Why won't doctors listen :-(

Why won't doctors listen :-(

Hi everyone,

I'm a 35 year old female who feels I have a body of a 80 year old! For years (first found out I had low b12 in 2013 and was told to take a multi vitamin) I have been arguing with the dr about how I feel and he fobs me off all the time...I nap most of the day, my legs burn and ache I can't walk properly when I get up, I have pins and needles in my feet and hands, I get headaches, I'm snappy, I have pains in my chest and find it hard to take a deep breath. Dr told me I have depression and anxiety (I'm the happiest person in the world so don't know where he got that from) I burst into tears infront of him the other day as I can't take this anymore and he agreed to do blood test my b12 is 152 and serum folate is 3.4, I asked for a copy of results but don't understand the rest..anyway he says I don't need injections or any supplements as apparently it's fine even though the b12 has come up in red on the print out.

Does anyone have any advice for me? I just want to feel normal again.

15 Replies

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  • Oh dear, here we go again with another doctor who knows zilch about b12. Your result is very low and the symptoms you describe fit perfectly with b12 deficiency. You need to up your folate first as it helps your body to process b12. Other members on here are more knowledgeable. You can show the relevant documents to your gp, the guidelines say that you should be receiving injections. If you have neurological symptoms then injections should be every other day until symptoms stop improving and then every two months, although often people need them more frequently. Look through posts from fbirder and you will see a link to a summary he has put together of documents to give to your gp.

    You need injections or supplements for life too. Go on the pernicious anemia society website and b12d.org or b12awareness.org and b12dinfo.org for lots of information on symptoms, treatments and how to talk to the gp. There are other tests that the gp can do to before you take any supplements yourself. Unfortunately, your doctor, like most, needs to be educated.

    I'm sure other members will give you better information soon. Good luck. :-)

  • I think I have read somewhere that taking folate before you receive the correct treatment for B12 deficiency will cause irreversible nerve damage.

  • Oh I've not seen that. Can you find it?

  • Yes, here's some advice. Find a different doctor.

    The reason your B12 results were in red was because THEY'RE TOO BLOODY LOW! Why does he think the lab prints them in red? It's so that moronic doctors find it difficult to ignore them.

    If he spouts some moronic line about the levels being 'only just outside the range' tell him you want your folate deficiency treated as well, because those levels are 'only just inside the range'.

    Sorry, I'm not in a good mood this morning, and if that were my GP he would be getting a proper earful.

    Normally, I would suggest printing my summary document - frankhollis.com/temp/Summar... - and pointing out the bits where doctors are told they should treat the symptoms if there is a discrepancy between those and the blood levels.

    But in your case there is no discrepancy - you have the symptoms of B12 deficiency and the blood test says that your blood levels of B12 are deficient.

    I'll bet I know how that piece of manky matter between his ears that he calls a brain is 'working'. I'll bet he's one of those who believe that a B12 deficiency is always associated with megaloblastic anaemia. And because you don't have megaloblastic anaemia (your MCV would be high if you did) you can't possibly have a B12 deficiency. This is also covered in my summary.

    Print out my summary and use it to tell your doctor what you want done -

    You want a course of treatment as recommended in the British National Formulary for people with neurological symptoms (i.e., your tingling hands and feet). That is three injections a week until there is no further improvement, then once every 8 weeks forever.

    I'd also start to take folic acid, 800 ug a day, once the injections start. And I'd join the Pernicious Anaemia Society (quick, while it's still only £20 for lifetime membership).

  • Fbirder's advice is good. Take it. I did.

    I was in exactly the same boat as you. I hope you have more luck than I had with my GP.

  • Fortification of flour and processed foods with folic acid has a known masking effect on megaloblastic anemia (enlarged red blood cells). It is added to foods to prevent birth defects in unborn children. Folic acid suppresses the size of the red blood cells but does not prevent neurological damage caused by a B12 deficiency. I have read that megaloblastic anemia is a late-stage sign. So if you live where folic acid has been added to food, or your deficiency is in an earlier stage, it isn't very likely you will have megaloblastic anemia.

    The FDA (Food and Drug Agency) in the United States has required fortification since 1998. From what I can find on the internet this is still under debate in the UK. From my perspective as a PA sufferer, it was a wrongheaded decision for the US to require fortification without making the B12 test standard as part of the complete blood test as it became much harder to diagnose a deficiency (scientists warned the FDA about this). It took many months before my deficiency was diagnosed, who knows how many more have suffered as a result. There is very little awareness of PA in the US.

  • Fortification of flour and processed foods with folic acid has a known masking effect on megaloblastic anemia

    I don't think so.

    Consumption of large amounts of folic acid has the potential to mask megaloblastic anaemia. But there has been no proof that such masking has ever occurred due to fortification.

    When they were trying to determine the level of fortification they were well aware of the possibility of this problem. The amounts were designed to minimise the possibility.

    We had this discussion a few weeks back. There I pointed out that a portion of lentils had about as much folate as almost a whole loaf of fortified bread. And that breakfast cereals had been fortified with folic acid for years - with no outcry.

    If fortification of bread should be banned so should the sale of spinach, lentils, black beans and dozens of other foods.

  • Thank you everyone, I will let you know what happens.

  • May I also suggest that you begin to take a record of your symptoms so you can present them as 'scientific evidence' so your darling GP cannot ignore what you are saying. You may also consider taking a close family member with you so they can be your advocate. The brain can struggle to argue as logically as it used to once the symptoms set in. There is hope, though, because you can reverse the damage but you need to be quick and don't wait another year for action. Good luck.

  • I would outright ask your GP why he thinks that your B12 isn't a problem. If he says that it can't be a problem because your red blood cells are normal then tell him that, whilst macrocytosis may be a symptom of B12 deficiency it is only a symptom it is not a defining characteristic nor is it the cause of all the other symptoms of B12 deficiency. Further, it is not necessarily the first symptom to appear. He needs to educate himself as to the full range of symptoms for B12 deficiency and be aware that neurological symptoms can develop well before any actual anaemia develops - failing to treat will result in the neurological symptoms becoming irreversible.

    I personally consider his behaviour to be sign of incompetence and tantamount to gross negligence. He is a danger to his patients. You would have every right to make a complaint about him for failing to treat you correctly and putting your life at risk - let alone your quality of life.

    Yes, and I would also go with looking for another GP.

  • I changed my gp a couple of weeks ago, I went to him as the chest pain and breathlessness was scaring me along with the pins and needles I thought it was my heart. I broke down as he never even let me describe my symptoms he said I just need to take breathe into a paper bag (he never even listened to my heart, took blood pressure or booked bloods). My husband went in and demanded bloods to be taken and made a complaint....had bloods done a week later and saw a new gp who said "oh you b12 is slightly low but it's ok as your not anaemic" I told him my legs hurt so much, the tingling and burning in my fingers and toes, I told him about the naps I have to take just to get through the day and the brain foggyness 😩 He told me he wants to do a blood test!!! Why ffs I just had one last week...he said i was depressed and had anxiety again I just cried! I get so angry no one is listing to me, since 2013 when I first found out my b12 was low I have been to 3 new dr surgerys as my husbands job requires us to move every 3 years. My extreme fatigue started in about 2010 so think I have had it for 6+ years.

    I have just ordered some Rotexmedica Hydroxycobalamin! If dr's won't help I will help myself! My kids are growing up and I'm always tired! I need to get my life back. Also I have read it could be passed down, I have 3 children would it be worth getting me eldest (17 female) tested?

  • hope the injections do the trick - at least it gives you back control.

    There do seem to be some genetic links but I think that the exact genes involved aren't clear. Would suggest keeping any eye out for symptoms in your daughters and making sure that as they get older they are aware of the symptoms to look out for, rather than struggling with trying to get bloods done that are likely to be misinterpreted because clinical presentation doesn't get the recognition it needs. Absorption problems can take years and even decades to show up as levels that stand a chance of being recognised as deficient. Symptoms are likely to appear well before that.

  • What is wrong with the medical profession? Do they give up any further research and reading once qualified? And what's wrong with their training that they have been so misinformed in the first place?

  • It's ridiculous! My dr's have always been older. Would be interesting to know what a younger dr would say to me.

  • When I wrote to my gastroenterologist about an idea I'd had regarding achlorhydria and hypergastrinaemia, and how treating one might treat the other, he told me that they spend so much time looking after patients that they don't have any spare to even think about the science underlying some of their cases. I'm still waiting to see if I've cured my hypergastrinaemia, but at least he ran the test I suggested that would investigate the possibility.

    They do have a scheme of continuing professional development, where they can earn points by attending talks (and writing it up), doing literature research (and writing it up), completing online quizzes (like the PAS app), applying their research to clinical practices and many other things.

    Of course, those have to be done in addition to their normal, non-intensive, day jobs.

    I'm not sure how much coverage PA gets during a GP's training. I would imagine that they have, maybe, a whole day given over to PA; along with pellagra, scurvy, ariboflavinosis, and rickets.

    I don't think it's their training that's a problem per se. It's the ones that believe that they are correct and refuse to even consider information passed on to them by their patients.

    Now, I can quite understand their initial reluctance. There are so many woo-woo sites on the interwebs, run by people trying to sell their books, snake-oil and advertising space. Doctors must have several patients a week that come to them with a printout that says wombat semen has been shown to cure their haemorrhoids and they would like to be put on a course immediately at the NHS's expense (only £29.99 for a week's worth of dried semen).

    But when a patient starts talking about the BCSH, NICE and BMJ, that should alert them to the possibility of this not being your normal web diagnosis.

    The doctors that ignore that are the ones that need a good slap upside the head.

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