Pernicious Anaemia Society
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Therapeutic trial - how do I know if it's working?!

Hi all, I posted before (https://healthunlocked.com/pasoc/posts/136700379/stunned-in-a-good-way) when I managed to persuade my GP to begin me on B12 injections. Because my serum B12 test had been within range (176 pmol/l (110-664)) and I had unfortunately made testing of MMA and homocysteine pointless by taking some sublinguals in my despair, she, in discussion with consultants in haematology and neurology agreed to a therapeutic trial instead. I'm to see the neurology consultant on the 7th December because he saw me when I was much more ill in summer, so will theoretically have some kind of baseline from which to judge any improvement. They think (and I can totally see their point) that because my diagnosis is relapsing/remitting MS, and because I have very gradually been improving since my worst point in February anyway, that it would be difficult to know whether any improvement in symptoms would have happened anyway.

Also, as well as very very slowly improving, my symptoms do tend to come and go a bit. Mostly I still have tiredness, intermittent numbness/tingling, some pain in my pinkie finger and foot and tired eyes, sometimes a kind of cold skin sensation too. My GP said something like 'if you have a miraculous improvement we'll know we're on the right track', but I know that neurological symptoms can get worse before they get better and can be quite slow to improve, so my question is, how can I know, for the purpose of a therapeutic trial, whether the B12 is helping?!

I'm getting an injection every other day and have only had 3 so far. My colour has definitely improved and I feel a lot less cold on the day of the injection. I feel quite sleepy soon after the injection too! Any advice appreciated :)

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Keep a diary where you score each of your main symptoms 1 to 10. That should show any improvements.

I found that my fatigue levels were my best indicator.

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Thank you, I'll try that.

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Hi,

I think fbirder 's idea of keeping a symptoms diary is good.

"My colour has definitely improved and I feel a lot less cold on the day of the injection"

I'd also keep brief notes of any improvements in minor symptoms as well eg I found my horrible dandruff disappeared and moons (lunulae) reappeared on fingernails.

Perhaps highlight any symptoms that improve on B12 that don't normally improve during an MS remitting phase.

GP said something like 'if you have a miraculous improvement we'll know we're on the right track',

My experience is that improvement on B12 is not miraculous. It can take weeks even months to show improvement.

There may be something in the book "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart which has a chapter about MS.

There is a B12 documentary by Elissa Leonard mentioned in next link which describes patients who have developed MS type symptoms .

b12deficiency.info/films/

I hope B12 treatment has a positive impact on your symptoms. Fingers crossed for you.

I am not medically trained.

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It seems unrealistic of GP to expect a miraculous improvement when, as I'm sure you probably know ktwing, B12 deficiency creeps up v. slowly over years and, as most of us have experienced, is often equally slow to show a noticeable improvement - it's usually very subtle and often a case of two steps forward and one step back, depending on the individual, how much rest they're able to have, stress they're under, etc. The Dutch research results describes how long this can take, so I really hope your GP will be patient and not expect a miraculously quick response, especially as it appears B12 deficiency has probably already resulted in some neurological damage......

I've been SI every other day for eight months and, although improvements have been quite slow, the crippling fatigue has gone, although I notice this and tingling in toes does return if I overdo things. The most noticeable improvement has been in memory, concentration, anxiety and dysphrasia.

I've also been taking other vitamins and minerals as it's likely they're not absorbed either.

It all looks really hopeful with the improvements you have already started to feel 🤗 Really hope all goes well for you.

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Sorry but i think your doctor is not clear in his thinking that b12 injections will cause miraculous improvement if that is the cause of your problem.

B12 helps make healthy red blood cells it takes appox 120 days to get a completely new set of healthy red blood cells and so i am really certain that a miraculous recovery is ridiculous.

So here is what i would ask them since you definetly have improvement with just 3 injections.

Why is my b12 low?

Tell them to test for every possible cause of a b12 deficiency. Celiac, h pylori, chrohns, intrensic factor antibodies, ect.

I would also demand folate and FULL iron panel. I say this because, how long can the b12 possibly keep improving your issues if you dont have the other co factors needed to make red blood cells?

I see that a lot of gp in UK only test ferritin but that test is useless if your have h pylori, which is a chronic infection, and therefore your body will segregate the iron in your body away from being available as the body sees iron as toxic in chronic infection

. niddk.nih.gov/health-inform...

A full iron panel works much better to see your iron absorbtion ability.

I only noticed a change in my color after my 6th injection so you are definitely making improvment. I stopped improving but then tested positive for h pylori. So that has to be killed.

You are the most knowledable person about your body. Please take someone with you to your gp appointments as that will reduce the chances of the gp pooh poohing your request for testing that is necessary to have a complete picture of your health.

Best of luck!!!

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Thanks everyone - yes, I thought that the GP was wrong to expect very much, but because it was my idea to do a therapeitic trial, I just suddenly wondered how I'd be able to clearly say 'Yes, I think it's working'! It's really good to hear the kinds of lengths of time that others have taken to see improvements, gives me a lot of hope :)

KimberinUS Thank you, I've been cleared for H pylori, coeliac and the IF test was negative. I consistently have very low serum ferritin without supplementation (am now supplementing) but my haemoglobin isn't bad and my folate is within range. Is the full iron panel more than this?

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Link about set of iron studies, also known as full iron panel (I think).

labtestsonline.org.uk/under...

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Thank you!

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Yes. My full iron panel shows Tibc ( total iron binding capacity), uibc ( Unbound iron binding capacity), serum iron, iron saturation %, serum ferritin, and reticulous count.

In regards to testing for h pylori, did you have a blood, breath or stool test?

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Okay, thank you. The H pylori was a stool test.

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Stool test is reliable as long as you have not taken any bismuth (pepto or tums) or any ppi ( acid reducers such as prilosec or previcid) for prior 2 weeks.

Glad you have ruled it out.

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