Just back from my doctors appointment doctor gave me a lecture about my diet and said if I don't improve I can have nerve problems told her I follow a balanced diet and she concluded that because I don't eat enough fish is why I am b12 deficient. Suggested to her about the pernicious anaemia and she totally dismissed me and said there was no sign of anaemia and to keep taking the tablets and to get blood taken again in 2 months. Don't know what to do I'm quite upset because everything I've read suggests the diet aspect of the deficiency is only really towards vegans and vegetarians. Should i get a second opinion or just wait the two months ?
Doctor dismissed my pernicious anemia... - Pernicious Anaemi...
Doctor dismissed my pernicious anemia claims.
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Xxvickieexx
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If you have the option of getting a second opinion, I'd suggest it. I take it that you've had a blood test showing your serum B12 level was low and you were prescribed tablets to take. Was there a follow up blood test to see how much improvement the tablets made? If not, getting that tested could be helpful. Especially if it shows little to no improvement, because that indicates that you're not able to absorb it from the tablets.
If you were retested by your current doc and she's saying there is no improvement but is still refusing to do anything other than tell you to eat more fish, then your doc is the problem and getting a second opinion is even more important.
Yes sorry posted the other day on here about getting a prescription of 5mcg cyanocobalamin and folic acid after I went for blood tests because of numbness and pins and needles down my left side I went to the doctor to talk about the results and she is saying it is my diet but I told her I follow a balanced diet I eat a fibre cereal and eat meat 2-3 times a week and because I said I don't eat much fish she said this is the reason she said there is no way it can be pernicious anaemia because i am not anaemic, she told me if I don't fix my diet I can end up with permanent damage and to come back in two months to see if my levels have went up. I just feel like it's definitely not my diet and leaving it as long as 2 months is going to make it worse .
She is right about the possibility of permanent damage. But not because of your lack of fish, but because she's not giving you the treatment you need.
You are in danger of Sub-Acute Combined Degeneration of the Spinal Cord - pernicious-anaemia-society....
If you can't get her to see some sense then please get a second opinion. Don't wait two months for another irrelevant test. Get an emergency appointment. Giver her copies of the BCSH Guidelines - bcshguidelines.com/document... and tell her you want a course of treatment as outiled in the BNF - loading doses every other day until syptoms stop improving, then one injection every two months.
Tell her you're worried about spinal cord degeneration (give her a copy of the PAS document). Secretly record the conversation so you have some evidence of her malpractice when she tells you that you can't possibly suffer from that.
Your doctor is an idiot.
While fish is a very good source of B12, it's not the be-all-and-end-all. If you're eating even a bit of meat then you're taking in more than the recommended daily amount of B12. The RDA is 2.4 ug per day. That will be found in 40g of beef, 2 bowls of Rice Krispies (with milk), 1 slice of liverwurst, 2 pots of yoghurt, 200g of bacon, 100g of lamb, 75g swiss cheese, 3g of liver, 35g of reindeer, 4 slices of salami, or 3 eggs.
Add in a little bit of fish especially oily or shellfish (8g of oyster, 25g tinned sardines) and it's quite easy to get over the RDA.
And the body is pretty darn good at storing B12. So eat 2 smoked mackeral that'll give you about 10x the RDA - and it will all be absorbed and stored in the liver - from where it will be released back into the gut and re-absorbed. This recylcling smooths out the peaks and troughs of what you consume. That's why it's only vegetarians/vegans that don't eat foods with supplements (like breakfast cereals) that have B12 deficiencies without an absorption problem.
However, if you have absorption problems (such as PA), not only do you not absorb the stuff you eat, but the stuff the liver pumps out isn't reabsorbed. Which is why you need to get it into the body via an alternative route.
Your doctor's insistence on the necessity of showing signs of anaemia is old hat. It's been known for quite a while that people with B12 deficiency don't always have macrocytic anaemia.
Actually, I bet your doctor is so stupid that she didn't even do a Mean Cell Volume analysis because she thinks that iron-deficient anaemia is the only type of anaemia.
Have you had a full blood workup with MCV and other parameters measured? If so, what were the results?
I was initially tested for a thyroid problem but recieved a phone call to pick up a prescription was never really told why I was getting them and did my own research on the medication. I haven't been told any results was only told that my b12 wasn't 'that'
Low apparently and wasn't told what the folic acid was for. I have a small gp surgery and am afraid if I go for a second opinion they will also shoot it down because she has already given me medication.
You should ask for a print out of your lab test results (and ask they include the lab's reference ranges). If they ask why, just tell them you have decided to take an interested and want to keep a copy for yourself. You're perfectly entitled to your own results. They may charge a small fee for making the copies, but it is worth it. If you are puzzled by some of your results you can always ask here and we can try to help.
Hi, i suggest you get a copy of your blood test and see what your b12 result was. I would also question why you have been prescribed cyan in the first place if she says you dont have anemia.
As you will see by other posts many suffer from gp 'neglect' and self treat if only to see if self medicating makes a difference.
My own gp refuses to accept that the symptoms i have are anything to do with my recent diagnosis of b12d but its funny how since taking my own health in my own hands as it were, there has been a definite improvement - even with the tinnitus which i have suffered with for four years has diminished significantly.
Gambit62Administrator
I would definitely go for a second appointment but would talk about a B12 deficiency caused by an absorption problem rather than pernicious anaemia. Pernicious anaemia is one cause of B12 deficiency but is far from being the only one. Others include gastric surgery, lowering of acidity levels (generally as you get older), and drug interactions (including PPI, metformin, NSAIDs ...).
Anaemia is NOT a definining characteristic of B12 deficiency though given how confusing things like the NICE guidelines are its a red herring that is easy to understand. Significant numbers of people present with neurological symptoms before anaemia becomes obvious - particularly if folate levels are good.
Also, it is B12 deficiency that causes the neurological problems - not anaemia.
You could try getting hold of a copy of the B12 deficiency survival handbook or one of the books produced by the PAS and presenting it to your GP as reading for their professional development.
There's a very good article in the British Medical Journal - cmim.org/pdf2014/funcion.ph...
It says...
"However, it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay"
They certainly can - I am completely debilitated without lots of B12 all the time but tests do not show PA and the amount I take put my readings off the scale.
I'm reading this with interest, I was diagnosed as b12 deficient about a month ago. My GP ran loads of blood tests, and suspected the defiancy was due to diet. I was adamant this wasn't the case, as I'm not vegetarian/vegan. But GP prescribed b12 supplements and told me to come back in two months for a blood test.
The b12 supplements didn't make me feel better, and I ended up in A&E on New Year's Day, the numbness/tingling got so bad that my husband thought i was having a stroke. The hospital ruled out a stroke, did a blood test, and interestingly it showed that since starting b12 supplements my blood results had risen from approx 150 to 214 in the space of a few weeks. This ruled out an absorption problem, and made me think my GP had been right about diet, as clearly my b12 levels increase if I swallow b12!
I saw my GP yesterday, she's pleased my levels have increased, but offered injections to give me a boost, to speed my recovery. I had my first injection today, and already feel less faint. We discussed my diet, and whist I eat meat I don't eat fish ........ Obviously I can't dispute the blood tests, and I clearly respond well to supplements. I may ask to see a dietician, as there's clearly a gap in my diet somewhere.
You can only get b12 from animal products - not fish. Also if you have started supplements you will get false results in the future. You have to be off all b supplements for 4 months to get a true reading
I thought that too but some fish is quite high and some shellfish is very high.
Perhaps there's a "Red Herring" in there somewhere jodunn 
Fish is an animal and some forms of fish - particularly shell fish - are extremely good sources of B12
#1: Shellfish (Cooked Clams)
Vitamin B12 in 100g3oz (85g)20 small clams (190g)
98.9μg (1648% DV)84.1μg (1401% DV)187.9μg (3132% DV)
Other Shellfish High in Vitamin B12 (%DV per 3oz serving cooked): Oysters (408%), and Mussels (340%). Click to see complete nutrition facts.
#2: Liver (Beef)
Vitamin B12 in 100g3oz Serving (85g)Per Slice (81g)
83.1μg (1386% DV)70.7μg (1178% DV)67.3μg (1122% DV)
Other Liver Products High in Vitamin B12 (%DV per 3oz serving): Liverwurst Sausage (189%), Paté de Foie Gras (133%) and Chicken Liver Paté (114%). Click to see complete nutrition facts.
#3: Fish (Mackerel)
Vitamin B12 in 100g3oz Serving (85g)Per Fillet (88g)
19.0μg (317% DV)16.2μg (269% DV)16.7μg (279% DV)
Other Fish High in Vitamin B12 (%DV per 3oz serving cooked): Smoked Salmon (257%), Herring (186%), Tuna (154%), Canned Sardines (126%) and Trout (106%). Click to see complete nutrition facts. For more see the article on Canned Fish High in Vitamin B12.
and if you can afford it...
Caviar (Fish Eggs)20.0μg (333% DV) per 100 grams3.2μg (53% DV) per Tablespoon (16 grams)
Source =
clivealiveForum Support
Please don't let the doctor "fob you off" Xxvickieexx
My doctor told me that in order to avoid dying within the next two years I would either have to eat raw liver three times a day (not sure whether that was before or after meals :v) or I could have four weekly injections of cyanocobamalin for the rest of my life.
Much as I love liver (with onions & gravy) I opted for the injections - that was 44 years ago and I'm still "clivealive" coming up to 75.
Seriously though, take the advice of the more learned folk on this forum and calmly present the facts to your doctor.
I wish you well for the future and hope you get the treatment you need.
"Suggested to her about the pernicious anaemia and she totally dismissed me and said there was no sign of anaemia"
Have a look at this link from the NHS Choices website. Perhaps your GP would be interested in seeing it.
nhs.uk/conditions/Anaemia-v...
It mentions that people can have symptoms of B12 or Folate deficiency without having anaemia.
"Don't know what to do I'm quite upset"
Have you rung the PAS? They are helpful and sympathetic. If you leave a message they will get back to you within a few days. They are used to hearing from people who can't get adequate treatment or a diagnosis and may be able to tell you where to get useful information.
pernicious-anaemia-society....
01656 769467
Office open every day except Sundays between 8am and 2pm
This link has suggestions for writing to your GP when you are not happy with your treatment. The site is run by a B12 defiicency sufferer and has lots of useful info.
b12deficiency.info/b12-writ...
I gave a copy of the "BCSH Cobalamin and Folate guidelines" to my GP. Have you read this document? I was told that the NHS should be following its recommendations.
If I had to give my GP one page from this document I'd give them page 29, a diagnosis flowchart. I think this page gives guidance on when to carry out an IFA test and when to start B12 treatment. It also mentions antibody negative PA, so confirms that some people can have PA even if IFA test negative.
Fbirder mentions MCV. I keep track of my MCV and MCH results on the FBC (Full Blood Count), I would be very surprised if your GP has not carried out the following basic tests ferritin, folate and FBC. High MCV and high MCV can indicate the possibility of macrocytosis (enlarged red blood cells)
patient.info/doctor/macrocytosis-and-macrocytic-anaemia
patient.info/doctor/pernici...
Low B12 and/or low folate can make the red blood cells bigger. Low iron can make the red blood cells smaller. A patient with both conditions may have red blood cells that appear to be "normal" size and a GP may miss problems. Macrocytosis can be masked in someone with low iron. Macrocytosis due to B12 deficiency can also be masked in someone who is receiving folate supplements.
patient.info/doctor/folate-...
Important info in Managements ection.
"Should i get a second opinion or just wait the two months ?"
I have read that untreated or inadequately treated B12 deficiency can lead to permanent neurological damage. The most recent documents make it clear that symptomatic patients should be treated.
BCSH cobalamin and folate Guidlines
I found it useful to track down the B12 deficiency mangement guidelines in my local NHS area. Some of these local guidelines have not been updated since the BCSH cobalamin guidleines came out.
If the NHS guidelines in your local area have not been updated for several years it could explain why your GP is reluctant to consider PA when you do not have anaemia and has given tablets rather than injections. it might be that this is a part of local guidance.
Local guidelines on B12 Deficiency management may be found by an internet search, a search on local NHS website or a FOI (Freedom of Information) request to local NHS website.
The CCG (Clinical Commisioning Group) for your area should be able to tell you if the BCSH Cobalamin and Folate Guidleines are being followed in your area. Not sure what the equivalent to CCGs are in Wales. Scotland and NI.
I'm sorry you have had such a bad experience. The Cyanocobalamin tablets usually prescribed by NHS would not be adequate treatment for neurogical symptoms and, as others have pointed out, risks further damage if left any longer. I, personally, would write or email the surgery the latest BMJ research document, which has a useful summary, as it's more than likely this patronising GP will not bother to read the whole document and needs to know the information marked **.
cmim.org/pdf2014/funcion.ph...
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
**It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
The above BMJ research document is supported by many research papers and is peer reviewed.
It also tells GP (bottom of page 4 under, "How is response to treatment assessed") :
**"Cobalamin and transcobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment and retesting is not usually required".
In other words, once b12 treatment is started, the serum B12 test results will be high and are not reflective of whether B12 is absorbed into the tissues - it is the clinical condition of the patient that is important.....
Thank you everyone for ur replies I'm not sure the doctor would take it very well if I showed her these articles but I will try and will try to ask another gp. If it is an absorption issue then will the tablets I'm taking also not be absorbed? Should I risk not taking the treatment so that when I'm retested if my count is still low that she has to do more investigation? Im only 25 from what I've read online it's not common for people my age to have this deficiency.
The tablets will be probably be absorbed enough to raise your levels as a small amount can still be absorbed even if you have pernicious anaemia - but the longer you leave yourself with low levels the more damage you will do to your body. The ideal would be to make a new appointment as soon as possible and try to get this sorted out.
It would be a good idea to ask for a print out of the original B12 result for your records. With a low result and the neurological symptoms you are experiencing, these tablets are useless and, with folic acid will only mask and confuse the issue. You need adequate injections without more delay.
Sally Pacholok writes in "Could it be B12?", in bold letters,
"It's up to patients and families to be assertive" !
My relative's GP originally tried to fob us off with Cyanocobalamin tablets and are now admitting they don't work.
Dont know what B12 levels and iron/ferratin were but if concerned get a second opinion maybe another doctor will listen and be more helpful.
"Im only 25 from what I've read online it's not common for people my age to have this deficiency"
The PAS has members who range in age from toddlers to those in their 80s or older.
What are your symptoms? I too had the same reactions from my doctor even though I had a very red tongue, fatigue, diarrhea, fading away and affecting my sense of smell ( I smelled odors from long ago, like something my aunt would cook). I was diagnosed with b12 deficiency four years ago and started on b12 shots, They help a great deal but did not last long - I asked to take the shots every three weeks. I then went on b12 tablets and then everything fell apart. My b12 level was tested and showed that it was higher than 1500,
After going on the tablets my symptoms became much worst than before; therefore, I had to stay home. No matter how much I saw my doctor, hematologists I was shown the door. I was treated like a liar. I was beside myself.
My husband and I were ready to go to the Mayo Clinic in Minnesota, then I saw a doctor who listened to me and put me on b12 injections every week and all my symptoms disappeared.
Pernicious Anemia and other B vitamin illnesses run in my family.
I initially went to the doctor to get tested for a thyroid condition symptoms I had been having was pins and needles and numbness down my left side as well as fatigue a few weeks before Xmas I got a call to pick up a prescription for pills and only knew it was a b12 deficiency from researching the names online. I have requested my blood test results and hoping to see another doctor as I definitely do not think this can be diet related
I've at least been lucky that I was diagnosed and treated with injections by my doctor. However, I never really improved and was getting worse. I did my research and decided to try the skin patches. After using 3 a week, I saw an improvement after 2 weeks a nd kept going. I had my 3 monthly injection on 10th December so stopped taking the patches. - BIG mistake. Two weeks later I was almost back to square one, so I'm now back to loading myself back up.
There are different types of b12. Cyanocobalamin is cyanide based, so you don't want to take a lot of that.
Hydroxocobalamin is generally the injections the NHS uses. The body should convert that to the next form.
Methylcobalamin is ready for the body to use, which is the type in the patches I use.
Patches have been good for me but I've just ordered methyl lozenges to use on the days in between patches to give them a try.
You just have to work out what's best for you, usually by trial and error.
The amount of cyanide released by 1000ug of cyanocobalamin is minuscule - roughly the same as in 5ml of prune juice.
There's also adenosylcobalamin.
Got my test results today could someone tell me what they mean?
Serum b12 196.6
Serum folate 4.20
Serum ferritin 66.1
Hi Xxvickieexx
Do you have the reference ranges to go with the results? And the units of measurement?
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