Pernicious Anaemia Society
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New here - waiting 5 months for B12 injection - depressed/hypochondriac?

I am new here and I was diagnosed B12 deficient in February 2017. I also have Hashimotos and at the moment it is undertreated. I was prescribed B12 injections by my haematologist who advised me to take 1 every 3 months. I had my first one done in August 2017. Have been told by receptionist at my GP surgery that they cannot fit me in for any more outside of work hours and so I have been waiting since August 2017 for a second one. As a result I have not taken any 5mg folic acid because I was told to restart this after a few injections had been done. I was diagnosed folate deficient in November 2016, iron deficient 2013, vitamin D deficient 2013.

Symptoms I have copied from the B12 deficiency site:

Brain fogs

Tired all the time

Shortness of breath

Fatigue

Clumsiness

Brittle/flaky nails and dry skin

Balance problems

Dizziness/Feeling Faint

Numbness/Tingling/Pins and Needles

Burning Legs and/or Feet

Vertigo

Tinnitus

Sensory Impairment

Behavioural Changes

Irritability/Frustration/Impatience

Sudden Mood Swings

Depression

Loss of Libido

Sleep Disturbance

Confusion/Dementia

Mouth Ulcers

Swollen, ‘Beefy’ Tongue

Cracked Tongue

Poor Digestion

Loss of Appetite/Weight Loss

Hair loss

Premature grey hair

Menstrual Problems

Infertility

Vision Problems

Incontinence

Also constipation and muscle aches and pains

Before supplementing vitamin B12 (result February 2017)

Vitamin B12 231 (190 - 900)

Since being off folate (result December 2017)

Folate 1.7 (2.5 - 19.5)

Since having iron stopped in February 2017 (result December 2017)

Ferritin 18 (15 - 150)

Thank you in advance for any advice.

12 Replies
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Leanne is there any way you could change your GP?

You should really have been put on loading doses then follow up with maintenance doses not straight on to maintenance doses - don't know what the haemo that recommended that was doing ... or may be its the GP misreading the letter from the GP - might be worth getting a copy.

folate deficiency has significant overlapping symptoms with B12 deficiency and you shouldn't be left lingering to treat that. You have neurological symptoms and the UK guidelines in that case are for more aggressive treatment - loading shots 3xweekly until symptoms stop improving (review at 3 weeks) followed by maintenance doses every 2 months (though even that isn't necessarily enough.

this is a link to the BCSH guidelines for diagnosing and treating cobalamin and folate deficiencies

onlinelibrary.wiley.com/doi...

your GP can access them through the BNF

I would suggest querying the undertreatment in the letter to your GP with the information on why your GP should not have lowered your levo.

You may need to bite the bullet and arrange an appointment during working hours. Under descrimination legislation in the UK your employer is under a duty to make reasonable adjustments to accommodate long term medical conditions that affect your ability to live life daily and B12 deficiency falls into that category. Being allowed to take time off in order to attend a medical appointment for a necessary treatment (and B12 shots are a necessary treatment if you have an absorption problem) would be a reasonable request and it would seem unreasonable for any employer to refuse this. Suggest that you try contacting CAB ... or speak to your union rep if there is a union at work.

Generally the recommendation is that treatment for folate deficiency starts 24-48 hours after treatment for B12 deficiency - you need to get a shot and then start taking the folate tablets not put things off ... and ideally you need to get proper loading doses.

Folate is also going to add to the depression

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Thanks I get a bus which is funded by my work and it is my only way of getting into work. Only one bus runs in the morning. If things are that difficult I could take a day off?

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Leanne - please do go and see Citizen's advice and/or your union. It may be that you need to take a days leave because of the transport issues but work should be able to accommodate that - would also be good to talk to your HR department.

I understand it is difficult but not having the treatment you need literally is killing you at the moment.

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I was thinking, what if I took the B12 ampoule to a local hospital if it meant a bus ride to the hospital? I could tell my GP surgery my situation, that I have waited 5 months for a B12 injection, am suffering symptoms and need to get it done and out of the way. Would that work?

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you could try butit might mean a lot of paper work for the GP surgery

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Do they need a record of it?

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sorry may have misunderstood

but usually people aren't given ampoules but they are dispensed at the surgeries as an injection. were you given a prescription for ampoules that you collected from a pharmacist?

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I was given a prescription for ampoules that I collected from pharmacist yes.

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you could try taking them to the hospital but I really don't know if they would inject them.

how have you been storing them?

you could try self injection - though if you g down that route I'd suggest doing it subcutaneously using an insulin needle

there are lots of posts on the forum about how to self inject

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I have just kept the box on top of the fridge in the lounge. Still unopened.

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on top or in the top of the fridge? Main thing is that it needs to be kept somewhere dark but also needs to be cool or the B12 breaks down. If it is 5 months old then it could have deteriorated and not be as effective.

all you can do really is try it. though might be better to start anew if it is on repeat prescription

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Citizens advice bureau isn't run by your employer - and I think they now have a good on line service - its a charity that exists to provide people who might not be able to afford it to get advice and support on a range of issues

citizensadvice.org.uk/

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