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Does anyone know about b12 deficiency and injections?

(118 Posts)
SagaNorenMalmoCountyPolice Fri 02-Sep-16 12:05:14

After a hellish few months of heart palpitations, severe fatigue, feeling dizzy and faint a doctor arranged for me to have blood tests to check my iron and b12 levels. Both have come back low, I have started to take iron tablets and had my first b12 injection yesterday, have 5 more injections over the next few weeks. Does anyone have any experience of this? If so how long did it take to feel better? Will I have to have these injections forever? Any advice would be much appreciated.

Fluffythefish Fri 02-Sep-16 16:29:45

I had the same diagnosis last year. After a few weeks of loads of B12 injections, I am down to one every 3 months. I think I can tell when they are due as I am a bit more tired, but certainly generally I have loads more energy than I used to. It wasn't a sudden "ping" (although apparently some people do get that) but a realisation that my energy was back again. At some point they might review whether I still need them and there was a question about my diet (I'm a non meat eater but do eat fish) but at the moment I am happy to have the injections

SagaNorenMalmoCountyPolice Fri 02-Sep-16 16:57:37

Thanks so much for your reply. Good to hear you have more energy now and helpful to know that it will probably be a gradual thing. I don't eat meat but do eat fish too, I have wondered if this has anything to do with it.

Ledkr Mon 05-Sep-16 20:06:52

Hi there. I'd be interested to keep this thread going as I had mu injections in June so due to retested in Dec to see if it's dropped again but over the weekend I'm
Having more symptoms than I had before, palpitations, breathlessness, blurred vision and headaches.
I saw gp today who was very disappointing as he seemed to know nothing but did arrange further testing and an ecg.
I just want to feel normal

Ledkr Tue 06-Sep-16 10:00:46

Quick bump

Fluffythefish Tue 06-Sep-16 11:02:31

Ledkr have you been tested for thyroid issues as well? I also have an underactive thyroid and some of the symptoms overlap. Hope they get you sorted out soon

Ledkr Tue 06-Sep-16 11:05:45

No i haven't, do they not test for it in the bloods?

Ledkr Tue 06-Sep-16 11:07:36

My b12 was 99 so definitely that.
I just want to find a dr who is knowledgable as the one I saw yesterday was clueless

SagaNorenMalmoCountyPolice Tue 06-Sep-16 14:55:31

Hi, sorry I logged out of mumsnet so didn't see someone else had posted. Sorry to hear you are unwell too Ledkr. I have been looking into this a lot over last few days (as I've been bed/sofa bound!) and it does seem that a lot of people need the injections sooner than the GP's will prescribe. So you could look into the very high dose sublingual b12 supplements. Or you could have something else going on as Fluffythefish says like thyroid issues. You could phone your doctors and ask if they checked your thyroid? They did with me and it was fine. I had very low iron as well so I'm taking iron tablets for that too. The other things to check apparently are your folate and vitamin d levels.

I had my 2nd injection yesterday and I have a horrible headache, I'm assuming it must be connected. I just want to feel normal too sad. My symptoms are the same as yours, it's horrible isn't it. Did you feel better after your initial injections?

Ledkr Tue 06-Sep-16 17:50:46

Strangely I had no symptoms before that I was aware of.
I nearly fainted today and had muscle twitching in my leg.
I had diaoreah too have you?

SagaNorenMalmoCountyPolice Wed 07-Sep-16 09:56:48

That's strange that you didn't really have symptoms, your b12 was really low! I wonder if after having the injections your body sort of got used to having the b12 and now the levels have dropped you are feeling unwell? After my initial injections I then have to have a b12 injection every 3 months. Have you not had any further injections since your initial ones? If you had them in June, you should be due one now as its been 3 months. I should imagine your b12 is quite low again if you haven't had any further injections.

Davinaaddict Sat 10-Sep-16 15:10:51

I had my first injection on Thursday, with a further 4 to come over the next week and a half. It hurt! And wiped me out that day and the following day. I'm hoping that will ease as I have more.

It's taken me months to find a GP that would actually treat mine as I was in range (216 in a range of 211-990). I've seen 6 doctors in total and nobody was even vaguely interested in diagnosing anything but CFS, despite being symptomatic for B12 deficiency.

My thyroid showed I was hypothyroid as well, but again in range so they were not interested in discussing it hmm. I was lucky enough to be referred by my last doctor to one in the same surgery that has a special interest in CFS and she has been brilliant. She's rerunning my bloods to check thyroid, iron, B12 and coeliac.

I've found the B12 forum on healthunlocked has been brilliant - loads of knowledge on there.

Ledkr - there's loads of crossover with thyroid/B12 so definitely worth checking out with your GP. And may be worth seeing if you have a GP at your surgery that has a special interest in nutrition/chronic fatigue etc (even if it's not one of your symptoms). Again the healthunlocked forums tend to have the same posters on both the B12 community and thyroid, so I'd recommend you get a copy of any results you have and post them on there smile

SecretMongoose Sat 10-Sep-16 15:20:03

I have pernicious anaemia and was diagnosed last year. Sadly I've found that the whole thing is quite a battlefield. I struggled on when I was supposed to get 12 weekly jabs and managed to get to about 9 weeks before begging for another jab, I felt absolutely awful and could barely climb a set of stairs without being totally out of breath.
Fortunately I found a sympathetic go who put me on monthly jabs - but that's still not enough, I've found. I have pretty much given up with GPs and started injecting myself (with help and support from various PA support groups).
You should really be investigated for the reason behind your deficiency, eg coeliac disease can be a cause. And, retesting levels is not recommended once jabs have started.

Bagina Sat 10-Sep-16 15:24:05

I'm waiting for my blood test results for thyroid, b12 etc. My last test was 18 months ago and my ferritin was 37 and b12 220. Getting lots of symptoms now. I don't think they're testing first vitamin d but I use a 5000mg spray.

Davinaaddict Sun 11-Sep-16 10:28:09

See if you can get them to test vitamin D Bagina. I think all the latest media coverage has helped with willingness to test it smile 5,000 is quite a high dosage and you can overdose on it as it's fat soluble, so you do need it checking really.

SagaNorenMalmoCountyPolice Sun 11-Sep-16 11:08:31

Banging, SecretMongoose and Davinaaddict, could I ask what symptoms you have? I have extreme fatigue (this has slightly improved since starting injections), dizziness, feeling faint, funny vision and headaches, these symptoms have not improved. I also keep getting very low blood sugar throughout the day. I've had 4/6 of my loading dose injections and they've really knocked me about. I so hoped I would be feeling better by now, im getting worried that I have something else wrong with me, I have mentioned to the GP that I would like an MRI. I don't know why I have b12 deficiency I have booked a follow up appointment with the GP to discuss. Just so fed up of feeling like this sad

YNK Sun 11-Sep-16 11:09:17

www.b12deficiency.info/

It's important to take cofactors to ensure you don't excrete all of your injections. Doctors don't seem to know this.

There is a great FB group where you can get all the info you need.
www.facebook.com/groups/PAB12DSupportGroup/

FeelingSmurfy Sun 11-Sep-16 11:16:47

The only symptom I had / have is tiredness, but I also have chronic fatigue

I have never had a headache after an injection, it stings a bit getting it done but that's it (and I normally react to the flu jab)

I don't really see much difference, sometimes I can tell when I'm due, but I don't notice an improvement afterwards (but there must be or I wouldn't know when I'm due) I have my bloods tested about every 12-18 months and they are always just at the very bottom of acceptable, so without the b12 injection they would be far too low

Bagina Sun 11-Sep-16 11:28:19

Davina arrgghh, really???

My symptoms list is growing:
Sore tongue everyday
Breathlessness
Sometimes palpitations
Dizzy sometimes
Fatigue
Low mood
Headaches: got very bad, waking up everyday with one, needing painkillers.
Hair loss
Nails vertical ridges
Losing eyebrows from side
Bad skin
Pins and needles come and go, more than is normal.

I feel I'm definitely deficient in something.

Davinaaddict Sun 11-Sep-16 11:32:49

Extreme fatigue is my dominant symptom - I've not been able to work since mid April with it. But I also get pins and needles, reduced cognitive function and dizziness. If I really overdo it, I also get pains in my shoulders.

I would recommend you get as much support as you can whether that's here, health unlocked and/or Facebook, as many GP's just don't know about this in much detail. Although, many don't like their patients doing their own research, so it can make the conversations more difficult depending on your GP, which is not what you need when you're so unwell. When I asked the question about could it be B12 to one doctor, he basically told me it couldn't possibly as it was CFS and all I could do was go home and get myself better hmm. But there are good ones out there, as I found with mine now - I'm never seeing anyone else! grin

Davinaaddict Sun 11-Sep-16 11:45:07

Yes, afraid so Bagina smile. Most of us are deficient (assuming you're in the UK), so it's unlikely that you'll have done any harm at this stage. I believe the Vitamin D Council recommend about 2,000 units as a maintenance dose in the winter months, assuming you get plenty of sunshine in the summer months. It's impossible to make in the UK in winter as the sun doesn't get high enough.

It's also important to take vitamin K2 (preferably K2-Mk7) and magnesium with it, so that the calcium goes to your bones and doesn't stay in your bloodstream.

Have a read of this which will give you plenty of info on it:
www.vitamindcouncil.org

It also sounds like you've possibly got thyroid issues (losing eyebrows is a classic symptom), so I'd recommend find out what your numbers are from all your tests and post back with them. I accepted a result of 'everything is fine except your vitamin D' because everything got in the nice little range. Vitamin D didn't cure any of my symptoms (although it lessened some), so I went back and discovered that none of the key 4 results for thyroid were optimal and all of which could be causing my symptoms. I just need to see if I can find out which one/s.

Bagina Sun 11-Sep-16 12:04:19

Thank you so much for the information. It's thanks to threads like this that made me ask for a print out of my 2015 results, even though they're a year out of date. They are testing for diabetes and thyroid. I've been growing my eyebrows back in for the past 6 months and noticed that the whole of the sides keep falling out and I know that's a symptom. My TSH was 1.75.

I'll hold back on the vitamin d. I went into a depression last October which I thought maybe have been SAD related, and have been terrified of a repeat this year.

Davinaaddict Sun 11-Sep-16 12:21:46

I was the same - it never occurred to me to get a print out of my tests at the time! So glad for Mumsnet smile.

Don't necessarily hold back on the vitamin D though - I always used to joke that I suffered from SAD as I was always worse in winter. Then I found out my vitamin D was 17.5! Which given the fact that I'm a red head and spent all my sun time covered in cream, wasn't really surprising!
See if they'll test you for it as there are a lot of symptoms in your list that for with a vitamin D deficiency. I'm aiming for a result of 100-120, at which point I'll drop my supplementation back down. I'll be supplementing for life though.

That's a good TSH level though - what were your other results?

Bagina Sun 11-Sep-16 12:29:15

That's a relief about the thyroid result. They're from may 2015. B12 220, folate 11.4, ferritin 39. I don't know which other ones are relevant. I was pissed off that my cholesterol triglycerides was 1.9 and the gp hadn't alerted me, especially due to horrendous heart disease in the family. I've lost weight and stopped smoking since then, so am hoping for better results! I would advise anyone to get hold of their actual results.

My symptoms have got worse in the past 3 months, so something is happening.

Thanks again.

Davinaaddict Sun 11-Sep-16 12:43:55

Well B12 is definitely low. If you've not supplemented it in the past few months, I'd get it redone. Folate should be middle of the range, so depending on your range that may be ok. Ferritin optimal is around 70, so again, some room for improvement smile. And all 4 help your thyroid work at its best so it's definitely worth getting them all optimal and see how you feel then.

One thing worth bearing in mind though, is that TSH is not a thyroid hormone. It comes from the pituitary gland and tells your thyroid what to do, so whilst it's an indicator of how your thyroid is doing, that's all it is. To truly understand what your thyroid is doing, you'd need a full thyroid profile doing, including the antibodies test for Hashimotos. Few GP's will do this though, so if you do think it's worth exploring you may have to do it privately.

Fingers crossed you get some answers from your recent tests!

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