I posted a few day ago about having lots of signs of B12 deficiency/hypothyroid and went for some blood tests. I have had tests including b12, folate and thyroid tests. I had a follow up appointment today and all my bloods were normal and the GP has done an urgent neuro referral. He seemed annoyed at the suggestion that it still could be the b12 and said I had 'tunnel vision'.My b12 was 220 and my folate was 12. My thyroid was normal. I tried to explain about the problems with the test but he just told me a story about a guy who was convinced he has a heart problem and ended up with a clot on his lung.
I said I would pay for private blood test for MMA, homocysteine etc but he said that would confuse things and he would not be able to interpret the results and I would need to see a private consultant. I was going to ask him for a trial of b12 injections whilst I wait for the neuro referral but I felt shut down by him.
I am happy to be wrong and see the neurologist etc but I am concerned that things are getting worse. I have real difficulty in walking- heavy legs/ unsteadiness/ tripping over my feet. I fell over outside the surgery this morning because I literally just tripped over nothing. I feel so tired and irritable. I cant do the simplest tasks like folding up clothes or having a shower without feeling tired. I have ongoing numbness/altered sensation in my little fingers and random pains in my hips/ knees and back.
I was taking sertraline for a bit of PND but they stopped that a couple of weeks ago due to the problems I am having.
Am I crazy to think this could all be b12 related? I am scared my symptoms are worsening and I potentially have a two week wait for an neurologist.
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Rachf1986
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Hi Rachf1986 I'm not medically qualified but I would say your B12 is on the low side and if you are having neurological symptoms because of this they need to be treated quickly to prevent further deterioration.
In view of your doctor's intransigence you might consider self supplementation - the only problem with this is that it will probably shut your doctor's door permanently.
Do you have any idea why your B12 is low?
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.
I def get the feeling if I do the blood tests privately or supplement it will become harder for me to access NHS treatment.
I am not sure what can be causing it. I had a baby around 10 months ago and when I was pregnant I had a vasculitis which could have been autoimmune as they could not find a cause. I also took sertraline for 4 months and there has been some findings that it can affect b12.
Like I said I am happy to see the neuro and do all tests but I don't feel deficiency has been ruled out yet it seems to have been dismissed.
Sadly many GPs are happy to just read their computer screens instead of listening to their patients.
I had to "fight" my "one size fits all" doctor for six years to get the frequency of my B12 injections increased because of the return of symptoms in the run up to the next one. He seemed to think that despite the fact that I'd had P.A. for 45 years and my age at 75, the same prescribed frequency would suffice.
Although the UK guidelines point to referals to a haematologist B12 isn't in itself a blood disorder - it affects a lot of systems in the body and a referral to a neurologist certainly doesn't rule out the possibility that B12 is involved. Its pot luck with a haemo as to how aware they are of B12 - and same is true of a neuro - but they should be looking for what is causing what is going on so it may be the right referral for you if neuro problems are the worst.
sertraline is an SSRI and can play havoc with folate levels in some people - and as folate is needed to process and use B12 it may not be the right drug for you ... and may not be an appropriate treatment at all if the PND was actually down to a B12 deficiency/problems processing B12.
Make sure that you go to the neuro with a copy of the blood test in full (including the ranges) and a checklist of symptoms of PA
Hi Rachf1986. Just to let you know...I have recently seen a neurologist and he did B12, MMA and homocysteine. My GP never did these these tests four years ago when he diagnosed B12 deficiency so unfortunately, BEACUSE I have been having B12 injections, all these tests will be skewed.
Both your B12 and folate are low and you are right to want further investigations for B12 deficiency, along with investigation of the potential causes. Also, it is wrong for your GP to treat the low folate without also treating the low B12.
So...while it's likely that you do need treating with B12 injections, it would certainly be better if you could wait until the neurologist has done whatever blood tests he wants to do (if you supplement before tests, it will make it really difficult to ever get a proper diagnosis). Certainly, I would ask the neurologist to do (at least) serum B12, folate, ferritin (or a full iron panel, if he'll do it), MMA, homocysteine, active B12 and FBC (if your GP did not do it) - but worth checking again, even if he did. These test would be considered usual given your symptoms and you never know, he might order them without you asking. He'll certainly want to do some blood tests and you could always simply ask him to add...(whatever you think he's missed 😀).
Once the neurologist has taken bloods, either ask him to write to,your doctor urgently to request B12 injections or go back to your GP and ask for them. In view of your neurological symptoms, it is important that B12 is started quickly to avoid irreversible neurological damage. Your neurologist should know this but you might have to press the point. Likewise, GP's are often ill informed about B12 deficiency so, again, you might have to press the point.
As gambit62 points out, the pinned posts to the right on the home page of this forum give lots of useful information about B12 deficiency and PA. might be worth having a read and many people here print out the guidelines and take them along to their GP's when treatment is not forthcoming.
Also worth mentioning that nitrous oxide (laughing gas) radically depletes B12. Might be worth mentioning this if you had nitrous oxide whilst in labour as this could also be a causative factor.
Really sorry that you're having all these trouble, especially with a lovely new baby to look after.
There's plenty of support here so please keep posting, if and when you need help.
Good luck and we'll look forward to hearing how you get on xx
Thankyou- I am worried about the wait to see the neuro and the damage that might be being done in the meantime. I am paying to get all the above bloods done tomorrow so I can go more 'armed' when I see the neuro and hopefully get a trial of the injections more quickly. I will def mention about the gas and air and also the sertraline as I am wondering if my levels have always been low then been affected by both things.
Feel very supported on here and I am sure I will be posting again soon x
Hi Rachf1986. If the bloods come back with out of range results or even lower serum B12 etc. You could always go back to your GP with the results. If you think you need B12 urgently and before your neuro appt. it would be possible for your GP to ring the neuro 'team' and ask about prescribing the B12 prior to your appointment with them.
Hi Rachf1986. Still waiting for follow up neuro appointment...was 28 October but just received a letter saying brought forward to 23 September, so we'll see. But I expect them to be normal as have been having high doses of B12, so results will possibly be skewed!
Good for you on blood film...I have low serum iron and low ferritin...on iron 322mg twice a day, but little effect, as yet. Can you get a full iron panel...iron deficiency anaemia very debilitating (and different from Macrocytic anaemia). Not sure if iron deficiency anaemia shows on a blood film (perhaps someone will spot this and reply - would usually check but sorry, too washed out today) 😀.
Good luck with it all and hope you start feeling much better very soon. Would love to hear how you get on x
Edit: thinking about it, a blood film should show microcytic cells if you have iron deficiency anaemia. Doh...the fog...makes me sooo stupid!
If I see a neuro again I'll take a copy of BCSH Cobalamin and Folate Guidelines, a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency", a copy of fbirder summary of B12 documents, the PAS symptoms checklist with all my symptoms ticked and a supportive person who's well-informed about B12 and who'll speak up for me if it's necessary.
I am def planning on taking someone with me as I feel it is a battle to be listened to and taken seriously. My friends and family can see the symptoms and how bad I am feeling. Thanks for the links.
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