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Pernicious Anaemia Society
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Nasty experience with GP

Hi all

I had a blood test a few weeks ago and it showed low ferritin, folate and B12. Gp put new on iron tablets and gave me the six week loading dose of B12 (see my previous post) I felt fantastic for two weeks then the symptoms started to return. After advice on here I pushed the gp for another blood test. It came back yesterday, gp took great pleasure in telling me everything was normal, my B12 was 2000 when it should be 250 I will not need any further B12 injections, so he cancelled the one booked for November. I asked for a copy of the blood test but they won't give me one, it's not their policy. When I explained that I have all the symptoms I had before and I feel very poorly, plus the iron tablets are giving me terrible stomach pain, he said "well that proves it's not the B12 then doesn't it because your levels are high now". He told me there is nothing wrong with me, it is all psychological and he can't wave a magic wand. He made me cry. In the fruit and veg aisle in Tesco. I feel so low. To the point of considering just ending it all. They think I am neurotic. Maybe I am. But I feel poorly. I can't do the things I want to do, the things I used to do, the things I enjoy. So what life is that? I can't fight them, not strong enough. Not well enough. So what next?

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As someone who has been fighting to get their injections back for 9 years now - I can totally empathise with you.

What are your symptoms?

Please do not give in, not so soon at least, I have been fighting 9 years and am now severely disabled and cannot move out of my chair - but I have been given the love and support of this group to carry on fighting.

I'm not trying to "trump" your situation, I am trying to give you the encouragement and support that you need to carry on.

Insist on being referred to either neurology or haematology - or both and get yourself tested properly to see what is going on in your body.

Has he bothered to check your folate levels? Low folate can cause problems with B12 processing at a cellular level so even if your B12 is high, if your folate is not enough then the B12 in your blood will just sit there/be stored in your liver/doing nothing much good without the folate to process it.

I wish you all the luck in the world with fighting, if you need to pm me regarding this matter, you are welcome to.

Best wishes

Granny x

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Thank you so much. I have been reading your previous posts. I replied to your latest one in the hope you would see it. I am in no way disabled as you are, I feel fortunate about that, but I feel so poorly and they just don't want to know. Symptoms are :

Chronic fatigue, dragging myself through each day, very low mood, irritable

Headaches

Memory problems, scared I am getting dementia, can't remember what I was talking about, or doing, can't recall the names of things...

Visual disturbances, difficulty focusing, floaters, flashing lights

Deafening tinnitus

Tingly hands, often wake with pins and needles, like I have got gloves on

Heart flutters, like extra beats now and then, or feeling like my heart is pounding, really heavy in my chest

Bad stomach pain, high up below the sternum but I think that is the iron tablets. There all the time but worse at night and after food. Stopped taking them now

GP won't listen. Says it's all psychological. Won't give me a copy of what they tested for so I don't know. I had two seizures during sleep. Had ct and mri scans, all clear thank God. But GP used that, as if I was a naughty greedy child who had had all this and still wanted more. Don't know what to do. I can't fight them, not strong enough. Got to go back to work in a couple of weeks. The thought fills me with despair. I just haven't got the energy. I always had an exemplary sickness record but this last year it has been terrible. But there is nothing wrong with me, so how can I justify time off? I am 44 years old and feel about 100. This is no life. I take my hat off to you for still fighting. You are exceptionally brave x

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As far as I know in the UK your are entitled to get access to y our recordst My surgery has a system where you can make appointments, , access all test results, with graphs of past entries. any consultant letters etc. There's some stuff which does not get on there if it has come,, e.g. from the walk-in centre but its very useful. Might be worth googling NHS choices to establish what your rights are..

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Dee215,

I'm sorry you had to go through that - It's surprising to me just how unsympathetic some GPs appear to be - and it often seems to be the ones who think they 'know it all', rather than the ones who realise their limitations and look to work with the patient to best treat their SYMPTOMS.

My understanding is that you have the absolute right to see all your medical history, including blood tests. In my practice, they will print them off for you at the desk if asked. Was it the receptionist who refused you or the GP? Hopefully others will be able to give more information on how to go about getting them, as the figures may be useful in guiding how best to proceed. Do you have any record or memory of what the B12 number was from that test?

nhs.uk/NHSEngland/thenhs/re...

has some information that might help re accessing records.

It sounds like the relationship with the GP has broken down for the moment, so I would suggest that the next possible steps are:

1. Write a letter to your GP, explaining your symptoms and asking for an explanation in writing of your initial blood tests and the treatment he has given, perhaps asking which guidelines he is using to treat you. In particularly asking why he has now deemed it appropriate to stop the treatment, when the guidelines make it clear that outside of very specific circumstances (which don't appear to apply to you) the treatment should be continued, either every 3 months, or 2 months if there are neurological symptoms.

b12deficiency.info/b12-writ... has some information on how to write to your doctor.

You could quote from the following documents:

nhs.uk/Conditions/Anaemia-v...

"If your vitamin B12 deficiency isn't caused by a lack of vitamin B12 in your diet, you'll usually need to have an injection of hydroxocobalamin every three months for the rest of your life."

cks.nice.org.uk/anaemia-b12...

bnf.nice.org.uk/drug/hydrox...

onlinelibrary.wiley.com/doi...

which are all the guidelines that are supposed to apply nationally.

The guidelines are clear that a serum B12 test shortly after the loading dose is useless, as it will automatically be high. Blood tests are supposed to check only for low levels, when even more robust treatment may be necessary.

Not sure how long after the last loading dose the test was done? I've seen some guidelines that say check after 3 months, but again they are normally to see whether B12 is so low that more regular doses are needed. There are other more sophisticated tests that can be helpful, but it seems unlikely that those were carried out, and again they are best before the loading dose starts.

The guidelines all say that it is the symptoms that should be treated, not numbers on a sheet - clearly your GP either doesn't realise this or is being wilfully unhelpful in order to make a point.

2. Write or speak to the practice manager, if there is one, and explain your concerns - a letter may well be best for this also, as it gives you a chance to be clear about your symptoms, and it goes on record as part of your medical history

3. Consider looking for a new GP in the area, who may be more sympathetic and look to treat your symptoms.

4. Following 1,2 or 3, try to get a referral to a haematologist who may be able to take an overall look at the thyroid and B12 issues and come up with an effective treatment plan

It seems to me that as you are clearly suffering, then a decent GP should be looking for ways to help the symptoms, even if he was convinced it wasn't B12 - he should not be dismissing you or making you feel awful for seeking help.

Finally, there are self treatments you can investigate. initially, perhaps a high dose oral treatment initially, to see how it helps. Most people find the injections more effective, but tablets do work for some. It usually has to be a high dosage though, in the region of 1000mcg+, not the standard 'B' multivitamins you can buy in supermarkets. They are easy to get from Amazon, and possibly somewhere like Holland and Barret. There are also sprays that some people find helpful. Different types seem to work differently for other people, so hopefully others will have some specific advice on that.

I'm sure other people with more experience of the hassles dealing with GPs will be able to give advice. Unfortunately there are many here who have had similar experiences to yours, but that does mean you should be able to find some good support to get what you need and deserve.

Good Luck

Gavin

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Hi Dee215 my heart goes out to you.

If you can afford £20.00 to "save your life" (and if you can't I'd gladly send it to you) join the Pernicious Anaemia Society and explain your situation to them. They have been known to intervene for patients with their doctors and point out their duty of care and the appropriate guidelines others on here have pointed out.

I'm not medically trained so I cannot give you any advice other than that

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Thank you I will

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Dee215,

Contact your practice manager and ask for a copy of your recent blood tests. The Data Protection Act entitles patients to their results. Results within 40 days of testing should be free of charge other than a nominal £1/£2 the practice is entitled to charge to cover the cost of printer ink and paper.

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Hello,

Sorry to hear you've had such a bad experience - it's all too common, it seems.

After what seemed like a good understanding with my GP (after initial difficulties related to the GP being unaware of the guidelines) about continuing with B12 injections, I found myself recently in a similar situation to yours. I couldn't face an ongoing battle with the practice, so decided to self-inject, and my symptoms have continued to improve massively.

I also cannot tolerate iron tablets, I've tried loads of different ones over the years. I've found that Spatone (liquid in little sachets) works for me without causing any problems at all. It's easy to buy in most chemists or supermarkets, or your gp can prescribe it.

Hope you find something that helps soon.

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Thank you for that. Spatone sounds good. Is it expensive? They won't prescribe it. How do you self inject? Where do you get the B12 and needles and stuff?

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Spatone is around £7 for 28 sachets, depending where you buy it from - it really is available everywhere, though.

The B12 has to be bought from overseas, like seemingly most people on here I use goldpharma.com (cheapest for pack of 10 - about £15, inc. delivery) or versandapo.de (cheapest for pack of 100 - about £60, inc. delivery).

Syringes, needles, wipes, and sharps bins from medisave.co.uk (it cost me around £20, inc. delivery for a hundred of everything). I also bought an ampoule 'snapper' from Amazon, which easily and safely breaks the top off the glass ampoules and holds them whilst you draw up the contents.

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Eeeek!!! An ampoule snapper?! I didn't know they existed.......thanks for that little gem of information. You can guess what I'm going to do now 😉!

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It looks like nothing much, but it's brilliant!

amazon.co.uk/gp/aw/d/B016FK...

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Hi Jennylung, Thank you for posting up the ampoule snapper information, also didn't know they existed. Just placed order on amazon. Thank you again

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So sorry for the appaling way you have been treated, but it seems to be the norm... unfortunately. Such useless, ignorant and arrogant people should never have been Gps in the first place. I ask myself, as many other people do, why they actually wanted to be doctors... It's obvious it was not to help patients. It makes me so angry and frustrated. This lack of support and care is a most concerning trend.

You should get a copy of all your results, do not let that useless man fob you off further. It is a legal right for patients to get their results if they want them. Doctors have been hiding for decades behind half truths, protected by a lack of checking on their abilities. They have been encouraged to indulge in the God factor for far too long a time and really believe they should not be challenged when necessary.

Keep strong and return to the surgery but do take a friend with you as a witness. Prepare well to state how you feel and what you expect from the consultation and that you need to be taken seriously and treated with respect as well as being helped in getting better. Always take a witness with you in future, and do not let such a GP intimidate you. They love their power trips!

Good luck and best wishes.

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Thank you for that. At the moment I feel like I will never go in there again. I do suffer with anxiety and depression, I freely admit that, but this is not psychological, it is real, physical discomfort. And anyway, whatever it is, mentally ill or not, I have the right to be treated like a person, not just a pain in the rear. I agree there is very little care in the caring profession these days. I went to the optician yesterday, just to check that the headaches and visual disturbances were not eye related. She was great, she does care. She did a thorough examination and said my eyes are fine and to seek a second opinion. They can blame the fatigue on depression I guess but I am sure the arrhythmia is not psychological. It is happening. I can feel it. Same as I can hear the tinnitus and feel my hands tingling.

My problem is low self esteem. I don't have the self confidence to front them up, to go back in and face them after what he said and the way he was. I am ashamed and embarrassed. And I haven't done anything wrong! I know that.

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Dee215,

When a person's health issues are ignored by a doctor then it is easy to feel so alone and belittled and let down. You lose your confidence and become depressed because you know there are thigs going on in your body that are not normal and need attention from a GP, etc. It is then often the case people then do not have the pshychological strength to go back and fight their corner.

However, believe me if you don't fight your corner nobody else will, and too often it is this attitude from patients (ie: accepting their useless and unkind comments without a challenge) that GPs rely on to put patients off.

So I would advise you to try and collect your thoughts: write all your symptoms down, as well as tell him you felt shocked by way he spoke to you at your last consultation, that it made you feel powerless and having no help which you need. That you know your body, don't imagine things,that you're not just another number but that we are all individuals and need to be treated as such and that you expect him to help you find the real cause of your problems and help in getting better, stating you want to be referred to consultants, (cardiologist, neurologist) that you simply cannot carry on like that.

Actually, it would be even better if you wrote a letter to him, politely byt clearly stating all the above comments, asking him for another consultation in order to sort out your real problems. Letters have to be kept with your medical records so that will have more weight than spoken words, often interrupted by GP, during consultation. Make sure you keep a copy that you will take with you when meeting him next. Don't forget to say it is a patient's legal right to obtain their tests results too and that you expect to be given copies of results. Don't be afraid of doing so; it is often the only wy to get things moving... I have written to my GP many times. Just remain calm, polite but clear and firm in what you say.

I totally understand how you feel but please do not let him prevent you from getting the medical help you are entitled to and need. Always take a friend with you when visiting the surgery. When there is a witness they tend to be more careful in what they say and also are more likely to "do something" rather than basically sending you home without ny plan for further investigation and tests, or appointment with a consultant if required.

Courage and good luck.

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JGBH

I have just printed out your reply above as it is so full of brilliant suggestions and I intend to use some of your ideas next time I visit my doctor. I have a wonderful doctor but when I went with a list of things wrong with me and I wasn't SICK she didn't have much patience with me, and just said "what was the matter as she was very busy" She did send me to another medical doctor in the regional hospital who knew less than I did about PA. I'm now slow to go back to my own doctor as i'm "NOT SICK". I nearly wish I looked 'like death warmed up' as I might be listened to better.

I took it upon myself, thanks to everyone here to drum up the courage to self inject about 2 months ago and boy am I normal again!! I don't like it but I now inject every week. I've had PA for about 25 years getting an injection every 3 weeks but its only recently (apart from always being tired) that I started having lots of other symptoms and it seemed all too much for the doctor to believe at one sitting. I'm NOT depressed (never have TG) but in order to go along with her and not look as if I was being defensive I agreed to see a councillor who now agrees that I'm not depressed.

I'm going to Australia for the month of November and have got insurance to cover going 'White Water Rafting' and 'scuba diving' at 69. If that's someone with depression then 'bring it on'!! I've also already arranged to go to the local 'indoor climbing wall' for my 70th next year.

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Bengie,

So pleased to read how well you are doing. However, a very small word of warning, if I may, don't go overboard.... PA, B12 deficiency and thyroid problems work in insidious ways... so enjoy your life but don't push so hard that you risk returning to a miserable state of existence in no time at all. I too self-inject now, 3 times/week. Not exactly fun but it has to be done.

GPs are totally uneducated - and quite unwilling to learn, change their ways - as far as B12 deficiency/PA, thyroid dysfunctions and probably many more health problems. After all, they are only generalists BUT they still treat patients with disdain, full of their own little importance, unable to admit openly they haven't got a clue and too often refusing to refer patients to consultants. Of course, since each surgery is now responsible for their budget (since 2015, i believe) they are extremely reluctant to spend any money on patients... and any economy is shared between the gps!... yes, care of the patients is sadly not their primary aim.

Even when I looked so pale, ghostly pale, and I was passing out even when sitting down, my GP refused to admit I look so ill! She could never "justify" an investigation or seeing a consultant... so had to take the situation in my hands.

With the fantastic advice and encouragement of members of this helpful forum, plus advice from PAS I wrote to my GP several times, spelling things out, asking for investigations and referral to consultants. Must admit I went to see a few consultants privately to speed the situation as I had been feeling totally unable to function and that for a long time. One should not have to do that... I decided to take a friend with me at each consultation and GP had to agree to B12 injection treatment... very reluctantly.

She was not prepared to do anything at all, just letting my health deteriorate. Sadly this does not just happen to me. So many people are left to suffer and are offered antidepressants because "You are depressed" is the only thing they seem unable to utter apart from "all results are normal" when they are not... and "there is nothing really wrong with you".. so it must all be in our heads.

Sorry, I do keep on ranting but am SO fed up with so-called medical professionals who are unable and unwilling to help patients! Why did they become doctors in the first place??

Anyway enjoy your "youthful" activities! Keep getting better too.

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Hi Dee

I'm just so sorry to hear the time you have had with your GP. It makes my blood boil... to be an uninformed doctor is bad enough, but to be a unfeeling and rude doctor is inexcusable. I'll be honest, I would change GP because how ever hard you try, someone with that mindset is unlikely to change whatever you throw at him. Others might disagree and say you should pursue it, I'm a bit of a pushover 😬! Maybe if you get the PAA involved. I lost the will to battle it out and my GP was never rude to me....just rigidly followed the 'faulty' guidelines. My experience has been the same as Jenny who replied earlier and like you I felt at my wits end last week. After getting advice on this forum I am in the process of starting to self inject. Nearly all my stuff has arrived so hopefully I start tomorrow. I am excited because I know regular injections are all it will take to make me feel better. My symptoms are the same as yours mainly. The pins and needles are so bad now....I can hardly concentrate. Other suffers have informed me this is nerve damage and can only be eased by injections. Whatever you decide to do I really hope you get some relief. You've made the first step joining this forum. I posted my first post last week and have really felt encouraged by the information and support. Also the knowledge that I'm not mad and not imagining !!!! Either that or there's lots of others out there who are too 🤗 .

Also Grannyweatherwax if your reading this....I've just read your posts...I feel like crying. I really hope you are starting to feel a bit more positive knowing that you aren't alone and there can be light at the end of your very dark tunnel. I do hope you feel you can maybe go down the route of self injecting. It seemed like a massive step for me...but I've done it and I can't get over how easy and cheap it was to order the stuff! Just waiting for one more package to arrive then there's no stopping me!!!!!

Anyway sorry....what a windbag I am.....for someone who has never done this before I can certainly witter on and on. 😖

Take care everyone and don't give up !!! Xx

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Dee215, your gp is absolutely wrong. Your serum reading will be 2000 after injections. This just means b12 is in your blood, nothing to do with what is being metabolised. My own gp said the same to me. Told me she had been practising 25 years and that once the serum level was up the problem was resolved. I had to go privately to a neurologist who prescribed one injection each week, he said it takes several years for the nerves to heal and that you must treat the symptoms. He also said that the high serum reading after injections is meaningless. I also self inject once weekly and have done for a year and still have nerve damage symptoms. Do not be fobbed off and like many other people, if you have to self inject then better to do so. There are lots of links on this site and well informed people also. I know without this site I would have been in the wilderness. I wish you well.

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Thank you so much for that. They make you feel so stupid don't they? They know everything and you know nothing? I know how I feel. But they give you no credit for that, he didn't even listen. He said If you feel bad now then it's nothing to do with B12 because it's at a very high level. We are supposed to trust that these people are going to do the best for us and they don't seem to a) know what they are talking about or b) give a stuff about how we feel

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GPs certainly know very little about b12 deficiency and the systems of the body which are affected. They think damaged nerves equal depression and antidepressants which they push at you. Totally wrong, B12 deficiency causes agitation, mood change, memory loss etc. The only way to heal the nerves and hopefully get your mind and body back in some sort of order is b12. Again, the one injection every 3 months which they would grudgedly agree to will not heal the nerves merely have you kept at minimal state and probably get worse. When you are desperate and one of the symptoms is insomnia you do a lot of research. The gps knowledge is general, they know only a little. I hope you get sorted out soon and make progress with your treatment. Kind regards.

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Insomnia is already a factor :-(

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It's the law in the UK that you are entitled to see your medical records. Only by court order can they be refused. Policy has nothing to do with it.

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Can I add that your GP should know this and if this deteriorates you must consider reporting the surgery to the CQC and making a complaint to the practice manager.

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