I went back to the GP today. I wrote a letter to the practice manager after the last experience, she booked the appointment and said she would come in with me. She didn't even show her face. I took the information I have been given in response to previous posts and the GP said it was all a red herring, there are lots of people with the symptoms I reported and they are caused by any number of different things. He would not entertain any of the information I had, even the NICE Guidelines, because I do not have Pernicious Anaemia. So what do I have? My b12 was low until I had the loading dose, my folate is low, my iron stores and MCHC are low. I have constant fatigue, tinnitus, heart arrhythmia, dizziness. I felt like a new woman, like the old me, after the b12 loading dose.
The GP said it wasn't the b12 causing the symptoms because they returned within two weeks of the loading dose. He says I do not have Pernicious Anaemia. When I asked what I do have then he said he didn't know. I told him about the missing heart beats, not just now and then but constantly. He got out a book and showed me pictures of ecg tracings and said it is normal to have an irregular heart beat. He said my ecg was normal. It was on for a minute at most. Good that it was normal but what can it pick up in a minute? He is still sticking with the psychological cause. It is all psychological. There is nothing wrong with me. Is an irregular heartbeat normal? My husband's isn't irregular.
He gave me a different iron tablet, Ferrous Glyconate, but I have to take one a day and on the manufacturers guidelines it says to take between 4 and 6 daily so I am not expecting it to do anything. That's because I told them the Ferrous Fumarate was giving me really bad stomach pains. The practice nurse said "Well stop taking it then." So I did. So here I am, feeling like the lowest of the low, feeling very unwell, feeling uncared for, still unmedicated apart from the above iron, which isn't going to make any difference. What can I do? I really do feel like putting an end to it all. This is no life, and there is no prospect of it getting any better. Does anyone have any information about exactly what Pernicious Anaemia actually is and how the GP is so sure I don't have it? Any advice on what to do next? I know I need to change GP. But how do I know they aren't all going to be the same? If I don't have PA they aren't going to treat me for it. So will I be any better off?
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Dee215
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Sorry to hear you've had another bad experience. Whatever the cause of your B12 deficiency, once you've had treatment, the level in your blood serum will rise - this does not necessarily indicate your body has enough B12 - all of the various guidelines that exist in the UK mention this.
The GP should have continued your injections for every other day until there was no further improvement in your symptoms.
It is certainly possible for symptoms to return so soon after loading doses, that is what happened to me and many others on here. Unfortunately many also have similar experiences with GPs.
Thankfully there is a lot of support on this forum, and self-treatment is possible.
Technically, pernicious anemia is an autoimmune condition where the body's immune system attacks either the parietal cells that line the stomach and produce intrinsic factor, or it attacks the intrinsic factor itself. The end result is that the person is not able to absorb B12 from food. That results in B12 deficiency.
'B12 deficiency' is used as an umbrella term to encompass not just the autoimmune condition but also any other cause that results in B12 deficiency. Some other causes are gastric bypass surgery, certain medications, H. pylori infection or other parasites, or a vegan diet.
With the except of a vegan diet, all other causes also impact the body's ability to absorb B12, which means injections are the best method for correcting the deficiency regardless of the cause. (Vegans can either change their diet or take oral supplements to recover. They don't need injections.)
So, unless you are vegan, your deficiency is most likely due to an absorption problem. Pinpointing the exact absorption problem can take quite awhile. In the meantime, your doctor should be giving you injections to continue to correct the deficiency.
The GP is firmly of the belief that my b12 is high now so the problem is corrected, and the fact that I still have symptoms proves that they weren't caused by b12 deficiency in the first place because my b12 is high now. I have tried to explain, to share the information I have obtained through this forum but he will not entertain it.
It takes a long time for the symptoms to go away. Can easily and most likely more than a year. You must keep the B12 up. Nerves that are dying and damaged are very slow to heal. If your levels of B12 are up now, one shot a month will keep them up which will allow nerves to heal. Nerves that have been destroyed will not heal. Some symptoms left for long periods of time do not go away completely. I kept irregular heart beats but now I am on carvedalol (may not be spelled right) which is used for blood pressure, it is a beta blocker and it has calmed my heart down very well. Just ask your doctor to prescribe B12 shots and stick with it for a year and see how it goes. You can pay for it yourself, it's not too expensive. or at least keep taking sublingual, some people say for them sublingual is not good enough though. Good luck.
Not sure what sublingual is? Gp won't give me B12 injections because he says I don't have PA so I don't need them. I know I need to change surgeries. Need to ask for my medical notes first. Not sure I actually want to know what they have written about me but I need to for a fresh start
sublingual is a pill or liquid taken and held under the tongue. It absorbs through the blood system that way. In America you have a right to ask for all of your records for free anytime. It is free the first time. I got my records from the hospital and all the doctors with no problem and no charges. I live in America though.
Some doctors don't appear to know the difference between a normal B12 and a theraputic B12. Once you start on injections the level can be above range, that does not mean you are getting too much, nor does it mean that you do not require more injections.
Once a B12 deficiency has been established loading doses should be commenced followed by a regular maintenance regime which can vary for all of us.
A good GP would consider your symptoms as well as your numbers, unfortunately, often this is not the case.
If your GP cannot diagnose you, then ask for a specialist referal. Take someone with you so that you have a witness to your request.
In the meantime you could try sublingual B12 as you don't really know the cause. However, it might not work for you but perhaps it's worth a try?
Pernicious Anaemia is a form of B12 deficiency . PA is an autoimmune condition. Antibodies in the blood destroy the production of an amino acid called the Intrinsic Factor , which is needed to help B12 to be absorbed . In the same cells where the I.F. is produced , stomach acid is also produced , This is also depleted by the action of the antibodies . The stomach acid is also needed for absorbtion of B12 and other nutrients .
B12 deficiency has other causes . A vegan or strict vegetarian diet can lead to B12 deficiency .as B12 is only found in meat , fish , eggs and dairy products. Certain diseases like Chrohns , celiac , gastritis , lupus , Graves can cause B12 deficiency . Also fish tape worm from raw or insuficiently cooked fish . Some medicines can lead to B12 deficiency ---eg contraceptive pill , PPIs, metformin ,and others . Oral supplementation can help these cases . But usually PA patients benefit only from B12 injections . and need them for LIFE .
Have you been tested for I.F.A. ? It is unfortunately a very unreliable test . If you test positive you do have P.A. . But if you test negative you could still have PA .! But it's worth having a test . There are other tests but some surgeries don't do them (expense ) there is the MMA test and homocysteine test.
Thank you. I haven't been tested for anything specific. I posted the latest blood tests I had on a different post a week or so ago. I don't take the contraceptive pill or any other medication, I am not vegetarian, I eat a varied diet including meat, fish, eggs and dairy products. I am completely stumped as to why he said so categorically I do not have PA. I don't know how he has come to that decision and what evidence he has. He has not done any specific testing. He said my original blood test showed b12 was low but not deficient. Whatever that means. They decided to give the injections, I had never heard of b12 deficiency or injections before then. I have had the symptoms for a long while, but have only been treated for depression. But I felt great after the loading dose. Really like a new woman. It was amazing to get my life back.
Is there a way he can say so categorically I don't have PA? Especially when he has no other explanation?
I don't see how he can say that, if you have had no tests done . You could ask him to explain the science behind that assertion . The fact that you improved so much after injections says it all . He should also know that up to 80% of the measured B12 in your blood sample can be inactive B12 which your body cannot use. You could try changing your doctor . If you are a member of P.A.S. they could intervene on your behalf and write to your doctor . Failing all that , self inject ( I do ) If you decide on that, come back here and you will get help as to what you need and how to get it . Best wishes to you .
Have you requested copies of your lab results? It's a good idea to get print outs that include the reference ranges so that you can see the same thing the doctor is looking at.
It sounds as if you have more than one deficiency. B12 deficiency and folate deficiency both cause macrocytic anemia. In macrocytic anemia, the red blood cells become larger than normal. Iron deficiency causes microcytic anemia. In microcytic anemia, the red blood cells become smaller than normal.
The thing your doctor might have missed is that when you have both macrocytic and microcytic anemia, the standard blood tests can be fooled into looking like there is no anemia at all.
The Mean Cell Volume (MCV) test is an average of the cell size. That's useful if you have one kind of anemia because it will show that cell size is skewing either large or small depending on the type of anemia. However, when both anemias are present, the average comes back looking normal.
It sounds like you are not likely to get anywhere with the doctor you saw. Is there any chance you could see a different one? If not, I recommend taking a friend or family member with you into the appointment so that they can bear witness to the exchange and also give their feedback about how much improved you were on injections.
I know how aggravating it can be to butt heads with a doctor. I would be tempted to tell that GP that he needs to prove the problem is psychosomatic before he dismisses it. He won't be able to prove it unless he tests you for everything under the sun first. If you do go back to see him, you need to be firm with him that you're not just imagining things and that you want answers.
There are two approaches a doctor can take when they don't know what's wrong with a patient. They can either treat the symptoms while not knowing the specific cause. Or they can wait and do nothing while the patient worsens and the cause becomes more apparent. It sounds like your doctor is opting for the second option over the first. That would be understandable if your lab work did not show any deficiencies. It sounds like he should be paying more attention to the tests that he's already run and treating your symptoms even if he doesn't believe it is PA.
I posted the latest blood test results on another post a couple of weeks ago. It shows MCHC as below the testable limit. Folate 4.2 when deficient is 3.9, can't remember the rest .
The situation is not so much aggravating as depressing. It is really getting me down. Which is fuelling the gps fire that I am depressed and all the symptoms are psychological. I am depressed, there is no doubt about it. But it is this situation that is causing it, not the other way round.
I looked at your previous post with your test results. I'm baffled by your doctor's response (not as much by his response to the high B12 level after treatment, because there are a surprising number of doctors who are unaware that serum B12 will undoubtedly rise after injections - that's the point of giving injections!).
What stands out to me, and I am not a medical professional just to be clear, is the low hemoglobin and ferritin levels from the first tests. After 3 iron pills a day, your ferritin only increased from 17 to 32. That's not much of a change. Unfortunately you are probably not quite anemic enough to be able to convince a doctor that you should have an iron infusion.
The other thing that I noticed is that your folate level dropped quite a bit between the first and second tests. I would think this is because the added B12 was using the available folate for blood cell production. When you were on loading doses your body was finally getting the components it needs and making use of them.
Doing nothing is a very risky option. I would ask him to attach a copy of the British Committee for Standards in Haematology 2014 guidelines in your notes and explain that you would like him to record why he has failed to follow this simple and explicit guidance. A concise summary of the main recommendations is in Martin Hoopers excellent book What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency. It is on page 261-2. I photocopied this as it is a very brief authoritative source of accredited information.
It would be useful to have it recorded on your notes that he has ignored thes best practice guidelines and your very troubling symptoms and obvious desperation for treatment. Tell him you will keep a record of the consultation and the guidelines for future reference should it become necessary!
Please don't feel like you have to end it all. You are definitely not alone and you are certainly worth far more than one ignorant doctor's God complex.
B12 deficiency is a horrible condition, but it is very easily and cheaply treated with complete safety. The only difficulty is in finding a doctor who knows as much about it as you and who is prepared to follow the best practice guidelines!
I've just started self treating. As a doctor I have encountered the same attitude as you and I'm not prepared to be dictated to by a professional who shoul know better.
Be strong! Keep up the good fight! You will win against all the odds and help others avoid going into battle when they feel so incredibly vulnerable too. You will regain your health and vitality and life will feel good again. Hang on in!
See my post on Rachel Platten's Fight Song. Belting it out along with her works wonders in firing up your determination. You only have to read this forum to know you are not alone. We are all encountering this arrogant nonsense. It's enough to make me start singing! Perhaps you could sing the Battle Hymn of the Republic as an encore!
Everything birder1 says! Been where you are, actually wondering if same GP! But now I SI and I am nearly back to normal... when you're strong enough again, you can make a formal complaint against him - that fantasy keeps me going ! I changed surgeries but didn't tell the new one I SI until I'd learned what I now know from this website and was strong enough again to deal with any rubbish on the subject of B12!
PAS tel no +44 (0)1656 769 717 answerphone available.
If you suspect PA it may be worth joining PAS, costs about £20 a year. There are stories on Martyn Hooper's blog about how PAS has supported members trying to get a diagnosis/correct treatment.
Flowchart outlines when PA and Antibody Negative PA should be diagnosed.
I had many of the typical symptoms of b12 deficiency for years. I also had the "it;'s psychological" comments. I was told "Your symptoms are due to depression" but I kept trying to say "I'm depressed because the symptoms mean I can't do the things I want to do"
When I exhausted all possibilities of NHS B12 treatment I chose to self treat as an absolute last resort.
Might be interesting before you change surgeries to get a set of medical records to see what has been written about you in past......can be very illuminating...
I did finally find a GP practice I was happy with, not perfect but so much better than before.
You have the legal right under the Data Protection Act to ask for your notes to be amended if they are factually incorrect and you can ask for your own note to be appended to your record if you disagree with what it says. You can provide a simple medically respected guideline (see my post above) to be added along with a simple statement that your symptoms were so severe you felt suicidal, but that treatment with B12 was denied, in contravention of those guidelines. This should concentrate his attention adequately!
I agree with all the good advice you have been given above. I had the same problem with iron and I had a very understanding GP who prescribed liquid iron which is much gentler on the stomach. It is more expensive for the NHS as the prescription charge doesn't cover the cost, but it does help as I am mainly fine taking it and I have to take it everyday. It is worth a try if you haven't already.
Good luck and don't give up. I was also informed it was psychological until I was referred to a psychiatrist who told me I was the most sane person they had ever had referred to them! It took me finding an understanding GP who wanted to get the bottom of what was going on so it may be you need to change yours?
Hi Dee125 so sorry to hear your going through this i have been ill for quite some time possibly 5 + years. I went the doctors for an ovarian cancer blood test as i had all the symptoms, then collapsed & was in hospital 3 nights, i was then called back to have Vit B12 & folic acid bloods done which came back very low then had to have my antibodies checked which have come back abnormal i have to wait another week & a half to discuss the results with the dr even though i am extremely unwell, passing out, chest pains, palpitations, severe pins & needles in hands & feet, bad memory/loss, severe fatigue & generally just not on this planet. (copied from my post) i still haven't started loading B12 or been told whats going on i'm so ill & worried sick that my heart is straining as i have bad chest pains daily with palpitations & racing heart too. Some of these wonderful people suggested getting a copy of your test results so you have a record & keep getting them when you have more bloods done.
I really hope you get sorted & try not to despair your life is worth living you just need to get the right help & sack that GP off.
Thank you Donna. I am gutted that anyone else is going through this too, but this whole forum has literally saved my life. The heart stuff is the scariest thing for me. It feels like there is a box of frogs in my chest, all jumping about randomly. The gp didn't even listen to my heart or even take my pulse, just showed me some pictures of ecg tracings in a book and said it's normal to have an irregular heartbeat. I am sure it isn't normal to have chest pain and shortness of breath and dizziness. He said it will only cause dizziness if your heart stops for 5 seconds between beats. What's that all about?
I am terrified I am going senile, can't remember things from one minute to the next. Tinnitus is driving me mad. He didn't even listen to what I had to say. Just feel so low. I hope you get something sorted soon. A lot of people on here self inject. It's a scary prospect but if it gives me my life back it's a step worth taking. What do you think? I said before, I had the loading dose and felt like a new woman. If the gp won't give it then go get it yourself. Read all the fab advice I have been given. I hope you can get some help
I don't have perniciousness anaemia but I do have b12 deficiency which, I believe can lead to pa but is a condition in its own right. I had most of your symptoms until I was given the b12 shots over a year ago and, like so many on this forum, received highly unprofessional responses from every medical person that I have spoken to.
I received b12 injections every 12 weeks - my practice refuses to do them every 8 weeks which they should do give that I have neurological symptoms.
I get through the 12 weeks between injections with repeat attacks - usually a day or two after the injections and then after 6 to 8 weeks.
Although I had numerous symptoms before I was diagnosed I now get what appears to be a 'signature' symptom - my body goes into shock, tinnitus begins - it lasted about 7/8 seconds then a feeling of euphoria and then it is over.
These symptoms are changing and often now I just get the beginning of the process but it stops before the tinnitus.
I now live on the basis that what doesn't kill you makes you stronger.
Good luck because it seems like long haul until full recovery if that is ever reached.
I'm looking back through your comments and can't see what treatment you are on for B12 deficiency now. I see you received the loading doses but are you now receiving injections every 3 months?
My story is very similar. I had a number of issues that were getting worse but it was stomach problems that led the doctor to discover that I had low B12. I received my loading doses and felt incredible for about 12 months. Then the symptoms started returning and I found myself counting the days until the next injection (particularly for the last 5 weeks) which was when I joined the PAS and started researching.
Then followed a meeting with my doctor which sounds almost identical to yours. "You do not have Pernicious Anaemia. You do not have macrocytosis therefore you do not have PA!" It was at this point that I decided to start self injecting.
My energy levels haven't completely returned to where they were and I do still feel like I crash when I over exert but in general I have seen a huge reduction in my symptoms. I find myself returning from work and organising cupboards or doing minor jobs around the house just because they are annoying me. Before I didn't have the energy to care.
If you are not prepared to SI I would strongly suggest considering changing your GP. Living with this condition is not living and if they are sure it isn't PA then they should be investigating what is wrong.
You are so right that living with this condition is not living. He won't give me any more B12 because he says my levels are high now and I don't have PA so I don't need it
None at all? Not even the three monthly injections??
Even people whose shortage is down to diet have some sort of plan going forward. The majority of GPs seem to look at loading doses then three monthly injections as a 'one size fits' all solution but to give you no additional B12 treatment without ascertaining the cause seems dangerous.
I would certainly be looking to consult with a different doctor.
It has always seemed so sad to me that some of these doctors seem so invested in proving that a patient is just psychological or making up symptoms. If they spent half that energy just listening to the patient and focusing on the basic building blocks of health we would have a very different outcome. Unfortunately there are so many patientswho become traumatized by the medical care they recieve. I went through this for years before my diagnosis it really changed me as a person and has taKen years to recover from the experience. There is nothing more empowering then the belief that your body can heal. Make sure you are eating a very nutrient dense diet and doing meditation or something that helps you to relax. Being sick and dealing with all the doctors is very stressful. I decided to see a reiki practitioner as a last resort and it was the best thing I did because she gave me hope that i would heal and be able to raise my children. I would definitely try to get in to see a gastrointestinal doctor you sound exactly like the symptoms I had before being diagnosed with celiac. You must have some type of malabsorption problem if you are eating a half way decent diet you would not have multiple deficiencies. These deficiencies can cause severe symptoms unfortunately most doctors have no training in even the basics of nutrition. Current medical training is really just pharmaceutical training. It is very difficult for basic doctors to understand the lab results for a patient who has b12 and iron deficiency as they compete with each other for blood cell size. Please do not loose hope the human body and spirit are incredibly resilient and capable of healing. I wish you well on your journey to health.
Doctors in my day were trained clinically by taking a history and examining (clerking) a patient on the ward and presenting the case to the consultant having thoroughly researched the text books and literature for a differential diagnosis, appropriate investigation, treatment and prognosis. We were humiliated in front of all the other students if we missed something important or got it wrong. You soon learned to listen to the patient and understand all of the relevant issues.
I think doctors now are trained by being given printouts after lectures and seminars without really having to engage their brains in a full study of the patient's problems. If the printout is unhelpful and inadequate, as in B12 deficiency and pernicious Anaemia, then the patient will be obliged to fit into the wrong tick box. The proforma can never be wrong, but the patient can be deluded, hypochondriacal, depressed, demanding etc etc.
Our starting point was the patient, they start from a proforma into which the patient can be slotted without engaging any brain cells in the process.
I'm sure we all agree. However, as a group we may begin to make a difference. We have to be assertive, but I suspect GPs will never look up complicated references. They should, but they won't! It's better to present them with a simple outline, such as they are used to. The summary of the guidelines of the British committee for standards in haematology produced in 2014 is a simple and authoritative guide.
Stay strong. With the help of this forum you can be empowered to ensure you get the right treatment.
This reminds me of a consultant who would ask students to tell him what they could see in a painting hanging on the wall of a medical high dependency unit. The painting depicted a scene of characters with Hormone related problems such as cretins and others with acromegaly . The students would tremble in their shoes then focus on typical thyroid symptoms or signs of acromegaly such as large hands and feet. Once they exhausted their list, the consultant would point to the white faces and say " they are all anaemic"! He would tell them to stop looking at the fancy stuff and concentrate on the basics. The students would all say that they learned a valuable lesson that day.
"I felt like a new woman, like the old me, after the b12 loading dose.!
The flowchart I mentioned in above post, makes it clear that if a person is symptomatic for B12 deficiency and responds to B12 treatment by showing clinical improvement (their symptoms improve) then B12 treatment should continue.
Don't know if you've seen this link below before but it gives ideas for writing letters to GPs about B12 deficiency. The person who runs website can be contacted by e-mail (details on website).
I agree, many doctors are completely ignorant to this. It took 5 doctors to figure mine out and they all said they had never seen anyone in my shape. Even my gyn asked me all kinds of questions. Women are too easily dismissed as needing counseling.
There is no possibility of overdosing in fact extra large doses of B12 are given to firefighters when they are exposed to cyanide gas with no ill effects. If your body can't utilise it you just wee it out. I suggest that you ask the Pernicious Anaemia Society for guidance. There is also a very good group on Facebook called the Pernicious Anaemia/B12 Support Group with some extremely knowledgeable people. Good luck.
You know years ago the Kennedy couple and others of their group used to get B12from a person called dr Feelgood as a means of keeping their stamina up not because of having PA .of course he was giving other stuff as well but around that time period people thought the substance gave them energy and got regular injections without any problems. How times have changed.Regulations are the order of the day.
Try to top up the other deficiencies, this might help to see what remains outstanding and help you fight your case.
You can buy folic acid tablets over the counter and they are not expensive. You already have an iron preparation and if your B12 is within normal range now due to the loading dose you should feel symptoms improving within a few weeks. If not, and your deficiencies return or don't improve at all, then you have grounds for further investigation. Hopefully, you will be referred to a gastroenterologist that will be more clued up on deficiencies. If your diet is good then maybe you have leaky gut syndrome?
Dee I've just came across your posts and I have been through a very similar experience.I have been told so much conflicting things from GP and was left in tears also.I had decided to self inject and was feeling much better then got a letter suggesting my B12 problem wasn't causing my symptoms.Long story but eventually she agreed to alternate day loading doses which I accepted to keep me in their radar but I will self inject again when they stop.If you self inject and start feeling much better then this will let you know that B12 deficiency is responsible for the symptoms that improve.B12 deficiency can definitely affect your state of mind and I feel free now.Hope whatever comes out of this that its the right treatment and you improve greatly.
Hi. Thanks for asking. I saw a different doctor, had more blood tests and am now having Hydroxocobalamin injections every ten weeks. Feeling much better. Shouldn't have to fight for your right to be treated but sometimes you do.
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