Pernicious Anaemia Society
14,649 members10,434 posts

Told To STOP taking supplements Immediatly

Hi again all,

so I had my second appointment with the new doctor after having the blood tests done, and the first thing she does is question me about what supplements I am taking, which I had said to her when the blood tests were order that I had been taking high doses of B12 so were likely to skew the reading, which yes it did as the serum B12 came back at >2000.

I have to STOP taking Supplements Immediately, why am I obsessed with B12 and Pernicious Anaemia, it is nothing to do with any of my problems. I have TOO much b12 in my body. I have to be Stict with you it is nothing to do with anything, the max amount of B!2 should be below 900.

Just as well I didn't say I was self injecting then!

So basically I said I would put aside the B12 but I needed to know why I have all these symptoms, why I have little balance, why I am exhausted after doing anything remotely active, why I have pins and needles and numbness in my hands & feet etc..

She is now going to ask for me to have a MRI scan to check my brain, but it will take 3-4 months for the appointment to come through.

I shall continue with SI B12 as I know it has made a didfference

17 Replies
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Just ask her for a reference to where it says that too much B12 is harmful. Then show her the Stichting Tekort article in the pinned post.

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Hi,

Thought this link might be of use...

b12deficiency.info/b12-writ...

The PAS (Pernicious Anaemia society) may be able to pass on info on this issue.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

"why am I obsessed with B12 and Pernicious Anaemia, it is nothing to do with any of my problems"

Feel cross on your behalf, I figured out a long time ago that i was symptomatic for B12 deficiency, was unable to get treatment, continued to deteriorate and finally decided to treat myself and then some of my neuro symptoms disappeared eg strange limb movements.

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Thanks Sleepybunny, it really is frustrating trying to deal with these people, I thought as I had changed Surgery I would have a better chance of being listened to, I have had 3 years (same as many people on here), with symptoms gradually getting worse and new symptoms appearing, trying to get doctors to listen to me and even trying to get them to investigate that there is a problem (even if it isn't b12, there must be something wrong).

May/June of this year I was at the point were I though I was actually slowly dying as every week I was that bit worse than the week before and in desperation I trawled the internet to try and find answers and came across b12 deficiency site and then this forum, having filled in a questionnaire and then sending an email to b12 deficiency site I had Dr Chandy call me the very next morning (which I hadn't expected), and after a long conversation he recommended that I SI and told me where to get everything I needed.

I am so glad that I have taken control of my own health, as I dread to think even just a few short months further along the road as to where I would be with my health, but at the same time I want the NHS system to acknowledged that there is a problem and that they should be helping me to treat me, as one of my concerns are that what if something happens in the future and I do not have the support of the NHS system, and I am not able to SI or there is no family member to do that for me and there is nothing on my records to say that this is what I need.....

So I shall continue to self i and try and battle with the powers that be. I know how much of an improvement I felt a few days after SI and although I still have bad Balance problems, staggering etc the SI has definitely made a difference.

One day in the not too distant future, maybe the medical Profession will be educated to realise there really is a problem.

And I know Martyn Hooper is working so very hard on all of our behalves to make this happen.

:) xxx

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Ditto Brava.

If WE all learn and tell them surely eventually the tide will turn!

Its up to US! THEY have proved they are not bothered.

LEARN. BE VOCAL. DO NOT LET THEM GET AWAY WITH THIS

Soap box away

Love

⚽️

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It's odd how doctors often won't help but do get annoyed if we help ourselves. I think it's out of order to call you 'obsessed' with B12! You've simply done your best to get yourself a diagnosis and treatment.

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Yes Frodo, so very odd

:)

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I supplement high dose b12, it's helped a lot, my levels now just under 2000 which panics the gp but consultants all agree that it's not harmful as excess is wee'd out. Having said that they didn't believe I needed it as blood level in range (although low) however I'd been complaining of increasingly numb hands for 10 years then after thyroidectomy brain fog too. I learnt about high dose sublingual methylcobalamin fm the thyroid UK forum thank goodness, no more numb hands and brain fog only occasional instead of constant. Still running out of energy though when shouldn't so something else needs tackling too.

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Have you had your iron levels and Vitamin D levels checked?

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yes ahousefull, they were checked earlier in the year and were fine,

thank you

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Did you do your first SI by yourself or did you have it done my a medical professional?

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It's a good idea to have a professional show you how it's done. That means you'll be doing it right when you do it yourself. Then there's the small possibility of having an anaphylactic reaction. If you're going to do that then you really do want to do it with somebody who knows what to do and has the equipment to do it.

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Hi Fbirder & Female,

totally agree with you fbirder, I did not know about the risk of anaphylactic shock when I started to si, I watched a few youtube videos and hoped for the best, to be honest i don't even know now if I am doing it correctly now. Luckily I did not have any bad reactions, but had I known I would have been less inclined to do the first one on my own and would have tried to find a medical person if possible to show me how to do it.

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I have all these symptoms too awaiting MRI see a neurologist 6th December. I have been doing a GF diet as best I can of my own choice.. had a few accidents on the way misreading labels ect..but I would say there is a slight improvement in my symptoms.. and a good friend of mine was telling me about a lady friend of hers who also has b12.. who is also doing a GF diet aswell and felt loads better I asked her to ask her new friend was doing the diet well it turns out she was diagnosed as a celiac but not til TEN YEARS after she was diagnosed with b12. I will be asking the docs if this could be a contributing factor to my problems and see what happens.

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Fingers crossed for you blondie2505

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SHD BE UNDER BLONDIE 😡😡😡😡

With respect, dont "see what happens" time and your well being demand action. Read, the pinned posts. Educate yourself then educate THEM. If we all do it the tide must surely turn.

With love and hope that you are not content to wait 10 years!

⚽️

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My god I think your new doc is my doc's twin. He said that 2000 was the absolute top of the scale and that after that it is definitely toxic. He told us to google it - we did.. the ONLY reference we could find to B12 toxicity was when a patient has both kidney disease AND diabetes at the same time. Then, and ONLY then is B12 an issue.

We pee the excess out for heaven's sake!

I for one, with my case history being rather extreme, would agree that you should not heed her lunacy and stick with the B12.

Have you ever been referred to a haematologist? In the UK the NHS guidelines state that when someone is diagnosed with B12 they should be referred to a haematologist. Perhaps you should push for that too.

As for your MRI, you'll probably only see anything if you already have myelin damage and/or lesions from long term damage, but your symptoms do not sound severe enough for that YET (I say yet because if your B12 would stop - then you'd eventually get that way) OR if you have something else other than PA wrong with you.

I hope that you get the answers you need. Are there any other Quacks I mean doctors, in that practice? In my practice I have the lead Quack who told me that side effects from B12 are worse than not having it (he's the one that's always ranting on about what meds I am on "blah de blah") but also another doctor who we have managed to condition to at least referring me urgently to a haematologist. He said he WANTS to treat me with the injections but he doesn't know enough about it to feel competent to do it. (more like he doesn't want to get told off by Daddy Duck/Quack ummm Doctor)

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Have you had your other B vitamins checked? B6 can cause a whole range of problems as it becomes toxic in excess

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