Pernicious Anaemia Society

Help with B12

Hi please can someone help I have read a few posts on here and seen what has been posted

I don't know how bad low b12 affects you and wondered if this is what's going on with me I can't concentrate on anything bad headaches very depressed bad tempered have no interest in anything don't go out at all my body hurts have no energy sleep all the time for up to 16 hours blow my top over a silly little thing crying all the time not eating skin bad hair breaking please help and advice

Mjm

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this is a link to the symptoms of B12 deficiency but they overlap with a number of other conditions - including thyroid,vit D and iron deficiency.

pernicious-anaemia-society....

Have you spoken to your GP and asked if they can do blood tests?

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Hi have been having B12 injections every 12 weeks for years and years asked gp to give more frequently due to it being low but he said it's good no help at all I will ask to be sent to see an endocrinologist but don't think he will he don't want to know about it do anything for thyroid don't know why but I will do what foggyme said thank you for reply

Also I am now going to start a daily dairy of my day and symptoms by the way I have dizzy spells have fainted and problems with my eyes skin and hair just want to feel normal

Mjm

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mjm192 - it sounds as if you are being chronically undertreated -didn't realise that you were being treated for PA - like so many others. Think Foggyme has given a full response and hope that her advice helps

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Mjm192. If your GP is still resistant to increasing the frequency of your B12 injections, you could direct him to the Pernicious Anaemia Society's website - it contains information for medical professionals, which your GP would do well to read.

You could also consider joining the Pernicious Anaemia Society and contacting Martyn Hooper via the telephone helpline. He will be able to contact your GP and offer advice about appropriate treatment for those with PA.

Good luck.

👍

P.s. your GP sounds awful. Are you able to see a different GP? Or perhaps consider changing surgeries (though I know this is not always possible)?

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Hi unfortunately it's a small practice and all the doctors there have their chats and this is why I am where I am with the previous doctor I dared to tell her about being on here and she did not like it one bit and said don't take any notice of what is said because none on here are doctors and it took years for her to be sitting in her chair also said don't google about health issues

I told her for 1 I don't google about health issues because it can go right to the top of bad things also I said that this site is not about diagnosis it's for people like me who have the same health problems and had them for years and years who know 100% about blood results and also have people with medical knowledge

So this is why I am where I am these chats between doctors about me looking for advice and knowing what I am talking about I will download the figures levels and show them

But I think I will still get the same reply

Even with my thyroid results the doctor told me that his going to leave me and maybe test thyroid level again in 3 years which I am not happy with because of how bad I feel

I will get in contact with the man who contacts your doctor about B12

Thank you so much for your help and advice

Marcelle

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Hi Mjm192

Oh dear...you've no idea how often we hear this on the forum...and it's dreadful.

Yes, some people do over-google and read information that’s not accurate, and there's a lot of that on the Internet.

But GP's often dismiss information that's from reliable sources and castigate patients for reading it! Makes a mockery of NHS England's desire for patients to be involved in and take an active part in their own healthcare.

Wondering if your GP has even read the 2014 guidelines for the treatment of B12 / folate deficiency...here they are:

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

Here's something about long-term intensive B12 treatment for those with neurolgical symptoms:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

And here's a 2017 research paper written by a Consultant Haematologist:

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

And something about the misconceptions that many GP's have:

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis(large red blood cells).

All reliable sources so...

Some here get better results if they write to a GP, explain their concerns, and include evidence...which the GP has to read because it becomes a part of your medical records.

So,you could try writing to your Gp, explain that your neurological symptoms are ever-present (list them all) and that you believe that you are being undertreated for your B12 deficiency and are concerned that you are at risk of developing subacute degeneration of the spinal cord (this can happen when B12 deficiency is not treated or under-treated). Include the documents above, with relevant sections highlighted) and if you join the PAS, there’s a document about subacute degeneration of the spinal cord (SDSC) in the members' library...download, print, and include that too.

Many GP's are not aware that SDSC can arise as a consequence of under treated B12 deficiency. I'm not suggesting you have this, just that having the possibility present to them, in writing, with evidence, should sharpen their minds a taste. And as your concerns will now be formally entered in your medical records, they would do well to consider the issue of accountability, if they still refuse to treat you appropriately...and in accordance with guidelines.

If you feel really brave, you could also write that if you develop SDSC due to under-treatment of your B12 deficiency, you will hold them accountable 😖.

And many GP's are not aware that they should be treating your symptoms, not serum B12 blood test results!

If your GP remains convinced that your neurolgical symptoms are not due to B12 deficiency, ask for a referral to a neurologist for further investigations. This would be usual practice for anyone suffering from neurolgical symptoms.

I really can't understand why your GP is 'leaving you for three years' and refusing to treat your Hashimoto's thyroiditis. Disgraceful. Suggest you ask on the thyroidUK forum for further advice about that.

I'm just so sorry that your having these problems with your GP practice. Is there another practice you can change to?

And do consider contacting Martyn Hooper at the Pernicious Anaemia Society...he can write to or telephone your GP on your behalf.

Very best of luck...let’s us know how it goes.

👍

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Omg endocrinologist help I honestly can't believe what I have found out today

I called the London hospital to find out why I have not had my appointment yet I was then told I have had my appointment to which I told the operator I can ashore you I have not he then informed me that I had and it was a virtual appointment I asked what do you mean he then told me that my GP referral got to them on the 15th Jan and my appointment with the renal was on the 17th and I am to have a scan urine test some medication is to be stopped and then they will review me with another virtual appointment in 6 weeks I told them I was not happy because how do they know how I feel I then called my gp to tell them I am not happy and was told I can have a doctor call back appointment in two weeks time I had to go on and insisted that I get a call today

When my gp called me back and I told him I am not happy with virtual appointment he told me what's wrong with that I then said how can a doctor know how I feel and how my symptoms are affecting me his reply was there and no symptoms when at stage 3 chronic kidney disease I then had to tell him that I had bad symptoms and that people are different and any affects of illness does not affect everyone the same

I also told him I need b12 injections more frequently he told me your b12 is very high and I don't need them I told him about all the advice and information I have had he told me no way will they give me more and ask to see an endocrinologist and his reply was why I just don't know how I can get help now or what way to turn please help

Marcelle

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Oh dear Mjm192, I'm so sorry to hear all this.

My understanding is that virtual appointment are becoming more and more common, and to my mind (anybody's mind) this is not good for patients. And the only way it can ever work is if there's a good GP to manage ongoing care...and you don't appear to have one.

Things you can do:

1) about the B12 - Join the Pernicious Anaemia Society (PAS) and then telephone Martyn Hooper, explain that you have got as far as you can with your GP, and ask him to intercede, on your behalf. (Be sure to tell him of your stage 3 kidney disease). His contact details are on the website.

2) Kidney disease - post on the NKF CFD forum and ask their advice about how to proceed...they have experience of how these things should 'work'...ask them what your GP and specialist should be doing for you at this stage (I suspect that nothing is not the answer)....and how to get them to do it.

Here's a link to that forum:

healthunlocked.com/nkfearlyckd

3) thyroid issues - post on the thyroid UK forum, tell them your blood results for the two thyroid antibodies (they will see that you have Hashimoto's thyroiditis), explain that your GP has refused to treat you and wants to re-test in three years. They will have seen this before and have more experience of the ways in which you can get help.

Here's a link to the thyroid forum:

healthunlocked.com/thyroiduk

4) You mention that the virtual appointment with the nephrologist (from which you were absent) suggested a scan, urine test, and changes to medi cation. Usually the scan appointment will be arranged by them and arrive in the post. It's most likely that your GP will be responsible for collecting the urine test and making changes to your medication (if that's what they suggest). Suggest you try and get a face-to-face consultation with your GP for this.

And I seriously suggest that you try and move to a different GP surgery (there are no guarantees that a different GP would be any better, but it's difficult to see how you could be any worse off than you are now).

There are many people here who have experienced the sort of things that you're going through now, and all here constantly wish that we could offer more than words, to help.

So, first step....ring Martyn...he can intervene in a way that we're not able to. And I sincerely hope that the other forms can offer advice that will help,you to move forward and get the help that you should be getting.

Good luck and take care.

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I thank you so much I have had a bad meltdown my head can't take any little things my nerves are shattered I am crying my eyes out and one little thing starts the ladder then every thing after that builds up my body is tense it ain't going I have headaches continually the fatigue is so bad I can't concentrate on anything I sleep all the time depressed my whole body hurts I someogo numb from waist down also get funny sensations and noises in my head neck when I move it sounds and feels like a plastic bag being pushed into a ball feel sick can't eat and I could just run away from everything it's so hard when you are doing all you can to make yourself get better and you get told by a gp that you ain't Havant symptoms with regards to kidneys because at stage 3 You don't have any symptoms and only get them at stage 5 when that's the stage of needing dialysis and needed a kidney transplant when I told him how bad I feel he told me he don't know how because the book tells them you don't have symptoms

I thank you so much for you wonderful advice and the time and care of your advice and support

Marcelle

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Hi Marcelle

I've only just seen this from 9 days ago.

You sent me pm today, was wondering if you got my reply yet.

Sorry about all the spelling mistakes in my pm - I rushed it.

When will you have the scan? I didn't realise you started medication.

xx

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Hi Mary no not started any medication gp has told me he will retest thyroid again in 3 years his not one bit interested in what I have said regarding all the help and information I have got from all of you fantastic caring people so got no where at all

Feeling lost and getting no help at all no interest in how I feel only to be told I do not and should not have any symptoms because text book states that also chronic kidney disease stage 3 you don't have any symptoms

But I honestly do

What chance has any one got to want to feel better or just normal

Where do I go from here

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Hi Mjm192. I’ve just had a scan of your previous posts and if my understanding is correct, you have been diagnosed with pernicious anaemia and are having B12 injections.

I see that your serum B12 level two months ago was 357ng/L - if this test was taken after you started your B12 injections, then I would have expected your serum B12 level to be a lot higher. If this is the case, it's likely that you need more frequent B12 injections.

The symtpoms you describe could be the symtpoms of an under-treated B12 deficiency.

However, in your case it's not that simple.

If also see that you have been diagnosed with hypothyroidism (which, if I understand correctly, is not currently being treated) and have stage 3 kidney disease - so - B12 aside - the symptoms you have could be due to either of these conditions (or a combination of both).

I note that the thyroid forum have advised that your over the range TSH with a high FT4 is unusual, and that because of your kidney condiction, they can not advise whether you should be on treatment for your hypothyroidism. The thyroid forum folks are very experienced and this just shows how complicated things can get when kidneys are involved. I'd suggest that if your doctor has not already done so, they should you refer you to an endocrinologist (a consultant who deals with thyroid problems) for a full thyroid assesssment and decision about appropriate treatment.

About the stage 3 kidney disease - understand that you waiting to see (have perhaps seen by now) a nephrologist and have also posted on the HU NKF CKD (kidney disease) forum. They will be the best people to turn to for advice and support for your kidney issues as it's not something most folks here will know very much about (me included).

In the meantime, here's a couple of links that you might find useful:

kidneycareuk.org/about-kidn...

davita.com

So...back to the PA, B12 deficiency, and your current symptoms. It won't be easy for you to sort out what symptoms are due to which condition.

Whilst your symtpoms might be due to under-treated B12 deficiency, they are also the symtpoms of many other conditions (I.e thyroid and kidney, to name just two).

And the fact that your thyroid and kidney conditions are not yet being treated means that there's a likelihood that your symptoms could be due to either your thyroid or kidney conditions, or both (rather than being due to the B12 deficiency). Or indeed, something entirely different.

Having said that...

If you have neurolgical symptoms (Gambit has left you a symptom list in her reply above) then you should be having intensive B12 treatment (injections every other day until no further improvement). Your GP may not know this so here's a link to the UK prescription regime from the BNF (PA with neuro involvement is about the third paragraph down).

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

If you do have neurolgical symptoms, suggest you print the information from the link, take it to your GP, and ask for more frequent B12 injections - the neurolgical regime - (as per the guidelines).

People with PA have absorption problems so also ask you GP to check you ferritin levels (a marker of iron defiance anaemia), vitamin D levels, and folate levels (good folate levels are needed to process B12 effectively). Low levels of any of these can make you feel very ill, so worth ruling out as a potential cause of some of your symptoms.

its also worth noting that because of your kidney issues, vitamin and mineral supplements should only be take under direct medical supervision.

As you are feeling so unwell, think it would be a good idea to see your GP and tell them exactly how you are feeling and how this is impacting on your life...make a double appointment if you need more time than the usual ten minutes. One good question to ask would be why they are not treating your hypothyroidism (and ask to see an endocrinologist so that your thyroid issues can be sorted out 😉).

I can understand why you're so worried about all this...and also about how ill and fed up you must be feeling.

Whilst we can't really give much advice about thyroid and kidney issues, the forums who do that will be able to help you (so keep posting on those forums).

If you need more advice about PA and the B12 deficiency it causes, please carry on posting here and the folks will try and support you as best they can.

A tip to help you get the best out of folks here on the forum: It's always worth mentioning that you also have thyroid issues and stage 3 kidney disease (to prevent folks inadvertently giving inappropriate advice - for instance about vitamin supplements etc. - the 'usual' advice could well be wrong for those with kidney issues 😉).

Very best of luck...hope the nephrologist provides some answers and a care plan...and likewise for the thyroid.

Take care

👍

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Hi thank you for your help

I have been having B12 injections for years and years and have 1 injections every 12 weeks if this helps you understand more about what my levels should be and I will do and contact the man gambit 62 told me about

Thank you again

Marcelle

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Mjm192. Serum B12 levels are no indicator of how successful treatment is, once injections have commenced. Your GP should be looking at your symptoms, not your serum B12 levels. As you still have symptoms (including neurolgical ones) it's likely that you are being under-treated for B12 deficiency and need more frequent injections.

I've left a reply about this somewhere above, so there's more information there, along with some evidence that you can 'share' with your GP in order to try and get more appropriate treatment.

👍

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