I wrote a letter, and this is what I got back.

So I wrote a letter to the consultant at the nhs who is refusing to see me even thought my gp referred me to him. Please see below, I’ve attached the consultants response. Any help on where to go now?

Thanks

(B12. 215 range 180-2000)

I hope you don’t mind me emailing yourself but I am really feel let down by your decision not to treat me according to NICE and the BNF guidelines.

My gp recently wrote to you to ask if you would see me in clinic due to my long standing symptoms and blood test results.

You wrote in the last letter to my GP that there is no evidence to suggest that I have a b12 deficiency, I would like to know how you came about this decision? You also state that I have had 3 “normal” total b12 serum test results this year.

According to the nhs and I quote the below paragraph from the nhs website

(However, some people can have problems with their normal levels of these vitamins or may have low levels despite having no symptoms. This is why it's important for your symptoms to be taken into account when a diagnosis is made.

A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood.

This means it measures forms of vitamin B12 that are "active" and can be used by your body, as well as the "inactive" forms, which can't. If a significant amount of the vitamin B12 in your blood is "inactive", a blood test may show that you have normal B12 levels, even though your body can't use much of it.)

I have numerous symptoms of b12 deficiency I shall list some below:

· Tinnitus

· Paresthesia - numbness, tingling

· Dizziness

· Restless legs

· Forgetfulness

· Anxiety

· palpitations

· IBS - Irritable bowel syndrome

· Constipation

· Glossitis

· Fainting/light headedness

· Repeated ear infection

· Headaches

· lack of energy

According to the BNF guidelines

1. The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency.

2. Definitive cut-off points to define clinical and subclinical deficiency states are not possible, given the variety of methodologies used and technical issues, and local reference ranges should be established.

3. In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.

I am concerned that I am not being treated correctly for my neurological symptoms. I know that to have the best chance of completely reversing these I need to be treated as per NICE and BNF Guidelines 9.1.2. which state that injections should be given every other day until symptoms stop improving. Please note; there is no time limit on this and I understand that in order to reverse neurological symptoms it could take some time.

Thank you for taking the time to read my letter

Kind regards

[ITYFIALMCTT]

It looks to me as if the consultant is willing to take a look at your active B12 test results etc. which might be an offer that is worth taking up?

[Hidden in reply to ITYFIALMCTT]

Yes I suppose I can email them to him, it was 52.2pmol range (25.10-165.00)

[ITYFIALMCTT in reply to Hidden]

I don't know anything about active B12 - that result looks within the reference range given by the lab.?

[Hidden in reply to ITYFIALMCTT]

Yes it is but when it’s below 70 I believe that they need to check MMA. So I am not sure.

[ITYFIALMCTT in reply to Hidden]

Did you have the test with St. Thomas/Viapath because I've seen that they recommend that but I don't know what other places do (iirc, I've seen that Blue Horizon or Medichecks offer the active B12 test but I've no idea what they do about MMA)?

[Hidden in reply to ITYFIALMCTT]

No I had it with medichecks.

[ITYFIALMCTT in reply to Hidden]

I wonder if you might need to mention that when you send along a copy of your results? If Medichecks use the same reference range as St. Thomas/Viapath, then it looks like this would be worth mentioning - and perhaps say that you haven't had an MMA or Hcy test as a follow-up tho' these might, perhaps, be relevant as to whether or not you have functional B12 deficiency (if that's what you're thinking).

[clivealive Forum Support]

You could also "throw in" the BSH guidelines which say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

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

What sort of "consultant" was he anyway?

[Hidden in reply to clivealive]

Hello, I wrote that in the letter too. He was a haematologist at the nhs.

[clivealive Forum Support in reply to Hidden]

Ooops! Yes sorry I "missed" it. A bit ironic he's a haemo.....

[Gambit62 Administrator]

He hasn't said that your symptoms aren't due to B12 - he has said that they could also be other things like thyroid and iron deficiency - notice that you do seem to have thyroid problems - and he thinks these are more likely to be the cause, ie rule out other possible causes that you do know are present before looking for a new cause.

not sure if glossitis fits with thyroid or iron deficiency - worth checking that out.

if you are iron deficient then it may be worth pushing to have the cause of that investigated eg look for absorption problems.

I'd go with the suggestion made by others of forwarding the active test and asking for MMA as a potential clarifier.

[ITYFIALMCTT]

Just to agree with Gambit62 that the clinical picture does seem to be very complicated when it's possible that iron anaemia and B12 deficiency overlap, never mind needing to add thyroid dysregulation into the mix.

Hidden If you're relatively recently diagnosed with hypothyroidism (presumably?) are you currently in the process of finding the sweet spot of thyroid replacement? Tho' it might be a little more difficult to establish that if you need to resolve any other vitamin or mineral deficiencies to be able to make most effective use of any supplemented thyroid hormones.

[Hidden in reply to ITYFIALMCTT]

Hi, yes recently diagnosed, bloods look very good. Tsh 0.46, t4 18, tt3 1.7. On 125mcg levo. On tablets for iron and now levels are up to 46. Not started folate (prescribed) yet as was wanting to make sure I don’t have b12 deficiency. How do you go about finding if you have a absorption issue?

Thanks

[ITYFIALMCTT in reply to Hidden]

"How do you go about finding if you have a absorption issue?" Gambit62 mentioned that but by and large I think low vitamin and mineral levels can raise the suspicion of absorption problems tho' aside from a test for H. Pylori (for B12) or a referral to a gastroenterologist I don't know what other investigations a GP might run.

I don't readily understand thyroid numbers without their reference range so it's good that you can evaluate your levels and I'm not at all used to seeing TT3

[Gambit62 Administrator in reply to ITYFIALMCTT]

possible absorption problems include

pa, coeliacs, crohn's h pylori.

there are blood tests that can be done for pa, coeliacs and, I think h pylori. PA test not necessarily conclusive (ie a negative is a long way from ruling out PA). endoscopy looking for damage to ileum can be useful diagnositically.

if you have symptoms of stomach acidity problems that could indicate low stomach acidity which would affect absorption generally - there is a home test you can do to check for low stomach acidity but can't remember details.

[Sleepybunny]

Hi,

If you contact haematologist again, do you think he might be interested in flowchart from BSH Cobalamin guidelines?

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Two of the symptoms mentioned at top of flowchart are glossitis and paraesthesia, both of which are in your symptoms list.

There is a useful summary of B12 documents in third pinned post on this forum. I'd suggest having a look.

I gave a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to my GPs.

Is there a chance that haematologist might be interested in a book?

He says that many of the symptoms are not specific to B12 deficiency which I think is correct but some of them are on lists of B12 deficiency symptoms.

I ticked all my symptoms on PAS Checklist and gave a copy of it to GPs. Perhaps haematologist would take more interest in PAS list than your own list as PAS(Pernicious Anaemia Society) is well-respected.

pernicious-anaemia-society.... See PAS checklist PDF on right of page.

Has haematologist seen BMJ b12 article which emphasises need to treat people who are symptomatic for B12 deficiency even if B12 is within normal range?

BMJ B12 article

bmj.com/content/349/bmj.g5226

UK NEQAS B12 Alert

See link to UK NEQAS B12 Alert in link below which warns about the possibility of neurological damage from b12 deficiency in people with normal range B12.

b12deficiency.info/b12-writ...

Perhaps haematologist or GP might be willing to consider a trial of b12 injections?

Stichting Tekort, a Dutch B12 website, has some English language articles that might be of interest.

stichtingb12tekort.nl/weten...

Health professionals can join PAS as associate members for free. See PAS link for health professionals below.

pernicious-anaemia-society....

I can't remember if you're a PAS member. Might be worth joining if you think PA is a possibility. They can offer support and info.

pernicious-anaemia-society....

[phone]

B12 blogs

May be relevant stories on Martyn Hooper's blog

martynhooper.com/

Also interesting blog on "B12 deficiency Info" website.

Have you looked at B12d.org website?

b12d.org/

"How do you go about finding if you have a absorption issue? "

Have you had tests for Coeliac disease?

coeliac.org.uk/coeliac-dise...

nice.org.uk/guidance/ng20/c...

Two first line tests are recommended in UK,

1) tTg IgA, a test for tissue transglutaminase antibodies

2) Total IgA

The second test is not always done although recommended in NICE guidelines. People who have IgA deficiency will not make the tTG antibodies so their test for Coeliac antibodies will come back negative and they will need alternative tests for Coeliac disease.

Have you had IFA intrinsic Factor Antibody test? This can help diagnose PA but is not always reliable and it is still possible to have PA even if IFA test result is negative/normal range.

There are other possible causes of absorption problems besides PA and Coeliac.

Do you have any other blood relatives with PA or B12 deficiency?

If yes, does haematologist know? Having a blood relative with PA or other auto-immune condition is a risk factor for developing PA.

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

I am not medically trained.

[Frodo]

As I understand it, B12 Deficiency can be linked to thyroid issues? So having thyroid issues would make it more likely you are having problems with B12. It wouldn't necessarily be an either/or diagnosis.

You could look for some research on this and give him that as well.

[Dewbuc]

If your GP has referred you and the consultant refuses to see you it might be worth making a complaint formally through the NHS complaints procedure.

It might also be worth writing to the consultant to say that you are very concerned about the possibility of developing irreversible neurological changes including sub acute combined degeneration of the spinal cord in view of the current neurological symptoms in your feet.

You could ask him how he can be so certain that you do not have symptoms resulting from B12 deficiency in view of very suggestive symptoms and the fact that these may occur with B12 levels falling low within the normal range and in the absence of any red cell changes.

If you are feeling very bolshy, as I would be, I would mention that you will not hesitate to seek legal redress should you develop symptoms as a result of his failure to see and treat you according to all the best practice guidelines recognised in the UK.

In view of the extremely low cost and extreme safety of diagnosis and treatment it would be very difficult to justify such a very ill advised clinical decision.

In fact you can treat yourself very safely and effectively to avoid irreversible clinical symptoms.

[Sleepybunny in reply to Dewbuc]

PAS members can access an article about SACD, sub acute combined degeneration of the spinal cord from PAS website.

pernicious-anaemia-society....

PAS news item about neurological consequences of PA (mentions SACD)

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog mentions SACD

martynhooper.com/2010/09/21...

Podiatrists

In UK, podiatrists with appropriate training are allowed to prescribe B12 injections. If you have neuropathic symptoms affecting feet, your GP might consider referral to a podiatrist.

martynhooper.com/2015/11/30...

Do you have someone supportive who could go with you to appts, even better if they know about B12 deficiency?

[Retren]

Look4me I would go along with Dubucs advice. I personally had tests from my GP and they were normal so called I went along with my gut feeling as my symptoms were the same as when I was originally diagnosed and commenced self injecting .I have since switched to oral B12which can be purchased over the counter and am feeling much better. In any case the surplus gets eliminated anyway so it is hardly a case of taking inappropriate steps..The problems incurred from delaying treatment are multiple so self medicating is a preferable solution than banging ones head against a brick wall the thyroid issues are something else and should be investigated.

[Hidden in reply to Retren]

Will I do myself any harm if I don’t need b12 and I inject? I read somewhere that it should be done with a gp incase of a reaction. I’ve got the vials just not plucked up the courage to inject 😬

[Gambit62 Administrator in reply to Hidden]

anaphalactic shock due to alergies is always a possibility though it is very rare - at very least you should have someone else with you for the first injection but the preference would be to have it undermedical supervision