Each month my B12 has lowered but my doctor told me today that she didn't want to start me on injections until I had my Endo appointment ( Hypothyroidism) in 2 months why would that be :
B12 in Feb 178 ( 197- 771)
March (private) 202 ( 211 - 911)
April 121 (197-771)
I have no idea, I had a full blown crying episode in her office today, she has been so good.I am under a couple of specialists so I think she wants them to deal with me.
Hi,
Are you in UK?
If yes, I'd suggest you read "BSH Cobalamin and Folate Guidelines"
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin guidelines
stichtingb12tekort.nl/weten...
Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment.
Are you symptomatic for B12 deficiency?
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
In UK, people with neurological symptoms (eg tinnitus, balance issues, memory problems, pins and needles , tingling plus others) are supposed to have more intensive B12 treatment.
Other B12 info
Some may not apply if you're not in UK.
1) Pinned posts on this forum
2) PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
Martyn Hooper's blog about PA and B12 issues
3) B12 Deficiency Info website
Lots of B12 info and an interesting B12 blog.
4) b12d.org
5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.
Up to date with UK B12 guidelines.
6) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
7) BMJ B12 article
8) BNF Chapter 9 Section 1.2
evidence.nhs.uk/formulary/b...
Details of UK b12 treatment can also be found in "BSH Cobalamin and Folate Guidelines".
Untreated or inadequately treated b12 deficiency can lead to permanent neurological damage.
What to do next?
b12deficiency.info/what-to-...
I see you are due to see an endo, have you seen a haematologist?
In UK, I think a person with b12 deficiency with neuro symptoms is supposed to see a haematologist. See BNF link above.
Some people on this forum who have neuro symptoms get referred to a neurologist.
I am not a medic just a person who has struggled to get a diagnosis.
I'm not medically trained but I would have thought that your doctor would know that "people with autoimmune disorders especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease" are at an elevated risk of a B12 deficiency and you already have one by your latest results.
Your GP's procrastination in treating you is putting your health at severe risk. B12 as low as yours can cause many symptoms, including neurological problems. Here is a very helpful site with list of B12 def. symptoms and templates for writing to your GP:
b12deficiency.info/what-to-...
Also, latest BMJ research document on PA/B12def. with useful summary if GP won't read the whole document. A good idea to book an urgent appointment and take someone close with you for extra support :
cmim.org/pdf2014/funcion.ph...
This document stresses the importance of early treatment:
stichtingb12tekort.nl/weten...
"Early diagnosis is essential if treatment is to be effective, for the reversibility of neurological symptoms is largely dependent on their duration. The brain lesions which form part of the neurological syndrome of vitamin-B12 deficiency, although they have been recognized for more than half a century, are still much less familiar than those which occur in the spinal cord and peripheral nerves, to which by long usage the term “subacute combined degeneration” has been applied.
And in 1960 The British Medical Journal published A.D.M Smith - "the necessity for making the correct diagnosis cannot be overstressed, as delay is extremely dangerous and the condition eminently treatable, provided cerebral demyelination has not occurred.”
Very best wishes for better treatment HypoF
quite possible that your GP just doesn't realise how serious B12 deficiency is.
Please look through the pinned posts for materials you can use and write to your GP
If you have any neurological problems at the moment they should NOT delay treatment as this could result in permanent nerve damage.
Hi HypoF3XXY. Hmm...your GP has got this a bit wrong. And I expect you feel very ill...your B12 is now very very low.
And as other have said, if you have neurological symptoms, treatment with B12 injections should begin immediately...having to waiting for two months for your endocrinology appointment is, well, quite ridiculous.
An endocrinologist will investigate your thyroid problems and treat those, if necessary. But an endocrinologist will not investigate or treat your B12 deficiency. And treating your B12 deficency now will not interfere with any tests an endocrinologist may want to do.
Treatment for B12 deficency should be commenced by your GP and if further referral is necessary, this would usually be to a haematologist, neurologist or gastrologist (or any combination of those, depending on ongoing or unresolved symptoms). B12 deficency (or PA) is not dealt with by an endocrinologist.
I'm going to post some links below with more information about the diagnosis and treatment of B12 deficency - annotated so that you can find things more easily. Suggest you print out and highlight anything relevant to treatment (immediate treatment when neurological symptoms are present), highlight anything relevant to your case, and take along for discussion with your GP. Look in particular to UKNEQS B12 treatment alert - instruction to treat immediately when neurological symptoms are present - even if B12 levels are normal (and yours certainly aren't, so even more imperative), BSH and NICE treatment guidelines, and BNF instructions for treatment - second item down for those with Neuro symptoms - further than a GP usually looks).
Please don't be daunted by what look like a lot of information in the links - most of the documents are only one page long and the BSH treatment guidelines, though a little longer, contain useful summary sections - so just read those if you're feeling to ill and foggy to deal with the whole lot.
In short, all the guidelines state that B12 decency should be treated immediately - especially in the presence of neurological symptoms.
It really is imperative that your GP does not wait for two months to commence treatment with B12 injections, so please put up a new post if you are unable to get you GP to treat you and want more help with this.
Also - it's a good idea to take someone to the surgery to support you, if you can. If they can read your evidence (from the links below) and jump in to help you, if necessary, that might be very useful. Taking someone with you works well because GP's are often more attentive and less hostile if a witness is present? Sad, but true.
Good luck, be brave...and don't forget, people here to help and support you, if needed. 👍
Here's the links:
b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)
evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)
pernicious-anaemia-society.... (PAS Symptom Checklist)
stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)
onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
stichtingb12tekort.nl/weten.... (B12 and Intrinsic Factor)
gov.uk/drug-safety-update/n... (B12 & Nitrous Oxide Contraindicated)
👍
She gave me a referral for a shrink because I cried.
HypoF3XXY....that is just disgraceful. With a B12 level like that I bet you feel very ill, and probably have done for some time. I would have cried too (and have done before).
You really do need treatment for your B12 deficiency. Is there another GP at the surgery that you can see?
If not, suggest you write to your GP, use evidence from the links I gave you, request that treatment is commenced immediately...and state that if treatment is refused, you would like that in writing, with medical evidence to support that decision (this won't be forthcoming, since there isn't any).
And it really would be a good idea to take someone with you.
I'm so sorry that this has happened to you...it won't help, but many here (me included) have had similar experiences and it always happens when you're so ill...and just can't deal with it in a way the 'normal' you would.
If you don't feel up to challenging this doctor and there isn't another one in the surgery that you can see...is it possible to change surgeries completely...worth a thought.
Please do post again if you need more help getting this ridiculous doctor to treat your very obvious B12 deficency...and if you're to ill to,put a letter together, post again and we can provide some bullet points that might help.
Or try this website: b12deficiency.info It contains a draft GP letter that you can amend for your own purposes. If,you do,write, include the date of,your next appointment with the GP and specifically ask that the I formation,in your letter is reviewed before your appointment. A letter becomes part of your medical record so if the evidence and guidelines about treatment are in it, then your GP would be ery u wise to ignore such a letter...especially when the evidence will show that they are wrong not to treat you.
I'm sending a big hug because I just bet you need one.
Take care, be persistent, and know that your GP is so very wrong. Hug hug 😀 Xx
Hi,
Some links that might be helpful if you're unhappy with treatment.
Letters to GP about b12 deficiency
b12deficiency.info/b12-writ...
CAB
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and treatment.
HDA pct are usually quick to respond to enquiries.
"She gave me a referral for a shrink because I cried"
There's always hope that the person you've been referred to may know about B12 deficiency and its impact on mental health.
Article from Martyn Hooper's blog about mental health and B12
martynhooper.com/2017/01/22...
Sadly I suspect some doctors are not aware of the severe impact B12 deficiency can have on mental health.
b12deficiency.info/b12-and-...
Have you thought about contacting PAS? Contact details in my post above.
Who gets PA and B12 deficiency?
b12deficiency.info/what-are...
I was in a pretty desperate state and my B12 was higher than yours! Of course you feel ill and you need your GP to start you on B12 injections asap. I don't think your endocrinologist will be interested in your B12 levels, mine wasn't.
Has you GP tested your blood for intrinsic factor ( needed to assess likelihood of Pernicious Anaemia), for ferritin, folate and VitD? All these can be low if your B12 is at rock bottom, and we need everything to be as good as possible for our thyroid medication to work properly.
I do hope you will soon get the help you need, when your medication is working, you hopefully won't need any mental health referrals.
I am seeing a hematologist next week will they help me ?
Hi,
I'd make sure you read up about B12 before appt. and if possible take someone with you who has also read up about b12 deficiency and knows the guidelines relevant to your country.
Hopefully you will see a haematologist who really understands about b12 deficiency but be prepared in case they haven't done their homework.....
I've assumed you're in UK. I found fbirder 's summary of B12 documents useful to read. link to his summary in third pinned post.
Connection between low but in normal range B12 and MCH? 
MMA & B12 Results
B12 thyroid 
B12/Folate results-advice please
Why do I have high B12 when I'm not supplementing?
