Feeling like I've plateaued

[Charlie27612]

Hi I need reassurance, I was diagnosed with PA privately in nov last year after over a year of frequent 'not low enough for treatment on nhs' blood tests. I started eod b12 injections and apart from a break when I tried to increase to 3 days (mistake) I have seen slow improvements. A month ago I came down with a chest infection ,after 3 weeks I saw gp as I'm asthmatic and also have lung damage due to blood clots provoked by covid in dec 2020 now on rivaroxaban for life , the steroids and doxycycline did nothing, and I still have a bit of a cough. I recently had my thyroid dose increased to 125mcgs daily to see if some of my symptoms are due to that . I do belong to a b12 group on facebook, and as I feel the injections dont seem to be giving me much lately, I also have very bad back pain almost the length of my spine, so not sleeping well!I was reading about magnesium and people supplementing it , I had low vit d too, and wear a patch once a week with vit d3, magnesium, zinc and k2 recommended by private dr. With my terrible brain fog I find it so hard to retain info and would like to know where I can turn for advice regarding extra supplements( or if I even need them) I take 5mgs folic acid on the day of injections, my last blood test (private) showed Ferritin of 89 and folate 30 I know I need to keep an eye on iron too, repeating this in july. Sorry if its rambling but thats how my brain is 🙄 should I increase to daily injections for a while and is it safe to take 5mgs folic acid daily as private dr said alternate days. Do I need to increase vit d etc start taking magnesium? I'm concerned as I know you can have too much of some vitamins.I was taking b complex too but I've stopped that, thanks for reading this rambling 🤣

[Nackapan]

Firstly it's early days.

5mg folate can give symptoms if not needed.

It shoukd be short term only.

Then a maintenence dose of 200-400mcg.

Then bloods checked after 3 months again.

I was still very ill at your stage.

You've also got other conditions to contend with.

Keep going with the b12.

Address and take supplements going by your blood results.

Over dosing with vits csn just add more side effects .

In my opinion a broad spectrum A-z vitamin and mineral supplements s good idea daily.

You need time .

It's a rollercoaster of thd worst kind.

Try and enjoy a few things yoh can do .

I had to wait about 3yrses to be able to watch TV and listen to thr radio.

We never take anything for granted agsin.

Main thing is try snd go with it.

Hard not to panic when things digress .

Keep a diary as improvements csn be very subtle .

[MrsTuft]

I’d say keep going with EOD or daily injections. Folate (everyone argues about how much - I felt awful on 5mg). Bcomplex or multivit containing b’s but with low b6 - make sure that b6 doesn’t get toxic. At least 400 mg oral magnesium glycinate daily - a patch sounds nonsense to me as magnesium is a very big mineral! Extra vitamin D. Get ferritin up with extra iron as 30 is rock bottom normal. Drink coconut water for potassium. Keep going. Covid has set you back but keep going.

[Wwwdot]

Charlie

Nackpan and Mrs Tuft are right. It is early days as it is for me as I was diagnosed October last year with very low B12, folate and Vit D.

Keeping a diary of symptoms, treatment and activity is vital and is the only way you will be able to self manage. Only you has the opportunity to see the full picture and this information should help you to guide the medics in time.

Only change one thing at a time and give it at least a month before you evaluate or change something else - some changes need longer.

I was struggling on EOD injections so I decided to increase to daily as you can’t overdose on B12 but you can overdose on other vitamins. I would keep folate to EOD. I have been self-injecting every day for two months now.

Try to go with the flow and I know this is hard to do but listen to your body. I cope better when physically active days are followed by slower days to allow recovery. And my diary has shown me that I recover more quickly from mentally active days.

I suffered with back pain and I found some very gentle stretching exercises helped and I even treated myself to a couple of massages. I think all the tension and worry went into my shoulders and neck and in turn into my back. It may be similar for you.

Finally and I am sorry this is so long! Set yourself small achievable goals. Each day I do something I don’t want to do and would gladly put off (loads on my list - like phone calls, emails, letters, cleaning something, sorting a drawer etc ) and one thing I really enjoy - like to lie in the sun, to go for a coffee with my mum, to walk on the beach even if it’s only for 10 mins, paint my toenails!

This week I have finally turned a corner and I am seeing subtle new signs of recovery. I feel hopeful and I so wish that you will soon be able to feel the same.

Keep us all updated as this is a wonderful group who will help you through the ups and downs. Take care and big hug 🤗🤗🤗🤗

[Ghound]

Hi Charlie, As Nackpan says - it's still early days. Six years in from my diagnosis I've realised that it took a few years to get to reasonable health.

Unfortunately we're all in it for the long haul, and I've found there are peaks and troughs of how I feel.

Other illnesses definitely impact on my B12 issues and temporarily set me back.

You've had a rough time with your health, so please don't be surprised or despondent that you're not as good as you could be.

Keep going with the injections, they are always doing you good, even if you don't feel much benefit at the moment.

Good luck and best wishes x

[Cherylclaire Forum Support]

A lot to cope with there, Charlie.

5 mgs folic acid seems unnecessary if folate at 30. Top of the range is usually about 20 ug/L.

My folate was erratic for two years - I'd have prescribed supplement for 3 months, get up to >20, then drop down again to 5 or 6 - which isn't extremely low or even out of range, but better for us in the top third of range, I think. After a while, and close monitoring, folate stabilised. Now, seven years on, I don't have regular monitoring as my GP has left, but think I'd be able to tell if I started to get a problem. I would then get level tested.

My ferritin was similarly difficult to maintain at a good level and would drop - again, took a couple of years to stabilise. My GP said that 60 ug/L would ensure I was symptom-free, but my oral medicine consultant (for burning piecrust tongue, saliva duct strictures) preferred 80 which was quite hard to achieve and maintain. He has ensured this has been monitored lately.

Difficult to know for sure, but I'd say that your ferritin level is good.

Vitamin D: I was found to have osteoporosis of the spine, so I get D3 and Raloxifene on prescription - and a Dexascan every couple of years now, as it has stabilised - even on the last check, demoted to osteopenia, so all going in the right direction. The K2 I get myself.

A mild B complex can be a good idea, but check that you aren't overdoing it with any of the ones that can cause you problems. Tablets can sometimes contain many times the daily amount necessary.

I still have memory and cognitive problems - stress and tiredness certainly triggers for me. Pace yourself, complete one simple task at a time without interruption, and don't take on anything that can't be completed within an hour or so. Don't make promises to others, then you won't feel obliged or guilty when it proves too much for you. This will improve.

I continued with frequent injections - EOD at first, for about two years. When I felt that they'd made a considerable difference, I tried putting this off for an extra day. When it is time to try, you will know. We are all different.

Be good to yourself, eat well, get regular tests. You should be aware that some prescribed drugs can have a depleting effect on B12 - I am saying this because you have other conditions that require treatment too. Worth looking this up.