Pernicious Anaemia Society

Newly diagnosed

Hi all

I was told I was b12 deficient in April (113).

I have since found out I have hypothyroidism. My TSH level is 21.77

I'm just so tired all the time, I've had 2 injections for b12 since April (I'm not anaemic) and started levothyroxine 2 weeks ago but I'm always sleeping or want to go to sleep.

My job is demanding and I'm finding it difficult to concentrate because I am so tired. anyone know when things may improve

3 Replies

Just had a look at your post on the thyroid forum.

Does sound as if your GP is one of the many that doesn't really have a clue about B12. If they told you it had been caught early because you don't have any anaemia then that would be par for the course but certainly not correct. Although anaemia is a common symptom of B12 deficiency it isn't necessarily the first to appear - I can trace my symptoms back 40+ year and have never shown up with anaemia. B12 deficiency isn't caused by the levels in your blood - it is caused by what is happening to the cells that need to use it and whether the B12 is getting through to those cells.

Thyroid and B12 problems is a very common combination. To make things worse the symptoms of thyroid and B12 overlap considerably.

Please take some time to look through the pinned posts.

Things to particularly note: go through the symptoms list and tick off everything that applies ... even if it isn't a new problem.

Note that the most common cause of a B12 deficiency is an absorption problem - the most common of which is PA but it is not the only one - others include drug interactions, lowering stomach acidity (often mistaken for high stomach acidity, treated as such which makes things worse), gastric surgery affecting the ileum.

If you have an absorption problem then you need regular maintenance shots - and you should have been on a series of loading shots - normally people store B12 in their liver and then release it for reabsorption into the ileum but if you have an absorption problem that becomes increasingly less efficient and your B12 stores just leak away. the treatment does not correct this problem so without maintenance shots the levels in your blood will just dwindle away leaving you deficient again.

in UK the regime is 2 weeks of 3 shots followed by maintenance shots every 3 months. If you have neurological problems the regime is 3x per week until symptoms stop improving (review at 3 weeks), followed by maintenance every 2 months. Neurological symptoms would include tingling in hands and feet, and some would argue that the tiredness and not being able to concentrate would be the same though difficult to get most GPs to recognise that.

113 is a very low result so would be surprised if you don't actually have some long standing problems that you have been brushing off as either stress or getting old.

Good of your GP to pick up on the thyroid ... but they are not doing well on the B12.

And as you have had a lot of 'advice' on the TUK forum I'd like to point out the following.

a) B12 is one vitamin where people's responses vary significantly. many people will be fine at levels well below 500 but others won't. What matters with B12 is the symptoms not the levels. There are even warnings in the BCSH guidelines and by UKNEQAS who regulate biological assays drawing attention to the fact that a B12 deficiency cannot be diagnosed or monitored purely on the basis of test results. To say that everyone should have levels over 500 is just another manifestation of the same misunderstanding of statistics that leads GPs to only treat at levels that are statistically below the normal range.

b) Hydroxocobalamin is used to treat people in the UK - methyl is used in Asia - whilst it can be easier for people with MTHFR genetic variants to use methyl there are actually 2 active forms used at the cell level - methyl and adenosyl and there are some documented cases of people who have problems converting methyl to adenosyl. Some doctors in India recommend use of both methyl and adenosyl. However, MTHFR only means you are less efficient at processing unmethylated forms like cyano and hydroxo - it doesn't mean that you don't process any - so higher doses of cyano/hydroxo should do the job if that is a problem. Both are far more stable than methyl and adenosyl so cheaper. That's a long winded way of saying that the reputation of methyl is somewhat exaggerated.

If you can then I think you need to have a long talk with your GP about the way they are treating your B12 problem - it's unlikely to be diet (unless you are a strict vegan ... and even then that doesn't rule out the possibility of an absorption problem at the same time.


And as a PS - if your GP pronounces that you don't have PA because test for IF (or PCA) comes back negative - that's not necessarily true - both tests are notoriously prone to error. IF test is only conclusive if it comes pack positive.


The BCSH Cobalamin and Folate guidelines mention Antibody Negative PA on page 29 and elsewhere in document.

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