Pernicious Anaemia Society
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At the haematologist appointment today

Hi,

I had an appointment to the haematologist today and she said that doesn't think it is B12 deficiency as my levels are normal 233 (191-663) and even I tested positive for Gastric parietal cell antibodies does not show a deficiency and she will write a letter to my GP to stop the 3 months injections as she think I do not need them.

She said that B12 shots became like an addictive trend and everyone how have B12 shots will have energy and feel good.

Like Maddona when she is injecting B12 before her concerts so she can have energy, she said B12 is like a drug now.

About low folate 2.8 (3.90-26.80) said nothing to worry and to eat more green stuff as I don't have anemia.

She said if I have an absorption problem I will have deficiency to all my vitamins and minerals.

Order another blood test, I have donated 10 samples of blood and I got tested for Cortisol, thyroid antibodies, folate, iron, magnesium, B12, ferritin, electrolytes and lost of other autoimmune diseases, glandular fever and other antibodies.

I received the information from the haematologist that the 6 loading dose that i had will be stored by my body for 5 years and I do not need other injection.

She said that the gastrologist will tell if I have an absorption problem but she believe that I don't have any absorption problem as my B12 serum levels were normal.

Said you need to exercise more if you want to sleep good and your heart rate not to be some high....lol

I don't know what to say and what to think anymore...they are really go thru a medical school or what?

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I think the guidelines say if yr b12 is below 500 and you have symptoms of low n13 then you should be treated. My gp (or me!) didnt know this when i was complaining of increasingly numb hands for 10yrs. My bloods for b12 and folate were same as yrs. I researched myself realised it could be b12 and started taking sublingual methlycobslamin and folic acid. My numb hands (&other symptoms) went. I take 5000 daily and my bloods are now twice over top limit but i have tried to reduce dose several times and the numb hands come back each time. Gp and endos are not worried about high level once i tell them i supplement as its not dangerous. I prob should have had b12 injections like you but there you go.... Id take a copy of the guidelines to yr consultant. Good luck

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Low b12 NOT n13 lol

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Just an appalling response - send her the latest guidelines from her professional body BCSH which the society pushed for !

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Your haematologist seems just as inept as mine, frustrating isn't it? I have also seen a gastrologist for low B12 he couldn't tell be anything either!

As my haematologist doesn't think that my pins and needles are down to B12 she thought a neurologist would be more appropriate. If you have neurological symptoms this might the route to take (although I haven't had the experience yet, app.on the 13th.) It really is sad that some folk will take their word as gospel, I am so glad to have the forum to advise and educate me about B12 deficiency! I don't really want to SI but if neurologist is useless, I know where to go!

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Hi, even if I will not see an neurologist I am thinking to SI as I can take it anymore with the symptoms and with so many doctors that supposed to help us with our health...

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Hi,

Sorry to hear your appt was not helpful but sadly not surprised as lack of knowledge about b12 deficiency (in my experience) exists amongst specialists just as it does amongst some GPs.

I agree with greenbexy that seeing a neurologist may be helpful. Although I'll warn you that I saw several and only one of them thought B12 deficiency might be a possibility.

"About low folate 2.8 (3.90-26.80) said nothing to worry and to eat more green stuff as I don't have anemia."

I'm not convinced your haematologist has read the BSH Cobalamin and Folate Guidelines.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Perhaps you could write to haematologist with relevant quotes from this document?

Have you pointed out to haematologist the possible consequences of neurological damage if B12 deficiency is untreated or under treated eg SACD? This might encourage her to reconsider what she has said especially if you already have neurological symptoms.

PAS article on Neuro Consequences of PA

pernicious-anaemia-society....

PAS article on SACD, sub acute combined degeneration of the spinal cord available to PAS members.

pernicious-anaemia-society.... See page 2

Have you considered joining and contacting PAS (Pernicious Anaemia Society)?

Hopefully they could pass on info that may be useful to you. I think they would be interested in hearing some of the comments the haematologist made to you.

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

"She said if I have an absorption problem I will have deficiency to all my vitamins and minerals."

My personal opinion (I'm not medically trained) is that an absorption problem will increase the chance of other vitamin deficiencies but not necessarily in all vitamins and minerals.

Unhappy with treatment?

Letters to GPs about B12 deficiency

Point 1 is about under treatment of b12 deficiency where there are neuro symptoms. Person who runs website might be interested in hearing about your haematology appt. Her e-mail contact details are on the website.

b12deficiency.info/b12-writ...

There is a link on the website to examples of haematologists letters to patients.

b12deficiency.info/letters/

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

"she said that doesn't think it is B12 deficiency as my levels are normal 233 (191-663)"

Has she seen the BMJ article below and the flowchart from BSH Cobalamin and Folate Guidelines?

Both these make it clear that it is possible to have b12 deficiency with a normal range b12 result.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

"Said you need to exercise more"

I must admit I said something rude when I read this comment. If only....reminds me of an unhelpful GP i saw who when I said I was concerned about my symptoms making exercise impossible told me to try riding a bike.

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@ Sleepybunny,

During a recent trip to my GP, I mentioned the BMJ. Want to know the response I got?

And I quote "Don't believe everything you read in the BMJ. There's been plenty of bad information in there. 60 years ago they were recommending that people smoked, as it was considered good for the lungs." :D

1. I would love to know if this is true.

2. Even if it did say that, that was 60 years ago. i think medical science has evolved somewhat since then.

3. O.K. May as well bin them all then, as one bad apple clearly means the whole basket is rotten, right?

I've all but given up on my G.P's and now reached a point where i'm beginning to think that I am now just destined for a lifetime of eternal suffering.

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Hi Sleepybunny,

Thank you so much for all the information I will join the PAS and try to get help from there.

I did point from BSH and explain that I have neuro symptoms as pin and needles and tremors and numbness and this all can lead to permanent nerve damage and about SACD but she was keep telling me that is nothing wrong with my B12 as my levels are normal.

She did run again blood test but I am thinking I will not go anywhere with her.

So I am waiting gastro app. and anyway I decided to SI...as this is going nowhere and I am feeling very bad with not able to sleep and with bad palpitations and terrible tired.

And I want my life back as my lovely husband and my adorable little daughters need me and I am looking like an zombie, always crying and scared as I am going to die an leave my daughters without their mum.😢😢

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"I did point from BSH and explain that I have neuro symptoms"

My experience is that it is better to put info in a letter (eg quotes from relevant documents, symptoms , relevant blood results etc) as letters addressed to doctors in UK are, to my knowledge, filed with a patient's medical records and therefore are less likely in my opinion to be ignored. A doctor may forget things that have been said or just put copies of documents to one side. I used to include a request in any letter to GPs to file it with my records.

"and you cannot blame B12 for your symptoms as you have normal levels"."

You could point out in a letter to her the quotes from BMJ article and BSH Cobalamin and Folate Document that refute what she has said.

I do understand your decision to self inject, I was driven to self treat myself when I had exhausted all possibilities of NHS treatment. I did eventually get NHS treatment so it may be worth being persistent.

Might be worth keeping a symptoms diary during B12 treatment as this might provide evidence of improvement in symptoms.

PAS sometimes intervene on behalf of PAS members although I think it is easier for them to help people with a confirmed diagnosis of PA. They can at least pass on useful info.

B12 blogs

may be relevant stories on these.

martynhooper.com/

b12deficiency.info/blog/

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Hi Ioana,

Sorry to hear this. The medical 'professional's' (I use that term loosely) sure are determined to not give this b12 out aren't they. It's becoming harder to get hold of than The Holy Grail. This is worrying news, as I've had no luck with my G.P. OR Neurologist, so was hoping a Haemotologist may be able to help me. But I've been getting b12 shots at a beauty clinic (yep, you read that right. It's the only place I can get them) So my b12 levels are through the roof.

Can't see me getting treatment from anywhere, at anytime.

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Hi Dan,

Well as you can saw I did not have luck with my Haematologist and I did have the loading doses 6 injections, finished them Monday from my GP as I literally implored for them to have them.

But now after the haematologist app when she said that and I quote " You do not need more B12 as your levels are normal and this B12 is not what you are reading on the internet and you cannot blame B12 for your symptoms as you have normal levels".

Well what can I say? How I can blame? Her, my GP, me?

I will not blame anything and anybody.

I choose to listen to my body and to research as much as I can and to look for help and advice on this forum and from people who are dealing with this every day and knows better then most of the doctors.

So I decide to take my health in my own hands and to shelf inject.

Hope you will have better luck then I had.

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