What to do

I have just had a form from my Surgery for a blood test for B12 and TSH.

This is over a year after my measly 5 loading B12 injections and retest (April 2016) when I was declared 'normal' in spite of starting with B12 103 < 180 - 1000. with many neurological symptoms.

I have been having B12 injections privately, when I feel I need them, since April 2016, with my neurological symptoms fluctuating. (Folic acid clivealive I take 400ugs a day)

The leg numbness and not feeling heat have gone but my balance got much better but is now as bad as it was at the beginning. (I now also have 2 vertebrae fracture, degeneration of the spinal cord and bad double vision)

My private doctor gave me a thyroid test a few months ago, no problems there.

I would like to know why symptoms are getting better and then worse again but I don't think a retest is going to help there.

My B12 will be in the ozone levels which will give them an excuse for whinging about overdosing and toxicity.

My first reaction is to tear it up. Any thoughts on anything in this post welcome.

Last edited by

7 Replies

oldestnewest
  • Oh beginner1 my heart goes out to you as your "now experiences" dredge up some of the horrors I went through back in the late 1960's and early 70s before I finally got the P.A. diagnosis by which time I was a walking "Zombie", given two years to live (unless I ate raw liver three times a day) and with a sick wife and two daughters under five.

    Fortunately for me the four weekly substitute for raw liver, cyanocobamalin B12 injections "did the trick" and I'm still "clivealive" at 75.

    I do so wish I could wave a magic wand and cure all your ills.

    Are you a member of the Pernicious Anaemia Society? Perhaps they can help.

  • Joined the minute B12 was diagnosed.

  • Have you checked vitamin D levels too?

  • I had a blood test a few weeks ago - the main reason was vit D, but that was the one the lab forgot to do. ! I have had to have another test and await the result.

  • you say symptoms improve and then go backwards - have you kept a diary to estable the exact time intervals? if there is an exact time interval then this would seem to be the point at which you personally need to top up your levels.

  • Gambit62 Sorry I didn't write that very clearly. It was one lot of getting better and one going downhill, not many ups and downs.

    My balance and numb legs started getting better, after the 5 loading, plus a twelve week wait and retest, and a further 5/6 injections (2 a week) from my private GP. They returned to almost normal over after many weeks more. I continued to have 2 inj a week as I still had other symptoms.

    Then the balance started to get worse again until it was back to almost zero. The numbness has not returned but legs feel stiff and sometimes they feel as if they have stockings on. I upped my inj to 3 a week because I felt I needed them and that just about keeps me going.

    I have had so many things go wrong since being diagnosed in Jan 2016 (sinus mucocele 2 operations for that, and the back fractures and spinal cord degeneration)

  • beginner1 , this is so hard on you, isn't it?

    Keep doing diary of what you eat, what you do, symptoms and injections - I highlight everything that is a symptom to make it very clear to me at a glance when there are more, when there are less, what is hanging on, what is clearing up- even if no-one else ever sees it. That's up to you- and opportunity. I also have a symptoms list and symptoms charts (leave gaps for any new ones: I now get the yawns- air-gulping -which is new and a bit annoying and sometimes starts right from when I first wake up after 10 hrs sleep! )

    The list of symptoms has proved most useful: it's brief and to the point. My colour-coded charts have been called "obsessive" by my GP while I prefer "desperate", but admittedly have seen obsessive behaviour listed as a symptom before now ! The haematologist has scanned my list of symptoms and the neurologist at least read them. I saw him.

    I have a lot of lower back pain, which was called "ordinary wear and tear" then later "osteoporosis" -and which I still call a symptom. Since I have been taking Risedronate once a week and D3 chewable tablets twice a day, I think some of my other symptoms have also improved, although not yet gone. I got shin splints which went after about 5 or 6 days and I now think that was a good sign- was told it was probably deficient bones sucking up minerals and water and then having a fight for space with muscles etc, which makes sense. So its definitely worth asking for a bone density test if you have not already had one (mine as a result of a fracture)- I think the D3 would help you.

    My symptoms come and go in a very random way, and never go entirely. Sometimes I think I've spotted a pattern- then it goes awry. Sometimes I feel like I've had a really good day and perhaps its all disappeared -even feel like a bit of a fraud- then it all comes back which is very disheartening. I thought, when I went from 2 a week to 1 a month, that they were killing me- but I'm still here and I don't even know why. A lot of my brain problems seem to be getting better, but actually that's more to do with living a very small life these days. Damage limitation. I know my own capabilities and limits even if I can't predict them.

    103 was very low. Your GP should send you to a neurologist. Have you got someone to go with you, back you up, in case your GP thinks you're a moaner/ bonkers ? Someone a bit scarey, maybe? You need to get past your GP to the next stage somehow.

    My B12 started at 196ng/L (range luckily started at 197!) and last I heard it was over 2000ng/L - still got problems. But at least I'm getting looked at- this week: blood test (check on MMA and B12), EMG test, MRI brain scan, B12 injection, then blood test (check on MMA and B12 again after injection). All this effort might be to disprove previous Functional B12 deficiency diagnosis, since they all seem to think B12 is so dangerous. On the other hand, what if I had a brain tumour instead?

    You are way too precious to be treated so badly.

You may also like...