I saw my GP in October 2015 as I was suffering symptom of fatigue, pins and needles, feeling generally unwell. My sister and Nan both suffer with pernicious anemia and my sister advised me my symptoms sounded similar to hers.
I went to the GP, had a blood test and my b12 was below normal level (171) and had decreased from a blood test I'd had done in March 2015. I explained my family history and although he was unwilling, calling it witch doctory as the blood test for B12 is unreliable apparently, I was able to get him to give me a B12 injection. I began feeling much better.
February my symptoms started coming back, I went back to my GP and they gave me another blood test for B12 as well as testing the intrinsic factor. My B12 came back borderline (200) and intrinsic factor was normal. So the GP has said I don't have a B12 deficiency, despite how I'm left feeling they can't give me any answers. I'm only 27 yet have no energy, work is a big struggle, I constantly have a headache and am feeling so fed up.
I see a cardiologist in London and he has said that he can refer me to a specialist if I had no luck with my GP. So I am going to get copies of my blood test results.
However I just wanted to get some advice as to whether anyone has experienced similar? Am I B12 deficient and just have an unhelpful GP?
Many thanks
Lisa
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Lisam88
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Yes - I was monitored for a year with a blood test repeatedly coming back as 147 then 158. I was given 6 loading doses as a trial - 1st test after was 500 - so apparantly I was fine but allowed to monitor every 3 month. After around a year or so my read was back about 200 or 160 (bad memory) so I was given loading doses and been on 12 weekly injections since. Unfortunately when I broached the subject of more frequent injections I was told it was pointless- this is the new battle. Hope you get at least basic maintenance soon.
I am not a medically qualified person as are others on this forum who will give more detailed advice but it sounds to me that the answer to your question "Am I B12 deficient and just have an unhelpful GP?" is probably BOTH....!
You are not too young at 27 to have P.A. as I was 30 when I was diagnosed in 1971 although I suspect I had had it for a long while before then as I'd had two thirds of my stomach removed 12 years previously in 1959 when I was 17 due to a perforated peptic ulcer.
Gastric surgery is one of the main causes of P.A. but you don't mention having had that done to you.
A cause of b12d is diet but you don't mention whether you are vegetarian or vegan. The only "natural" sources of b12 are in animal meats, poultry, fish etc with raw liver and caviar especially rich.
Another cause of b12 depletion is if you take part in extreme exercise but you don't say that your do anything like triathlons or weekend marathons.
As for "inheriting" P.A. genetically, I cannot comment as I have no experience of it in my family although I believe that is a possibility.
Hopefully your low b12 levels are simply due to diet which can be easily remedied by eating more animal products but if the malabsorption is due to other "mechanical" reasons then you will need further b12 injections until they are remedied and if it is P.A. then you'll need injections for the rest of your life.
Tests for b12 are skewed once you have started supplementing but the four or five months which will have elapsed since your October injection and the next time you see your doctor should have depleted your level sufficiently to, if you have another test, give a fairly accurate reading.
If it is any comfort you are not alone out there as there are a lot of folk suffering as a result of their GP's ignorance of b12d and P.A. If you can "open his eyes" to how you should be treated you will be helping his next patients as they come along.
I do hope your doctor "gets his act together" quickly and starts giving you the treatment you need and deserve and I wish you well for the future.
I'm not vegan and eat a really heathy, balanced diet. Haven't had gastric surgery and my extreme exercise stopped 12 years ago when I stopped competitively swimming.
I'm hoping that my cardiologist consultant will step in and help in getting my G.P. to take notice as the more this goes on the more palpitations I'm getting.
I was diagnosed by the cardiacteam as I got angina which went when the b12 and iron were sorted. It was a rough ride. I feel blessed to be alive. Good luck x
I hear your frustration and I ve been there. But you are in a good position with your heart specialist. He can have your homocystine level checked . This will be elevated if your b12 is not adequate for your body to function well.
I believe I had symptoms of b12d in my 20's, I was struggling to work a full week. My gp at the time diagnosed. .... (wait for it....)....lassitude! Yes laziness! !
After two pregnancies and a very demanding job I ' hit the wall' ...
My b12 level was 76 (whatever Uk units). I ve always had borderline /low iron, but was also low in vitd, folic acid and more. You see , it was autoimmune gastric atrophy. B12 is only 1 of a number of things that can be wrong. Many minerals dont get absorbed in the gut. When your gp gives you vit b12 and your blood cells are ok, the tell you you have no anaemia. This is technically true. In reality that is only part of the problem solved.
Good luck , one step at a time. Get your diagnosis.
Hi Lisam. I suggest you look at the Pernicious Anaemia Society website for more information and a full symptom list. They can also help when a GP isn't giving you the correct treatment. My injections began when my level was 176, anything under 200 should be treated. Once you have begun injections further blood testing is usually not needed, apart from one about six weeks after your loading doses. ( loading doses are six injections over two weeks). This test is just to estimate how well your body is retaining the B12 you've been given.
If it is in the family, then there is every likelihood you will have it too. Please don't give up trying to get this treated, permanent nerve damage can occur if it is neglected. Best wishes MariLiz
I think these days the doctors haven't got time to sit and talk and listen to patience anymore, my partner has been having the b12 for 3-4 years now, every month, he got so ill, went to see his doctor, they told him he was fine, on the way home he collapsed and ended up being rushed into hospital, for 3 days his family thought he was going to die as he was so bad, but since then they gave him the b12 every month,he's been OK, but now we're thinking of self injecting as its so hard to get an appointment at his surgery, I think the problem is they are not all working from the same hymn book, I really need to find out who to write too about it as patients like my partner are suffering. I hope your health improves as you are still young, good luck
I'm definitely going to peservere to get an answer. I know my cardiologist will take me seriously given that my palpitations are getting more frequent. I think possibly my GP is weary because of my heart condition but it's frustrating that I've been dismissed. I had a sudden cardiac arrest at the age of 23, I'm not one to make a fuss & I do have a just get on with it attitude. I just wish the GP would listen and at least refer me if they aren't willing to help.
Thank you for your replies and support, it's good to know I'm right in my own diagnosis.
Hi, Do stick to your guns and persevere.... even if you do end up self injecting at least you will be one more voice speaking up and raising awareness. My doctor looked completely shocked when I asked for injections more often, to be honest he made me feel like a hypochondriac, but I did manage to convince him in the end and now I am on monthly injections. I ended up having to quote the bnf. good luck.
Unfortunately most GPS just don't know enough about B12 deficiency.
It is true that the B12 serum test is inaccurate but not in the way that your GP seems to have understood it - the inaccuracy is around the fact that significant numbers present with strong clinical symptoms of B12 well into the normal range - so the recommendation is to look at symptoms not test results. It may be true that some people actually don't have any symptoms below the normal range but it is a serious condition and needs to be treated promptly.
The problem generally occurs because something goes wrong in the ileum where 99% of B12 is absorbed - there are a number of things that can go wrong though the most likely from your family history and age is likely to be an auto-immune response - PA.
Many GPs are not aware of the range of symptoms of B12 deficiency and can be overly focused on anaemia and macrocytosis so will dismiss B12 as a possibility if this isn't present.
The amount of B12 you were given in October would be enough to keep someone who didn't have an absorption problem going for a year or more so the fact that your levels are now down to 200 does rather imply that you have a problem with absorbing B12. A normal person would be able to store B12 in the liver and then release it into the ileum for reabsorption in bile - so seems a bit much that levels would have fallen as dramatically as they have unless you have an absorption problem.
The normal treatment (in UK) would be 6 shots over 2 weeks followed by maintenance every 3 months - and this should be regardless of levels after supplementation has started - UNLESS the levels at 3 months continue to be low - implying that your kidneys are very efficient at removing B12 and passing it out in urine (most of the B12 you have in a shot generally passes out of the system in this way in the first 48 hours). Many people find that symptoms return long before 3 months (was originally one month and no clear scientific evidence for why it is now 3 months). Treating a B12 deficiency is a lot more complicated than treating levels in blood as it is also about getting B12 to the cells where it is used and levels in blood tell you nothing about what is happening there.
You might find it helpful to refer your GP to this subsection of the PAS site which is geared at medical practitioners. Hoping they aren't to arrogant to feel they can actually learn something so they treat their patients better in the future
Although B12 absorption does normally happen in the ileum, PA doesn't actually cause any problems with the ileum. The problem is in the stomach.
Normally the stomach produces Intrinsic Factor. When food is eaten the B12 is bound to proteins and is released when the protein is digested. The free B12 binds to the IF. When it reaches the ileum special transporter proteins pick up the IF, with the B12 attached, and carries it across the gut wall.
With PA the stomach doesn't release IF, so any B12 that reaches the ileum doesn't get picked up, so passes straight through. In addition, gastric atrophy reduces the amount of hydrochloric acid produced in the stomach - and that is needed for proper digestion of proteins. So less B12 is actually released from the protein molecules.
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