Sorry this is a bit long winded but I would like some help at my wits end over my thyroid and B12 .I used to have B 12 injection every 8 weeks but after a NHS drive to reduces the amount of people on B12 injection. In 2016 I was made to have blood test 3 days after injection and told my levels were 1140 above my range 145 to 910 . I was taken off the injections and given B12 tablets daily. my levels have dropped to 562 in 6 months and 200 by 2019. Had blood done just a few weeks ago and it is now 183 . Spoke to GP and asked for injections again as clearly tablets not helping. GP agree but only every six months not 3 months, spoke to cardiologist who asked me to speak to GP for every 3 months injection. Today my GP rang me about my BP and my Thyroid levels ( TSH 30.20 range 0.20 to 4.50 T4 9.1 range 7.0 to 17.0 ) in created my thyroxin spoke to her about increasing B12 to every 3 month as per cardiologist said ,answer was I can only give you the B12 every 6 months as that is the NICE guide line on prescribing. Has any one else have this problem.
only allowed 6 monthly B12 injection - Pernicious Anaemi...
only allowed 6 monthly B12 injection
Total nonsense from you GP. Here are the guidelines:
cks.nice.org.uk/topics/anae...
You should have them every 2 months or 3 max. Never heard of 6 months.
thank you I have just read the link you posted. I did noticed it says if it’s diet related use tablets or injection every 6 months . My GP clearly thinks it my diet 🤦🏻♀️ Not any other reason. It’s definitely like banging my head against a brick wall with my GP. Thanks everyone reading my moaning.
Hi,
Sorry to read about the hard time you're having.
Just a quick reply as have other things to do.
Links to forum threads where I left very detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I'm not medically trained.
"My GP clearly thinks it my diet"
Have you written out a typical weekly diet, all food and drink for GP?
Highlight any B12 rich food you've eaten eg meat, fish, shellfish, dairy, eggs and foods fortified with B12.
If your diet is B12 rich then diet as a cause is less likely and it's more likely that there is an absorption issue in the gut.
High alcohol intake can affect B12 levels.
There are many possible causes of B12 deficiency and people can have more than one cause at the same time.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
Have you been tested for PA (Pernicious Anaemia)?
It's quite common on this forum for people to also have thyroid issues.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
You do not need a confirmed diagnosis of PA to join PAS.
PAS support groups in UK
pernicious-anaemia-society....
Testing for PA
pernicious-anaemia-society....
PAS website has lots of useful leaflets that PAS members can print out. Some can be accessed by non-members.
pernicious-anaemia-society....
There is a PAS page for health professionals that might be worth pointing your GP to.
pernicious-anaemia-society....
Coeliac disease
Have you been tested for coeliac disease?
NICE guidance Coeliac disease indicates that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.
If you were tested in the past and had a negative result, check the guidelines below to see if doctors followed the recommended diagnostic process, some don't.....
cks.nice.org.uk/topics/coel...
More info on Coeliac UK website
Tested for H Pylori infection?
patient.info/digestive-heal...
Any exposure to nitrous oxide?
Nitrous oxide inactivates B12 in the body.
Nitrous Oxide
gov.uk/drug-safety-update/n...
NICE guidelines Nitrous Oxide ( see side effects section)
bnf.nice.org.uk/drug/nitrou...
Any chance of internal parasites eg fish tapeworm?
One clue that there might be an internal parasite is a rise in eosinophils, a type of white blood cell. Eosinophil results can be found with Full Blood Count results.
Medicines/drugs
Has your GP reviewed any medication you are on?
Some have been medicines/drugs have been associated with low B12 levels and some with low folate levels eg metformin a diabetes drug, PPI drugs, some anti-epileptic drugs and there are others.
Any concerns about medication should always be discussed with GP. Local pharmacist may also be helpful to talk to.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about being under treated for B12 deficiency with neurological symptoms present.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.
b12deficiency.info/your-ser...
Some UK B12 documents
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(lots of pages)
Some health professionals have wrong ideas about B12 deficiency
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
It's vital to get adequate treatment for B12 deficiency. Delayed or inadequate treatment may increase the risk of developing permanent neurological damage including damage to spinal cord.
There have been forum members with SACD, sub acute combined degeneration of the spinal cord.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog about PA, mentions SACD
martynhooper.com/2010/09/21...
If person has both B12 and folate deficiencies, vital that both deficiencies are treated. B12 treatment would be started first.
Treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.
Blood tests linked to B12 deficiency
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-...
Iron Studies
labtestsonline.org.uk/tests...
More info in links at bottom of my first reply.
Try and get the cardiologist to put it in writing. My cardiac issues are much better with the b12 being high.
It funny all the specialists I’ve seen are quite happy I treat EOD except my English trained GP, who says he didn’t hear that!
This is not a suggested treatment in the NICE guidelines, not advice from the BCSH, or the BNF. These are the only medical guidance leading bodies in the UK that I'm aware of.
The NICE guideline states that, for those with neurological symptoms, the treatment should start with an injection every other day (EOD) until no more improvement is possible. Then an injection every 2 months to maintain improvements.
For those without neurological symptoms, that is loading dose of EOD injections for 2 weeks then maintenance injections every 2-3 months (altered from every 3 months )
In the guidelines, under the heading "What if a person is still symptomatic despite maintenance vitamin B12 treatment ?" ..the following:
Some experts acknowledge that there is a small group of patients who report a recurrence of their symptoms earlier than 3 monthly.
(No statistics given about size of this small group !)
You are right : NICE guidelines do say, in summary, that treatment for those with no neurological symptoms "where B12 is thought to be diet-related" can include tablets or twice-yearly injections.
If I were you, I would write down what you eat, what you drink, any supplements as it does appear that your GP is treating you as if your diet does not give you sufficient B12. If you don't think this is the case, the only real proof can be what you say you eat. What else: Shopping receipts ? Photos of your dinner, then your empty plate ?
If she is certain about a dietary cause, why didn't she just give you a loading dose and then refer you to Holland and Barrett ? A real money-saving decision !
More importantly, if this is a simple dietary lack, why does she think the tablets cannot rectify your serum level long-term ? A question worth asking.
The NICE guidelines are being updated and revised and are due out in a year - Nov 2023 I think. I am hoping that this will change things for the better for those with B12 deficiency, especially since the review panel have been in discussion with support groups such as the pernicious Anaemia Society and the B12 Society.
This of course will not help you prove that your condition does not have a dietary source, but I think you have done that already.
Certain thyroid conditions such as Grave's and Hashimoto's disease are autoimmune in nature and have links to other autoimmune conditions such as Pernicious Anaemia (PA) - a postal blood test can give a full-panel thyroid result, including for thyroglobin antibody and throid peroxidase antibodies. These are not generally available from NHS.
A family history can also help: members of my immediate family have Grave's, psoriasis and vitiligo- all also autoimmune conditions.
An Intrinsic Factor antibody (IFab) test might not be as helpful. A negative result is sometimes used by GPs as a means of eliminating PA as a cause for B12 deficiency in a patient. A positive result will only however pick up 40-60% of those who have PA. There is no PA test as such.
Martyn Hooper, founder of the Pernicious Anaemia society, had to have three tests to get a positive result. Luckily, he is one of the contributors to the discussions with NICE ! *
I might be just repeating information you already know, but hoping to be of some help.
* The National Institute for health and Care Excellence (NICE) have published online the consultation on draft scope stakeholder comments table 8/9/21-6/10/21 in it's 42-page entirety in the interests of openness and transparency. Not able to provide you with a link but I bet someone else will !
Here's a link to draft NICE guidelines for PA and B12 deficiency
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(lots of pages).
Thanks Sleepybunny - I printed out this document so that when the final review is published, we can see what suggestions were adopted, what was dismissed etc. No other way of being able to determine the mindset of those making decisions regarding our long-term health.
Sandracoull2 - this may not be useful to you immediately - but it could help you to see what the current concerns are, coming from support groups.
Every 6 months is NOT the NICE guideline ! Is this a deliberate lie , or wild incompetence ? Which ever it is disgraceful and can cause huge health damage .
thank you everyone I have been looking things up as suggested. Yes I do have the pins and needles in hand and feet very tiered have brain fog and poor balance. Yes my GP does get told but not sure she listens to me. I told her yesterday my hand are getting better after my B12 jab her response was that nice. I also have stomach problems and have been taking omeprazole for years. I thank all of the people who have read my plea and sent posted messages.
omeprazole is an awful drug for depleteing nutrician. Your stomach problems are probably due to thyroid issues and down to lack of acid rather than too much. My stomach problems loads better now I have my thyroid well treated. Post on thyroid uk as well to see if you can get some help with this.
PPI drugs have been linked in some studies to low B12 levels.
See section on Medicines in link below.
nhs.uk/conditions/vitamin-b...
This link mentions B12 deficiency as a possible side effect of long term use of omeprazole.
nhs.uk/medicines/omeprazole...
Quite a few on here have been told their gut issues were linked to high levels of stomach acid and then they found out in later years that they actually had low levels of stomach acid.
The symptoms of low and high levels of acid are very similar.
Have you asked your GP if it's possible that some of your symptoms could be due to low levels of stomach acid rather than high levels.
Hypochlorydia is the medical term for low levels of stomach acid.
Achlorydia is the medical term for no stomach acid being present.
This link mentions hypochlorydia and suggests a simple test which can show if low stomach acid is a possibility....the burp test.
drmyhill.co.uk/wiki/hypochl...
"Yes my GP does get told but not sure she listens to me."
I think putting concerns into a short letter to GP is likely to be more effective.
Things said in an appointment may get forgotten or not recorded.
Letter writing link below has letter templates covering a variety of situations linked to B12 deficiency.
Point 1 is about being under treated for B12 deficiency with neurological symptoms present. I think Point 1 might be relevant to you.
b12deficiency.info/b12-writ...
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised.
I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
Do you have any neurological symptoms?
Make sure your GP has a list of any neuro 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)
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist
Not been allowed injection of b12
B12 injection advice please
