My teenage relative was given six loading doses of B12 after their level tested at 136. Iron levels were low normal folate normal blood count etc normal.
Three months after loading doses b12 levels were 288. Intrinsic factor anti body was not tested for as Gastric Parietal Cell antibody was negative.
Symptoms are tiredness inability to concentrate mood swings also excessive sweating forehead/back I don't know if that is related.
GP considers the case closed.
I'm having a few problems with my server at the minute.
I'm hoping someone will pop along and give you the link to the new BMJ article. If you look in the Responses section someone has posted regarding the sweating issue and b12 deficiency.
If you can print it all off (even though you will only get the abstract for the actual article) and give it to your son's GP, it may make him rethink the issue.
Sorry I can't provide the link, if I open another page everything crashes.
Thanks. The GPs are all part time so have seen a few and they all respond differently, but all seem to think because second reading was in the normal range no further treatment required!
The article is only a month old, Hensa - and I don't know if it's gone into the print version (which means more GPs will read it)
Word is getting out but it might not have reached your surgery yet.
I don't know quite know what you're asking - if the GPs consider it case closed, and you are somewhat in agreement with that, then I just get confused.
Marre provided the link to the article (and it leads to the responses section) so you can suggest your relative returns to the GP with the information (if they are not now already aware) to prove to them they may not be correct in their diagnosis because they are relying on the serum b12 test being accurate.
No, it is a battle talking to the GPs about it and the question really is what to say to them (I have a clearer idea since reading the responses in the link Marre gave)
I suppose part of my question which I realise isn't clear is about the Gastric Cell anti body test because this is negative they didn't test for intrinsic factor antibodies and I am wondering wethe to demand this or wether to say treat the symptoms anyway please because the tests are unreliable.
One of my sons has both type one diabetes and coeliac which they were very slow to diagnose - the doctors kept on telling me his constant colds and lethargy were normal. Also said his growth rate was normal and only after diagnosis and after I pushed and pushed for more tests the hospital endicronologist eventually said his growth was most likely effected by his diabetes and coeliac disease but it was too late to do anything about it as by this time he was post puberty - so I am very aware that GPs and Consultants don't get it right a lot of the time particularly when symptoms can be explained by lots of things.
I think the first port of call is to understand that you don't need to test positive for instrinsic factor antibodies or parietal cell antibodies to have a b12 malabsorbtion problem.
B12 deficiency whatever the cause can result in very serious problems.
If your relation hasn't had stomach surgery and isn't restricting their diet then you can assume the problem is malabsorption related.
This means they need much more than would normally be consumed through diet.
So, you are right in saying to them treat the symptoms anyway.
If they read the article and the responses they should start to realise they are getting it a lot more wrong than anyone ever believed, but it is difficult to explain it to you in a couple of threads.
But the BMJ article is a Godsend when it comes to patients getting a diagnosis and treatment - use it to your advantage.
Hi Hensa ,
What; do you mean that is the end of her treatment; no more B12? She should be on maintenance dosis of B12 once every 3 months and folate and ferritin should be re tested every now and again to make sure they have not gone into negative balance say. If you are unhappy about treatment and symptoms still persist then insist on haematologist appointment for some one that age, I would. A haematologist will test far more, thyroid/ coalic and IF antibodies should ideally be tested. Her serum B12 is not high after loading, a haematologist may well help to find out why not, possibly testing MMA and or active B12 and or refer to gastro etc, more investigations should be done with some one that young I think.
I got terrible night sweats before treatment , they are also associated with iron def.
Link to article/ section about sweating can be found here (page 2 by 06 September 2014 Habib Ur Rehman) :
bmj.com/content/349/bmj.g52...
Kind regards,
Marre.
Thanks as I have said to Poppet the article and responses have been very helpful.
Coeliac was negative and thyroid also negative but they won't test for IF because of the Gastric Cell antibody result being negative.
Most of the GPs have said she doesn't have pa because she has no anaemia (although they did prescribe iron as low in the normal range)nd is no longer deficient because of last result being288.
The nurse at the practise however said testing should be done 6 months after the loading doses and not before.
Its is very wrong to not test IF because of the Gastric Cell antibody result being negative.
IF antibodies are specific for PA, Gastric Cell antibody is not diagnostic of PA.
See (and possibly print out a copy for your GP) the new guidelines Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders:
bcshguidelines.com/document...
(b) Gastric anti-parietal cell antibody
Gastric parietal cell antibodies (GPC antibodies) have a low specificity for the presence of pernicious anaemia since, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals. Positive gastric parietal cell antibodies may cause gastric acid achlorhydria and progression to pernicious anaemia may occur. However, a positive GPC antibody test is not definitive for pernicious anaemia (Khan, et al 2009).
Recommendations
All patients with anaemia, neuropathy or glossitis, and suspected of having pernicious anaemia, should be tested for anti-intrinsic factor antibody regardless of cobalamin levels (Grade 1A).
Patients found to have a low serum cobalamin level in the absence of anaemia, and who do not have food malabsorption or other causes of deficiency, should be tested for IFAB to clarify whether they have an early/latent presentation of pernicious anaemia (Grade 2A).
Anti-gastric parietal cell antibody testing for diagnosing pernicious anaemia is not recommended (Grade 1A).
Recommendations
Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).
Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)
I would insist on referral to haematologist as with a young person you do not want mistakes being made that may cause damage in the future.
Kind regards,
Marre.
The testing for IFAs needs to be left for 2 weeks after loading doses. The problem with all these tests is that they are unreliable. As Marre rightly says they do not mean your relation does not have PA but a doctor doesn't see it that way.
The anaemia comment is typical of doctors, as if the reference to the importance of IFAs and PCAs - the anaemia comes last in the metabolic pathway not first. The neurological damage is done first. The diagnosis of PA means essentially nothing in this day and age because the bottom line is they don't know why many people don't absorb b12 - in fact there is a lot more people in that category than manage to hit the diagnostic criteria of PA (which is getting narrower and narrower) and, if they don't know what's causing the b12 deficiency how do they know how much, if any, is reaching nerves and cells? Are all b12 deficiencies only severe if you have antibodies? Are all people diagnosed with PA bedbound? No. And that is because it is the b12 deficiency which is the issue - it is the b12 deficiency which is the initial problem that has to be resolved.
I'm editing this Hensa to say that if you look at the article, or at least the opening abstract, it will explain to doctors that they shouldn't be looking for anaemia. They should be looking for indicators of neurological problems. You might also note that the research isn't titled Pernicious Anaemia - it's about b12 deficiency. Once the doctors understand that the anaemia comes last things will start dropping into place for them. At the moment they think it comes first - no anaemia, no problem. They are wrong and they need to be shown they are wrong. Resolve the symptoms first - get treatment - then start looking at the cause.
... and just because I feel like thinking things through:
Let's look at the PA and B12 thing in a little more detail -
The presumption is that b12 deficiency will develop into PA although there is no evidence of this and I've never seen any scientific research in support of the theory. Perhaps someone will show me differently (which I would be quite happy to look at!) but anyway -
In the past it was shown that someone deficient in intrinsic factor would have more difficulty in absorbing b12 but we are not quite sure what this was comparitive to apart from vegetarians.
It works like this. B12 is in food. Food goes into the acid environment in the stomach and is dissolved and the b12 is 'liberated.' The parietal cells release instrinsic factor which is one of the 'transporters' of b12. But the IF cannot transport the b12 from the stomach. In the stomach the b12 is attracted to something called haptocorrin and this attaches to the b12 and moves on down in to the intestine. Further down the intestine, where it gets more alkaline, the haptocorrin releases the b12 and it is then attached to the IF and transported along its merry little way.
This is the simplified version of the process!
So, if you have IF antibodies, this means the intrinsic factor, to one extent or another, is being killed off. The transport that would be available further down the intestine is not available. Hence the difficulty in absorbing b12 and the problem.
Now let's look at a b12 deficiency and one of the aspects of malabsorption .
The b12 in the food travels into the acid environment of the stomach where it is liberated from food by the acidic environment.
What if there is little or no acid?
Taking the antibodies out of the equation, the intrinsic factor out the equation - everything out. What happens if there is no acid?
If that b12 cannot be liberated from the food, there is nothing to transport. There is no b12.
Will an IFA test or a PCA test make any difference to the outcome for the patient?
There's still no b12 being liberated or transported.
Does that make it less important than the person who has antibodies? Does it really matter if that person develops antibodies as well - there is no acid to liberate the b12 in the first place.
Take also into consideration that doctors have been getting it wrong, that they have been looking for anaemia because they think it is the first indicator something is going wrong, rather than a later indicator - and you have the recipe for disaster.
Admittedly my explanation is very simplistic and there are a thousand and one other issues involved. But I hope you will see why trying to prove a causation at this stage in the game is not really the issue. Getting the b12 in the patient is the issue which is important at the moment.
what is a normal level
Taking folic acid before next blood test
Confused and frustrated
Well what do you think
Supplements alongside B12
