Literally just out of GP. It wasn't one of my usual gps but a locum. Last weeks B12 is normal. When I asked what it was she ssid huffily "225 thats completely normal". Looked affronted that I had requestedcopies of my blood tests and said it is up to the practice manager and it will cost.
I mentioned about the previous two low b12 results and low thyroid results and she told me that they fluctuate all the time and could be my diet thats causing it.
I mentioned about my family history og pernicious anemia and low B12 & her words were "look your B12 is NORMAL therefore you certainly DO NOT have pernicious anemia.
When I questioned her about all the tests I have had over the years and the fact that I cannot drive or exercise because of my balance problems (confimed by numerous tests) she said "well your MRIs are clear therefore there is nothing physically wrong with you".
Also told her about my hip pain which is persistant and was told to call a physio but the waiting list is so long I would be better going private.
So here I am again back at square one. Balance issues, numbness of thigh and intense itching in the numb spots. Extreme fatigue etc etc etc but theres nothing "physically " wrong. Can't stop crying just now. Where do I go from here. They obviously think its all in my mind.
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lorrilang
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I just wanted to offer you hugs and to reassure you that 225 is low enough to cause symptoms. I started my journey with a low reading of 220, and I know full well that that level, even though it was technically just barely within range, was too low for me.
Have you tried any of the sublinguals or patches? Some people respond well to them. There is also the self-injecting route.
Hang in there things will get better. It took me years to get proper treatment. Now that Martin and his team are working on it you have better prospects. I know how you feel.
From my limited knowledge even if your blood levels are ok if it's not in an active form its not going to help much.
Lorrilang. This is just dreadful. This GP locum is clearly misguided - to say the least.
First - a serum B12 test cannot diagnose PA. And you can have low or apparently 'normal' (or even high) levels of serum B12...and still have PA.
Second...all the guidelines state that in the presence of neurological symptoms, B12 treatment should commence immediately...even if serum B12 levels are in the low to normal reference range (low being the so called grey area). (See UKNEQAS Alert in the links below - one to print for your GP).
You don't give the reference range but 225 puts you very low in the reference ranges. To put this in context, neurological symptoms can occur at levels below 500, a level of 1000 is needed for neurological repair to take place, it's not unusual for people on B12 injection to have levels of 2000, or well above. Your GP obviously does not know this.
It's also worth telling you that 30% of patients with B12 deficency present with neurological symptoms - before there is any clinical evidence of macrocytic anaemia or PA.
With your family history and given your long history of symptoms, it's almost certain that you have B12 deficiency.
Your GP is clearly unaware that they are many causes of B12 deficency (only one of which is PA) so whether you have PA is a bit of a moot point: the treatment for both conditions is the same: B12 injections.
So...what to do...
I'm going to put some links in at the bottom of this reply which will take you to information you will need to know in order to 'persuade' a GP to treating you (but how bad that is should be necessary).
Print and read all the documents, go through them and highlight anything that is relevant to your case. It's really important that you do this because most GP's are not aware of any of this information. Unfortunately.
This will give you a good awareness of how your GP should be investigating and treating you. Knowing this will give you the courage to approach a GP again...but you're going to have to be brave and determined.
So then....make another appointment with your own GP (or at least, not a locum). Make a double appointment if necessary - so you will have plenty of time for them to listen...and read. If your GP will not read your information, ask politely if you may read it out to them 😄. It would be a good idea if you could take someone with you. GP's are often more approachable and less hostile if there is a witness in the room. Sad, but true. And if you ask to read something out because the GP won't listen, few would refuse if a witness is present 😄
Before your appointment, make a short bullet point list of the arguments you are going to use to support your request for treatment..and try and link your arguments to your highlighted evidence so you can make the argument...then show the evidence. It may sound a bit daunting but if you focus on the main issues and number and order everything before you go in, it will help keep you on track.
If the person you take can read your information and step in to support you, if necessary....even better.
I have more information to give you but if I take an electronic trip to fetch it..I'll lose everything I've just done...so, I'm going to,post this reply and then come back and leave another with more information.
This is not all in your mind. You have very real physical symptoms and your GP should be listening and taking you seriously. I know it's not mix consolation but many (probably most, if not all) of the people have been through something very similar...and it's unnecessary, cruel, and ultimately damaging our collective good healths.
Save this until last and use if your GP is still refusing to treat you..
If you're a member, go to the PAS website (library section) and download the document called 'Subacute Combined Degeneration of the Spinal Cord'. (If you're not a member, do an Internet search and something will pop up. But..use information about the condition only - treatment regimes vary and its best to stick to UK guidelines - which you have in the links in my or previous reply). I’m not suggesting that you have this, rather that it might be just the thing to give your GP the prod he /she needs to start treating you…
The PAS document (or Internet research you find) outlines one potential outcome if B12 deficency is untreated or under treated: the neurological condition subacute combined degeneration of the spinal cord (SCDSP). This is potentially irreversible.
Again, I 'm not suggesting you have this, but GP's are often unaware of the neurological havoc that B12 deficiency can wreak on the human body. Yours certainly is. And it might just shock your GP into treating you. It should do!
If it doesn't and you're feeling really brave (you should really do this) ask him / her if he is willing to accept responsibility for this potential outcome - if he / she is wrong.
Then smile very sweetly and politely...gently gently....ask for this specific document to be placed on your medical records together with the fact that you have again requested (and been refused) treatment for B12 deficiency 😄
If this none of is works, then the other options are to change doctors completely or to go down a formal written route to again request treatment (A GP would find it more difficult to refuse a written request for treatment that's underpinned with proper medical evidence).
So...be brave...try again...and remembered...the BP you saw was wrong. Cruel. And probably a bully, too boot.
All here will be sending you hugs...just post again whenever you need support or advice, or if you just want to vent.
really sorry about the appointment - unfortunately GPs are generalists and most of them don't really understand the limitations of tests - particularly these days. Hope that you manage to find plenty in the materials that Foggyme has provided and can put together a letter outlining the main points - which would be the main next step.
The locum was totally out of line on access to your test results - you have a legal right to access them - the service can make a nominal charge to cover administration costs but it would be against the law for this charge to be anything more than covering administrative charges.
Hi i have petious anemia injections every 3 months and since 2013 have suffered from dizziness and balance problems as well as numbness and extreme pain in joints muscles and back after numerous consultation with ent and neurologist say my brain is not sending out the correct signals and then having constant pain he sent me to a ruematologist that's has just diagnosed me with secondary fibromyalgia which can cause loss of balance and tiredness and elavated pain i can barley walk and use a wheel chair after 4 years of not knowing hopefully get the treatment now for me to cope go back to the drs and ask them for a referral to a rumetologist x
Thank you everyone for the amazing advice and support.
Just had a call from my docs and they received the letter I wrote to them last week outlining everything especially the family history. The nice doctor that I can never get an appointment for read the letter and phoned me to arrange for an IF test to be done tomorrow morning and has printed out all my blood results over the past year free of charge. I have to make an appointment to see her to discuss everything. So fingers crossed and I will take print outs of all the fabulous advice everyone has given me.
I'll post again when I know more. Thankyou everyone you have all given me the ddetermination to fight. Xxxx
Hi just to say again how saddened I am at the constant lack of understanding on this debilitating illness and just wanted to say have you got online patient net which allows you to book appointments etc as I get my test results from there and can print off the graphs etc. It's a long and painful road and I hope you are successful
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Lets hope she will try to help you whether you are anti-IF antibody positive or not and give you your injections.
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