this will be important because of your cardiac history - your GP should keep an eye o your potassium levels. Potassium gets used up quickly when on the intensive B12 injection regieme - your GP may like to check your potassium levels, certainly after the loading doses and thereafter on a regular basis.
Before I go on to blood results, just wondering...did your GP test you for anti-IF antibodies (the test for pernicious anaemia)? Your B12 was so low that she should want to find out why - so that's the first thing she should do. (The test is not always reliable - positive is always positve, negative is only 50% accurate) but that doesn't mean it should not be done).
You've been either low or deficient in ferritin, folate and vitamin D - sounds like ab absorption problem (the most common cause of B12 deficency). Has she considered referral to a gastroenterologist?
Has your GP tested you for heliobactor pylori (bacterial infection of the stomach) - a commom cause of B12 deficiency and absorption problems?
Blood results:
Folate - as above - not deficient but could do with being a little higher. Your GP may think that the level 's okay but it's not. Needs to be in the top third of the reference range for optimum effect.
B12 - levels immaterial because you've just had your loading doses. Should not be used a reason to stop injections.
Hb and Hct - low and at the bottom of the range respectively - indicative of iron deficency anaemia, b12 / folate deficency.
RBC's - below reference range - indicative of iron, B12, folate deficiency.
MCH - just over the top of the reference range. Indicates red cells are larger than normal (macrocytic) - macrocytic anaemia caused by B12 / folate deficiency.
MCV (measurement of the individual size of single red blood cell) mid reference range. Would usually expect this to mirror the MCH result. However, the combination of iron deficiency aneamia (which makes cells smaller) and macrocytic anaemia (which makes cells bigger) may well 'balance out' the red blood cell size (i.e. small cell size of microcytic anaemia inncreased by large cell size of macrocytic anaemia - and large cell size of macrocytic anaemia decreased by small cell size of microcytic anaemia, making the red blood cell examined look a 'normal' size (grief, not sure I understand what I've just said - hope you can).
Note: I've only considered these results in relation to your B12, folate, and iron deficencies - your GP will view them against your whole medical history.
So Paul...You need iron supplements, a little more folate...and the intensive regime of B12 injections. This is very important in terms of recover and the prevention of potentially irreversible neurological damage (come back if your GP is reluctant to prescribe this regime and we can suggest other ways to approach her).
Finally Paul, please don't be too dispirited because you have yet to. Or ice improvements. Sometimes it takes a while and the things that are likely to improve first may be things that you won't actually notice (because you're focusing on the neurology - and who wouldn't). Sometime it does take a while and it sounds like you've had symptoms for quite some time...so all will not be fixed by the first few injections.
Take care, keep injections, shout if you need more help...and let us know how you get on 👍.
Ps just wondering, as an afterthought, do you have any autoimmune conditions in the family?
Oh dear PaulFoster...another GP who doesn't understand B12 deficiency, or PA.
Yes...a books a good idea...but it will take her an age to read...if she ever reads it! Think you need something quicker than that 😖.
But first... some 'debunking' (just to give you an idea where all this is coming from):
I don't see how she can say you don't have PA - she hasn't tested for it (inaccurate though the test can be).
Because your Hb and Haemocrit are low she is assuming you don't have macrocytic anaemia - most GP's think that you have to have this to have pernicious anaemia - you don't. And these results are low because you have iron deficency anaemia - she probably hasn't taken that into account. If she looks at your MCH result, this does indicate macrocytic anaemia - and she should be wondering why - B12 / folate deficieny (and perhaps PA - but that a moot point - more about that below).
It's a bit worrying that your GP has failed to notice that you have iron deficiency anaemia. GP's often fail to realise that being in the reference range is not good enough - it's where results sit within the reference range that's important (bumping along the bottom - or at the top - is not good enough for some people, especially those with B12 deficency.
Second: 30% of patients who present with B12 deficency and neurological symtpoms do not always have macrocytic anaemia or PA.
Note: macrocytic anaemia often develops later, rather than sooner, in PA disease progression.
Third: it's actually a moot point whether you have PA or not (since B12 deficency has other causes too). The treatment for B12 deficiency is the same: B12 injections.
And anybody with B12 deficency (she has proof that you have this - your low low B12 level of 98) and neurological symptoms should be treated with the neurological regime (after the loading doses, injections every other day until no further improvement). (Treatment regimes Are in the BNF - your doctor will have a copy on her desk and can look it up. It's the second item down so she'll have to read further than normal).
So...what I suggest..print all the documents I gave you links to in one of my previous replies. Your GP won't read them all - in fact might not want to read them at all. So...highlight the places that best suit the arguments you are going to make (focus, for instance, on the treatment of neurological symtpoms, the treatment regimes, and the absence of PA or macrocytic aneamia (though you do have evidence of this - and you could point that out also).
Make an appointment with your GP - a double one if necessary - and take your information along to discuss with her (only show her the highlighted bits or she'll switch off). The aim of this is to get those every other day injections (what else she should be doing is also important but perhaps secondary to getting treatment). It's a good idea to take someone with you if you can. GP's are often more attentive if a witness is in the room (sad, but true). If that someone can read you I formation and be prepared to support you by jumping in, if necessary, even better.
Also - and for that consultation:
If you're a member of the pernicious anaemia society, log on and go to the library section and print off a document called 'subacute degeneration of the spinal cord' - if not search the Internet for information about it and print that off. Subacute degeneration of the Spinal Cord is specifically related to B12 deficency (which you can argue you have) and develop when that deficiency is not treated properly.
I'm not suggesting you have this but most GP's are unaware of the neurological havoc B12 deficiency can wreak on the body when it is untreated or under treated. Then ask your GP to confirm that you are not at risk of this (she won't be able to) and ask her if she is willing to be held accountable if you are. The ask for the document and your request for the neurological regime of treatment - and her refusal - to be placed on your medical records. This might just give her the poke she needs to start treating you propery.
Something else - is there another GP in the surgery you can see - this one is not serving you well.
Or perhaps change to a different surgery?
Another approach would be to write a letter in the same vein as above (with highlighted documents included) and submit this to her before your appointment)...and go with a copy when you go to see her.
I'm also noting your previous gastric history and it sounds like you may have previously been prescribed PPI's - which impeded the absorption of B12 deficency. Also - did you see a gastroenterologist at the time. You should have been referred. Think you should ask for a referral now - an endoscopy would be useful to assess the oesophagitis / hiatus hernia - but also to see if you have yet developed the gastric atrophy that accompanies PA.
Also - while I'm here - you should be referred to a neurologist for assessment - your GP should want to rule out any underlying health conditions that may be causing your symptoms.
It's probably going to be quite tough Paul because GP's don't like to feel that they're being challenged. But you're going to have to keep at it because you need to have those injections sooner rather than later (where neurology is concerned, all the guidelines use the word 'immediately').
Interesting to note that if you lived in Europe you could buy injectable B12 in a pharmacy and inject as often as you needed to to get and keep well. And B12 deficient dogs are given injections every week!
Finally, and I'm saying this because I think you need those injections very quickly...many people here (me included) have had to turn to self-injecting when all else has failed...so if this is a route that you are forced into, then people here will be able to advice and help. Some do this and then persist with and manage to 'convert' their GP's...so perhaps you could follow that route whilst your ridiculous GP is dithering...potentially at your cost.
Finally, so sorry you're having such trouble when you're clearly not well and struggling to get your health back.
Good luck with your GP....let us know how it goes...and shout again if you need more help...👍
You can't go wrong listening to Foggyme👌 I self inject and have taken all the advice I can from this forum . I wish u luck , in only a 1/4 the way in myself but there is a light. Take someone with u to the Drs when you take the guidelines in. I took my husband . Good luck
Hi again Paul...just been reflecting on my second reply to you and think that as speed is of the essence, it might be a bpgoodmidea to wrote to your GP before you see her, so that she can review your letter and the information in it first.
Head the letter 'Treatment Appeal' and at the end, include something along the lines...if you agsin feel that you are unable to prescribe the recommended treatment, please can you respond in writing, with your reasons for making this decision and include medical evidence to support your decision (she won't be able to because there isn't any).
Grief...I'm so frustrated by your GP's lack of knowledge...
Hi everyone, I’ve tecently been diagnosed with low b12. I’ve had my losing dose and since one injection (due to have them every 3 months). I felt as if they weren’t working, and I have had some dizzy/ feint spells. Doctor thought it might be low iron. Had another blood test and my b12 came back as high. Googled it and found this post. The docs also tested some other things but I’ve got no no idea what and whether they’re ok even though the receptionist says everything is normal. Had anyone got any advice on reading the blood test results? I don’t think she tested for vit D but I’ve noticed few posts suggesting it. Any advice appreciated!
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