Pernicious Anaemia Society
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Is it me or the 5 doctors refusing treatment who are wrong?!

Absolutely flabbergasted at this weeks events.

Told on 28th Nov I’m B12 deficient (test result was 190). Put on tablets. Told since second blood test that I’m no longer deficient and in range (530) agreed to 4 injections anyway (once a week) attended this morning for the first, nurse queried why I wasn’t on the standard loading doses of 3 a week for two weeks then spaced out thereafter...advised me to book urgent appt with doc. Went this evening for the doc to refuse ANY injections saying you’re in range and NOT deficient.

I’m in total shock...I can’t be bothered to list all symptoms again but I’ve practically got them all.

I walked out after reading her a section from ‘Living with PA..’ by M Hooper that specifically highlighted the importance of treating symptoms regardless of results. She said it was wrong...I have no hope there. That’s the 5th doctor who won’t listen to me.

I appreciate I may be wrong but surely it’s easier to go down this route first to eliminate it before looking at ME or something else. It’s harmless and cheap. I’m at a loss...I’m not going back, cancelled my other injections and going to register at another practice tomorrow. In the mean time I’ll have to self administer and hope for the best.

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Hi Turnerpie ask to have your Folate level checked too at your "new" practice.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels were "bumping along the bottom of the range.

Your doctor should be treating your symptoms not just looking at the computer screen.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment" (which you paraphrased from Martin Hooper's excellent book to you previous G.P).

google.co.uk/url?sa=t&rct=j...

Sadly any serum B12 test taken now will be "skewed" by the supplements you've been taking so you'll have to be very persuasive about your recent history.

Make a list of your symptoms and present this to your new doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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That’s really useful thanks Clivealive...what you don’t know by now probably isn’t worth knowing!

I’m taking Vit D, B9, B12 and iron in tablet form presently. I’ll ask for everything to be checked but I fear like you say, I’ll get skewed results now.

I’m just so frustrated to kept being told it’s in my head and I need to admit to myself I’m depressed or I’m just delaying treatment for it. They refuse to treat symptoms without results to ‘prove it’

I feel like I want to get trained up and visit surgeries to educate them. No one should suffer for something potentially this serious and life limiting when it’s non toxic, safe and cheap to attempt to treat!

Thanks for replying. It’s lovely to have the support...

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Suggest they take 87 minutes out to view the Sally Pacholok video.

google.co.uk/url?sa=t&rct=j...

You may well enjoy it yourself

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I’ve only watched the fog one from PAS I’ll watch now :) thank you

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Turnerpie, what was the strength of the tablets that you were given?

- the rise in B12 levels is significant which does imply that you don't have an absorption problem and that the original deficiency may have been down to diet rather than an absorption problem.

It can take quite a while for the effects of a long standing deficiency to clear once B12 levels are corrected though.

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50mcg x3 a day. I’m now taking x2 500mcg a day. If my levels are up enough I don’t understand why my symptoms are so bad.

I understood it to be that the B12 can show as high in your system as it’s concentrated in your blood but that doesn’t mean it’s being absorbed at a cellular level?

I’ve started injections now but really have no idea if it’s not B12 deficiency what it is. Maybe I’m fixed but like you say symptoms will take a while.

Doc doesn’t even want to hear me mention B12 like it’s a dirty word but has no idea what else it can be...

Just have to ride it out I suppose

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Have you had your thyroid tested - overlap in symptoms and a significant cross-over with PA and hashimotos?

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Yes my thyroid test was ok. Wish I could get my results I’ve asked twice and just verbally told them but I can’t remember everything he said...barely remember my name some days!

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It is possible for B12 to be a problem at normal levels but tends to be rare genetic problems with metabolising B12.

raised B12 levels can trigger problems that keep B12 in your blood but this would mean that your levels would need to have been elevated at some point.

It really doesn't look as if you have a problem absorbing B12 from your food - which is what PA is.

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Yet one doc said I wasn’t deficient and my regular doc said 530 was still not high enough and authorised injections. Talk about confusing!

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can you go back to the doctor that authorised the injections?

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I have and been told I’m depressed...

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Turnerpie - members are often told Thyroid results are OK - when they mean in range :-) Sadly often the TSH is the only test that is done - which is only part of the story. You also need the FT4 and FT3 to be tested - along with Thyroid anti-bodies TPO & Tg.

So the TSH needs to be 2 or under and the FT4 and FT3 in the upper part of the range. Low B12 so often goes hand in hand with Low Thyroid - chicken or egg ?

You are legally entitled to have copies of all your test results with ranges - so you can monitor your own health and check on what has been missed !

Having Thyroid anti-bodies tested is so important - if you have Hashimotos then it can be a reason why you are unable to absorb nutrients well.

Private Home Testing Kits are well used by 100's on the Thyroid UK forum purchased through Thyroid UK - see link below ....

thyroiduk.org.uk/tuk/testin...

Special Offers available too ... :-)

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That’s wonderful I was considering doing this, or going private once we’ve saved...thank you.

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Have actually been diagnosed with PA?

If no, I doubt you will get regular injections or be able to convince doctors for it.

And again If you don't have PA it's cheaper, easier and safer to take b12 by mouth or in food.

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........unless B12 and other vital vitamins are being stolen from you by SIBO (small intestine bacterial overgrowth) in which case you are just feeding your unfriendly bacteria !

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