I've been self-injecting alternate days for almost 6 weeks now, using hydroxocobalamin prescribed by the GP. I was showing slow improvement, e.g. my speech was clearer and the fatigue was less overwhelming. However, the last few days my symptoms have got worse again, I am more fatigued, the stutter has returned and I'm having problems with cognition.
Has anyone else experienced this, and if so, why would this happen when I haven't changed my treatment? I'm hoping for reassurance that this is a temporary blip, or maybe the result of overdoing it.
I have learnt so much from this forum since my diagnosis in early September. What an amazingly knowledgable, friendly, helpful and compassionate group this is. I wouldn't have got where I am without you.
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Maisiethedog
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Thank you for your reply, helpful and informative as always! Martyn Hooper's blog is particularly interesting.
When I first had blood tests in early September my haemoglobin was 13.2, my serum ferritin was 17 and my serum folate was 3.8. Since my iron and folate both seemed a little low, I started taking 14mg of iron and 400 mcg of folic acid. My last blood test confirmed that the macrocytosis is resolving (MCV of 101 compared to 104), but my haemoglobin has fallen to 12.7, since within range but falling, so maybe my serum ferritin is now below the threshold. They didn't check any serum levels so I'm just guessing.
It's such a job to get the GP to do anything, I'm just thankful he's prescribing IM B12, and don't want to fight for more tests. I guess I'll carry on with the iron and folic acid and eats lots of bananas!
When I developed PA, I was injected once a week for 2 months and then 8 weekly thereafter. Had PA for 32 years now ad still injecting 8 weekly. I wonder if it's overdose. See your GP and check your dosage. Kind regards.
Thanks for this. It's encouraging that you are managing your condition with comparatively low frequency. I'm not worried about overdosing, but once I'm well again, I'll be keen to reduce to the lowest I can manage on.
Don't worry about overdosing but do check that you're not overdoing things. It's easy to get carried away once you start feeling better so continue to eat and rest well as you recover.
Are you taking folic acid supplements? I found that they made a difference to me.
I have been self-administering every other day for over six months and the improvements are still happening but not in such a big way as at the start and I also experience some reversals if I get too tired. Last week my feet felt like I was walking on broken glass but they're getting back to the altered sensations that are more tolerable than pain.
Thank you, this is really helpful and encouraging. It looks like I need to persevere and can expect improvements to continue for a long time. I think you're right, I need to be careful to rest more. It's so tempting to overdo things after the smallest improvements, but this could be why I've had a setback.
It’s a tricky one to give you a simple answer as we are all so unique. I write a diary, symptoms, food, what time I get up, how active I’ve been. I’m very in tune with my body. If it needs a rest then it needs a rest. If I’m limping then my sofa and I are one.
I know if I do too much exercise (walking, swimming - the first time I got back in the pool - I did 3 lengths and felt utterly exhausted) there’s ‘payback’. If I get emotionally stressed - I will physically suffer. As a woman - I need more iron and B12 at that time of the month - that’s just me. I very rarely drink - but had 2 in June for a friend’s big birthday- I was on the sofa for 3 days. Not worth it.
But as others have said B12 doesn’t work in isolation and needs other cofactors (vitamins and minerals). I prefer to call them essential micronutrients. I know others on here take a multivitamin. Lucasussex has mentioned magnesium. I take magnesium threonate (as advised by a private dietician but that is individual care).
I recently found out that ATP (so that’s the energy in all cells really needs this wonderful mineral ). So, talk to your GP before further supplementation as other bloods may need to be taken. One can over supplement as well as under. Like sleepybunny said I’d never take a potassium supplement either.
Thank you for your careful and helpful reply. I will definitely look after myself more but also try to persuade the GP to check other levels. It's a bit of a battle, but worth getting it right..
Oddly enough, I went right off alcohol when I was at my worst, but have recently been able to face the odd glass of wine. Perhaps that has played a role. Maybe I'll just have a teetotal Christmas this year!
1) Don't panic (and I know how scary this set-back feels) there will be a solution!
2) Yes, loads of us have experienced this.
3) There are logical explanations that are possible causes and if you work through them you will be back on track.
If you have been deficient for some time there will be a lot of damage to cells, particularly nerve cells, including neurons in your brain, which need to be repaired. Just as when you are rebuilding anything you will use up other resources more quickly in the process.
As well as for cell repair, B12 is required for nerve function and energy release too.
In all these processes B12 works in conjunction with other vitamins and minerals throughout your body, and some are more closely linked than others.
While all nutrients are needed, the main ones are folate (vitamin B9), potassium, magnesium, iron and vitamin D. Unfortunately the digestion and malabsorption problem which has caused the B12 deficiency may well be reducing your uptake of other things too.
Because the processes which use B12 need other nutrients to work properly, if you are short of anything else then that will become a "limiting factor", the B12 process will not work properly and you will suddenly stop seeing a benefit from it. Sound possible?
You cannot overdose on B12 but the others do have maximum requirement levels so it is best to get blood tests done for these and use the results as a guide to your supplementation.
Unless you have haemochromatosis or are on anticoagulants, a good place to start, as soon as you have had your blood tests so as not to skew the results, is with a broad spectrum A-Z multivitamin and mineral supplement (basic supermarket ones are as good as, if not better than more expensive branded ones) plus a diet especially rich in the others.
It is perfectly safe to supplement with 400mcg folic acid for years, even if you aren't deficient, and so you could add these in too. (Available from all pharmacies and supermarkets for potential pregnancy). More than this is unadvisable unless you know you are seriously deficient and then only for as long as it takes to restore your levels.
Always remember that even if your guts aren't working very well, you still get around twice the benefit of nutrients from food than you do from supplements, even the best ones.
You can look them up online to see what are good sources of each that you would like to eat and drink. Basically red meat and fish, dairy products, nuts and seeds, vegetables, salads and fruit, but some are better than others.
I hope this helps and you are soon back to improving again.
Thank you for your kind and encouraging comments. Thank you as well for such a helpful explanation of why other nutrients are so important. "Limiting factors" makes perfect sense. I need to get blood tests and then work out how and what to supplement.
Thank you for your reply - it helps to make it all worthwhile.
Once you have got the basics sorted out, if you are still having problems, please come back to us here and ask again as there is another degree of fine tuning that can be done, eg the type of supplement you may need to use, etc.
And also you might just be one of us who needs more B12 still - but I get the impression that probably isn't the case because you have been doing well already on every other day.
For a while I tried more and more B12 but in the end it didn't matter how much more I put in, nothing would work until I had got the balance of the supporting supplements right. In the end I found I need 1.5mg of hydroxocobalamin every day and any other improvements must come from as good a diet as possible, balanced with specific supplements. I've been on that regime for 6 years and all the while have been gradually improving.
I appreciate it is difficult to judge things when there is more than one thing causing the problems but you will get there, I promise - we all do in the end if we keep trying!
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