Hi everyone. I am new here and taken ages to pluck up courage to write anything! I was diagnosed with very low b12 back in 2000.
At the time my GP said he had never seen such low b12 before. I was exhausted and crying a lot I remember. I also had low folate which I started to supplement for.
After my loading doses and then 12 weekly injections I felt better.
Some years later I felt I needed more frequent injections and long story short ended up self injecting which worked well.
In the last year, following a prolonged period of huge stress I have become really ill with anxiety and internal tremor. The tremor seems to start at the base of my spine and spreads upwards and downwards. It's just internal not showing up outside but unpleasant. I also have tingling and altered feeling in my legs and particularly feet which also burn. I am so so nervous. I am on antidepressants but still feeling dreadful. I had to give up work and retire early as I just couldn't do it anymore. I am 63 years old and wanted to continue till my old age pension at 66 so it's not ideal.
My supply of b12 ampoules was purchased from Germany in bulk 2 years ago. One query I have is if they have a shelf life although refrigerated? How much my symptoms are to do with b12 I am not sure? Do any of you suffer with anxiety and depression?
My GP just says my b12 is very high and maybe I am overdosing. However I know that is not possible. I feel close to despair and just so very nervous. It's a feeling like I just stepped out in front of a bus which just missed me.
Any input would be gratefully received.
Thank you.
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kittyflowers
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I think that you probably need more regular injections . I buy my ampoules from German online pharmacies , and the sell by date is always 2 1/2 years hence . It will be printed on the side of the packet . If they are out of date, they will start to lose potency , and you had best dispose of them and get fresh ones.
If I were you I would give myself the usual loading doses again (6 over 2weeks ) and then just inject every other day until there is no improvement in your symptoms . Then find out by trial and error how often you need to inject to keep feeling well . I’ve done this , and now feel well on a weekly injection . ( but have irreversible burning feet , but that’s so much better than the numb feet that I used to have . )
You cannot overdose , so no worries on that score . Take a modest 400 mcg folic acid tablet as well , and eat a good diet . Things will start to look up .
It often happens that over time , one needs more B12 , and doctors don’t want to acknowledge that . So then we have to take matters into our own hands . Very best wishes .
I'm sorry you feel so ill. There has been plenty posted about anxiety recently.
I'm a newbie compared to you but although I had ot initially it went.
Recently it came back. ?? Have it in waves. Sometimes I think it's the autonomic response being ' overactive ' as I do t a really feel stressed. Meaning it's a physical reaction first . Fight or flight.
Dont underestimate the stress if leaving work when it wasnt in your plans
That happened to me (nhs lost the bid as put out to tender) psychologically you can be made to feel in our society on the scrap heap .
Toy will be more in tune with your needs for b12 frequency than me. In times of stress e seemingly need more.
Have you had bloods done for iron , ferritin vit d . To find if anythi g needs addressing. Thyroid function ect
I get the tremor you describe so well.
I cope with it with brsthi g and distraction. I've not had anythi g like it before being b12 deficient.
Perhaps take stock. Have a review with your doctor who bloods.
I believe stress eats b12 and that's how I ended up ill. Apart from stomach acid decreasing with the menopause.
I've no idea about tour b12 ampules as dont self inject. Many do whi I'm sure can answer that.
Dont be shy to post. You are not alone
Hope it settles for you
Difficult illness and anything onto p and symptoms return. Well I think that
Thanks so much. My iron is on the low side but supplements upset me. GP says eat more red meat. Thyroid is ok though I am aware that the parameters are narrower here than in Eurooe or USA and so may be an issue. I take a methykated B Complex plus follinic acid daily. Also Vit D3.
Interesting that you get the internal tremor.
It's like an engine inside me and feels like stuck energy. Does yours wax and wane or change according to stress or any other factor?
Worse when I'm extra fatigued like today . Not even left the house. It feels like a side to side shake. I feel as though others could see it but they cant.
Sounds like a horrible day. I understand about feeling the tremor must be visible. Mine changes locality too and today has been alternating between top of me and bottom of me. Feels like the inner shakiness is running up and down. I find it most difficult when it's in my chest and neck and up into my face.
Anxiety was huge for me. It was so bad that I couldn’t be alone. Ever. I am someone who LOVES my alone time and peace and quiet and I just turned into someone I no longer recognized. It is so much better now and am pretty much back to normal. However, if I go more than 3 days between injections I get the internal tremors with anxiety and terrible fatigue. The kind where you cannot control keeping your eyes open. I also find stress will exhaust me. I cannot veer away from my schedule at all in that case. I would try injecting more often until you feel better then see how long you can go between injections.
Sounds very much like potassium deficiency to me but I suggest that you get at least your magnesium and folate checked too as deficiencies of either of these can also make you feel anxious.
Ideally they will do a full vitamin and mineral profile to check vitamin D and iron as well.
If you wouldn't mind looking, there is more information in some of my other replies that you will find by going to my profile by double clicking on my name and looking under the heading "replies". Please reply or post again if you want any further information.
I hope you feel better soon and would love to hear how you get on.
I can't say what all is going on with you. But the symptoms you're describing, I've had with low B12. As the others have said, you probably need to inject more often and perhaps a loading dose round again. I worked up to the frequency I'm at, which is every other day injections. Been doing this for nearly a year. The few times I've tried going several days between injections, I've had massive symptoms hit: severe anxiety /paranoia, aching, shakiness, etc. etc. I suspect you will feel much , MUCH better once you get some more frequent injections. As others here may be able to explain, your B12 levels will read high, but it's meaningless in regards to how much gets into your cells. If you're having symptoms, you aren't getting enough B12.
I totally agree with the above comment, it’s essential to make sure your levels of vitamin D , ferritin, folate, iron, potassium and magnesium are all ok. You can’t absorb D without magnesium. B12 needs potassium or you get hypokalaemia and that makes you feel dreadful really dreadful. Safest way for potassium levels is via foods not supplements tho. Just ferritin being low gives you anxiety and the shivers going up your spine and through your head. It’s not a nice sensation. We are seeing more cases of hypokalaemia so best check your levels. In the UK so many people are D deficient which really effects mood. Good luck feeling better.
If you had macrocytic anaemia (not everybody with a B12 deficiency does) then your potassium levels may drop for a few weeks while the body puts formation of red cells into overdrive.
Once that initial period is over then you need no more potassium than anybody else.
There is a lot of information in them which can be a bit overwhelming and some of the links may have info that can be upsetting so if you look I suggest reading a bit at a time.
Support
Have you considered joining and talking to PAS (Pernicious Anaemia Society) who can offer support and useful info to pass to GPs?
You do not have to have confirmed PA to join PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
If you were under huge stress for a while your cortisol levels may have either shot up or dropped very low. Unfortunately it isn't possible to tell from symptoms whether cortisol or low or high, or irrelevant to your symptoms. The only way of knowing is to get it tested.
Cortisol levels may be able to normalise themselves if they haven't been bad for very long but optimising other nutrient levels will help too. There are various ways and means of using self-help to improve your cortisol levels and it sometimes gets discussed on the Thyroid UK forum on this site :
kittyflowers - since your B12 levels were so low, does your GP regularly check your folate, ferritin, vitamin D and thyroid levels ? Just a blood test. S/he should do.
My B12 level was 196 ng/L initially (range started at 197 ng/L locally -and luckily) and my GP does not check my B12 levels any more as she knows they will be above measurable level (2000+ ng/L) because she knows I self-inject regularly. She also knows that this is how I stop getting worse and that it is working in the main.
But not always- and usually any worsening of symptoms or additional symptoms has turned out to be because one or other of the above is dropping.
I will be 62 this year and have returned to work on a part-time basis after 15 months off. I am trying to get to 66 - but not always sure this is a good idea. Latest additional problem is a thumping heart which on 24 hr monitor turned out to be ventricular ectopics, which is disturbing but apparently harmless and can appear/disappear with no known reason -so will not be taking Betablockers prescribed and just ignoring it!
It took me over two years of self-injecting every other day to get this good, and now recently dropped frequency to about 2 a week without drama.
A caring GP and all the good people on this forum helped me enormously. I'm hoping you find the GP you deserve, having been so very ill. As for this forum ? They are always here for you !
The GP recently tested for ferritin and folate and thyroid....I supplement folate with follinic acid so that was ok. Originally my folate was very low too back in 2000. GP says thyroid ok. However iron is low. I need to find a supplement that doesn't upset and cause nausea and constipation. Could be back to good old Floradix!
Glad for you that you are the best you have been now on your every other day regime.
I injected yesterday and today and tremor seems very bad today. Should I go more slowly?
Wouldn't like to say, kittyflowers , as I've never had tremors myself. Plenty on here do, though, and are more equipped to tell you what works or has worked for them. All we can do, since we all seem to be so different, and there seems so little useful medical advice/ research to guide us.
Might be worth a new post (?)
I'm also trying to up my iron with iron tablets on top of multivitamins and minerals (plus diet)- still wanting to get to ferritin level of 80 ug/L for Oral medicine consultant next month.
Although it sounds like you need more B12 injections as I had the same internal tremors when my B12 was low. I don’t know how bad your anxiety is in the meanwhile.
So if you’re able to correct things as advised by others by injecting more B12, making sure folate, ferritin and Vitamin D is at good level etc.....then with time you should improve and feel much better.
Apart from that there’s some people who say they absolutely can’t take the anxiety and nervousness....for those people they should talk to their doctor for benzodiazepines. Diazepam is a very good treatment and it’s a mild tranquilliser which comes in 2mg, 5mg and 10mg.
I must warn long term treatment can become addictive but this is for those who feel they cant cope and you need to talk to your doctor about this. It is for anxiety.
This is prescription only and your doctor will only give you if you need it.
My anxiety has been very bad for the last year but I put it down to 3 years of a lot of personal stress. I am on Mirtazapine sadly. The GP did also give me a few days of Diazepam when I was very panicky and tearful but it's no long term answer.
I am self injecting another course of loading doses for now. My neurological symptoms just seem to be getting worse...tremor tingling and burning etc. I am also going to get the other nutrients up to speed.
Just a thought, but many years ago when I was on mirtazipan, I had reactions that made me just like your symptoms.......could it be the drugs? I have no medication for anxiety now, preferring to use more natural methods. I’ll never forget feeling that way though, very scary
That us a good point but I felt worse before I was put on the M just more nervous and really panicky. I hate having to resort to it but intend to kick it as soon as possible.
Thank you for thinking of me .
Are you feeling better now and do you self inject?
Yes kitty flowers, I’m much better now thank you. I do think my anxiety problems were due to B12d all along, so was deficient for several years and the M being the wrong treatment just made it worse. I manage anxiety by trying to get out and about, keeping off screens as much as possible and eating a better diet. Yes I self inject as my GP has very little understanding. The thought terrified me but it’s fine.....so easy. Hang in there, the people here are great and very helpful.
Hiya only just seen this post and thought I'd add my two pennith, or share the things that have helped me. I am regularly taking b12 injections too. For safe way of taking potassium increase your intake of bananas. I have suffered dreadfully over the years with anxiety and exaggerated feelings of dread over relatively minor events. I also have suffered with digestive issues for as long as I can remember. About a year ago a friend gave me some milk kefir grains (go to youtube and search make kefir and loads of videos will show up). I made my fist batch of kefir - very simple - and pretty much overnight both my anxiety and my digestive issues cleared up. I drink this daily and as long as I stick to this, no return of symptoms. Amazing! there is much research being done these days on the link between the microbiome and mental health and in my case I have found the link to be absolutely real. Fermented foods such as kefir are a fantastic way to improve gut health and of course gut health is linked to our reason for getting Pernicious Anaemia in the first place. Good luck and I hope you have found lots of helpful advice from your post.
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Deterioration 
So fed up with feeling like this...
Hello! Another Newbie, and my story so far...
very high B12 no injections or supplements 
