Confused by B12 deficiency symptoms

[Kerrieblue]

Good morning from a confused anxious member.

After I had my loading shots I tried to persuade my GP to give me more frequent injections due to my neuropathy symptoms and she agreed to two more, fortnightly. But she put a seed of doubt in my mind by saying maybe something else was going on rather than just B12 as my symptoms should have cleared up and therefore she was referring me to a neurologist. All my bloods came back fine apart from B12 and low thyroid for which I’m taking medication.

So I started SI and a lot of days I’m feeling like I’m slowly on the mend, but then last night was pretty bad, with tingles and electric shock feelings all over my arms and legs and feet, so I’m now wondering is this unpredictable up and down of symptoms “normal” after this time, or could there be something else going on, or has my GP just freaked me out? Also, could there be other reasons like diet/ something I ate for causing this to get so bad? Thanks for all the advice and support I’ve received on this forum.

[Technoid]

Your GP thinks that all symptoms would clear up within a month to 2 months after treatment? This might be true for very mild B12 deficiency cases with only mild symptoms that appeared very recently but in the case of neurological symptoms, which were present for some time I would be astonished if they were to completely clear within that time frame.

I would instead expect some symptoms to worsen such as increased pins and needles etc, maybe increased or new nerve pain before things start to get better, which will happen but could take a bit longer. This initial worsening period is sometimes described as "early treatment decline".

Obviously good to ensure blood tests are looking ok, supportive nutrition and supplementation, reduce stress, good sleep, social supports etc. When ready, introduce regular light movement of a kind that works for you of if you are already recovered enough for light exercise, even better.

[Kerrieblue in reply to Technoid]

Good morning and thank you for your reply. I’m so frustrated that the people who should be helping us with this (GP’s ) seem to be so poorly educated. My neurological symptoms started last November, so are well established, it’s the up and down of it that I can’t get my head around, and I’m searching for reasons that make one day ok and the next not.

[Technoid in reply to Kerrieblue]

I think most GP's don't seem to have the experience with treating B12 deficiency to understand what might happen during treatment. They are frequently suprised by symptoms worsening or new symptoms appearing after treatment starts although this phenomenon is well-known to specialists and often observed on this forum. When I discovered I was seriously deficient I immediately sought specialist care and advice since my GP could only say that I should "introduce meat" and that taking 1,000mcg B12 a day should adequately treat my deficiency. I did neither and other than seeking an immediate referral to specialist care did not bother to deal with his cluelessness any further.

[Technoid in reply to Technoid]

I have not had the experience that many report here of symptoms being better one day than the next but I do not have PA - for me things got suddenly worse after treatment started (in most respects), then stabilized, then improved over several months and I never had any regression or return of previous symptoms. This is not the experience of most forum members and I can only guess might possibly relate to the normal absorption/recycling of B12 which was not broken for me.

[Kerrieblue in reply to Technoid]

It really seems with B12 and symptoms that it’s a lottery! Glad to hear you are doing ok.

[Emiroskui]

May i ask you if which level was your b12 test results when youve diagnosed with b12 deficiency?

[Kerrieblue in reply to Emiroskui]

Hi there, level was 149

[jade_s]

It can very well be a rollercoaster the first months - 2 steps forward, 1 step back. So that in itself is not abnormal.

Especially if you've started to become more active - overdoing it can precipitate a regression like that.

And it's worth checking folate levels. Do you have any recent results? Do you take some form of folate at all? Low folate means B12 can't do its job.

I also suggest getting a hold of your latest thyroid lab results and posting on the thyroiduk forum. GPs tend to leave people undermedicated, and that can contribute to various symptoms. Mention also how long ago you started thyroid medication, and what you are taking. healthunlocked.com/thyroiduk

I personally couldn't tolerate any thyroid medication until my B12 situation stabilized. No doc has understood that one either.

[Kerrieblue in reply to jade_s]

Hi there, thanks for your reply. I’m taking folate daily and my thyroid levels were checked just a few weeks ago and GP said they were fine with my current meds, I was busy yesterday, could this really be the cause?

[jade_s in reply to Kerrieblue]

Yes being busy can indeed cause crashes or worsening neuro symptoms. I wish we had an explanation for it, i don't know why it happens, but it's very common especially in the early days.

I highly recommend getting a copy of your lab results. GPs tend to say everything is 'normal' but it may not be optimal for us individually. Many of us have learned the hard way, after years of being miserable and undertreated, that the "normal" range is very wide, and we can still feel very ill when we are at the extreme edge of the normal range.

[Kerrieblue in reply to jade_s]

Yes very true, results could be borderline bad and still told normal.

[Marlboro123]

My crashing fatique was at its worse in Jan, Feb and March this year, was s.i 3 times a week but was so up and down. I found that about 4 hours after a crash i would experience electric shocks and nerve impulses triggering finger twitches etc. I have noticed a difference s.i every day, it seems that is the key for me although it's all still a battle everyday but it has certainly helped me changing to more injections. All the best.

[Kerrieblue in reply to Marlboro123]

Hi, thanks for your reply, it sure is a strange one this B12 deficiency, glad to hear you’ve found a routine that works for you

[Rexz]

Hi Kerrieblue, As others have said it does take time for B12 to begin healing the myelin sheath protecting your nerves and also for any damaged nerves to heal properly. It took me months but I may have been an extreme case with whole right side body numbness. You do ask a great question though "could it be something I ate?" the answer is yes, absolutely. For me my extreme pain would begin at around 2pm each afternoon. It would feel like a thousand minions stabbing my feet with ice picks and would last through the evening until I'd wake up the next morning and the pain was gone. I went to a University Hospital and they tested me for gluten and dairy sensitivity and I was very positive for both. Actually most people are sensitive to gluten and dairy they just don't know it. But when your have nerve damage and you eat something you're body is sensitive to your Mast Cell fir histamine (a normal reaction) however those Mast cells that abut a damaged nerve when they fire histamine it causes a feeling of pain and that also can feel like an electric shock. Maybe stop eating Gluten and dairy for about a month and see if that helps with the pain.

Anyway that's the short version. If you'd like more information let me know.

Best wishes, Rexz

[Kerrieblue]

Really appreciate you reply. As a strict vegetarian, I do wonder whether diet is contributing to all this. Wishing you well .

[Technoid in reply to Kerrieblue]

Hi Kerrieblue,

In a previous thread I posted a comment with some diet and supplementation tips for vegans/strict vegetarians, you may find something useful in there:

healthunlocked.com/pasoc/po...

I do not have a nutritional qualification but I have studied short courses in nutrition from Cornell and Stanford.

[Kerrieblue in reply to Technoid]

Thank you, I shall look that up.