Hi everyone, I went to St Thomas' hospital for an active B12,MMA, Folate and Homocysteine tests to try and get an definitive answer, these are the results.
Serum Folate. 5.4 ug/L. (3.1 - 20.5 ) Within ref range (lower end)
Vitamin B12 (serum) . 189.0 ng/L. (187.0 - 883.0) Lower end of our ref range
Methylmalonic acid. 314 nmol/L. (0 - 360) Within our age related ref range
Active B12 (HoloTC). 50 pmol/L. (70 - 108). Within indeterminate range
(25 - 70)
"The results suggest that the concentrations of folate and vitamin B12 in blood are declining but still sufficient to support intracellular vitamin B12 metabolism. Monitoring of levels may be required."
I noted serum B12 at 189 ug/ L is much lower than the last test done by GP which was 304 ug/L Also folate down from 7ug/L to 5.4ug/L
I don't think the GP will do anything for me based on these results still looks to be a grey area, still have symptoms. Where do I go from here? Surely it is better to treat now rather than wait. Interested in your opinion Foggyme before my next GP appointment. Many thanks.
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Cali25
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Hi Cali25 I'm not medically trained but does this help?
False normal B12 results and the risk of neurological damage.(U.K. N.E.Q.A.S Haematics.org.uk
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“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
YHi Cali25. I've just looked back through your past posts to refresh my memory and...oh dear...your GP's are not serving you well, are they!
The first and very obvious thing to say is that you have neurological symptoms associated with B12 deficiency and should have been treated with B12 injections when you first went to your GP - immediately. For your GP to simply assume that your neurology is related to your well controlled diabetes without considering the whole picture is wrong. (More,of that in a minute).
And yes - to answer your question - to treat now rather than waiting is what they should do (what they should have done before).
clivealive quotes precisely the right information. It's a treatment alert issued by the UK National Quality Assessment Scheme for Haematicic Assays and it specifically instructs medics that if neurological symptoms of B12 deficiency are present, treatment with B12 injections should begin immediately to prevent the development of potentially irreversible neurological damage. This is what your GP's are exposing you to if they do not treat you - and many do not know it!
I suggest that you print the alert and take it to your Gp's appointment and pass it across the desk for them to read. Take a copy for yourself and if they put it on the desk and refuse to read it....read your copy out to them.
Here's the alert:
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
I'm not suggesting that you have this - GP's are woefully ignorant about the neurological havoc B12 deficency can wreak on the body and this should sharpen their thinking.
I'm giving you this information first because as your blood results are still in the 'grey' area (B12 189ng/L (187 - 188) your stubborn GP's may still refuse to treat you - though this is wrong. They may even say that your homocysteine level is reducing so somethings are improving, completely ignoring the whole picture (the steady decline in your B12 / folate levels...and your symtpoms, history etc.)
A suggestion if your GP is happy with your B12 level because it's in the 'normal' range (Ha)...play the daft man (or should I say person 😄) game. Smile sweetly and ask what happens when your serum B12 level drops just 3ng/L's to 186ng/L (a ridiculously small amount which will let you enter the deficient range). Ask if there's a (magic) switch which suddenly turns on B12 deficency once you hit that figure. Yes - it's a ridiculous - but I'd love to hear a GP try and explain it to you in a way that makes sense (and of course, they will know that it doesn't).
That aside...it's dreadful the way we deficients are expected to jump through hoops tryIng to get the 'right' test results so that treatment will be given...when all the guidelines state that these are only a small part of the picture...and that symptoms are the things that should be considered too...treat the symtpoms, the the serum B12 levels (did,you read the links I gave you about this in one of my replies in your second post?).
So...this GP's appointment...think that rather than just use these results as the sole basis for getting treatment, you should re-cap on your whole history and also try and 'debunk' some of your GP's misinformed notions about B12 deficency and its treatment:
Family history of PA (grandfather and mother)
Symptoms of B12 deficieny (stress all your neurological symptoms - highlight the symptoms list in the links I gave you previously and take this with you)
Point out the problems with the Serum B12 test as the sole marker for deficency (again, evidence in previous links). It is entirely possible to have B12 deficency - and hence the symtpoms associated with it -when serum B12 levels are in what's called the 'normal' reference range (again, evidence for this in the links in previous reply).
Stress that 30% of patients with PA and/or B12 deficiency present with neurological symtpoms without having macrocytic anaemia (the large red cells your GP will have been looking for). (Your GP is mistakenly looking for macrocytic anaemia as a marker of PA - this,often only appear in the later stages of disease progression (more evidence in the links I gave you before).
Ask if the iron deficency anaemia has caused microcytic anaemia (small red blood cells) which could have changed the shape of your red blood cells - made them smaller - and thus 'masked' or hidden any evidence of macrocytic aneamia (yes...it most certainly lay could have done - and you GP may not have taken this into consideration.
In your first set of blood test results, you have a raised red cell distribution width (RCDW - 15.3 (11.5 - 14.7)) - this indicates a mixed population of large and small red blood cells associated with iron deficency anaemia...and PA. Younhave iron deficency anaemia...but how can he be sure that PA is not a factor too, given your consistently falling B12...and family history of autoimmune disease...that is, PA.
Your Iron deficency anaemia and vitamin D deficency are indicative of an absorption problem. Ask your GP why they are so reluctant to consider that an absorption problem could also be responsible for your consistnatly falling B12 and folate levels.
Finally (unless you can think of more things to raise)...go back to the issue of neurological symptoms and the UKNEQAS alert again.
In view of your neurological symtpoms, ask to be reassured that you are not at risk of developing subacute degeneration of the spinal cord due to lack of treatment for your neurological symptoms.
I think if,you are going to get anywhere with this GP, it will be by debunking their mistaken ideas about the condition rather than trying to get the 'right' test results.
Having said all this...though your GP should treat you with B12 injections - immediately - based on their past performance I fear that this may not happen.
If you have to leave without treatment, I think the next step would be to write a formal request for treatment, based on the arguments, with every argument supported by evidence....hard for them to ignore that...by writing to one specific GP it makes them accountable so they will have to read your evidence...which they will realise they ignore at their own peril (not to mention yours).
Just to give you a clue what this would involve (and maybe some more ideas for your appointment) here's a link to a reply I recently did on just that issue (some won't be relevant to you but you'll be able to easily spot what might be):
I also note that one GP suggested (rather rudely) that B12 is a food supplement and you could buy your own if you became deficent. Wrong - there's information about that if the links I left before - no time to discuss now - tablets are not the correct treatment for neurological symtpoms or PA - you need B12 injections.
And last....blocking access to your medical records is disgraceful. I speculate that this is for their benefit, not yours..perhaps, like many of use deficients, you're becoming problematic because you will not accept what they are saying. And good for you, I say 😄. But suggest this is something you could go back to when treatment has been sorted out (one battle at a time).
In the meantime, just ask the receptionist to print all your blood results so that we can help with interpretation.
Anyway Cali25...very best of luck...let us know how it goes...sincerely hope that your GP will do what should have been done several months ago. Post again if you need more help.
Many thanks Foggyme I really appreciate all your help, my appointment is not until next week. I have already sent a letter and print outs of all the information before I went to London for the other tests, I doubt he read any of it. I will go armed with more copies to my appointment and take my son along with me hopefully the GP will take notice. Have to say although I've been taking the iron and Vit D for the last 5 weeks, I barely feel any different. I will let you know how I get on.
Your GP should also treat your low folate levels. B12 and folate work together and unless you have good folate levels, the body cannot utilise B12 properly. You should commence folate 24 - 48 hours after your first B12 injection - there have been rare instances where neurological damage has occurred when / if folate is before B12 injections.
It's therefore also important that your GP does not try to treat your low folate without also treating the B12 deficency as this can 'mask' the B12 defiency and allow neurological damage to occur. Some GP's are not aware of this.
I am facing the same situation with my 18 year old son. Has loads of clinical symptoms - We also have a strong family history of PA. we are now waiting for the GP partners to look at my sons case to decide course of action and whether they will start him on B12.
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