I received some great advice here before so I’m wondering if you can help me again. About a month ago now I had blood tests as I was feeling really knackered and even though I’m 8 months pp it didn’t feel right. The test showed:
b12 175 (200 - 883)
Folate 4.4 (3.1 - 20.0)
Ferritin 22 (15 - 200)
I was called by one of the receptionists to be told that my b12 was low and was prescribed ferrous fumerate 3 times a day. I’ve since learned that this will do nothing to help my b12 from here!
Anyway, since then they got me in for a blood test to check to see if my levels had increased and did the wrong test so it took another 2 weeks to get in again. I found out that they were planning to test me for PA since my grandfather has it. That test happened on Monday last week and I called today for results as they weren’t in last week and I was told that the doctor says everything is fine and that’s it.
Is that really it!? I feel like I should be receiving treatment for my b12, I’m symptomatic with pins and needles, tingling in my face and I’m just exhausted. I asked about other treatment and was told I’d need to call back tomorrow if I want to speak to the doctor. I’m just constantly chasing the doctors here to get myself sorted out and I need to be on top form to be able to look after my 3 year old and 8 month old. What should I do next? Any and all help appreciated!
Written by
Scottishsally
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Yes. You should definitely be getting treatment for your low B12. It's possible that your pins and needles are the first sign of nerve damage caused by a lack of B12.
You need to insist on getting treatment as described in the British National Formulary (BNF) for those with neurological symptoms - bnf.nice.org.uk/drug/hydrox...
Pernicious anaemia and other macrocytic anaemias with neurological involvement
By intramuscular injection
For Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.
Your folate is a little bit on the low side. Try taking supermarket folic acid, 400 mcg a day, once they've started your B12 treatment.
Thanks so much for your reply, I think I just needed someone to tell me that I need to keep chasing this - the doctor actually suggested on the phone that I’m probably just tired from chasing my kids but he has the evidence in front of him that clearly everything isn’t 100%!! Thanks for the folic acid tip, I’ll pick some up ready for when I can eventually start treatment
Thanks for all of your advice. It’s so hard, I just don’t understand why I’m chasing it, they know my b12 is low which was why they were testing for PA and because that’s negative I just feel like it’s been case closed! It’s great that the PA test was negative but it’s done nothing for how I’m feeling! The lack of communication is really stressing me out as you can imagine!
IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia
I might consider self injections, although you don’t want to do that if they may be testing your B12 levels soon. I can’t imagine how you’re taking care of two young children while feeling so bad. At some point you may have to make a decision to just take care of yourself by self injecting despite what they’re willing to do. All my best to you. Sita
Your B12 is low and your folate and ferritin test results are at the lower end of the normal range.
Have you asked GP if you need to supplement folate and iron as well as B12?
I'm glad you have been tested for PA but be aware that the IFA (Intrinsic Factor Antibody) test for PA is not always effective in identifying people with PA.
Have you been tested for coeliac disease?
UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac and anyone with a first degree relative with coeliac disease.
I suggest you read the guidelines below as from personal experience GPs don't always order both recommended first line tests
coeliac.org.uk/coeliac-dise... also suggest that patients should be eating plenty of gluten in more than one meal per day for several weeks before blood taken for coeliac tests.
Patients may get a negative result in TTG IgA test if
1) they were not eating enough gluten prior to test so not enough antibodies to gluten to register a positive result
2) They have IgA deficiency
Patients with IgA deficiency will need alternative tests for coeliac.
PA and Coeliac disease are both auto immune diseases that can lead to B12 deficiency.
Having a family history of auto immune diseases can increase the chances of developing one.
"I was told that the doctor says everything is fine and that’s it."
I learnt from bitter experience that when told everything is fine to always check for myself.
Best advice I ever got was to always get copies of or access to all blood test results.
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 IFA test result/ test result showing low B12/letter from specialist confirming diagnosis etc keep a copy in a safe place on case needed in the future.
Above link has letter templates that people can base their own letters to GP on.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic with an in range serum B12 result.
Why a letter?
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 if there is a need for a formal complaint about treatment .
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.
May be worth drawing GPs attention to risk of permanent neuro damage if B12 deficiency is under treated including possibility of damage to spinal cord.
Has GP got a list of all your symptoms especially every neuro symptom?
I've written some very detailed replies in the threads below which hopefully have B12 info you will find useful eg books, articles, more UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
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