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B12 thyroid

Denny39 profile image
7 Replies

Hi,

I am new to the PA site.

I was diagnosed with under active thyroid in 2021 which I’m still struggling daily with. I have peripheral neuropathy in legs and can’t walk far at all and I’ve just turned 40.

My B12 at the time of thyroid diagnosed with not being on any supplements was 379.8 (197-771)

I’ve been supplementing b complex and b12 liquid by nature provides. This boosted my b12 to 500 mark.

I was wondering if the injections would benefit me more. Ive not tried them before and a bit nervous as when I first started b12 it made me a bit jittery but that subsided. I would like to try the methylcobalamin (methylated B12).

Does anyone know any suppliers or german suppliers I can purchase these from or how I could feel after trying them?

thank you 😊

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Denny39
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wedgewood profile image
wedgewood

One used to be able to obtain Methylcobalamin from Arnika manufacturing pharmacy in Munich . But I believe they do not supply anymore . Methylcobalamin is expensive .I tried it a few years ago and found it no more beneficial than hydroxocobalamin. But we are all different . A possibility is buying powdered Methylcobalamin from Oxford Biosciences and rehydrating it with saline ( only obtained from German online pharmacies . )

Wheat profile image
Wheat

Hello, I too have hypothyroidism and use nature provides B12 drops. Plus Methyl B12 from Oxford Bio Sciences and Hydroxy s.i.

As wedgewood says, we all react differently, but injections are certainly better than sublingual drops, and Methylcolbamin is recommended for neurological symptoms. It works for me

Here is link for Oxford Bio Sciences, their Resources section recommends needles and saline .

oxfordbiosciences.com/store...

I buy the correct Saline from apohealth.de

Best wishes.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

I think there may be a chance to get treatment from your NHS GP.

I tend to post a lot of info so might be best to read it over a few days and some links may have details that could be upsetting.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

If you suspect PA (Pernicious Anaemia) then worth joining and talking to PAS (Pernicious Anaemia Society)

PAS membership is separate to membership of this forum. It's open to people worldwide and you do not need a PA diagnosis to join.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful leaflets that PAS members can print out and a page for health professionals.

Testing for PA

pernicious-anaemia-society....

In UK if a patient is symptomatic for B12 deficiency my understanding is that they should be treated even if serum B12 is within normal range.

See quotes below from UK health documents.

From NICE CKS (Clinical Knowledge Summary) for B12 deficiency anaemia and Folate deficiency anaemia - Signs and Symptoms section

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

cks.nice.org.uk/topics/anae...

From Summary of BSH Cobalamin and Folate guidelines

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

pernicious-anaemia-society....

Functional B12 deficiency

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells. MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose Functional B12 deficiency.

I urge UK forum members to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board)in England or Health Board in Wales/Scotland and then compare them with NICE CKS link up page.

If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.

If diet is B12 rich, symptoms of B12 deficiency are likely to be caused by an absorption issue in gut.

If a GP suspects an absorption issue, I would expect them to at least test for PA and coeliac disease.

NICE guideline Coeliac disease

nice.org.uk/guidance/ng20

More info about diagnosis on Coeliac UK website

coeliac.org.uk/information-...

Blog post about being symptomatic for B12 deficiency with normal range serum B12

b12info.com/your-serum-b12-...

Has your GP got a list of all your symptoms?

I used PAS list below and added extra symptoms at bottom of page. Include any neurological/spinal symptoms.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about being under treated for B12 deficiency with neuro symptoms present.

Point 5 is about writing a letter when symptomatic with normal range serum B12.

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

It's vital to get adequate treatment. Delayed or inadequate treatment can increase the risk of developing permanent neurological damage. In severe cases the spinal çord can be affected.

If you are symptomatic for B12 deficiency and GP is reluctant to treat then may be worth showing them the PAS leaflet below as it discusses serious consequences of untreated B12 deficiency.

PAS leaflet SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

If they say SACD can't happen in people with normal range serum B12, worth showing them this research article.

Functional vitamin B12 deficiency

Martin R Turner 1, Kevin Talbot

PMID: 19151237 DOI: 10.1136/jnnp.2008.161968

pubmed.ncbi.nlm.nih.gov/191...

Thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

Wrong ideas about B12 deficiency

Many on this forum have met health professionals with a poor understanding of PA and B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Some help for GPs

1) PAS website has a page for health professionals.

pernicious-anaemia-society....

2) Club B12 is a group of doctors and researchers who are looking into B12.

club-12.org/

3) A good article to pass to GP

B12 article from Mayo Clinic in US

Aimed at researchers and health professionals

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

There's more info in pinned post "Various PA/B12D resources".

I'm not medically trained.

I was forced to treat myself when NHS refused to treat me despite over 50 typical symptoms of B12 deficiency. All but one of my serum B12 results were well within range.

charks profile image
charks

What makes you think your peripheral neuropathy is caused by B12D? It can be caused by many other things - kidney or liver diseases, infections and being overweight just to name a few.

Denny39 profile image
Denny39 in reply tocharks

Wish I did have more weight, I’m borderline underweight.

charks profile image
charks

But has your GP given you any other tests to rule out other causes?

Denny39 profile image
Denny39 in reply tocharks

Had a nerve conduction study privately and that was normal.

It only started when I started thyroid medication. I just posted a new post with some blood ranges on. If you kindly don’t me looking at that and letting me know what you think of my numbers old and new. Thanks

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