Advice please, doctor wants to stop B12 injections.

[Jlg61]

Help with Interpreting results (I currently have 3 monthly injections for B12) but am concerned that this will stopped as level is 2000 ( 197 - 777) and doctor said that he wanted to stop injections. On Thyroid site as symptons overlap hairloss,cold, aching joints,etc) I am concerned that one I will have the B12 stopped and as the other thyroid results showing

Satisfactory that my symptoms will not be addressed) and will not be given any medication. Can I ask if anyone has been in this situation a doctor will call me on Friday to discuss but wanted advice first) a lovely lady on this site (Mary ) suggested adrenal check . Sorry for rambling did have full bloods done they did ask for celiac test but couldn't see any results so assume negative . I have private cover do I need to ask for any referrals?? Thankyou for any advice

TPO Positive 111 (>34 U/ml Positive)

Thyroid Test

Serum Tsh level 2.39 (0.27 - 22)

Serum free T4 level 14. (12.0 - 22.0)

Erythrocytes sedimentation rate 2mm (1.00 - 19.0)

Serum ferritin level 59

[Mary-intussuception]

Are you still self - injecting with additional B12.

[Jlg61 in reply to Mary-intussuception]

Yes at the moment as I find in the winter I need additional in between 12 weekly. I didn't mention to doctor

[Mary-intussuception in reply to Jlg61]

But why self-inject additional B12 to what your GP is giving you - if your B12 result is so high? I don't understand.

I thought your diagnosis (10 months ago) was B12 deficiency and not Pernicious Anemia?

[Sleepybunny in reply to Mary-intussuception]

Hi,

My experience is that some people cannot manage on standard NHS treatment so they are forced to self treat. My symptoms return within a few days of a B12 injection so I feel I have no option but to self treat. There are others on this forum in a similar situation.

Some forum members with are mistakenly told that high B12 levels are toxic by health professionals.See link underneath.

stichtingb12tekort.nl/weten...

Diagnosis of PA

PA can be difficult to diagnose so some forum members are forced to self treat. PAS (Pernicious Anaemia Society) have said it can take over 10 years to get a diagnosis of PA. Intrinsic Factor Antibody (IFA) test is unreliable and some GPs are unaware that it is possible to have Antibody Negative PA.

pernicious-anaemia-society....

Injections stopped

The poster mentions they are concerned about injections being stopped due to high B12 levels.

My understanding is that the BSH Cobalamin and Folate Guidelines say that retesting B12 after initial B12 treatment is unnecessary.

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

[trelemorele]

If you're diagnosed with PA and your GP stopped your injections, write complaint to NHS.

Attach copy of diagnosis and state you have to have b12 injections for the rest of your life due to not being able to metabolize b12 from food.

You can email your complaint to:

[e-mail] with

See also nhs.uk/NHSEngland/complaint...

[Gambit62 Administrator]

If you are self injecting then GP stopping B12 is a bit irrelevant.

As per responses on the TUK site serum B12 can't be used as a guide to treatment post loading shots as normal range doesn't really reply - it is measuring what is happening in your blood as a result of dumping a huge amount of B12 in your blood - it isn't measuring what is happening in your cells - important which may be totally different as raising serum B12 can result in a reaction which tries to stop B12 leaving your blood, potentially leaving your cells without B12 (functional B12 deficiency). The easiest way of treating this is to keep B12 levels very high so enough manages to trickle through past the reaction.

The BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders does not recommend the use of repeated serum B12 to manage the treatment of a B12 absorption problem. Your GP can access these through the BNF but they can also be accessed here

onlinelibrary.wiley.com/doi...

There is no known toxicity from B12 - in fact it is used as the treatment of choice for cyanide (5000x a treatment dose of hydroxocovalamin, administered intravenously over 15 minutes) because of the lack of toxicity - the down side is the risk of hypertension from injecting so much fluid into the patients veins.

about 40% of patients with PA go on to develop hashimotos

However - may be worth redoing the anti-body test if you have been supplementing with biotin (B7) as this can affect thyroid tests.

[Mary-intussuception in reply to Gambit62]

Hi Gambit62

May I ask about biotin and the Thyroid Antibody test? As Jlg61 has tested positive for Hashimoto's Autoimmune Thyroiditis (raised TPO) do you mean this could be a false positive?

Or do you mean that Thyroid Function Tests may result in a misleading Euthyroid result / false negative for Hypothyroidism if supplementing with biotin?

Thanks

[Gambit62 Administrator in reply to Mary-intussuception]

I'm sorry but I can't remember which tests it is that are affected by biotin - though looking at things it looks like main effect is on measurement of hormone levels but this article implies that it may also have an effect on measurement of anti-bodies

healio.com/endocrinology/th...

[Mary-intussuception in reply to Gambit62]

Thank you Gambit62. That's interesting, will take a look.

[KimberinUS in reply to Mary-intussuception]

labtestsonline.org/news/fda...

[Mary-intussuception]

Hi again

About your telephone appointment on Friday: If you are unwell, you can make an appointment to see your GP. You don't have to explain your symptoms to the receptionist or justify your need to see the doctor. You only have to give symptoms when asking for an Emergency appoinment.

What is the system in your practice. In ours patients phone at 8.30am for same day appoinment. Because phone's so busy we go and queue anytime after 8am. That way you can guarantee getting appoinment when receptionist starts at 8.30. Once all appoinment slots are taken you can only be seen as an Emergency by the doctor covering the 'on call' that day. For a pre-booked appointment these are given out at 4pm Wednesdays for the following week.

[Sleepybunny]

Hi,

Links about B12 injections being stopped

b12deficiency.info/b12-writ... See Points 7 and 8.

b12deficiency.info/blog/201...

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

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/

Links about high B12 levels

See summary of B12 documents in third pinned post on this forum.

b12deficiency.info/b12-writ...

stichtingb12tekort.nl/weten...

[toph]

This is an issue with 100s if not thousands of Patients. You have been lucky to get any injections... The NHS have totally misdiagnosed me, mistreated me and made mistake after mistake. I got so desperate that I bought my own b12 needles, snapper and sharps bin and do it myself daily.

The NHS are not allowed to help you.. YOU NEED TO DO IT YOURSELF

Best thing I and many others have ever done. Please don't wait for NHS.