GP made a mistake - quite upset about it.

[Unwellpigeon]

This is a rant more than anything.

Sorry it's long, but I need to get it off my chest as I'm really quite upset, please be gentle if you reply.

I had blood tests back in May whilst under investigation for an unrelated issue.
Bloods came back as severely low in B12 and low in Iron, given a prescription for both.

Had the initial loading doses of B12 and it made me realise once it had kicked in that actually I had been feeling quite awful but had put it down to other factors.

Had first maintenance dose in August.

On the weeks leading up to this, all symptoms that I had felt before loading doses had returned with a vengeance.
I couldn't function and it was severely impacting my life and my career.

I told the nurse all of this, I explained that I was actually a bit shocked at how bad I was feeling, explained the symptoms.
Told her I was really quite worried as it had been having a massive impact on my work, but also that I have a big holiday booked/first market stall for my side hobby, right before my next dose would be due, and would struggle to cope (as I was at that point) with the severity of symptoms.

She told me not to worry, and to wait until the symptoms started again (if they did) put in a request to GP and they'll give me my next B12 dose early.

So here we are, symptoms started up again last week. E-Consult straight in to GP, only to be told the blood tests back in May showed my B12 was never low, I was actually low in Folate and I should have been prescribed that at the time.

Booked in for more bloods to check levels again but nothing they can do in the meantime. Bloods are not till the 25th Oct.

I phoned the GP, explained all of the above, told them I'm now once again feeling horrific, my work is suffering. It's beginning (once again) to severely impact my life. Is there anything that can be done? No. Can I start folate in the meantime (willing to buy it myself!)? No, have to wait for results in case it's something else.

Receptionist said the nurse should have never told me to wait back in August. I should have had a review back then. There is nothing they can do and they are aware that any likely treatment is going to take months to make a difference but I just have to wait.

They admitted had I been given the correct prescription I would have been feeling better by now. No apology, nothing.

The mental symptoms make me feel like I'm losing my mind and the physical symptoms leave me struggling to do basic tasks.

Sorry for the essay, I know there's nothing to be done. I'm just gutted and feeling awful.

I'm sorry this has happened to you.
Buy folate over the counter, and write to your practice manager.
Low B12 OR low folate left untreated can cause really bad physical issues (even beyond how you feel). They need to take it seriously NOW.
Folate and B12 blood tests results can easily be obtained within 24 hours.

I buy my b12 online from Germany and self inject every 4/6 weeks. My levels are low according to the rest of the developed world but "fine" according to the nhs. It's a joke. The nhs is crumbling due to massive underfunding and the solution is tighten the parameters for treatment instead of increasing the funding.

Have you had your intrinsic factor checked?
You only need injections if your body cannot actually absorb B12 orally.

I’m sure Witchy has tried to take vitB12 orally befute self injecting. Who wouldn’t ?!?

Thank you for replying.

Yes, I was in two minds about contacting the practice manager but I think I will.

I feel this is realistically the actual cause of my distress as I know vitamin deficiencies can do some damage if left untreated. They've not made any mention of this and nothing is being treated as 'urgent', and I am so worried the mental symptoms are permanent.

I bought some folate yesterday so that's a relieving the worry a bit that at least I'm doing something!

What were your levels? Have you had a full thyroid panel done? Also vit D?

In the meantime OP you can buy sublingual B12 too. Solgar do one. This might be helpful if you're not absorbing B12 due to lack of intrinsic factor. Could tide you over for a while.

Also, have you checked your blood test results yourself? The practice might print out a copy or you can access them online maybe. That would be helpful too so you know exactly what the levels are.

I’ve got several auto immune diseases and I’ve been injecting b12 for 14 years as I really cba jumping through the hoops the NHS . Neither me nor my sister can absorb b12 orally and yet every 12 months my starter gets told that she’s going from monthly to quarterly injections and every time she has to fight and argue and contact the consultant that said she needs them for life. I refuse to waste my energy and endure the monthly appointments that are constantly chopped and changed at the whim of my local practice, only to be left in limbo for 4 months at a time. I take as much of my heath care into my own hands as possible. I also buy antibiotics in 3 months supply over the counter and say it’s for malaria as I’ve had pneumonia 7 times in a decade from being severely immune compromised and the gps/locums/111 dont respond to my requests for urgent treatment for a sinus/throat infection quick enough. They refuse to prescribe or drag their feet and BOOM , 24- 48 hours later in hospital costing them a fortune and being prescribed the wrong antibiotics and taking up space.

So frustrating. If your GP health record is online, it’s good to look up your test results yourself, actually look up what they mean and see if you need iron etc. The margins they accept, especially for women, are not good enough.

@WitchyBits which online pharmacy are you using these days? I used to be prescribed every other day to self inject from my doctor. Then my doctor left, and a new one did a "review of B12 across the practice". This review, but one of the partner doctors, took almost 18 months and they decided if they reduced everyone's frequency, it would save approx £23 a year. Not per person, across everything. God knows how much it cost them in her time to do that review, and now we are all suffering with much, much lower frequency injections than we actually need to keep well. They tried to move me from EOD to once every 3 months - I managed to get it to once a month instead but they wouldn't budge (even though I pay for all the equipment, I save the cost of nurse appointments, etc). The links I have for the German pharmacies no longer seem to work which is frustrating.

OP I 100% recommend self injecting. I was lucky to have a supportive doctor - most don't seem to have a clue. You've seen yourself that the injections help, so they are doing something! You need cofactors - 5mg folic acid daily is crucial. A B complex with no more than 10mg B6 in it daily (take for 4 months, then break for 2).

If you are okay with it, sharing your bloods results on here could be helpful. Have you had your thyroid panel done? If so, share that too.

Hi all,

Thank you for replying. I don't have my results and don't know how to get them, we don't have an app or online system (that I know of) it's a case of they phone you to tell you. I never thought to ask to be honest, just trusted they were right.

I've phoned the GP today and thankfully there's been a cancellation so I can get my bloods done tomorrow now. I will ask then if I can get a copy of the tests done in May and then for copy of the new ones when they are available. I will go down the private route/self injection, anything to stop feeling like this.

I've thankfully now worked up the courage to inform my boss about what's going on (they knew but not how bad it's gotten this time around) so I have the next couple of days off to try and decompress and get myself together as I'm a bit of a mess.

There is a clinic where I live that does B12 injections privately without needing a letter from the GP to prove deficiency (all the pharmacy's here that offer this do) so I'm going to book that now.

Thank you all again, you've all really helped.

Do you have the NHS app? You can view your medical record, including any test results. It shows 'normal' parameters and what your readings are for each specfic test (I had general bloods done and there was a whole list) and then whether you are in range or not.

Just a heads up - having had any form of B12 in at least the 4-6 months prior to the blood test will result in a false high on your new tests. So if your B12 result looks ok, don’t be fooled! Go by your symptoms and the fact the injections are actually helping you.

This is not uncommon. I also think I have a B12 deficiency (my mother had pernicious anemia) but my bloods according to the NHS are within the normal range.

I had a real fight on my hands with this same issue. Had my loading doses, felt like shit, had a repeat blood test and then got given folic acid 😂. It’s a shit show. I need more frequent injections but can’t get them unless I go private!

Just to say, if you don’t have access to results online (for example we have something called MyChart), then you can ask for a printout of your tests results - the older ones and the current ones. If reception seem unhelpful, hold your ground! It is your data and you are entitled to have a copy of it (not just be told on the phone that everything is fine).

So someone (GP?) told you initially B12 was low but it wasn't? So odd as it's almost impossible to have b12 injections if levels are in the normal range. As others suggested, ask for copies of all tests done. If they're saying now it was never low b12 but was in fact low folic acid, why on earth has a prescription not been sent out like yesterday?

Join Facebook group pernicious anemia / b12 deficiency support group. They have give me my life back. So much info and help from blood results to where to buy b12 and details on self inject

OP - download the NHS and log in. You should be able to see your GP records, any test results and prescribed medicines. It's actually easier to request a repeat prescription via the NHS app than via any means our surgery provides.

How interesting to know.