Advice Please

[Lovethemozman]

I have Hashimoto's (diagnosed last September) and last blood tests indicated low B12 (attached). I have had Neurological symptoms for the past 3 years- in particular restricted movement in right hand/wrist and drop foot/ limp of right foot. GP started B12 loading doses last month - 6 over 2 weeks then every 3 months. I have since had bloods taken to test for intrinsic factors for pernicious anaemia (awaiting results). I have been self injecting every second day in an attempt to see some improvement in Neurological symptoms. Is it possible to say how long it would be before I can expect to see/feel an improvement? I also take 125mg levothyroxine, 5mg folic acid, iron,D3, magnesium, selenium and B complex. Any advice greatly appreciated 😁

[clivealive Forum Support]

Hi Lovethemozman you are at an elevated risk of developing a Vitamin B12 deficiency if you have thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease and this will probably explain your low active B12 level.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Although OK per the above test It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

Sadly the Intrinsic Factor Antibodies (IFA) test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[deniseinmilden]

Hi!

You sound like you are doing all the right things. Have you seen any improvement?

It's useful to keep a written note of your symptoms to help monitor this as often the improvement is so small day to day its hard to notice, especially if your memory has been affected.

If you haven't seen any improvement it might be good to question why not. Is there something else wrong as well or are you not getting everything you need to make the B12 work properly?

You could maybe take a broad spectrum multivitamin and mineral supplement instead of or as well as your individual supplements to make sure you have everything you need. You might find you need extra potassium too.

Some people don't methylate properly and benefit from methylfolate instead of folic acid.

It seems to take at least 18 months for nerves to heal fully, even under good conditions. I've been SI daily for 3 years and I'm still improving, particularly mentally.

[Sleepybunny]

Hi,

"GP started B12 loading doses last month - 6 over 2 weeks then every 3 months"

"had Neurological symptoms for the past 3 years"

Are you in UK? If yes then in UK, recommended treatment for B12 deficiency with neuro symptoms is as follows..

A b12 loading jab every other day, for as long as symptoms continue to get better, then a jab every 2 months.

You appear to have been put on standard UK B12 treatment for people with b12 deficiency without neuro symptoms.

See UK B12 documents below for more info on UK B12 treatment.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

Has your GP explained to you why you are not on the neurological treatment regime?

May be worth drawing their attention to fact that treatment for B12 defic WITH neuro symptoms is more intensive. My personal preference when I have a query over treatment is to write a brief, polite letter. In UK, my understanding is that letters to GPs are filed with medical notes so therefore are a record of issues raised. See letter writing link lower down page.

UK GPs will have access to a copy of BNF (British National Formulary) book. If they turn to Chapter 9 Section 1.2 it explains treatment for B12 deficiency with neuro symptoms. Treatment info is also in BSH link and NICE CKS link above.

Has GP contacted a haematologist or have you been referred to a haematologist?

NICE CKS link above mentions that GPs should seek advice from a haematologist for those with B12 deficiency with neuro symptoms.

Have you been referred to a neurologist?

It's important to exclude other possible causes for neuro symptoms.

Words of warning.....

Some specialists and GPs' understanding of B12 deficiency may not be as well developed as it could be. I suggest being well-prepared for any appt. Can be helpful to take someone supportive with you, even better if they have read up about B12. Some forum members have had difficult experiences with doctors.

Help for doctors

1) PAS website has a section for health professionals. They can join PAS for free as associate members.

pernicious-anaemia-society....

2) PAS library section has a leaflet "An Update for Medical Professionals: Diagnosis and Treatment " which some forum members have passed on to GPs.

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of above book for concerned parents.

If finance is an issue, copies of these may be available to borrow from UK libraries.

What does GP think is causing your low B12?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA (Pernicious Anaemia)? Coeliac Disease? Both are auto-immune conditions.

PA

Flowchart link above outlines when PA or Antibody Negative PA can be diagnosed in UK. People with suspected PA are usually given an IFA (Intrinsic Factor Antibody) test but IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. Result of IFA test may give a false positive if blood taken close to a B12 injection or B12 supplements.

Having one auto-immune condition (eg Hashimotos) can increase chances of developing another.

Coeliac Disease

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version) recommend that people with unexplained B12, folate or iron deficiencies should be tested for Coeliac Disease.

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

Coeliac Blood Tests

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

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Offers support and info about PA.

If you suspect PA or Antibody Negative PA, may be worth joining and talking to PAS.

pernicious-anaemia-society....

They can sometimes intervene on behalf of PAS members who are seeking PA diagnosis/struggling to get correct level of treatment.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

UK B12 Blogs

May be stories on these blogs that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about Under Treatment of B12 deficiency with neuro symptoms.

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/

Potential Neurological Consequences of B12 Deficiency

Correct level of treatment is vital to prevent possibility of further deterioration eg spinal problems so I struggle to understand why you have not been put on UK B12 neurological treatment regime. It seems unfair that you are having to self treat. Many forum members have to resort to self treatment.

Is your GP aware of the potential consequences of under treatment?

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society.... See Page 2.

Blog post from Martyn Hooper's blog, mentions SACD

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

Link about What to Do Next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

Process may vary in other parts of UK.

"how long it would be before I can expect to see/feel an improvement?"

It took months before I saw obvious improvements. Years later I am still seeing some yearly improvement although rate of progress is much slower.

More B12 info in pinned posts on this forum.

I am not medically trained.