I have Hashimotos and after a recent spell of feeling exhausted beyond belief but also tense at the same time, I was diagnosed with B12 deficiency and also had to have my thyroxine reduced as my TSH was toolow. I raised the question the casual factor being PA, but was ignored. I'm having 3 injections 2-3 months apart and then a blood test 4 months after the last injection. Surely if it's PA I should be having a loading dose? Should I fight my corner and ask for an IF test? What are the benefits of a diagnosis?
Thank you in advance!
Written by
Ordinary39
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"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF Hydroxycobalamin link in this reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Vital to get adequate treatment. Untreated or under treated B12 deficiency increases the chance of permanent neurological damage including damage to spinal cord.
I sometimes add more to a reply so check back later....
I've written some very detailed replies with more B12 info eg more B12 articles, more B12 websites, B12 books etc in threads below which might be of interest.
If B12 deficiency has been detected, you should first have a loading dose to raise level, whether pernicious anaemia or not. Even if the sole cause turns out to be dietary, and tablets can be absorbed for maintenance thereafter. A PA diagnosis is difficult. An anti-Intrinsic Factor antibody test (IFAB) could give you a positive result, but only 40-60% of those with PA will get this. PA is in your case is more likely because you have diagnosed Hashimoto's. Have you any close relatives with either a PA diagnosis or B12 deficiency ?
If you have neurological symptoms, you should then be treated with a frequency of every other day injections until there is no further improvement to be gained by continuing. Then an injection every 2 months. Nerve repair can take quite a while. You might encounter reluctance to treat at this frequency- a neurologist can help with a recommendation if evidence of nerve damage found on MRI scan of brain/spine.
Without neurological symptoms, the maintenance dose would follow the loading dose (6 injections over the course of a month generally) at once every 2-3 months.
Since the injections after the loading dose are intended to be maintenance injections, ensure you are as symptom-free as you are able to get first. In other words: is this a state of health that you are happy to maintain ?
Serum B12 testing after treatment has begun is pointless. It will only show that the treatment is in the bloodstream. This test being used to stop further injections is also pointless - and can lead to further deterioration or even permanent damage. Testing B12 levels after treatment has begun is only useful if non-compliance with oral treatment is suspected, or if the patient is getting worse and functional B12 deficiency is suspected (fortunately, this is rare).
Stopping appropriate treatment for 4 months in order to check if you have deteriorated seems barking mad to me. Especially if the treatment proves effective.
So, used for detecting why B12 might be failing to take effect, along with methylmalonic acid (MMA) test and renal problems ruled out; yes, it makes sense. In order to say "Hooray. You're now cured. We'll stop the injections" - without an inkling about the cause of B12 deficiency ? Possibly a dangerous error.
For some people, there is an immediate improvement. For some, there is a period of getting worse before better. For some, the maintenance dose is inadequate - and so, if GP or practice stick rigidly to the guidelines above, these people have no remaining option but to self inject. Some GPs do understand that we are all different, from presenting symptoms to response to treatment - I hope you have a GP who looks and listens.
Thank you so much for all this. I have since had a chat with the pharmacist and he was very helpful. I am now going to get a loading dose and then a maintenance dose with a blood test down the line. I am utterly convinced that diet has not played a part in my deficiency, and I'm really worried that they'll stop my treatment, take a blood test and say I'm fine. I don't really know what to say if this situation arises! I definitely felt a positive effect from the one injection I've had so far although it's wearing off. 2 weeks on my headaches have returned and my motivation has disappeared. It's such a shame when you have to fight so hard just to feel normal. I had that with my thyroid for years and really struggled to make myself heard.
"I am utterly convinced that diet has not played a part in my deficiency, and I'm really worried that they'll stop my treatment, take a blood test and say I'm fine. I don't really know what to say if this situation arises!"
Fish tapeworm infection can lead to severe B12 deficiency. Giardia Lamblia is another parasites associated with B12 deficiency.
Search online for "parasites B12 deficiency" for more info...some stories may have some gruesome details.
Have you ever eaten raw or uncooked fish eg sushi/smoked salmon?
Lived or stayed somewhere where internal parasites are common?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full blood Count results.
More B12 info in threads I listed at end of my second reply.
I wrote some detailed replies in thread listed below.
Table 1 in above article is about frequent misconceptions about B12 deficiency.
More about Letters ( also see letter writing link in my first reply).
I think queries about treatment/diagnosis are likely to be more effective if put in writing to GP as harder to ignore. May be worth copying them to Practice Manager.
It's possible that writing letters will irritate GPs but weigh the risk of irritating GPs against risks of not getting effective treatment.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful in the event it's necessary to make a formal complaint.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case needed in future.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Should I push for diagnosis? 
New to B12, do I need a GP appointment?
Can it be PA when the Dr says no and the results are inconclusive? 
Will B12 skew PC and IF results
I must be going mad!
