So I'm 2.5 months in to self-injecting now, and I know that's still early days. I'm injecting every day now, and taking 800mcg of folinic acid (my folate levels are at the top of the range after 6 weeks of taking 5mg of folinic), my iron profile is good, and my vitamin D is adequate (110). I'm still consuming a lot of potassium rich foods, and was supplementing with a b complex.
As mentioned in my previous posts, I was prescribed an anti-depressant (mirtazapine) for the anxiety and depression caused by B12-deficiency, and also for my total loss of appetite.
2 weeks later, my appetite is still crap, and the horrible agitation (restlessness, feeling of unease, whole body shaking) that I've had for months has become extremely bad. It seems to be getting worse by the day at the moment.
Is this still reversing out? Am I missing some crucial co-factor? Why is this getting worse? It's becoming too much to bear.
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Laverdista
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HiSorry to butt in. Are you taking a b complex rather than just folate. B12 reactions need several of the other B vitamins. It may be low levels of one of those that is effectively throttling back your processing of b12 & folate. Most would include folate so you would probably not need to take that as well.
You want a b complex that has the more active versions, ie methylfolate, methylcobalamin etc.
Many on here recommend Thorne basic, though my father had difficulty as they are a large capsule, but you only need 1 a day. Instead we now use the igennus Super B-Complex, 2 tablets daily but small ones. Both are available on Amazon.
During the summer I reduced some of my other tablets meaning I didn't need any half tablets. I stopped using my dosing boxes and then kept forgetting to take my B Complex because they weren't conveniently at hand. After a month I felt that the B12 was not being as effective as it had been. I made a conscious effort to take the B Complex daily and have really found a difference.
Hope my experience can help you or that someone else can come along and give you some answers.
Thank you. Don't worry about butting in! Interestingly, I stopped taking my old B complex about a week ago, as I'd run out, and the two bottles that I bought to replace it either seemed to give me jitters (Cytoplan) or seemed to have very high levels of B6 (Sunday Naturals 'Sensitive'. Should have checked the label before I bought it!).
I'm supposed to be seeing a functional GP on Tuesday, and I have a feeling I'll be getting a full vitamin/minerals screen, which should show if I'm particularly deficient in anything.
I also find my symptoms worsen if i don't have the vitamin b complex. I'd stopped the b complex (because i kept forgetting it) and found that the fatigue and tingling were getting worse again. I restarted the b complex and the tingling and fatigue improved within hours to the extent that I've reduced my injection frequency (from 3x a week to 2x a week, but this is still massive to me) and (touch wood) I'm ok. I had to reduce the frequency of the injections because i felt like i had too much energy (not a nice feeling)!
Wonder jf the agitation I've been feeling (which sounds like what you're describing) could be worsened by the fact that I've been injecting every day for the last 2 weeks.
Possibly. It might be worth leaving off for a couple of days and see if it settles again. I've never had that feeling last more than a day before, so I'm taking it as a sign I'm finally loaded up!
It sounds like it could be side effects of the mertazipine or did it start before the prescription. shakyness and agitation I have seen before in anitdepressants. I used to work in mental health.
When you say your iron profile is good I would suggest that the higher end of the mid range is more optimal for a PA person, not within range at the bottom end. When I started increasing B12 by EOD injection I needed iron to make good blood as everything in my biochemistry rearranged itself. I understand this now as a massive recalibration after years of multiple deficiencies.
Worth checking online for possible effects of too much of too little of any supplement you are taking, and considering varying the amount to see if that has any effect.
For me, reducing my dose of folinic acid (after successfully taking it for many months) dramatically reduced anxiety
Thanks. Had reduced my folinic acid from 5mg to 800mcg, but so far no change. But definitely wondering if it could be something else. For the last 2 weeks have been injecting B12 every day. Wondering if that frequency is just too much for my body?
Sorry your feeling so rubbish, so many have given really good advice , this forum is quite literally a life saver. As others have said the best supplements to take as the most bioactive forms, like methylfolate and a good bioactive B complex. So hopefully you will get full vitamin and mineral screen and ask for full results, numbers and ranges to post here and people can help again with good experience and advice. Many health professionals even "experts" don't really seem to have a full grasp or understanding of biochemistry. As you know B12 deficiency can cause anxiety, depression and nausea/lack of appetite so it might just be you are still early on your recovery journey and need more time. Mirtazapine is an older type of tetracyclic antidepressant, not used as much since cleaner drugs were developed. It increases release of serotonin , but has been linked with serious side effects due to high serotonin. It could be also that it is just a bit early and hasn't had chance to work yet , most anti depressants take about 4 weeks to start helping, but mirtazapine can start to improve how your feeling with 1 to 2 weeks and improvement continues upto 6 weeks. I would fully disclose to the prescriber that you have not felt any improvement and indeed feel worse in some aspects. At 2 weeks you should probably be feeling some relief and maybe it's your B12 and co factors not being optimal that is the cause. Hope things improve for you soon, do let us all know how you get on.
Thanks so much. As you say, I should be feeling some improvement from the Mirtazapine by now, even if it hasn't reached 'full effect'. Indeed, one of the reasons I was put on it (apart from the appetite stimulation side effect of it) was that it works pretty quickly.
I'm not able to go onto an SSRI at the moment, as I'm still waiting on tests to rule out a neuroendocrine tumour, as my hypertension has also been badly affected. Indeed am currently sitting in A&E at my GP's request as I've had dangerously high BP levels over the last few weeks. That too could be caused by B12 deficiency, although if anything it seems to spike after my B12 injections!
Hopefully the functional GP may find something that my typical NHS blood tests have missed.
Magnesium deficiency can cause high blood pressure too so yes hopefully the functional GP can get all minerals and vitamins thoroughly checked and might shed some light on things. I hope you get some answers soon and some relief 🤞
Thanks. They said my thyroid looks normal, but I do notice that my TSH level has gone down from 1.5 a year ago, to 0.7 a few months ago, to this a couple of weeks ago.
I am sorry you feel so unwell. I realise you say in your post that most of the symptoms you are experiencing began before you started taking Mirtazapine.
I wonder if you have read the leaflet that comes with your Mirtazapine.
Many of the symptoms you are dealing with can be exacerbated by taking this medication. Listed amongst Common Side Effects are Shakiness or Tremor also feeling Anxious.
Also mentioned is that it’s important to talk to your doctor 2 to 4 weeks after starting this medication to discuss how Mirtazapine has affected you.
At this point I feel I must point out that I am not medically trained in anyway. There is no substitute for approaching your doctor with any concerns you may have in dealing with your illness.
I sincerely wish you well and hope your condition improves.
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B12 deficiency 
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