Can you be cured or misdiagnosed? Symptoms still the same!

[clare-f]

I was diagnosed in UK with pernacious anaemia three yrs ago last yr have struggled to get Dr to give me injection here since moving back t9 Ireland, app my b12 is 369 which acvording yo dr is fine within guudelunes and after a fight t9 prove i was pernaciousanaemia, app my if and pariateall cells antibodies are no longer a problem , they say here I am but d different bit not pernacious anaemia or low cut b12! My f9late is 7.8 is it possible to misdiagnosed, tu8x is my second Dr since moving back to Ireland! Other Dr told me pa was all in my head, to practice mindfulness take anti depressants

Is it possible yo be cured of paid not how can two tests come up with two different results! ? What should my b12 be?

[Gambit62 Administrator]

clare-f - your post is rather difficult to follow as there seem to be a number of typos - would you be able to take a look and correct them so it is easier for others to see exactly what is going on. If you look at the bottom of the post there is a button with a down arrow on it - if you click on this you will see an option to edit the post.

The answer to your question is that there is a lot of scope for imprecise terminology which can lead to misunderstandings.

If you had a positive test for IFA then you have PA - this is an auto-immune disorder which attacks and destroys the mechanisms that facilitate absorption of B12. There is currently no cure for this.

Medics are often confused about exactly what PA is and how it relates to B12 absorption problems other than PA with the result that sometime PA gets used as a short hand for non-dietary B12 deficiency, with the emphasis on the deficiency - which is, of course, cured by filling your blood up with massive amounts of B12 in the form of injections. However, that doesn't mean that the mechanism that caused the deficiency has been cured - only the symptom.

Some causes of B12 deficiency are curable - such as h pylori infection - others aren't so require on-going treatment by finding another way of getting B12 in to you that doesn't rely on your gut.

To add to the confusion we do store quite large amounts of B12 in the liver - which is why B12 absorption problems take a long time to turn into obvious deficiencies. The mechanism for releasing this store relies upon the same mechanism as absorbing B12 from your food - by releasing the B12 in bile to be absorbed in your ileum. So, even though a person with a B12 absorption problem may be able to replenish these stores, they can't access them - it's like having a huge water storage pipe that is connected to the house by a pipe with a huge hole in it - very little, if any, actually gets through to the house.

The other problem is that normal range really applies to a normal population - people that don't have absorption problems and haven't been treated for an absorption problem. Treatment with injections raises your blood serum levels outside the normal range meaning and for a significant number of people this seems to kick of a reaction that tries to stop the B12 going from your blood to your cells with the results that your cells don't actually get enough B12 - leading to a functional B12 deficiency. One really effective way of treating this is to keep serum B12 levels high (not a problem as B12 isn't toxic) - so enough manages to beat the reaction and get into your cells. I believe the PAS did a bit of research a few years ago and found out that people who have been treated with injections report needing to have serum B12 levels of 1000 pmol/L to feel okay - that is an average - some don't need it anywhere near that high and others (myself included) need it well above that. So the fact that your serum B12 is in the 300s at the moment doesn't really prove anything - and its the symptoms that really count if you are trying to manage B12.

Most GPs are totally unaware of most of this and very confused in their understanding ... andit sounds like you have gone from a GP who was reasonably aware into the area of those that just aren't aware.

Things you could try to get through are

a) suggesting that your GP looks at the area on the PAS website that is specifically geared to health professionals

pernicious-anaemia-society....

b) joining and contacting the PAS directly to see if they can advise you further.

pernicious-anaemia-society....

pernicious-anaemia-society....

[SusanLMckinney]

B12 is given as a placebo so much, Most doctors are not really that experienced with bad cases of B12 deficiency and do not really test for B12. There is a specific B12 Test that must be done to determine if you have pernicious anemia. It used to be rare for someone to have a bad case of it to the point where the nervous system is damaged or dying. In 2000 I started a long horrible downhill decline in every way possible. Drs told me I needed counseling and antidepressant drugs because I had so many symptoms. Finally I found a doctor after 5 tries who finally did a complete blood work up and found it. I am lucky I have had such a good recovery my case was so bad. I had more twitching, stuttering, forgetfulness, vision problems, vertigo, burning tongue, low iron and cravings for ice, heart was going crazy, numbness, tingling, I was an emotional mess because no one believed me. It makes me very angry to hear about how they are telling you to take anti depressants when they can do the right test and know for sure if they can rule out B12 deficiency. You can surely get sublingual over the counter. I used liquid B12, 5000mg (under the tongue for 1 minute) for about a year and got retested to see if it was doing the job, it was. Take care and force them to do the right test if you have to pay yourself.